Take a Walk on The Happy Side

Moved to Walkonthehappyside.wordpress.com

2011-01-17T03:19:00.001-05:00

Cold and lonely over here? We're having a grand old time over at Wordpress! And, until I get all the links to this site moved over (slow going), I'm going to continue to post my moved-to-wordpress message here. If you were a follower or a subscriber here, PLEASE go over to my new location at walkonthehappyside.wordpress.com and subscribe over there. I'd love the company!

BTW -- I'm blogging weekly on 5 Minutes For Special Needs and approximately monthly on Living with Special Needs now too. Check 'em out when you have the chance... and, thanks, as always, for reading.

xo maggie

We Moved To WordPress

2010-12-19T10:21:00.000-05:00

Visit us at Take a Walk on The Happy Side on Wordpress.

5MFSN Visitors

2010-12-04T21:07:00.005-05:00

Sorry folks, my old website is listed over at Five Minutes for Special Needs. We'll get that fixed asap. In the meantime, if you're looking for my newly migrated blog, I can be found tapping away these cold Winter days over at Take a Walk on the Happy Side on Wordpress.

Thanks for clicking through... BTW, if you like what you read over there, subscribe. (But don't subscribe here unless you want to receive this message over and over again.)

My Mini Happiness-Project Fitness Challenge

2010-12-03T00:49:00.000-05:00

Take a walk over to my new home at walkonthehappyside.wordpress.com to read about my self-imposed Mini Happiness-Project Fitness Challenge. Happy is as Happy Does!

Take a Walk Over to Wordpress

2010-11-28T06:52:00.002-05:00

Please visit us at our new home at Talk a Walk on the Happy Side at Wordpress.

Feeling Thankful!

2010-11-26T09:07:00.000-05:00

Re-POSTED FROM MY NEW HOME :
TAKE A WALK ON THE HAPPY SIDE AT WORDPRESS.COM

Everybody and his brother are writing Thanks-giving posts today. I’m no exception… EXCEPT, this blog is my happiness project and one of the tenets of maintaining my happiness is to always stay focused on all the wondrous things I have in my life right now. So for me, this day is hardly different from any other except I’m in good company giving thanks AND I happily share in a HUGE Thanksgiving feast with my family… and thankful for the opportunity to do so.

Ya know, it’s pretty easy to be thankful for the good stuff. “Thanks God for letting me win the lottery! Thanks for this big beautiful house I live in. Thanks for my good looks and big brains (or is that the other way around? LOL) It’s the gifts we receive reluctantly… the tough ones that we might think [at least initially] are a threat to our happiness and well-being that challenge our thankfulness. But I’ve come to believe those are the ones that give us the most to be thankful for. And those are the ones I’m especially giving thanks for today… Because in the throes of the day-to-day chaos of my life… those are the blessings I don’t always take the time to appreciate.

1. I am so unbelievably grateful for the extra 21st chromosome that My Boys have been gifted. These two beautiful Little Men have taught me more every single day of their short lives than I learned in all the years preceding the births of my 3 children. More about the world. More about human nature. And more about myself. I am a better, more patient and compassionate person grounded in the things that really matter in life because of them. They are masters of unconditional love, dogged perseverance, altruistic intentions, inspiring motivation, undying hope, blind faith, living for today, and doing… just because it’s fun. I would not change a thing about them… especially not that microscopic little third copy of their 21st chromosome!

2. I live in the heart of keeping-up-with-the-Jones’ territory. Never mind that I can’t compete in that race…. I have absolutely no desire to even try. My focus is on my relationships. My children. My husband. My family. My friends. NOT stuff. And, I am oddly thankful for the financial challenges I faced in my young life and for those I’ve faced more recently that not only taught me invaluable survival skills but also enabled me to embrace a more minimalist lifestyle. It was knowing how to survive with little, and knowing I would survive no matter what, that afforded me the option of leaving my high-paying job to stay home to raise my beautiful children. Certainly, this is a case of “that which does not destroy us, makes us stronger!” And I am thankful for the strength and knowledge that I call on every day not only to survive, but to thrive.

3. I’m thankful for my college education in Psychology (that’s an easy one) and for my personal experience in seeing the benefit of professional counseling (sometimes tough). Having someone with an unbiased, non-judgemental listening ear to talk with, someone whose knowledge of human behavior and ability to relate it to our own behavior to help us to see the folly of our own thoughts and actions is invaluable. I am of the firm belief that everyone can benefit from counseling and I have successfully instilled that belief in my Old Soul (which, thankfully, will serve her well in life). And I am eternally grateful for the amazing and insightful Dr. Briglio in Lynbrook, NY whose ability to see and translate what I have not managed to decipher in my life, in my children’s lives, and on so many fronts, is nothing short of amazing!

4. I am glad that I’m 48. That’s not an easy thing to say because I know that I’m getting old… And I loved being 28! But, if I found myself in the wondrous place I now occupy when I was 28, I’m pretty sure I would not have had the wisdom to navigate these sometimes shark-infested waters as gracefully (if I may be so bold) as I’m doing it now. Now if you know me at all, I’m not the “graceful” sort. And I’m not even hinting that I’m a graceful old sod now so much as I’m thinking this life might have been an insurmountable challenge for 28-year-old “Margie” but for 48-year-old Maggie with her just-another-bump-in-the-road point of view it’s no big deal. and I am grateful I am me now.

5. Whoever wrote, “with age, comes wisdom” was sooo right. So was the guy who said, “youth is wasted on the young!” and the one who coined the term, “if I knew then what I know now.” All really smart guys… full of hindsight. Yeah, 20:20 hindsight is good but being nearsighted about the present is better. I’m thankful for the ability to appreciate my sometimes shady past (only in my head, LOL), to NOT worry so much about what the future holds, and, most importantl,y to be able to bask in the sunshine of today… most days. In my children's movie, Kung Fu Panda, Master Ugway says to Po, “the past is behind us, the future is unknown but today is a gift… that is why they call it the present.”

So live for today and be thankful for it. There are many who didn’t get to live through today. Many who didn’t get to eat a Thanksgiving feast. Who didn’t share their day with loved ones. I wish you all a thankful and happy heart this Thanksgiving day and every day.

xo maggie

Welcome 5MFSN Visitors

2010-11-20T21:40:00.000-05:00

Welcome visitors from 5 Minutes For Special Needs and thanks for stopping by. Feel free to peruse the site and read some past posts. But, if you happen to like what you see and decide to sign up... please PLEASE P L E A S E... do so on my newly migrated site at walkonthehappyside.wordpress.com. You see, I've been having some "issues" with Blogspot's ability to see and track my subscribers. And, unfortunately, since they can't see you, I can't migrate you for this move.

This and the fact that today was my first post as a contributing author over at 5 Minutes for Special Needs necessitated the move... now! I don't want you all looking for me here at my old digs when I'm over at Wordpress sprucing up the site and posting my long-winded advocacy rants and strange nuggets of happiness wisdom going forward.

Like it or not, my new site retains the same name and content but with a slightly different, disheveled look that does, appropriately and unfortunately, mirror the state of my life just now. While I struggle to find moments to cram Wordpress For Dummies and update the new site, I'll continue to post on both sites... giving my faithful readers here a chance to Take a Walk over to Wordpress on their own time and terms.

So bear with me during my self-directed, trial and error, strictly-aesthetic make-over (pretty much how I address everything in life!). The look will evolve but my content will continue to be about my pursuit of happiness while facing the challenges of motherhood -- working 2 part-time jobs (as an inclusion advocate and a business editor/writer), re-building "this old house" and raising my 3 beautiful children: the venerable Old Soul and 2 amazing little men who share the same genes, including an extra 21st chromosome (aka: Down syndrome).

Thank you for stopping by. I hope you'll find the time to Take a Walk on the Happy Side with me over at Wordpress. I'll see you there.

Language Development Through Movies

2010-11-12T21:43:00.001-05:00

I'm sitting here, where I've been sitting most of my day, working on my laptop to meet a self-imposed but necessary deadline for one of my 2 new part-time jobs. The Boys, who are "suffering" on and off with a gastrointestinal virus (read: diarrhea) for the majority of 2 weeks now, have been marathon movie-watching most of the day... taking advantage of my distracted state.

I don't know about your kids, but mine get a lot of expressive language practice watching movies and repeating the narrative. They not only act out but speak the actor's lines... perfecting their articulation with repetitive viewing and rehearsal. I and my speech therapist approve... MOST of the time!

The caveat? You have to know what they're watching!

Garfield: The Movie is our fifth movie of the day and, as it's late, they've planted themselves right smack in front of the proverbial tube -- a misnomer for televisions that no longer have tubes -- and are gazing up intently, necks strained, at the over-sized screen... I note they're being relatively quiet which tells me it's time for bed.

Suddenly the following scene plays out: Jon is crushing on Garfield's attractive female veterinarian while Garfield is giving a cat-to-owner pep talking on the benefits of actually asking her out instead of making multiple unnecessary trips to the vet. The pep talk begins with a very positive rant until Jon is out of Garfield's earshot when the belligerent orange cat culminates with calling his beloved owner a "Schmuck". (I won't go into the meaning of that word here but suffice it to say it is not appropriate for anyone to say in good company much less 2 5-year-old little boys with Down syndrome.)

No sooner does that word boom out of our pseudo-surround sound system than both boys chime in together with absolutely perfect articulation..... SCHMUCK!

Huh? OMG!!!

Now if the Old Soul didn't make such a big deal out of it by drumming into their innocent little heads that this is a word that nice kids don't use; If I wasn't covering my face and laughing; And if they didn't know that shaking shoulders also means I'm laughing and trying to keep them from realizing it, they might not ever have figured out that this was a word the world, their big sister and their mama didn't really want to hear them perfect.

Ahh, but mothering and language development are imperfect arts! So if you hear My Boys use this nasty little word in the near future, please excuse them while we work on unlearning it.

"Mommy, Push Me High!"

2010-11-11T20:22:00.001-05:00

Special Exposure Wednesdays on Five Minutes for Special Needs!

The Power of NO For Women Who Do Too Much!

2010-11-10T21:02:00.002-05:00

I recently read that the key to happiness is breathing. Ha!

I think the RADICAL minimalists might have taken things just a bit too far with that statement! 'Cause if it was that easy I'd be living on Happy Street! But I'm not! Oh, I'm breathing, but it's the see-sawing between laughing and hyperventilating kind of breathing as my stress-levels rise and fall and my good humor ebbs and flows with the chaos of my life. Change can be good but it's not always healthy!

Years ago, I read a book called Women Who Do Too Much. Anyone remember that one? I don't recall the exact qualifying conditions or the recommendations... only that I was then and am still now one of those women. Back then it was probably because I wanted people to like me. Boy have things changed! NOW... I don't give a rat's.... ah, tail... whether someone likes me or not. NOW there's only one word that describes why I do too much.... KIDS! The Boys need.... The Old Soul needs... The Hubby... well, unfortunately, he has needs too but he's on his own 'cause the kids need so darn much from me. Add special needs to those needs and us gals have got stuff on our plates that we really just sorta CAN'T say no to. And when the good 'ol catholic guilt kicks in regarding how much -- or how little -- I do for my kid without special needs, I end up saying yes to a bunch more things I have no time to handle. And who's addressing my needs? Seriously!

My now school-age kids come with a whole new set of professionals pressuring me to do more.  The CPSE/CSE folks, teachers and therapists all want support through parental involvementt at home and in meetings that usually require preparation and cause added stress. Then there's the PTA, SEPTA and don't even get me started with the Girl Scouts who demand their chunk of us Women Who Do Too Much but offer a triangular badge instead of a little support. And if my poor husband wants a piece of me, he has to negotiate for it against school, sleep and the paying jobs -- yes plural -- I now hold to help our family financially instead of leading that leisurely life you see left-coast Hollywood Wives enjoying. The one that usually includes morning workouts with her private trainer, liquid lunch with the ladies and afternoon mani-pedis before calling to remind the Nanny to pick up her kids after-school! Yeah, that's not my life. I unintentionally limit contact with friends to grabbing a salad at Fridays once a year and, thankfully-rare, late-night girlfriend-to-girlfriend phone calls to ward-off those inevitable near-collapses when life hands you the last straw and the camel drops to his knees. Besides those luxuries... Ive barely seen my friends in ages or done something good just for me.

A man goes to work, comes home, maybe watches a little news before dinner, a little baseball after dinner and goes to bed when he gets tired. On weekends, he mows the lawn and watches some football. If it's on the calendar and his lovely wife-who-does-too-much has the time and energy leftover from all her other commitments, she might even let him take her out to dinner. That's living a simple, minimalist life, isn't it? And that's why the name of that book isn't Men Who Do Too Much! YES, I recognize that this is an over-simplified view that does not accurately represent the Sarge's role in our family -- though I'm sure he'd LOVE it if it did! This is absolutely NOT a DIG on my hubby or men in general but rather a DIG ON ME and Women Who Do Too Much! It's an outright honest admission from this particular Woman Who Does Too Much that maybe the men have a slightly better handle on all of this... Let's call it what it is... cr*p.

Maybe, my latest arrhythmia-causing last straw is a wake up call! The camel needs some life support and if she doesn't get it, things are gonna get ugly!

The key to Happiness is one word.... But it's not "breathe"... (THAT'S the key to staying alive, not to happiness.) For us Women Who Do Too Much the one word is "NO!"

As in... I could have said NO to the Social Worker at Mercy Medical Center, where The Boys were born, when she asked if could she give out my number to new parents of children with Down syndrome. But that would not reinforce the love and acceptance I have for my beautiful children with Down syndrome nor help others who find themselves walking in my shoes. So I said YES. Not a big committment and one that fits itself neatly into the nooks and crannies of my life without interrupting. I could have said NO to the CPSE/CSE committee chairpeople when they asked if I would volunteer as a parent-member. But where would I have learned so much about how my district doles out services to children with special needs like my children? And how would I become a known entity so they deal most effectively with me and My Boys. So I said YES.  I have the option of saying NO to the meetings that don't fit my schedule (an option I need to learn how to exercise). I could have said NO to the Girl Scouts when my Old Soul's former leaders up-and-quit. But then I'd be taking my lovely Old Soul on Mother-Daughter-brother-brother adventures instead of having fun with 9 screaming-but-very-happy little girls. Saying NO might have disappointed some of those little girls (unless some other Woman Who Does Too Much stepped up to deliver). But saying "NO" would have exacerbated the "I don't do enough for her" guilt of having 2 OTHER children who have special needs. And the forced schedule makes me do the things she and I love to do together but might not otherwise get around to because I'm an over-scheduled Woman Who Does Too Much... So I said YES and am proudly fostering the positive self-esteem of 10 little girls -- including my own daughter -- so maybe they won't grow up to be Women Who Do Too Much. And, more recently, I could have said NO to the two jobs that afford me not only a much-needed paycheck to help relieve some of my family's financial stress in these tough economic times but also gifts me the extrinsic sense of accomplishment and professional recognition that being a stay-at-home-Mom never does.... Hey, I'm sorry for feeling that way... but it's how I and a lot of women feel... sadly! Except for a Mother's Day card once a year, the compliments that sustain us as viable members of this society are few and far between.

While those are all things I could have said NO to but chose to say YES, in re-examination, I think I have pretty good reasons for sticking to it. So I'm not really rethinking those decisions for now because they're written in ink on my calendar already. But I am beginning to consider all the extra little unnecessary requests I've been asked commit to! NO to the Class Photographer role. Just another scheduling conflict that presents prep and post-work I don't want to nor have time to do! If I can get to an event with my camera, cool! If not, oh well! NO to the incessant donations and clothing pick ups for the War Veterans Fund, Lupus Foundation, National Patrolmen's Benevolent Association and any other callers. All great causes but I can pack up and donate on my own time versus theirs. NO to the PTA meetings and SEPTA meetings. NO to the Class Mother role or even the unofficial offer to "help out"! NO to the play date with the kid my child doesn't really like. NO to the Salesman wanting to meet about Special Needs Trust Funds (We have NO extra money right now anyway). NO to the CPSE/CSE meeting that just doesn't fit on the schedule that particular day. Saying NO doesn't mean saying NO to every meeting request, but NO to the ones that don't fit on my already too crowded calendar! NO to Facebook. NO to Twitter. NO to the cell phone. NO to texting. NO to the computer. NO to Netflix. NO to the telephone. NO NO NO NO NO!

My new Happiness Mantra is "Just say NO!"  This fosters my happiness! Relieves of my stress!  STOPS the arrhythmia's and strained phone calls to girlfriends. Stops the yelling. Eases the crazy schedule. And slows the constant race against time. It gives me a little wiggle room to relax and BREATHE! Ahhh, yes, the key to a long and healthy life! It affords me the time to watch a football game if I want to (LOL, I don't). To work in my overgrown, untended garden if I want to (I do).  Or maybe even to watch Lipstick Jungle. (I've never seen it but I think I might like it based on an ad I saw once.)

The first step is to contemplate the activities I've already committed to that I could drop without hurting my kids, myself or my family and to age-out my old YES requests off the calendar. Meanwhile, I have to plan for how I'm going to say NO to new requests that don't fit within my YES criteria. That is, I have to find a voice, MY voice, that's committed to saying NO to anything that doesn't enhance my happiness and/or improve my health (with cautious attention to requests that enhance my children's happiness and/or improve my children's health without jeopardizing mine). NO to anything that can't be finished inside of a random (read: one of my choosing) half hour time slot not currently filled by any other commitments already on my calendar. And, NO to anything that requires more than a half an hour of preparation or follow-up tasks. For example, attending my child's class holiday party is OK but committing to baking the cupcakes or downloading my pics to the yearbook committee within 2 weeks of the event is a NO. These self-serving criteria should pretty much leave me with only the necessary stuff for my children's and my health and happiness and might even allow a few impromptu dates with my elliptical machine and, if I really embrace the NO, I might even find time for an opportunistic date with the Sarge or an ocassional lunch with friends. Now there's a happy thought!

A Developmental Boost for Your Child with Down Syndrome (or Without)

2010-11-07T19:14:00.000-05:00

When it comes to my children -- 2 of whom happen to share identical genes including an extra 21st chromosome (aka. Down syndrome) -- I'll do anything to help them be happy, succeed on their own terms and to clear a peaceful path for them in life. But their path -- like every one's -- is bound to be a little different, especially given their special needs. That doesn't mean I can't facilitate their development just like and maybe even more than I do for my very special (but not special needs) daughter.

I"m talking about doing relatively simple, if not a tad odd things to help my kids achieve milestones and skills that I was told would be late, elusive, impossible. I never believe the naysayers. I believe in my children! So... at less than 6-months-old, before my babies could walk, crawl or roll-over, let alone jump, I bought a full-sized trampoline and put it inside my house so we could use it daily and year-round!

Why, you ask? Because the Boys' Early Intervention Physical Therapist told me that my babies could improve their balance and strengthen the muscles in their feet -- both critically needed for walking -- by moving about on a dynamic surface. She suggested giving them belly- and crawl-time on a large mattress... using extreme caution monitoring the edges to prevent falls. I gave this some thought and decided there's nothing more dynamic than a trampoline's surface. So I bought one that was only 18" off the ground and 8' round surrounded by a safety net with a closable entry. Then I assembled it on my indoor balcony right outside the kids' bedrooms. The shorter than usual height was critical for indoor use -- fitting well within our standard 8' ceilings -- and being well-placed and large enough (including a high weight limit) to fit several children plus adults, made it easy for everyone to use together multiple times daily. The Physical Therapist used it during her sessions too. And, we had belly time on it every day and read bedtime stories on it every night. We had naps and sleepovers on it. We belly-dragged and crawled on it. Laid on our backs and bounced our butts up and down. Laid on our bellies and bounced. Kneeled on all fours and bounced. Rocked and bounced, kneeled and bounced, sat and bounced and stood and bounced. You name it, we bounced. Eventually, we even did fancy tricks bouncing. Yes, even The Boys learned how -- jumping up and bouncing down to our butts, then up to our feet and down to our butts again. You know the move? We did the same bouncing to our knees. And guess what? With all that bouncing going on, My Boys rolled over at 6 months, crawled at 10 months and walked at 14 months. Might they have done the same without the trampoline? Maybe! Maybe not. But I'm a take action Mom and the action I took absolutely helped them develop better balance, stronger muscles, increased stamina and a love for jumping... all good! And that trampoline is still helping them with these skills today.

Interestingly, the prominent placement in our house definitely facilitated the use of that trampoline. Once relinquished to the not-quite-finished basement playroom, it's been used less often and that's not good. So, I'm in the process of rearranging my home to find another in-the-way spot for our trampoline. So far, my husband hasn't agreed to swapping the great room couch with the trampoline. But, I'm not giving up. NEVER give up!

Recognizing that not everybody has room or wants a very conspicuous in-house trampoline -- or if you decide this is just not your gig -- try putting a mattress on the floor or in a roll-away trundle along the length of your child's bed. At the very least, your child will have to walk across it to get into and out of bed every night and every morning, it provides cushioning and a safer distance in case of night-time or jump-time falls and it's a great place for Mom to grab some shut-eye during those middle of the night wake-ups. All the while, your kids are benefiting through improved balance and increased lower body strength from the dynamic surface.

Trying to sell the idea to a hesitant spouse or your internal nay-sayer? At one point in our learning to crawl, stand and walk process, I contemplated laying wall-to-wall mattresses across their bedroom floor. Doesn't that sound fun? Almost like a trampoline room! They'd have nowhere to go to avoid the dynamic surface and they could literally jump and sleep wherever they want. No cribs or beds necessary, just check your shoes at the door! A little crazy, sure! But from here, an indoor trampoline is an easy step comparatively speaking. LOL

For my now older and already-walking children with Down syndrome who have a slightly weaker gait, slower run and sometimes compromised balance, we still use the trampoline but we also challenge them with barefoot beach walking (walking in the sand). This -- which runners have known for a long time and I know, 'cause I used to be one -- is also really good for strengthening leg and feet muscles and improving balance. While being a lifelong resident of Long Island gives us seemingly never-ending access to sand and beach, the first time I dropped My baby Boys in the sand they hated the sensation of sand between their toes. How weird is that? Oddly, to a lesser degree, they start every new beach season with some trepidation. Acknowledging that their discomfort can seriously discourage beach walking, we found that feeding and chasing a pack of seagulls made them instantaneously forget all about the "yucky" feel of the sand on their feet. To this day, a big bag of bread or Tostitos still keeps the birds coming around and My Boys on the run... sand be damned. If you're landlocked, fear not, for those colder days when the beach is too chilly even for us, we came up with this solution. We sectioned off the part of our back yard surrounding the kids' play equipment, laid down weed prevention sheets and dumped a thick layer of sand on top. It's a great padding for falls and there's no avoiding it. The Boys have to negotiate the sand to get to the slide, climbing net and treehouse. And, on any given day if that's not enough motivation, kicking around a lightweight bouncy ball in the sand often does the trick. Even in sneakers, it does wonders for their balance and lower body muscle strength.

My Boys are big, healthy and physically active 5-year-olds. They're getting stronger and improving their balance every day. Meanwhile, I keep trying to come up with workable activities and methodologies to facilitate their development physically, intellectually and emotionally. As such, I plan to make this a series of posts sharing some of the proactive, out-of-the-box solutions we've implemented here in my home to facilitate The Boys' development in all areas and encourage their participation in activities they find less than desirable but are key to their ongoing development. Maybe one of these tactics will be just right for your home and your child's developmental needs. Or, maybe it'll get you thinking outside the box to help push your child's development.

If you've come up with something interesting, please share! I'm always looking for ideas to help get my creative juices flowing fast and wild with ideas that boost the ongoing development of my children with Down syndrome. I'd love to hear what you've done to benefit your child's physical, intellectual and emotional development. What traditional or non-traditional methods, activities and tools/toys have you tried to help your child with special needs be all they can be?

Down Syndrome Awareness: New Special Needs Blog & Post -- Inclusion, Kindergarten & Compromise!

2010-10-30T13:36:00.002-04:00

Did I mention that I've been invited to contribute to a new blog called Living With Special Needs? I have but less often than I want and need to. You can find me writing there up to two times a month along with a host of other bloggers for special needs. Definitely worth a visit. There's something for everyone living with special needs.

Here's my latest post on Inclusion, Kindergarten & Compromise!

Down Syndrome Awareness -- Be The Change!

2010-10-27T11:42:00.003-04:00

There's something I want each and every one of you to ponder and get back to me with your ideas and thoughts. This past weekend my family and I participated in the Long Island Buddy Walk at Heckscher Park in Suffolk County, NY. It was a beautiful day and there was a decent turn-out for the walk sponsored by Alexander's Angels.... But something was niggling at the back of my brain.

I couldn't help but wonder how an event like this raises awareness of Down syndrome in our society. Yes, the money raised goes to organizations like the National Down Syndrome Society and the Down Syndrome Advocacy Foundation among others that do a phenomenal job of getting the word out and supporting inclusion efforts that expose the masses without DS to individuals with DS. BUT, I have found personally that the most effective tool for raising awareness and acceptance in society at large -- thereby increasing opportunity for all -- is through exposure to people who have Down syndrome in the communities where they live, go to school and work.

If you want to change some one's antiquated thinking about what's possible for a person with Down syndrome to achieve, all you really have to do is to introduce them to and have them spend time with a person with Down syndrome... or two... or 200... and more. Over and over again.

Buddy Walks are held across the country and are attended, mostly, by the family and friends of people with Down syndrome.... All of whom are already aware of Down syndrome, have experienced the amazing things that people with Down syndrome are capable of achieving and know, personally, what people with Down syndrome give back to the world through their very presence. In this sense, it's a sort of segregated event. At the very least, it's fair to say these events are NOT attended by OTHER people who have not yet been touched by Down syndrome, and who really need to know what we families and friends already KNOW!

Reach Farther

As a kid, every year for as long as I can remember, I participated in the 20-mile March of Dimes Walk-A-Thon. Yet, I have no birth defects -- nor do the friends and family who walked with me. Yet, there we all were, walking, raising awareness along with the thousands of others who walked... and we were learning, ourselves, about birth defects and what the March of Dimes was doing to help. How can we do that in the Down syndrome community? How can we make the Buddy Walk an integrated event where people with DS walk side-by-side with thousands of people who do not have DS, through the very communities we share. In the very communities we are trying to raise awareness and foster greater acceptance! How do we grow these local Buddy Walks into events that people not-yet-touched by a person with Down syndrome are compelled to participate in? If we can just get them to show up, we can teach them so much... through exposure to people with Down syndrome.

Exposure breeds acceptance and acceptance breeds inclusion.

We need greater visibility with the people who live and work in our communities who have not yet been touched by a person with Down syndrome.

Let me start you off with a few ideas... Maybe the sponsoring organization can run a 5K side-by-side with the Buddy Walk to attract the thousands of runners that are always looking for the next charity race to run but who might not otherwise come out for a Down Syndrome Buddy Walk. Then Buddy each runner with a walker with Down Syndrome so their number is accompanied by a picture and profile of someone with Down syndrome. Let's make it personal! Or, how about holding the walk in a shopping mall (inside or in the parking lot) where mall "walk-ins" gain exposure to this wondrous population and can participate in the festivities and learn. Exposure of people with Down syndrome to store personnel increases employment opportunities in our communities while these businesses can help sponsor the event by offering discounts and/or a percentage of sales to support the cause. The NYC Buddy Walk included live music -- Actor Chris Burke (DS) and his band -- and carnival-like games and activities where members of the community who were just passing through Central Park were hooked by the festivities and inadvertently mixed with the Down syndrome community... and learned! That's increasing awareness and still raises money and supports the advocacy organizations of choice.

Come on folks.... Put on your thinking caps and let's hear it! I want all your crazy ideas so I can pass them on to the powers that be here on Long Island. I'll compile them and publish them and we can each start a grass roots effort to affect greater awareness of and greater exposure to people with Down syndrome in our home communities. Much greater! And, if the folks in charge are not willing to listen and grow, then we'll have to do it ourselves. Each of us parents and friends of people with Down syndrome need to become the catalyst that brings greater awareness and acceptance of all people with Down syndrome in our communities. And in every community across the United States and throughout the world. It starts with one parent, with one new idea implemented at the local level and it grows until the CHANGE we're looking for is realized worldwide -- to the benefit of our children with Down syndrome as well as to the people they touch.

"You must be the change you wish to see in the world." - Mahatma Gandhi

Down Syndrome Awareness -- The Dreaded R Word Spoken In My Very Own Home

2010-10-24T10:08:00.001-04:00

NOTE: Sorry I've been incommunicado in the midst of the 31 for 21 Down Syndrome Awareness Month. But, as Kimba says over at A Soft Place, sometimes it's OK to reprioritize and put the people who matter most in our lives at the top of our priority list.  I've started TWO new part-time jobs this past week (which I'll tell you all about another time) and my "free" time has all but disappeared so I've had to reprioritize. I can't promise a post a day because of all these changes but I'll do what I can.

The Boys' Birth Day story I promised is coming and it's so long it could probably be broken out into 31 posts all by itself.   But first, something incredibly embarrassing and real happened to me just last night that I HAVE to share!

Right now, I owe you all a heartfelt apology!

THE DREADED R WORD WAS SPOKEN IN MY VERY OWN HOME... BY ME!

As a busy two weeks of work seized me, I failed to get birthday party invitations out for my daughter's 9th birthday which has been on my calendar for many months but not on anyone else's. With such short notice, many of our intended guests couldn't make it so we pushed it out until next Saturday. But, our favorite family of snowbirds are beginning their southward migration today (the day after the party) and we didn't want to miss the opportunity to get together with them one last time.

So, we planned a tiny little gathering with this family and another to share the day and say goodbye. At the end of a wonderful and relaxing celebration, during the long-goodbyes that always mark a fun time shared with good friends, the children began demonstrating their best wiggle-walk, while we adults bid our farewells intermittently engaged in conversation about the odd stride runway models use as they come down the catwalk. The kids imitated smooth gliding wiggles to lots of giggles and that's when it happened... I said it, "It's not smooth like that. It's [instantaneously picturing the weird stepping pattern the models use] retarded."

For a split second, the whole room was frozen in SHOCK -- I was in shock -- and then a cacaphony of gasps was heard!!!! Seriously. I don't know how that word came out of my brain let alone out of my mouth!  And YES -- my dearest friends APPROPRIATELY AND IMMEDIATELY called me on it! ALL fingers pointing at me. My friends and their children all yelling at ME and saying, "HUH!!!! YOU SAID IT!" Of course, being our close friends they've spent time attending to and changing their vocabulary as necessary and teaching their children not to use the R word for all the reasons we parents of children with special needs give everyone for not using it. The other family present that was sharing this special day with us are long-time, dear friends of ours as well... Who also happen to have a child with special needs. And they too, called me on it. Just as shocked by my use as I was! My husband was stood silent. Yes, equally shocked because in the fifteen years he's known me, he's never ever heard that word pass through my lips except in relation to the recent Ban The R Word campaign. And, I can tell you in all honesty, until last night, I NEVER used that word before. I never even think it! I didn't ever use it as a kid having been taught early on about the hurtfullness of name calling and being exposed early to people with special needs. I had good friends with special needs. I was a companion to a young man with special needs. I knew their innate intelligence and I fought, even as a mere child myself, for their rights to be included in the world... just like everyone else. And, I NEVER EVER used the R word. Not as a child and not as an adult.  Not before and not after my beautiful children were born with an extra 21st chromosome. It NEVER slipped from my mouth! EVER!   Until last night! I can honestly say, I don't know where it came from in my brain. And, I'm embarrassed, MORTIFIED actually, that I said it last night.

I won't make excuses like Jennifer Anniston. I can't say it happened because I was overly tired and under a lot of stress (any more than I typically am). I am all of those but that's no excuse for her or for me! But I can say that when I wanted to describe the strange way these skeletal women walked down the runway with their stilted and unnatural gait, that's the word my brain chose. It was just there in a split second. Just EXACTLY the way I HATE to hear it used... Unfavorably comparing someone "typical" to someone with intellectual challenges. I am being honest here. I AM MORTIFIED that I used it! And the only explanation I can come up with is that all the writing and conversations and constant talk about NOT using the R word actually put the word into my brain's bank of words available for use... a place it had NEVER been before.

In a long-ago post, I'd written about rarely ever hearing that word in polite conversation because the people who speak that way would not be in my circle of friends and family. So, never hearing it being used, meant it wasn't a choice in my brain. There are lots of words I don't like and don't use. Words I rarely if ever hear because the folks around me don't use them either. Otherwise, they wouldn't be around me. But, with the worldwide campaign, the R word has become a regular topic of conversation in my world and, because of what happened last night, I'm not sure that's necessarily good.

In trying to understand my incredible gaff, I've decided that perhaps it's similar to the argument made against violence on television and in video games which says that if you see it and hear it on a regular basis, it becomes part of your available-for-use repertoire. And this is exactly why I totally agree that the R word should be banished from all written and spoken use. And, this is why I'm RE-taking the pledge to ban the R word from MY vocabulary. The first time I took the pledge, I thought, "This'll be easy. I NEVER use that word!" But I hear it more now than I ever have in my life and so, I guess, when push came to shove, there it was coming out of my own mouth! Well THIS time, I'm taking the pledge to not EVER say the R word again! I'm not going to speak it or write it! It's GONE from my vocabulary! I'm forever BANNING THE R WORD from existence in my brain so it never has the opportunity to slip from my mouth again!

I recently wrote about not calling someone on their use of the R word. Well, I've called MYSELF out very publicly here. I do not want you all to think I'm a hypocrite. I'm human and I made a mistake that I'm trying to understand so it NEVER happens again! I offer you each a personal and heartfelt apology for using the word in such a disparaging way.  I meant no harm to you or insult to your children but I know that's exactly what I've done. Harmed and insulted! I slid down the slippery slope and now I need to make the slow and embarrassing climb back up into the good graces of polite society. I was wrong and I pledge to each of you, I will NOT do it again. EVER!

Down Syndrome Awareness -- A Second Child and Then Some

2010-10-16T11:52:00.001-04:00

THIS story, the one I'm about to share, chronicles the wave of emotions I FELT about the miraculous little babies that came to grace my life forever just five short years ago.  It's an honest account of a string of difficult days that ran together during a very emotional time in my life... my pregnancy with The Boys. There was no Down syndrome to consider at that time. That didn't come until much later. Just the existence of 2 Beautiful Babies who turned my world upside down in so many ways. And then turned it back, right side up, on me. It's about how they came to be culminating with their first day on earth, outside of their mama's womb. It's an emotional account, not a list of historical facts -- though they're here too. Because the development of a life (or 2) is an emotional roller coaster. The birth of a child (or 2) grants us mothers an active role in helping God perform his greatest miracle. It's an experience that rocked me to the very core of my soul. And the little details -- a second fetus, a not-quite-right measurement, a shadow on a sonogram, a line across the palm, an extra chromosome --sent my emotions soaring in directions where miracles are sometimes forgotten.

I knew I wanted a second child -- it's what the Sarge and I always talked about -- but I thought I'd check in with the Sarge, to give him the option to stick with the one child we had... or go for the sibling we'd always dreamed of. The house is a wreck -- in mid-construction. And, I think I'm OK with stopping if he wants to. After all, we're in this together... though secretly I want him to say let's go for it. No sooner do I hear the magic words than I'm elated to be expecting my second child. Humorous thoughts of my oldest sister and how quickly she conceived dance merrily in my head.  Honestly, I'm relieved that it happened so quickly... And just a little bit concerned that it happened so quickly. After all, I want JUST ONE MORE child to complete my family and being so fertile at this point in my life is a bit scary if you catch my drift. Note to self: ask the OB/GYN at our first visit about really reliable birth control. I can't have this happen again at my age.

I've brought Grandpa along to watch My Old Soul while the midwife confirms what the dipstick has already revealed. As I sit waiting, gown cinched modestly under under my butt that hasn't started expanding yet from pregnancy. I'm swinging my legs and disinterestedly perusing the assorted posters that adorn the walls of the examining room. I'm happily pregnant! I come across one that depicts the bi-weekly growth of a developing fetus. As I examine the 8-week picture, an asterisk notes that the second dark spot in the photo is a cyst. I pay no mind as the door swings open and Betsy, the midwife who delivered the Old soul, enters with a smile. I'm excited because I know that seeing the ~~peanut~~ baby that's growing in me for the very first time makes it real. She waves the magic wand over my belly and shows me the baby... Yes, it's real. Then I see the dark spot and a wave of fear grips me. It's an ovarian cyst just like on the poster! OMG, will it endanger my new baby? But before the thought has time to morph into words Betsy says, "and there's the other baby!"

WHAT? NO! She's talking but it is not really registering. It's no longer about me. It's more like a passing conversation with a stranger. She continues waving her magic wand. But she can't make it go away. She rambles on, "Do twins run in your family? They look good and healthy. Both measuring right about 8 weeks. Perfect!   They're in two separate sacs. That's good." Oh, I think, and manage to choke the words out of my still-in-shock brain, "then they're fraternal?" Not necessarily! She explains that 2% of identical twins split in the fallopian tube and attach to the uterus wall independent of each other, in their own sacs. Their development is healthier this way because they're not competing for the single food source provided by one sac. We won't know for sure until they're born whether they're identical or fraternal. She knows me. She knows I won't find out my baby's gender.... correction: my babies' genders until their birth. Oh my God... Twins!

[When I was a little girl, I thought having twins would be cool. As an adult and mother of one, I flip flopped on that and felt strongly that one baby at a time was more than a grateful mother could ask for. Not twins! Please, not twins!]

I'm laughing with Betsy, explaining there's only one set of distant identical twins in my mother's family. But it's a detached social laugh that has a tinge more worry than sincerity. I hope she doesn't notice.

In the waiting room, feigning my own excitement, I tell My Old Soul who is beyond excited... And I tell my father. It's appropriate that he's the first to know.... again. He was the first to know when we were expecting our beautiful daughter - a hint whispered in an airplane over the Atlantic Ocean on my way to fulfilling a childhood promise I made to him to take him to Ireland one day. HE laughs heartily while I'm still in shock... at me being in shock. " It's just that you plan for everything and this was totally off your radar!" I show the oldest and youngest members of my extended family the sonogram picture... My Old Soul counts as she points to the floating peanuts "one, two!" To me, they look like enemy submarines honing in on their target on an under water sonar. I can almost hear the beep beep beep while my daughter's and father's voices seep into my brain from afar.

Not twins! Just one. I want just one. I don't want three children. Everyone complains about 3. 3 is too many! Just then I recall my sister's concept of being earth conscious by just replacing oneself and one's husband... having just 2 children.  Too late for that, I think! I drift, like it's not happening to me. I'm in a place I'm not familiar with. I've seen others here but "whoa is me" is NOT my style... Yet here I am.

Over the course of the next few weeks, as I tell people that we're expecting twins, I feel only as if I'm trying on a shirt I didn't really like when I saw it hanging on the rack. As if I can take it off and put it back if it doesn't fit me in the Try-on Room. At this moment, when I look in the mirror, twins don't fit me. I read about the disappearing twin syndrome and think maybe that will happen to me through no fault of my own. I'm guilt-ridden for thinking it but I don't want to do this. I don't WANTto have twins now. I want just one baby, two total.  Outwardly, I joke with folks congratulating me, "I always said I wanted 2! Perhaps I should have specified two babies not two pregnancies!" LOL... but I'm not laughing on the inside. I find myself feeling devastated while all sorts of women confess to me that they always wanted twins. And I think I used to be one of them... but not anymore. I see a neighbor and I tell her. She must see it in my eyes, the pain and confusion I'm feeling.  She responds with the most honest words I'd heard in 2 weeks, "Oh you poor thing!" and I start to cry. THAT'S how I'm feeling! How am I going to DO this? I work full-time. I already have a 3-year-old. My home is under massive construction. One baby! ONE Baby! ONE BABY!

At 10 weeks, on a crisp Autumn day, I'm working outside in the yard when I feel that telltale gush of blood that every woman knows too well. Only I'm pregnant and I'm not supposed to be feeling that for another 8 months. Once again fear grips me. But this time it's more tangible. Please GOD, don't let me lose these babies. For the very first time since the news that I'm carrying twins I realize I DESPERATELY want my babies to survive. I want my twins!

I'm still bleeding when Betsy tells me that my uterus is like a knitted sweater with a hole in it and it is unraveling. Bedrest is the only treatment. My body needs to mend the hole or I'll lose the babies to spontaneous abortion. Suddenly, it's all I can think of. I need to rest... but I have a 3 1/2 year old and she doesn't understand so I split my time as my soul feels torn in two. Save the babies developing in my body. Live for the one I have standing, smiling in front of me. Weeks pass and I bleed intermittently. I'm feeling good and bad. Worried and content. I'm having twins and I'm OK with it now. More than OK. I desperately want them... my beautiful babies.

I've stopped working on the house and the construction comes to a grinding halt. I've stopped exercising as my belly grows... explodes with twins! I've stopped almost everything by the time the bleeding finally stops after nearly 8 weeks. FINALLY! It's my time to enjoy the miracle. I LOVED being pregnant with the Old Soul. But this has been so emotionally challenging already! So fraught with ups and downs. I'm looking forward to relaxing. Enjoying. Breathing. It's January and I'm barely 5 months pregnant. Good news, I've stopped bleeding!

I'm beginning to let myself guess at what my future might hold. We're discussing names. Two boy names, two girl names, one middle name. But they all have to go together somehow. With the Old Soul, we knew her name before the Sarge and I even married. At her birth, we had no boy names and thought we'd look foolish if she was a boy. She wasn't. This time, we have 2 boy names but can't settle on the girl names. We need 2 that go together and one that goes with one of our boy names. I'm anticipating a boy and a girl but the names don't seem to fit. When I put them together, there's always something not-quite-right. Then the sonographer notices an anomaly. Something not quite right with the babies' brains.   My fear returns. It's another sweater unraveling but I don't know how or why.

Test after test shows the same thing. We measure over and over again and the left ventrical is enlarged. Growing. Potential diagnoses are bantered about like wild accusations. Like I've done something to make this happen. I secretly wonder if it's those first two weeks when I wished one of my babies would disappear. I want them and now the universe won't let me have them. Punishment. I'm overwhelmed and underwhelmed by each diagnosis. Specialists are rushing the same results to me over and over again. Enlarged. ENLArged. ENLARGED. I have a choice. I don't take the out. There is no out for me. Sarge and I pursued this pregnancy purposefully. I fought an emotional war with myself early on to get to this point. I WANT these babies. There is no going back. I want them. I WANT them.  Then someone sees white spots on their brains. "Calcification. Hardening. It's a virus. They're dying. They'll be dead at birth. Stillborn. If not, it will be a painful life followed by a quick death for them. They'll live a very short life as vegetables. It's viral infections in their brains!" More tests but I know -- I KNOW like a mother knows -- that I don't have the viruses they're talking about. I KNOW it. Still, they all tell me there's something wrong. Something dreadfully wrong. All but one, who whispers that she doesn't see what they see. I cry.  A LOT! I sit quietly tucked inside myself at big family gatherings. Someone yells at me so I leave. I don't care what she's talking about. She doesn't care that my babies might be dying inside me. I can't think let alone deal with the petty emotions she's feeling.. I am all alone as I take in one bad diagnosis, one bad guess, after another. "Cyto-Megalo Virus. Toxoplasmosis. Microcephaly. Hydrocephaly".  There's a shadow, a hole, in one baby's heart. It's a marker for Down syndrome. Our first and only! Two weeks later it's gone, just like our favorite sonographer, my one ray of hope, said it would be. "These things have a way of resolving themselves" she said. The measurements of their brains, the disparity between right and left ventricals grows. I take care of my sweet Old Soul and go through the motions. With conviction, I tell the medical profession en masse; that it is what it is meant to be and I quietly try to convince myself of the same as I feel the sweater unraveling. Whatever happens, it's God's will. I know that I have no control. Except for the decision to continue the pregnancy, I relinquish all control.

They are real to me now. I can feel the babies kicking. They roll like waves across my belly. It's as if they are wrestling over a tiny blanket they might someday share in a bed. When I sleep, they play but I've stopped playing. My faithful old body is giving out. In the pool of diagnoses, my body is contributing it's own. Torn rib muscles from a hacking seasonal cough and sprained back muscles that begin to spasm all from carrying the weight of twins. The orthopaedist prescribes a belt that lifts the weight off of my back and puts it on my shoulders. My shoulder muscles are sprained now too.   I feel like any effort is futile so I do nothing. I'm in more physical pain than I was when I naturally delivered the Old Soul without an ounce of pain medication. When I'm not sitting on the couch, I'm blindly, painfully going through the motions. Yes, doctor. Yes doctor. Yes doctor. One tells me to get off my feet. Lay down with my feet raised to keep the swelling down in my ankles. The next tells me to sleep sitting up to keep the strain off of my back and the pressure off of the babies.  Every other night I sleep the way each one wants me to. Every other night I pray and cry, asking that my babies be spared all these terrible things the multitude of medical professionals have predicted. One Perinatal Specialist says I'm making the right decision. He says that we're in a unique place in medicine just now. A period when medical technology has surpassed medical knowledge and they are all just making their best educated guesses at what it may mean. I think, they don't really know any more than me.

In the midst of feeling utterly lost at sea, The Sarge and I get our first hint that the babies might be identical. Why else would they both have an enlarged left lateral ventrical? This is the only explanation we can come up with... But now I feel sad that I might be carrying identical twins that will not survive their own birth. I share these words with the people I love and who I know love me but I carry the burden and the weight of them all by myself... deep in my heart.

I am 32 weeks pregnant with twins. I survived the twin shock that gripped me heartily those first two weeks. I weathered a ruptured subdural hematoma that threatened to unravel and spontaneously abort them. I managed to get the doctors to stop testing me and to prepare for whatever might happen at their birth. I can hardly walk, sit or stand without excruciating pain. I'm huge. HUge. HUGE! And I have 8 weeks -- the growth weeks -- left to go. The left side of their brains are still enlarged and I'm still told there's a viral infection causing hardening of the brain tissue. Otherwise, "the babies look good". They're growing steadily. Measurements are consistent with 32 weeks. We're moving right along... But then they're not. They stop moving.

I haven't felt them move in two days. I can't help but wonder if this is it. The end the doctors had warned me about. Still born! I've heard stories about women having to carry and birth their dead babies. I hope this doesn't happen to me. I successfully convince myself that maybe it's just too tight in there. Everything is OK. I can barely move myself, how could they possibly move when they're all scrunched up in there? I tell Sarge I'll call the doctor in the morning but the Old Soul's nighttime potty routine overlaps with mine and together we see that I am bleeding again. Spotting.

Betsy casually tells me to go into the emergency room and get on a fetal monitor to make sure the baby's aren't in distress. I hear the nervousness in her voice and I'm sure she's trying to hide it from me. I've already been through the ringer so it barely registers. I know I should have felt that old familiar fear but I don't. I feel calm. I reassure the Old Soul that everything will be fine. Don't worry! Daddy will stay with you. It's bedtime! I'll go to the hospital myself and be home in an hour. I've convinced myself -- with no assistance from the medical community whatsoever -- that it's nothing. Just pressure from carrying twins who are pushing at the gate. On the way to the hospital, I call my mother just to let her know that if I'm wrong, we may need her help tonight. I tell her I'm OK. Really! I just might need someone to watch over my Old Soul in my absence... If Daddy needs to come be with me. If it happens, I think, it will be the first time in her short life that I'm not there for her.... But it will not be the last!

Their BIRTH Day to come...

Down Syndrome Awareness -- A Person's Worth

2010-10-15T01:33:00.001-04:00

A person's worth is not determined by their position, wealth or IQ score

but rather by the profound impact he has on those around him...

...and on humankind!

This is true for those of us with 46 chromosomes...

as much as it is for those with 47!

Down Syndrome Awareness -- Prevention?

2010-10-13T15:05:00.001-04:00

(Republished from an earlier post written before anyone knew that Take a Walk on The Happy Side existed.)

We are all inundated by telemarketers with requests from various organizations fundraising on behalf of their worthy cause. Funds collected are then spent on various efforts to raise awareness; to advocate on behalf of those afflicted; and to conduct research to better understand, treat, cure and, ultimately, prevent the disease in question. Like most, I give what I can to the causes that I believe in and to the organizations that I trust.

However, I recently found myself troubled by something pertaining to fundraising on behalf of people with Down syndrome. As I mentioned above, research generally includes scientific understanding of the causes and effects of the disease or disorder, with an eye toward treating and curing those afflicted and, ultimately, to preventing the disease or disorder in question from occurring in the future. That said, the question that troubled me is this: what is the ultimate goal of Down syndrome research? I am absolutely in support of a deeper scientific understanding of the causes and effects of DS. I am absolutely in support of researching better treatments, and ultimately cures, for the negative symptoms or health issues that people with DS may experience. I suppose, curing a person with Down syndrome would mean being able to remove the extra chromosomal material from any and/or every cell in a persons body before it has any negative affect, or reversing the negative affect that extra chromosomal materials has on the individual.

But, here's the part that bothers me a bit... Tell me, what does it mean to prevent Down syndrome? To keep it from ever occuring would require knowledge of exactly where and when that first accidental over-duplication of the 21st chromosome happens so that you can undo the mistake and then allow normal duplication and development to continue without further interference thus avoiding the development of an individual with Down syndrome. That would be extraordiary, wouldn't it? But I suppose knowing that would be like knowing exactly when one cell splits and becomes identical twins. I'm as amazed as the next guy over the incredible leaps and bounds science is making every day but we're not there yet. And, I'm not sure we'll ever get to what I've just described. Which is just fine with me. The even more bothersome side of preventative research might mean that we find a way to detect the 21st chromosome over-duplication error in days-old fertilized eggs or fetuses and terminate the development* to prevent them from becoming a person with Down syndrome. As it is, statistics site that 92% of all fetuses diagnosed with Down syndrome are terminated. And, yet, Down syndrome continues to exist.

But, let's say we succeed in preventing Down syndrome this way. Eventually, people like my beautiful Little Men would no longer exist in this world. I simply cannot imagine how our world could be a better place without the likes of my children. My Boys and all people with Down syndrome teach us so much about acceptance of human differences that extend so far beyond this one affliction. My Boys help me to focus on my blessings.

I'm not suggesting we don't do the research. I'm just pointing out a troubling science-gone-bad angle. Troubling for me anyway. But then, maybe you'd have to know My Boys -- or someone else with Down syndrome -- to really understand my trepidation.

Would the world be a better place if people with Down syndrome no longer existed?

* Note: I am not arguing for or against abortion rights. That is an individual issue and choice. I am just making an observation as it relates to the ongoing existence of people with Down syndrome.

Down Syndrome Awareness -- Lessons In Advocating For My Children With Special Needs

2010-10-11T11:11:00.001-04:00

We learn so much in school from our friends as much as our teachers. So much more than just academics. Meeting up with my old high school chums again afforded me a few new observations pertaining to advocacy:

Advocacy Lesson #1: A few of my friends called yesterday, after reading my post, asking if they were the ones who slipped up using the R word. They were NOT the ones... But Holy Cow I'm touched and impressed by the fact that you cared enough to call and apologize just in case it was you! Interestingly, the actual folks who spoke the dreaded R word to me did not comment, send a message or call! Perhaps they didn't see themselves in the story, were embarrassed, insulted OR, since I recognize that my blog's not the daily news, I guess it's possible they missed my post (though so many of my classmates were on FB looking for pics of the event).

Suffice it to say that this was a most interesting advocacy lesson for me and I wanted to share it with you all. Though I believe my post reached a few more people (other than the culprits), making them think about their choice of words and how they might have offended the likes of me (NOT an easy thing to do as I'm SO not easily offended! And, in truth, I was less offended than surprised when I heard the R word used!) The thing is, it appears I failed to reach those who actually used the R word. That, in itself, is catalyst enough for me to make sure that, in the future, correcting the gaff in real time is key to stopping the use of this derogatory word that fills the hearts of so many parents of children with cognitive disabilities with dread.

Advocacy Lesson #2: It was so nice not to have to explain myself and the gory details of my life to every other person I met [again] after 30 years. Sometimes I get tired of hearing the gasps and the "I'm so sorry" comments that often come along with letting people know that My Boys have Down syndrome. Once I get that reaction I HAVE to go into advocacy mode and explain... It is NOTHING to be sorry about. I'm NOT! I love the living daylights out of My Boys and my daughter just exactly the way they are. I'm a better person for having these beautiful children in my life. And, hopefully, when I'm gone, I'll have made a difference in educating a few people about what it really means to love and live in this world with someone who has Down syndrome. Yes, when the conversation turns naturally to it, I openly discuss the fact that My Boys have Down syndrome. No, I never hide it. Why would I want to hide anything about my absolutely amazing little boys? I take every opportunity to advocate for my children, exposing others to the real face of Down syndrome versus some blatantly incorrect and outdated text book version they might have learned years ago. I can't help myself. THIS is my life. This is THEIR life! Advocating makes it better for everyone. So when the conversation turns to it, I willingly step up on the soap box.

Still, sometimes, it's just nice to be Maggie. And, thanks to Facebook, so many of my classmates already know about my beautiful children and my grateful attitude about having them in my life. As such, it was nice to just be me and leave my soap box at home for a night. Even us parent-advocates deserve a night off once in awhile!

Advocacy Lesson #3: I am a parent. I do what I do because my children need me to do it. It's that simple! I really do appreciate all the compliments about my efforts on behalf of my kids... And about how amazing My Boys are. They are, aren't they! (You should meet them in person!) But, the truth is -- and every one of us who have children with Down syndrome know this but those of you who don't might not -- I am doing just exactly what every other parent does... Which is everything and anything that my children need me to do to pave a peaceful path for them in this world. Is that not so? When someone says, "I don't know how you do it!" my answer is always the same, "Ya do what ya gotta do!" I believe that those of us with kids are parents first and foremost. Your kid is shy so you plan more play dates for him. Her kid isn't good with animals so she watches him like a hawk when they encounter anothers' pet. Their kid struggles with math so they find her a tutor. The neighbor's kid has a peanut allergy so their epi-pen is ever at the ready. My kids have Down syndrome so I get them the help they need. It's only a big deal if you make it so. I don't! You see, my kids are JUST like yours with their own little idiosyncrasies that I try to address any and every way I can. I am a parent!

__________

Yeah, it's a funny little life fraught with minor details that make us all different and great big similarities that make us all the same. We're all in it together and doing it the best way we know how. Each in our own unique way. To all you parents who advocate for your children with special needs, keep up the good work. To all you parents who don't have children with special needs, know that the rest of us are just like you. Our kids are just like yours. Our lives progress one day at a time with the sun rising in the east and setting in the west. We all worry about our kids, their health, their education and their future no matter who they are or how many chromosomes they have.

P.S. Thanks, my friends, for all the compliments on how I'm handling my journey. I really do appreciate your recognition as it absolutely does help to keep me going when the going gets tough... As it does every once in awhile for all of us (special needs aside). That said, my hat is off to you and your parenting skills and style too. Every parent I encounter has something to offer that helps me as I travel my path. God knows it's not always easy no matter which children you've been gifted... but it is always worth it! We've all heard the saying, "there's a hundred ways to skin a cat" (if that's your thing). Well, there are even more ways to raise a child! I recently heard that, in child rearing, you only need to get 40% right to raise a reasonably well-adjusted child...

The trick is figuring out which 40%! (LOL) Good luck and enjoy your journey!

Down Syndrome Awareness -- Using The R Word -- Be Mindful of Who You're Talking To

2010-10-09T15:31:00.224-04:00

In the midst of the fun, over the din of the Disc Jockey spinning hits from 1980 at my 30th High School reunion, right there in the middle of polite conversation with me, two of my classmates let the R word rip. For the first time since having my beautiful 5-year-old identical twin sons who have Down syndrome, I did not correct the culprits who used the offensive term... both of whom know me and know about My Boys through Facebook. It HURT me to hear them use the term. So, why didn't I call them on it? Well, I didn't want to get into it in the middle of a party. I didn't want to offend. I didn't want to spoil the fun... though it was spoiled for me. Sadly, my opinion of each of these highly educated people fell a little bit last night.

Perhaps by telling the story here, you might recognize yourself and go forth to use the R word no more:

Poking fun at yourself when you attempted but failed to recall something you once knew, you laughed and said, "... I'm retarded. Ha ha ha." When I didn't acknowledge your comment but chose, instead, to stare blankly into the middle distance because I just couldn't speak through my cringed lips, you clarified, "Yeah, I'm totally mentally retarded when it comes to remembering things. Ha ha ha!" I continued to avert my eyes, to not acknowledge, to swallow, to breathe, and not correct your misspeak in the midst of a good party. I could have. I should have. But, I know you, you're the type that would be totally insulted at being corrected... Then again, you didn't mind insulting me! Besides, there's a time and place for everything.... except for the R word. There's no appropriate time or place in polite conversation for that word anymore.

Yes, you know that I have children with Down syndrome. But, I guess, what you don't know is that the way you put yourself down using the R word, is painful to me. To you it was a joke. Yeah, I get it! But, comparing yourself favorably to people with intellectual disabilities...to people like my sons.... ISN'T FUNNY. You don't know that every time I hear the R word I feel as though a knife is being twisted in my heart. My friend, you are insulting my children when you use this term! You are making fun of my beautiful and innocent little boys whose intelligence outshines any IQ test score every day of the week.

Let me tell you first hand, Mom's like me don't think it's funny to call yourself or anyone else a retard.... I know that you meant it as a joke, as a put-down to yourself! But, that's exactly the problem! You're saying that being intellectually challenged makes you less than the rest of us. Puts you into a group you would never want to belong to. Puts you in a group with My Boys. And therein lies the insult.

No, I have no chip on my shoulder. If you know me at all, if you've ever read my blog, you know that my acceptance of my children is total. No, I'm not one of those people waiting to be insulted. As a matter of fact, I generally avoid people who insult me, who insult my intelligence or that of my children. But you, YOU are my friend. I didn't expect it from you.

So, I invite you to come and spend some time with my children or others like them. See the incredible beauty and love that I see. Know that they are so much more than an IQ score in some "educated" person's file drawer. Then, when you've come to know them and love them the way I do, when you see them for the wondrous people they are, STOP USING THE R WORD! It's hurtful and derogatory to an innocent group of people who struggle for acceptance every day. They don't need to be the butt of your joke. They need your help and acceptance in a society that judges us all -- but especially them -- too harshly. You have the ability to help change the world -- their world, my world, our world -- for the better. All you have to do is delete that word from your vocabulary! Do it for me. Do it for My beautiful Boys!

The next time that word begins to roll off your tongue... think of me and My Boys. Then STOP... change it. Say something that's true but not hurtful like, "I can't do that anymore. My memory's shot!" or "You know me, I'm a bit uncoordinated that way." I'd laugh at THAT! But don't use my children as your point of comparison. And, by the way, now that you know how much it hurts me, when you hear someone else use the disparaging R word, remember me, remember my boys and their smiling faces and beautiful green eyes and loving embrace, and tell that person about me, about my boys. Tell them what I've told you. Tell them the R word is a derogatory term that has fallen from favor and shouldn't be used anymore. It hurts innocent people! It's the right thing to do!

Thanks for listening, friend.

Down Syndrome Awareness -- Expectations & Acceptance

2010-10-09T02:31:00.002-04:00

I wrote recently about my belief that parental expectations affect acceptance of children with special needs. Well, I just spent the last 4 hours with 150 old friends at my 30-year High School reunion (yes, I'm sorta old). It was interesting to hear all the stories of where people had been and where they were now in their lives in comparison to where I am in mine. Life is a series of stages, isn't it? And, most of my high school chums are struggling now to put their children through college as I struggle to get mine out of diapers. That made for a rather strange and laughable time warp... for me anyway.

When I was in high school (or maybe in college when I dated one boy for 4 years), I thought 28 was a good age to get married. At 28, I thought, you'd have lived a little. Worked a little. Seen a little. Learned a little. Certainly you'd be ready to settle down by that late age! I thought early 30s was a good time to have children. Made sense after a few years of wedded bliss with just me and my hubby that we'd start growing our family.  I planned to have two children... because that would be world-responsible replacing myself and my new hubby to maintain a zero population growth! No, these weren't expectations. They weren't wishes about how my life would go. Or even a plan. They were more an informal blue print I thought would be pretty cool and functional.

By the time I turned 29 I knew I was off-track and was going to have to wing it going forward. Knowing that all this good stuff would come when it was time (because good stuff always comes to those who wait) I was patient if not mightily preoccupied with a fulfilling career and a darn good (read: fun) life!.  At that point, acceptance of where my life was and how it might turn out was key because, clearly, I was NOT in control.

Well, if you know the end of this story (or maybe the beginning) then you know that I missed every milestone event I had concocted in my young brain. I didn't meet the man of my dreams until I was 32 and then we spent his requisite 5 years dating before we tied the knot.  I already had the cat leftover from college and we got the dogS (2) before we got the marriage certificate.  We married and had our first child within a year, waited 3 years and then, to my utter surprise, had identical TWINS! By the time the NeoNatologist said they had Down syndrome I was long past realizing that resistance was futile and acceptance was the only logical route!

No, my life has NOT adhered in any way to my loose idea of how I thought it might turn out.  There's a line in the movie, Marley & Me, when Jennifer Annisten (before her R word misspeak when it was OK to watch her movies) in response to her husband yelling at her that another child was not "part of the plan" says "NO, this was not part of the plan.... it's sooo much better! This is real life!"

Yes, my life is certainly real life. Not a school girl's dream. It's deep and dark and ugly at times. It can be scary. And every once in awhile I think, "This is not what I asked for!" I've said this before too... But I guarantee you it'd probably have been all these things if The Boys didn't have Down syndrome. If I had married at 28. Or if I had settled for just one dog and one cat instead of 2 of each. But I didn't! And, it's been a wondrous ride laced with the most beautiful ups and incredibly passionate downs. I wouldn't change a thing about my life! That's the truth!  It's been wayyy more exciting than anything I might have dreamed up in my sheltered imagination so many years ago.

Yes, it's been a heck of an adventure so far and the ride's not nearly over. When it comes to having children with special needs (or without)... Resistance IS futile! And acceptance opens the door to tremendous and unexpected love...

Besides, it's just more fun!

Phase 1 Potty Training: Dogged Perseverance & Continuity

2010-10-07T14:30:00.001-04:00

I've boldly announced that my boys are potty-trained in a recent post. And our school district totally agrees! They are! We are collectively right -- and simultaneously wrong -- depending upon how you define potty-trained. Yes, the boys use the potty all day long to go pee-pee. They wake up dry in the morning and I take them to the bathroom. Then they go through their 6-hour kindergarten day without any accidents. They come home and use the bathroom immediately upon being reminded. And there's the hitch... At home, they MUST be reminded MOST of the time. Occasionally, they get up and go on their own but that is the exception... at home! At school, they go regularly and on their own... because everyone else goes regularly and on their own. Children around them all day long, raise their hands and are excused to go potty. The Boys do the same. But, at home, we're not raising our hands and announcing it every time we have to go potty. We all just get up and go to the bathroom... when ever nature calls.  The Boys go, but not always, every single time, to the bathroom. Accidents still happen many days at home in the evenings when the business of our lives gets in the way of the pottying reminders. Time slips by and the pee-pee occasionally slips out. But, we've developed a methodology and process for that too! So this is our potty-training reality. They are Phase 1 Potty Trained!

So let's delve into the nitty gritty of how we successfully achieved this first phase of the potty training process! I'm no better at this than anyone else and there's no magic to it nor any one method that will work for any one -- or two, in my case -- of our kids the way it works for any other child in particular. I just kept reading other successful accounts of potty training children with special needs (and those without) until I found and formulated a hybrid method I thought might work for MY Boys. Then I implemented it doggedly and tweaked it until we hit on a process that actually did work for us.

As an Inclusionist parent, with Kindergarten in our near future, I needed The Boys to be potty-trained so that their toileting habits could not be a factor, nor influence the Committee on Special Education (CSE), with regards to their placement. Though the law allows for un-potty-trained children to participate in "regular" kindergarten classes if the inability to potty train is deemed part of the child's disability, I have found that too often this particular disability does play into classroom setting decisions (the diaper changing task changes everything). I was NOT about to allow this factor to influence my Boys' placement!  So my deadline was set for me at September 7th, the first day of school.

My daughter trained in one weekend with nearly no effort or purposeful intervention on my part. At nearly 5, that was obviously not going to be the case with The Boys. So I asked others' advice on my Down syndrome listservs and received lots of ideas and read books, articles and online posts about lots of recommended, tried and true potty-training methods. Some said sticker rewards systems. Others said co-training (have your child train their toy/doll/action figure while you trained them). And yet another touted constant nakedness to allow them to feel the consequences of NOT using the potty up close and personal (a method best used during the Summer and outside so as not to wreck your carpets and furniture). All included interesting components that I made note of but it wasn't until I hit upon timed intervals that a hybrid method began to develop for me and my Boys.

I googled clocks, stop-watches and timers until I happened upon the $20 Gymboss interval timer that allows 99 trials of timed intervals ranging from 1 to 99 minutes programmed at the user's discretion. It's a tiny little timer with belt clip and the ability to choose vibrate and/or alarm to last 5 or 10 seconds, again at the user's discretion. I bought packs and packs and more packs of Spiderman and Toy Story underwear (remember I'm clothing/training two!) and chose Friday after school as our starting date... to give me the weekend to foster some recognition of the process before I sent them to school on Monday. I also pre-enlisted their school's teachers and aides to actively participate in the process as the hand-off to school was made.

Prior to starting their potty training regimen, I'd spent months before and after their bath, having The Boys urinate on command in the handheld pot that usually sits inside the potty chair that they'd long ago outgrown. By counting slowly to 10 we would usually meet with some success (and they were counting pretty well too!). Slowly, I'd migrated that process to actually standing and urinating on command in the toilet... Again, only before and after their bath.

So, on the designated Friday afternoon when we got home from school, I took off their diapers, brought them to the potty to void their bladders and put on their first real pair of underwear.  I set the timer for 20 minutes and waited. Within 5 minutes there was a big puddle at the foot of the stairs with My Little Man standing over it saying, "Wet!" The next 40 minutes were fraught with puddles and soaked through undies. Slow learner that I am, I finally changed the timed interval to 10 minutes as a starting point. I'd read about errorless learning where children are taught slowly and steadily the right way to do something, never experiencing or having to unlearn the wrong way. Unfortunately, I blew that milestone which, I think, was probably not such a big deal since peeing in diapers seems to already be the "wrong" way with regards to learning how NOT to pee in ones' undies.

So here's the down and dirty on how we progressed: Interval timer was set for 10 minutes. As soon as the buzzer went off -- without exception -- I'd take My Little Man and walk him into the bathroom, drop his drawers in front of the potty and, with my arms lovingly wrapped around him from behind, verbally encourage him to urinate. He did... every time. Together we'd pull up his undies then his shorts and flush the potty. Wash his hands then rinse and repeat... with the Big Little Man. Despite mild protests, both boys voided. We kept this up for the better part of an hour without "accidents" before I moved the timer to 15 minutes and then quickly to 20. At 20 minutes I discovered that humans cannot pee indefinitely every 20 minutes and a Mom can lead a boy to juice but cannot MAKE him drink. Still, we kept up the routine and rewarded honest attempts (a droplet was acceptable) with praise and hugs and hi-5s -- 'cause that's what works best for MY Boys -- throughout the evening. We had one brief (get it? versus boxers...) accident and then stayed the course -- clean and dry -- for the next 2+ hours. By Friday night, the boys had managed 5 hours of clean and dry with only one accident (not including our first 40-minute mis-start).

I chose not to attempt night-time potty training at this time! The boys usually wake up dry and quickly "go" but a restless night often results in a urine-soaked morning diap so I opted to stay the course with the overight diaps. That said, I put the overnight on them and we all went to bed. As soon as I heard the first giggle on Saturday morning, I brought the hand-held potty insert upstairs (FYI -- we don't have a bathroom upstairs... which presents consistent difficulty in the toilet-training process) and had both boys void. Once downstairs I put the undies on again and we restarted at 20 minute intervals. All day long -- we went nowhere and did nothing but attend to that timer -- the boys did amazingly well. By afternoon I upped our interval to 25 minutes, then 30 when and the boys crashed. Several accidents later, I pushed the timer back to 20 minutes to try and recoup. Their resolve to pee-on-the-pot deteriorated as the evening wore on.  Sunday came and we started anew... again. We maintained the morning hand-held pot routine and 20 minute intervals, and The Boys were at the top of their game again. Until afternoon. To remedy a messy situation, I put an overnight feminine hygiene pad in their undies to catch most of the mess. It worked for me and didn't seem to send them back down diaper-memory lane.

On Monday morning, I packed a big bag of undies and feminine hygiene pads, wrote out my instructions and stuffed it into their backpacks. I followed our established protocol EXCEPT I put them in a pull-up for the 50-minute drive to school with undies & sanitary pad over top. I handed off the Gymboss while the Teacher and Aide removed the pull-up upon arrival. The Boys did FABULOUSLY staying dry the entire day! By the end of the day, the Teacher's Aide, Ian, who also happened to be "assigned" to their potty training and was their favorite person in the world at school, had bumped the intervals up to 45 minutes. The Boys followed their classmate's leads (The Boys attended an integrated preschool class with 50% of the class being "typical" and 50% having special needs), raising their hands and going to the bathroom -- with little assistance -- all day, and then all week long. By the end of week one, the school had removed the sanitary pad safety net and had not experienced even one single accident all day, or all week long.

We, on the other hand, continue still to meet with marginal success/occasional accidents in the afternoons and evenings. I'd put The Boys at 90% success rate. That's awesome, in truth. As for the other 10%?... I am absolutely 100% to blame for this. Not only did I make the assumption that their school success would translate to home success -- not true -- but I did not unequivocally honor the timer. THIS continues to be my bad. When I do not honor the timer, which is now set at home for 30 minute intervals, we experience accidents.... more so for my Little Man than my Big Little Man who, it seems, could hold it for 2 hours and withstand significant pain to do so until he's brought to the potty to go.... mostly. I can skip one round to go 60 minutes most of the time. BUT, when I DO honor the timer, all is well, clean and dry 100% of the time! THAT'S EXTRAORDINARY!

So, this is our new normal. We are timed-interval potty trained. At school, The Boys know to go potty when transitioning between activities... which, in Kindergarten, effectively happens every 30 minutes. They do not use the interval timer but use gentle reminders only as needed. At home, we live by the Gymboss. Some would say this is an intrustion on our lives and not much of an improvement over diapers since we only needed to change a diaper every 2 hours or so. But, in order to foster the independent toileting skills they'll need in life... This is what we have to do for now and until The Boys accept the full responsibility for "going" themselves. This will happen -- like everything else -- in their own time! I'm OK with that!

As for #2 training, I would never claim that the boys are potty trained for bowel movements. Yes, they both can, have and will poop on the pot if given the opportunity when nature calls. And, since nature has blessed them with pretty regular bowels, most of the time, the need occurs in the evening and/or right before bed. (It has only twice called during 2 years of preschool.) Knowing this is a Godsend because we can watch for the telltale signs -- hiding in the corner, grunting or outright announcing, "poopy hurts" -- that triggers the frantic (not really, but sorta) run to the bathroom to "catch it' on time. Otherwise, we have a double-duty (LOL) accident on our hands because we can all understand the pee-when-you-poop phenomenon. To minimize the negative effects of this happenstance, I briefly and/or occasionally go back to using a large overnight sanitary pad (I prefer Kotex overnights) in the afternoons/evenings... particularlyy when pooping alludes them for a day. But, mostly, if I find The Boys and I are having a particularly rough time sticking to the [Gymboss] program -- for #1 and/or #2 -- I implement the New York Times Naked Toilet Training technique by removing all clothing from their bottoms, stripping them down to bare skin (Thank God for long shirts). The Boys NEVER urinate when around the house when they're naked. They might lose a drop or two but quickly catch themselves and announce it so we're off to the bathroom again.

Yes, they are potty trained! It's not perfect... but they're 5 and they're only 3 months into this process. All in all, they've done PHENOMENALLY WELL! And, I am beyond pleased with their rapid progress. Could we all do a little better (Note I said WE because I do see the difference when I slack)? Sure. But, our success is palatable. They're included in the Gen Ed class at school for most of the day, their toileting habits never coming into play in the decision-making process. And, given some of the nightmare accounts of potty training I'd heard before I started, I'm very pleased with our outcome.

Did we/do we continue to make mistakes? Yes, but tweak-and-learn has become my motto. Below I've listed some of the mistakes I believe I ~~made~~ make on a pretty regular basis and to The Boys detriment:

The hand-held insert potty made us all lazy, I think. At home, The Boys seem to wait around, preferring for me to bring it to them instead of taking the responsibility to get up and go to the bathroom. Convenient, yes. NOT conducive to what small sliver of errorless learning there might be left. I have to STOP using the hand-held and make us all go to the bathroom... like in the real world... if I ever expect independent toileting skills.
Honor the timer. Honor the timer. Honor the timer. I don't! Life gets in the way. There are days where the 10 seconds of beeping barely register in my brain. NOT good! I've got to get better at this or we'll end up with more accidents than visits to the pot and I'll start to see my potty-trained Boys resorting to urinating in their pants more regularly than urinating on the pot.
Honestly, I think the pad may be a mistake. It seemed like a really good idea when cleaning that 10th pair of undies and/or the HUGE wet spot on the couch. However, I think The Boys see it as just a smaller diaper which gives them permission to go. After all, they've spent the better part of 5 years peeing in their diaps, that muscle memory is much stronger yet than holding it and running to the bathroom.
Believing that success at school translated to success at home. The social situation at school is completely different than at home. Humans are pack animals and will follow the pack. At school any fraction of 20 children are clamoring for use of the bathroom at any given time. At home, asking Daddy to hurry up is an exception. No one's raising their hands or announcing their use of the bathroom. As such, the peer training at school is so much more intense than at home... which puts the onus on... MOMMY (let's be honest) to make up the difference.

Those Aha Moments:

Afternoons are our tough time. The Boys have worked hard to be good all day and are, as they say, "all done!" That means beefing up the toileting routine at home to stay on track. I found out that when I work it, it works! When I don't, they pee everywhere but on the pot.
The pad is cheating and, though it may ease my "load", it may well be keeping them from learning.
Going straight for the stand up routine makes more sense than teaching them to sit down to urinate and then un-teaching them to sit down in favor of standing. I read that unteaching is tough in children with Down syndrome. Maybe, maybe not. But it seemed way more logical to me that if I wanted them to pee standing up I had to teach them to pee standing up.... It's working for us.
Boy does as boy is... or sees. Daddy HAS to be involved if you're going for the stand-up routine. Mommy can't show The Boys how to do THAT! Even positioning, like holding it, appropriate stance to keep drips from your pants and shaking off those last few drops are techniques for Daddy to share effectively. I can talk 'til I'm blue in the face... but once they've seen Daddy do it, it's cool.
Humans are pack animals. Seize the opportunity to follow the crowd... to the bathroom. My Boys really like being part of the IN crowd, doing what everybody else is doing.
Sometimes The Boys seem to forget how to activate the pee-pee muscles to urinate. When this happens, I patiently wait while lightly scratching on the fat pad above their penes (correct plural... which makes me want to laugh 'til I pee my pants every time I say it) to activate the appropriate muscles. Works for us!
The Boys often lose interest in the process midstream... literally. To keep them "going" I point out the pee pee bubbles that develop as a function of peeing in the pot and/or I encourage them to aim as far as they can to hit the inside-back of the toilet bowl.
I find that if I don't get them to void completely we're far more likely to have a mid-interval accident. I've come to recognize that when a full-stream of urine stops dead, they're holding back. And, the only way I know they're really ALL DONE is when the stream peters out (perhaps the origin of that phrase?) and we trickle down to droplets.
At this juncture, they're potty trained enough so that when we have someplace to go where cleaning up an accident might be awkward, I can put a pull-up on The Boys and know that they will still hold it and/or tell me when they have to go to the bathroom. They're not regressing just because there's a diaper between their legs. That's HUGE progress!

So this is my take on it: No child is the same -- with or without special needs or Down syndrome. No single potty-training method will work for all of our children but a combined approach worked for me. Nothing -- no outcome -- is perfect. This is a process! Once you accept these truths, go ahead and formulate a plan of your own and go forth and potty train. If you hit a wall... don't quit! Ask questions, tweak your method and keep going. We are ALL here for you! Please feel free to comment, email or Facebook me any questions about anything I've said, how we handled any aspect of our Phase 1 Potty Training endeavors OR about any issues you're encountering. I'm happy to offer my opinion... but please remember, that's all it is... One newly-potty-trained Mom's opinion!

Most of all, good luck and stick to it with dogged perseverance! No matter how long it takes, it's totally worth it especially when you consider what the alternative -- NOT potty training -- means for you and for your child.

THE END

(or just the beginning?)

Down Syndrome Awareness -- More on IQ Testing

2010-10-06T00:33:00.000-04:00

Yes, I said to refuse IQ Testing for your child with Down syndrome! If anyone asks, JUST SAY NO! I didn't!  I stupidly thought that a non-verbal IQ test might be just the thing to show the world (read: myself) just how smart My Boys really are... In hindsight, I don't remember why I brought the subject up.  The school didn't ask for IQ testing. I did... sorta! As a matter of fact, our school district didn't ask for any testing at all. Nothing... even as My Boys transitioned from CPSE to CSE with testing and evaluations that were 2 years old. I thought that was strange and inaccurate so I asked why they weren't doing "a full battery of tests" as I'd heard was the norm. When they asked me what I meant by that I threw in cognitive testing along with PT and OT evaluations as well as a speech eval that allowed the diagnosis of Apraxia (and pretty much sealed the delivery of PROMPT services for My Boys)!

Yes, I'd consented. But, consent is a funny thing. Recognizing that My Boys had Apraxia, it was key, for me, that cognitive testing be delivered using a non-verbal vehicle. As such, I specifically requested that a non-verbal IQ test be used... recommending several choices including the WISC (Wechsler Intelligence Scale for Children), Leiter and TONI (Test Of Non-verbal Intelligence). The parameters of each (including appropriate age range), the testers felt, were not quite right for use with My Boys. So they opted for a standard Intelligence Test -- The Stanford Binet -- which is heavily reliant on receptive AND expressive language and is absolutely NOT APPROPRIATE for My Boys who have Apraxia!!!!!  I allowed myself to be convinced by the testers that the verbal versus non-verbal scoring of the subtests would accurately account for and depict the impact that My Boys' language delay had on their scores. While these subtest scores certainly told a story a tad closer to the truth, they still did not approach accuracy for My Boys. The rest, as I posted yesterday, is history... and will likely haunt us for the rest of our lives -- as bad history often does -- or at least for the rest of The Boys' school career!

To counter the negative impact the scores had/may have on-going on the educational decision-making process for My Boys as much as possible, I indicated, in writing, that I disagreed and disputed the scores and requested NOT to have them reported in their IEPs with other evaluation results. Furthermore, I insisted that if and when the test scores were provided to any one or reported anywhere, the final scores must be broken down by verbal versus non-verbal results for each subtest.  Please note: Most testers will roll the results up for reporting which provide far less meaningful categories for all children but especially for children with special needs. I based my request on the notion that the purpose of test scores was to provide an accurate and informative profile for those reading my child's IEP. To this end, the rolled up scores provided a misleading picture while the broken down subtest scores told a more accurate story. My school district agreed [but it was up to me to get the testers to provide the scores in the broken down format I desired].

As an alternative, if you're so curious you just can't help yourself, it's also an option to pay out of pocket for IQ testing and ask the tester to use the specific test vehicle(s) you choose. This way, you get to see the results and decide for yourself whether you want to share them with your school district. Please note that once you've approved the school district still gets to decide whether to accept those 3rd party results.  I still believe the better tact is to refuse testing knowing that it will NOT accurately depict your child's cognitive ability! You'll sleep better! Not done, it won't hurt your child! Once done, it may!

That said, in many states, IQ testing is required to receive services so parents remit to testing. But, what many parents don't realize is that based on their child's score, they may also lose critical educational opportunities -- such as inclusion, a research-based best practice for educating children with disabilities. Though this practice is discriminatory in nature, many schools have the legal power to justify their exclusion of your child based on the standardized IQ testing performed.

There are all sorts of examples of kids with cognitive disability ranging from severe to non-existent doing not just better but absolutely FABULOUS in Inclusion educational settings... Children who would never have gotten the chance to learn side-by-side with their peers, despite it being the law, if IQ scores were the catalyst behind their acceptance into such a program. The truth is, if you raise the expectations, your child with Down syndrome or any other disability will rise to the occasion and achieve more... All you need to do is give them the chance.

Research shows us that learning side-by-side with typical peers provides the best social, emotional and academic outcomes for children with special needs (as well as for children without). If one test score has the power to deny your child this opportunity to be INCLUDED, I say fight it! Take it from me, -- from my experience -- the scores will NOT reflect your child's cognitive ability and, as they say in the legal world, the information can and will be (or may be) used against you (or your child) in deciding educational placement!

Down Syndrome Awareness -- "Cognitively Intact" and IQ Testing

2010-10-04T21:06:00.002-04:00

"Cognitively Intact" is a term that's thrown around the Down syndrome community like a hot potato. It's the new "high-functioning". Parents pronouncing proudly -- like me, not long ago -- that their children with Down syndrome or other disabilities are "cognitively intact". Preschools in Queens, NY (and other places, I'm sure) actively practicing segregation by automatically disallowing the enrollment of any child that is not "cognitively intact" as indicated by their IQ test scores. Public schools nationwide trying to abide by the federal FAPE (Fair and Public Education) laws are looking at IQ scores to determine if a child is "cognitively intact" and can, therefore, be included in the LRE (Least Restrictive Environment) better known as a general education setting which has been proven through research to be the most effective place for educating children with disabilities. For us Moms of kids with Down syndrome, or other potentially cognitive disabilities, the notion that our children's education and future relies heavily on the result of one particular test score -- the IQ -- weighs heavily on our minds as an incredibly detrimental practice for determining educational placement. Never mind we (and our children) have to live with those inaccurate results and labels for the rest of our lives.

What does it mean to be "cognitively intact" anyway?  A child is assigned this particular label when he demonstrates the ability to grasp age-appropriate concepts generally determined based on scoring in a "normal" range on an intelligence or IQ test.

Watch out folks I'm climbing up on a VERY BIG soap box right now.....

IQ tests are fallible! ESPECIALLY for children with special needs. While I do not discount their potential contribution to understanding where a child scores in relation to others who took the same test, their ability to accurately measure the cognitive abilities -- let alone predict future academic or life success -- for people with disabilities is limited at best and outright inaccurate at worst. These tests are developed and normalized on "typical" populations... NOT on children with disabilities. Children with any extenuating circumstances, including those who speak English as a 2nd language, those who grow up below the poverty level or those with non-cognitive disabilities including expressive language and/or processing difficulties -- OFTEN do nor score in the "typical" range. They may well be "cognitively intact" but the tests cannot account for environmental and other factors that have been shown to drive the scores down. These tests are also developed under the assumption that "typical" language skills exist. That is, they are heavily reliant on receptive and expressive language skills not only to understand the question but to provide an answer as well. A child can have the ability to understand the question but if they cannot express the very specific and prescribed answer lingually -- as is the case in a child with Apraxia, for instance -- the "normal range" score will not be reflected. An expressive or spoken language delay is not necessarily about cognition or intellect but these tests cannot account for such issues. Additionally, IQ tests are timed delivery and response vehicles.   That means a child who has processing delays or attention issues can understand and answer the questions accurately but will not get credit for being "cognitively intact" because he took too long to respond.

My Boys were considered "cognitively intact" -- performing at the low-end of the "normal" curve -- right up until the IQ test became language-based. Yes, I fully acknowledge that most "typical" 5-year-old children have a greater command of the English language than My Boys do. BUT, in addition to Down syndrome, My Boys have also been diagnosed with Apraxia... An oral-motor disorder that has NO cognitive implications whatsoever. So, while they're generally able to comprehend the question, they're unable to express their answers lingually. And the test does not allow for responses using sign language, body language, or atypical responses -- such as saying "uh-oh" and "hot" while pointing to the part of the picture in question -- when asked, for instance, what's going on in a picture of a pot boiling over on the stove. Even their two individual testers acknowledged that they could clearly see that My Big and Little Man understood the question and responded with an appropriate answer, BUT, because it was not the prescribed "correct" answer they could not give them any credit. Even their school work and teacher evaluations continue to show The Boys' performance to be at the low end of the "normal" curve despite their "failed" IQ scores.

Here's the hardest thing about the whole IQ Test experience. I know... I mean I KNOW... about the fallibility of these IQ tests and the fickle assignment of a term like "cognitively intact". BUT, to be aware that your child is capable of so much more than is reflected in their scores is extraordinarily frustrating ESPECIALLY when their educational future is often, sadly, based on these highly inaccurate scores. WORSE, I still have to live with IQ scores that show The Boys to be "severely mentally retarded"... a classification that is INACCURATE by all personal and professional accounts. I am soooooo sorry that I ever consented to these tests in the first place.

No matter what level of cognitive functioning your child has, these tests consistently under-represent your child's ability. So what's a parent of a child with Down syndrome or special needs to do?

REFUSE IQ TESTING! Instead, go with clinical observations and evaluations such as their school performance and evaluations provided by their teachers and therapists. Though somewhat subjective, these are more accurate predictors of your child's ability to perform in an educational setting and are therefore better measures to help determine future educational placements.  That means your child's future will rely on their past performance instead of being based on the comparison of their performance to "typical" kids.

October is Down Syndrome Awareness Month: Acceptance

2010-10-02T02:13:00.000-04:00

I'd venture to guess that regardless of where you live, or what country you call home, the reaction of individual parents who receive the news that their newborn baby has Down syndrome -- whether that information comes at birth or during pregnancy -- are more similar overall than not. It's likely this similarity is the reason so many parents of newborns with Down syndrome are provided, at some point usually early in their new journey, with the "Welcome To Holland" story that was given to me to help me "get over the disappointment" of having a child with Down syndrome instead of the typical child I was expecting.

Personally, I was never disappointed! Honestly!

It amuses me that so many adults enter into this parenthood-thing with hard-core expectations of what it's going to be like to be a parent... complete with a specific vision of who or what their child will be. I'd also venture to guess that if you asked MOST parents -- of children with or without Down syndrome or any other special need -- they'd tell you that their pre-parental perceptions were somewhat misguided about how their children would behave and about how much hard work and sacrifice this parenting thing requires.

Yet, we parents of children with Down syndrome are told that it's OK to mourn the loss of that "typical" child we thought we were getting until we gain some acceptance of the child we ended up with. Like we got the booby prize but we'll eventually learn to love "it" anyway. As though Holland could never be as nice a vacation destination as Rome even if you picked Holland in the first place. I recognize that this thought process helps so many parents come to terms with the diagnosis. But doesn't it sound a bit odd when you read that sentence above? The child -- or children -- I got are not booby prizes! And I am not mourning the death of the typical child that died in-womb and was mysteriously replaced by this one (or two) I got. My children are exactly who they are supposed to be. In reality, the funeral should be for our unrealistic EXPECTATIONS that rightfully died. It's not that Holland isn't a beautiful place to vacation, it's that we mistakenly thought we were going to Rome. The problem is NOT the destination we ended up in, it's the full blown and unrealistic EXPECTATION of adults who thought they knew exactly where they were going and that it was somewhere else than where they ended up. By the way, this sentiment describes many a parent of typical children that I know too!

I do not disagree that THIS life I'm living is not quite what I'd expected my life to be way back when I was 20-something years old and dreaming of what my prince might look like. I can tell you that my fairy tale visions of life had all but vanished from my memory; replaced by a completely acceptable reality as a function of all the wonderful dates (note the sarcasm font) I had that contributed to the demise of those unrealistic dreams and set me up for life-long unconditional acceptance of whatever came my way... long before I ever seriously contemplated actually having children of my own. As a dreamy eyed young lady, I knew without a doubt that I wanted to have children some day. And as a not-so-young adult finally contemplating marriage -- the ring already on my finger -- I gave very SERIOUS thought to WHY I wanted to have children of my own. Not that my resolve to have them had changed at all... but I felt compelled to examine my reasons WHY I would have them.

In a nutshell, I wanted desperately to share my love and knowledge of this wondrous world that God gave us with a child.... this despite acknowledging some nasty developments in the world (like 9/11 though that did not occur until I was 8 months pregnant with my first child). I wanted to be a part of forming the peaceful and remarkable future of our society by teaching my children, and for them to teach their children, to be universal citizens of the world. I wanted to share my laughter, my faith, and my love with my children and to have them share theirs with me... I wanted to see the world again, and forever, through the innocent eyes of a child.

Yes, I always knew I'd absolutely have children! But my expectations had morphed into who I hoped I would be as a parent more than who I thought my child would be right out of the proverbial gate.

That said, early on in my pregnancy, any thought of typical went right out the window as I sat on the OB/GYN's table, 8 weeks pregnant and wondering whether I was carrying a boy or a girl. I love a surprise and so I KNEW this was a question that would not be answered -- along with what color eyes, hair and skin tone my child would have -- for at least another 7 months. Honestly, my own expectations of typical went right out the window when the midwife said, "and there's the other baby!" Yes, I mourned my idea of having just 2 children total instead of the 3 I'd have after birthing these twins. The next few months dragged painfully by, dashing whatever meager expectations I might have had for a "normal" pregnancy with each pre-natal test and death-defying medical diagnosis I was given. Down syndrome was NEVER mentioned but absolutely false positive diagnoses of hydrocephaly, microcephaly, viral infections calcifying their brains, still births, vegetative states at birth, painful deaths following birth and more -- I could go on but you get the picture. I was put through test after test and rushed from one specialist to another all subtly suggesting that I terminate because these babies would not be perfect... Might not survive anyway. And then, I suffered the disappointment of having my own body begin to give out under the physical and emotional stress of carrying two potentially imperfect babies. I finally asked them all to stop! I told them no more tests and to just be prepared for whatever might happen at their birth. I said calmly and quietly -- but felt as though I'd screamed it at them -- that this would be a matter of God's will and all that good stuff...

And then, 32 1/2 weeks into what should have been a 40-week pregnancy, I gave birth -- Baby A's idea to come early -- to two healthy, breathing-on-their-own baby boys! 4 lbs 15 ounces and 4 lbs 11 ounces at 8 weeks early! (For those of you who might not know, 5 lbs each is the typical weight for full-term twins.) My babies were NOT still born. There was NO hydro or microcephaly. They were NOT "vegetables". There were no viruses in their brains! Everything, every piece and part that was supposed to be there was working well and accounted for. 10 fingers. Oh, sorry... 20 fingers and 20 toes. 2 healthy hearts. All the prerequisite and fully functioning organs. Two pairs of beautiful blue eyes framed by brown hair. Nearly 18" tall each! Big and Tall despite missing their last 2 growth months of pregnancy and, especially, for being 8 weeks early! IDENTICAL twins even though they were in two separate sacs (we mistakenly came to believe they would be fraternal twins but learned that 2% of all identical twins split in the fallopian tube and develop in separate sacs like ours did). And, just between you and me, I had nearly convinced myself I was having a boy and a girl! But here they were. 2 months early and healthy! ABSOLUTELY COMPLETELY HEALTHY! My two beautiful baby boys!

Talk about EXPECTATIONS? NO, I was NEVER disappointed. Not for a single moment. I was ELATED! They were ALIVE! They were WELL! They were breathing on their own. I had two HEALTHY babies!

Within 5 minutes of arriving at the NICU, the NeoNatologist said, "We're sending out blood tests. There are... some signs... that make us think, maybe, the boys have Down syndrome." I nodded nonchalantly, murmured, "OK." FOR ME... it was OK! It was ALL OK! That sentence barely registered on the Richter scale given all the other cr*p they'd told me to expect. Oh, I HEARD it! And I fully and immediately understood that this was their way of telling me my babies had Down syndrome. But, I didn't care at all! My babies, my boys, my identical twins, were alive and well and breathing on their own.

So you see, it's really all about our expectations and not about the child! My children are, and every child is perfect -- perfectly IMperfect -- just exactly as they are. And our expectations are IMperfect too!

Every parent I know that has a child with Down syndrome will tell you that the experience has been an absolute blessing in their life... though many admit that they may not have embraced this notion immediately upon learning of their child's diagnosis. Yes, there may be challenges and/or difficulties inherent to having a child with Down syndrome or any other special needs. But, there are no guarantees with any child -- with or without Down syndrome. I've learned that if parenthood is nothing else, it is full of surprises, challenges and/or issues that continuously pop up along the way and often when you least expect them. These are my expectations.

That's life... and it's a good one!

31 For 21 Challenge: Down Syndrome Awareness Month

2010-09-30T19:41:00.000-04:00

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We all have a unique journey in life. Come, spend the next 31 days reading about my experience raising identical twin boys who were blessed with an extra 21st chromosome and who bless our family daily with their love and laughter.

October is Down Syndrome Awareness Month -- help me raise awareness by reading along, linking to my posts and tweeting if you feel moved to do so.

THINKING THANKFUL

2010-09-25T08:03:00.000-04:00

First, thank you all for your response regarding our potty-training methodology. I'll be writing up a detailed synopsis of our imperfect but triumphant experience to share with you all, as requested. In the meantime, keep up the pressure if you're in the throes of potty training. This is absolutely a case of dogged and systematic perseverance.

It's been a long Summer and a way too short Summer all at once. In an effort to analyze and maximize my happiness I find I'm most grateful for the past; I'm enjoying the present; And I'm looking forward to the future.

[1] Happy to have spent my birthday weekend at the beach, camping with my children and my friends. I'm grateful for the good weather. For the good company of friends and family. For the rest and relaxation. And, though I would really have liked my husband to be there, he was sick AND had to work so he stayed home to take care of the pets and hold down the proverbial fort. Even that was a bit of a Godsend. Because otherwise I'd have had to fret about how to get it all done and, ultimately, ask my Mom to help out AGAIN. But, I didn't have to thanks to the Sarge's untimely illness and unfortunate work schedule. All in all -- for me -- a very relaxing way to turn 48! Thanks to Tammy and to Sarge for making it so!

[2] I'm so thankful for my Mom. For all the times SHE ASKS ME what she can do to help me... before I ever get the chance to ask her. (OK, maybe it's that obvious -- like it's written in screaming font on my forehead -- that I need help, huh?) But, Mom is always there to lend a hand when it's needed.

[3] I'm thankful that my Old Soul has the wonderful and intelligent brain she has... I really am unbelievably grateful for this. She's an amazing child and I love her and her deep-thinking brain... But if anyone knows how to instill a sense of confidence in those brains to match her ability (especially in Math), please comment me the answer and help save my sanity.

I used to wonder if I hated Math because I wasn't good at it or if I wasn't good at it because I hated it. Turns out, I was good at it before I hated it and so was my daughter. In fact, we're both still pretty good at Math. So where does the hate come in? For my Old Soul, right before the self-prescribed failure.... Somewhere in between 2 hours of tears, hyperventilation, refusal to even try and the complete shut down that occurs every single night. That said... I'm also incredibly grateful that my friend, Eileen, gave me the name of a wonderful counselor dedicated to helping children and their families overcome just such problems... and he takes our insurance!

[4] I'm grateful that my boys are doing so well in their new school... our local public kindergarten center! I'm thankful and amazed that their teachers are quickly recognizing their ability and altering their educational program according to their "typical" needs (instead of focusing on their "special" needs). Their "split" schedule allows them 1:1 time for academic training using Discreet Trial Training -- an ABA methodology that specifically addresses the needs of people who have trouble with rehearsal and the ability to commit information into short- then long-term memory (often the case for people with Down syndrome as well as autism). In my district, this training is only available in the "special needs" class (though the law states services cannot dictate placement). The boys get their related services during their time in the "special needs" class and the rest of their day is spent in the "general education" class with a 2:1 aide assisting my 2 little angels only to the extent that they need help (which, I can say proudly, isn't as often as the teachers first thought). On paper, it's a 3 hour split schedule allowing 3 hours in each class setting. But, as it turns out, their gen ed teacher and classmates have embraced the boys and the team has recognized that their ABILITIES far outweigh their disabilities. So they've altered their schedule such that they spend more time with their gen-ed class and less in the "special" class. They are NOT being pigeon-holed by their "special needs" in the public school system, as I feared might happen and had prepared myself to fight. Honestly, I am cautiously very optimistic! It appears that they are being recognized for their skills and abilities and their educational program is being customized to maximize these abilities and minimize their disabilities. How cool is that?

[5] I'm thankful for the ability to forgive. It lightens my emotional load and immediately frees me from the burden of holding a grudge. I'm just not the grudge type! And I think/hope it makes me a better and happier person. I'm far from perfect at it as the thoughts of injustice creep back in here and there... but I'm practicing every day and it gets easier the more I do it. Forgiving has been an amazing gift to myself. (Try it, you'll like it.)

Potty TrainED (as in past tense)

2010-09-15T08:22:00.001-04:00

We are SOOOOO there!

Potty Trained (except for #2 which they ONLY do 1x/day at home)!

The timed interval method using a gymboss worked wonders for The Boys! Want to know more? Let me know if you're interested via a comment on how I got my identical twin boys who happened to have been blessed with Down syndrome to move from diaps to undies in less than 4 months (with a hospital hiatus in between)!

See more Special Exposures at 5 Minutes For Special Needs

Peace -- September 11th and Turning the Other Cheek

2010-09-12T01:50:00.004-04:00

I wanted to write something poignant today, on this, the 9 year anniversary of the terrorist attacks on New York City's Twin Towers, Washington DC's Pentagon and, lest we forget, those who perished in the Pennsylvania plane crash on September 11, 2001. Last year, I wrote about my experience that day, working just blocks away from ground zero, watching the towers fall from my office window. This year, everywhere I look -- in blog land, online, TV-land and at the local deli -- there's much focus on moving forward as opposed to looking back. Advice from individuals pressing us as a country to move on, to forgive, to use 9/11 as a catalyst for peace. I couldn't agree more... AND less, in an unsettling sort of way. But I could not put my finger on the source of my discomfort. So I pressed myself to try and understand (because it's my nature to do so)...

Mind you, I live within 30 miles of Ground Zero. I was working on the northern fringe of downtown New York City that memorable day... a day that I will NEVER forget as the first plane buzzed over my head, way too close to the ground, headed south on Broadway just minutes before it hit the first Tower. A historic day, a day of great human suffering and world sadness for which I had been given a front row seat. A day I watched unfurl right before my eyes... where 2000+ innocent people perished because those responsible for this heinous act of terror WRONGLY perceived that the innocent people in those buildings represented a nation that believed something different than they believe about "God". These EVIL people who KILLED because they believed that their religious beliefs were more right than mine; more right than yours; more right than everyone else's. They believed that their God called for such an extraordinary act of violence. And calls for such acts ongoing.

Again this year, I read and listened to accounts of that day from folks who were halfway across the world and from folks who were so close they breathed the tainted New York City air with me as they walked off the island of Manhattan... No other way out. I listened to people I know and respect from various walks of life, various political views and various religious beliefs as they expressed their point of view... I listened to what's changed for them. How they thought we should proceed as a nation. Should a mosque be "allowed" to be built overlooking the grave site of so many innocent people, and replacing the last building standing on what's now locally considered hallowed ground? Should all the members of the religious group shared by those responsible for this crime against humanity be held accountable? Should those directly responsible be positively represented (as part of their religious group) by permitting this mosque to be built... as a gesture for world peace?

Perhaps you're getting a feel for my underlying sense of unease. I'm not interested in denying religious freedom to anyone (there are over 100 mosques in New York City already). I'm not interested in blaming all for the actions of a few. BUT... I don't know.... The whole thing STILL feels like a fresh wound to me though it was 9 years ago. Still, the world is asking me, and it feels personal, asking us all as Americans to turn the other cheek. To forgive and move on with a more positive attitude. A practice I am typically and easily drawn to by my very nature. But I'm honestly torn on this one. I'm torn between honoring the principles this country was built on -- religious freedom for all -- and honoring those who lost their lives by such senseless violence. Building a mosque in that location is, at it's core, merely a real estate deal. The land goes to the highest bidder, right? But that doesn't feel quite right to me and, apparently, to so many others. Yes, it is legal to build a mosque at ground zero. But is it right to do so? Ahhh.... I don't know exactly why but it just feels wrong to me. It feels insensitive to the victims and inconsiderate to their loved ones. That would be like allowing a serial rapist to rent a room in the same boarding house with his victims or permitting a mass murderer to build his home on the grave of those he killed. It just feels wrong to me! LEGAL, but morally wrong!

I forgive when an infraction is acknowledged. I turn the other cheek when I'm certain I'm not stupidly exposing myself to more harm by doing so. I lock my doors to prevent theft. I avoid dangerous alleys. I will take up arms to protect my loved ones. And I will defend myself and my loved ones against those that mean us harm... I feel the need to take these precautions now... STILL...I feel the need to protect my children, my loved ones, myself. I do not feel safe. Rather I feel victimized, raped, murdered by the actions taken by the perpetrators of the 9/11 terror attacks on the Twin Towers. Perhaps my reaction is natural because it hit too close to home, too close to my loved ones. These attacks directly endangered the lives of me and my family members. Perhaps those of you who watched on television versus actually living that day up close and personal don't have that same personal sense of fear. Maybe you do. Perhaps turning the other cheek doesn't put your loved ones in direct jeopardy of getting smacked again... It does for me! And perhaps you don't have that sinking feeling that maybe you won't be so "lucky" the next time. Perhaps those of you who are calling for me to lay down my arms never felt the pressing need to bear arms to protect your loved ones so directly. You don't live with the uneasy notion that you and your loved ones are in some one's cross hairs, that you are an innocent target for those who mean to do you and your loved ones harm simply because you do not worship the same God.

So much happened that day that even the media dare not talk about. Those who were there -- not like me, who watched from 1/2 a mile away -- but those who were really THERE at Ground Zero... those who walked down the stairs and out of the buildings to survive, like 2 of my cousins; those NYPD, FDNY and independent heroes who risked their lives going into the buildings to help others get out.... THEY talk of the whirring sound of bodies falling through the air followed by the thud as they hit the ground like 200-lb raindrops falling all around them. They talk about quickly coming to understand the sound and to take shelter so as not to get crushed by someone jumping to their death because that was better than burning to death. THEY speak of the roadway immediately in front of the Towers being slick with the blood and strewn with the body parts of the thousands of innocent people killed that day... such that it was hard to walk without slipping. THEY talk of months of scouring conveyor belts filled with the rubbish taken from Ground Zero looking for personal items and human remains -- a wallet, a wedding ring, a piece of skin, a bone, a tooth -- to try and identify victims so their loved ones could gain some closure. Bury their fallen family member. Those who perished cannot look forward. Those who lived the nightmare can't help but look back.

They say, "History repeats itself." That's a scary notion... but not so far fetched to me anymore! We need to look back in order to change the future. I am inwardly conflicted. Yes, I want personal peace. But I will not turn the other cheek at the risk of endangering the lives of my loved ones... or yours. Yes, I want world peace. But not at the cost of freedom for us all!

First Day of Kindergarten

2010-09-09T10:02:00.001-04:00

You know when you get those glimpses of who your young children might be when they're teenagers? Well, I had just that experience on The Boys first day of Kindergarten. My attempts at getting a decent shot of my backpack-laden little boys was met with numerous tell-it-to-the-hand poses accompanied by my choir of angels singing, "NO Mom!"

So THIS was the best I could do! A memorable day just the same... even without award winning photographs.

See more Special Exposures at 5 Minutes for Special Needs!

Special Exposure Wednesday ON SATURDAY

2010-09-04T10:29:00.000-04:00

All aboard at The Mystic Seaport. A great place to spend a few days learning about Early American seaport life. My kids -- who especially loved the tremendous Charles W. Morgan whaling ship... the only wooden whaling ship left in the world -- are inherent water and boat lovers! Must be they got that gene from their Daddy, former boat captain and life-long seaman.

More special exposures on 5 Minutes for Special Needs.

Thinking Thankful -- The Summer That Sorta Wasn't

2010-08-28T16:48:00.005-04:00

For those of you who have been following along lately, you know me and mine have had a bit of a rough stretch this Summer. Truth is, that's the case in more areas than I blog about but hey, life goes on and so must I. All those bumps in the road could bring a girl down if she let them... But I don't. Can't! I've got kids to take care of and a life to live. I've got to stay focused on all the good stuff -- and there's a LOT -- in order to weather the storms. So here goes:

[1] I wish I could say I've been successful losing weight during these stressful past few months. Truth is, stress and weight loss are strangers. When one's around, the other is generally no where in sight! For me anyway. But -- and it's all about the size of the butt, right? -- I've got my good health. My body is strong. My mind is focused... most of the time. And my spirit is peaceful. That's huge... even if I am too (LOL)! My weight and my ability to move the scale in a downward direction will come in time. Meanwhile, when I really think about it, I'm actually proud of my body and it's abilities... which far outweigh (pun intended) it's DIS-abilities.

[2] I'm thankful that my parents are still here with me. I lost an Uncle yesterday. My Godfather, actually. He's been declining for some time and living in a nursing home so it's not as though it wasn't expected to the extent that you CAN expect such things are going to happen at some point in the future. Still, it marks the end of an era. Of all my aunts and uncles on both sides of the family, there is only one PAIR left. All the other better halves (or lesser halves as the case may be, LOL) have gone on to phase II. But, my Mom and my Dad are still in the game of Life (though not together so I wonder if that has something to do with it). They each have their share of minor-ish health issues but they're strong willed and able bodied (mostly) and I'm thankful I still have time to tell them how much I love them.

[3] Big news! I got a new car! Yay! My trusty old stop-gap Silhouette was diagnosed terminal a couple of weeks ago and made it's last run as part of our family up to the used car lot last night! Yes, I'm feeling mighty good about my certified pre-owned, new-to-me minivan. (It's on the Top 10 Most Stolen Vehicles List so I'm not saying exactly what it is or where I live ha ha ha!) 'Cause I want to keep on feeling proud seeing it sitting in my driveway! I've never wanted a minivan. As a matter of fact, Sarge and I made a pact that we'd never own one... then along came The Boys. Ya do whatcha gotta do, right? If I have to drive one of these suburban establishment icons, the one I've got now is the only one I've ever coveted. This makes twice in my life that I was blessed to have the car I wanted most... my dream vehicle! It's even in the color I always wanted... 'cause that's important! LOL. Am I a Lucky Girl, or what!

[4] The end of Summer always gets me down dooby doo down down. I LOVE Summer... And this was the Summer that wasn't with all the illness, hospitalizations and illness. (Yup, all 3 are down again: one with a sinus infection, one with strep and one deciding which way he's going to go with his fever!) But we did go camping twice, swam in the pool a lot, got to the beach, went kayaking and even enjoyed a few outdoor concerts. We even got potty trained! Considering our limited opportunity and difficulties, we did OK. And there's still a week to go! If our latest round of treatments go well, weather permitting we'll be at the Zoo on Tuesday with a slight chance of Splish Splash on Wednesday. Filling the remaining days with boogie boarding at the beach, some more pool time, hopefully one last beach concert and -- who knows? -- maybe even a road trip in my new car to Washington, DC to pick up a double kayak from a friend looking to donate it to our good cause. (You can't kayak a family of 5 with 2 single kayaks... but 2 singles and a sit-on-top double? Now you're talking!) While we're down there we can hit the Smithsonian for a live stroll through Night at the Museum II, one of The Boys' favorite movies! We'll have to see what develops in the petri dish, what heals and what falls from the sky... but I plan to make the most of the 8 days I've got left one way or another!

[5] And finally, as I look around at my sick kiddos laying around me on the couch as I type this -- patiently waiting for me to put a new movie on -- I'm thankful for their extraordinary good health. I know that sounds funny with our current and active diagnoses of strep, sinus infection and ??? accompanied by 100+ fevers, body rashes, sore throats, coughs and sniffles. But, the truth is, my kids are incredibly healthy. Stop laughing and hear me out.... We have no heart defects. No digestive difficulties. No eye disease. No immune system issues. No chronic health problems. I am soooo thankful for their good health! THEIR bodies are strong. Their minds are clear and focused. And their spirits -- ahhh, their beautiful and peaceful spirits -- bring a smile to my face every time....

Thank you God for these beautiful gifts!

Integrate! Include! Provide Peer Role Models!

2010-08-26T13:05:00.002-04:00

One of the comments about the boys riding a tricycle really struck a chord. Made me think about what we're all doing here and how we're trying to get that done. I am an Inclusionist. That is, I believe that my children learn best when they are included in the "normal" activities that any other child -- with or without special needs -- would experience as a function of living fully integrated in our society, attending our public schools and growing up just like everyone else in our town. And I mean ALL THE WAY INCLUDED with supports added only as needed to achieve success!

My personal philosophy in raising my children with special needs has been developed through my vast (LOL) life experience (friends and family with various special needs), education (BA in Psychology with Minors in Psychology for Exceptional Children and Art), and constant review of best practice research as well as talking to everyone and anyone with a thought on the subject. I could be wrong... but I like to think I've supported my beliefs with scientifically-proven facts. I'm open-minded such that I continue listening to others' philosophies and reviewing the research... But so far, nothing flies in the face of the inclusionist philosophy as best practice... for me. I am also a to-each-his-own Mama. So, I'm talking about me and mine here. You do what you want! BUT....

Back to the Riding-a-Bike comment:

I tried like heck for years and years to teach The Boys -- encourage them, reward them -- to ride a tricycle. And my beautiful Little Men, who happened to have been born with an extra 21st chromosome, are only 5-years-old so this amounts to a tad more than half their lives. I pulled and pushed and dragged and kicked until my back was sore on every different version of every different ride-on toy with pedals -- trikes, bikes, big wheels, scooters... you name it, I tried it -- to help them learn to ride. The most I got, independently, was 2 rotations of the pedals... which I was actually OK with... sorta. I figured this would eventually develop into 3 and 4 rotations, then 10 and 100 rotations. The school Physical Therapists worked on it. The Teachers Aide worked on it. I worked on it. Still, at 5, we were holding steady at 2 rotations with no progress beyond that in sight.

And then, last week, we went camping with about 40 of my cousins and a few friends. Collectively, there were in excess of 20 youngish children in our group -- from 1 to 15-years-of-age -- riding bikes of all types and sizes. More than half of them were near the boys' age and riding up and down and up and down and up and down the car-less camp road right in front of our camper. All day long and well into the night, bicycles were the preferred mode of transportation -- to the beach, the playground, the camp store, the bathroom, the neighboring tent or camper, around the horn and anywhere else one wanted to get. And this was the case, not just in our group but throughout Hammonasset's HUGE campground. Everywhere The Boys looked, kids rode bicycles, tricycles, big wheels and scooters. Adults rode bicycles. Bicycle wracks could be seen on every car. Bicycles stands graced the outside of every public building. And bicycle helmets rested on every picnic table. Bicycles... with "TYPICAL" children riding them.... as far as the eye could see!

So it's no wonder that just 3 days into the trip, the boys confiscated their cousin's trike and pedaled like mad men, as you saw in the videos in my last post. I'd mistakenly thought we were so far from actually riding I did not even bother bringing our latest pair of now too-small-for-the-boys-to-ride tricycles with me on the trip. Why? Just more "stuff" they wouldn't use, I thought. Well, the trike they confiscated was nearly the same size and type as what we have at home, IN the house and always readily available for riding! It wasn't properly fitted. It wasn't developed for children with special needs. But there it was... AVAILABLE when their self determination to ride -- teased out by their typical peers -- struck them. And, I'm CERTAIN that the desire hit because they wanted to ride with the other kids, to be just like the other kids. They wanted to do what the other kids were doing, go where the other kids were going and get there the same way the other kids were getting there... on bicycles!

It wasn't the little boy in the wheelchair that encouraged them to ride that trike. Shockingly, one doesn't learn to ride a bike from someone who can't ride a bike. No more than one learns to talk by being around people who don't talk. The Boys did it -- and so, eventually, can the little boy in the wheelchair once he gets that cast off his leg -- because they saw it being done by their peers. By "typical" children... And, DARN-IT, they wanted IN!

The research shows that this is how INCLUSION works in every area of life. The other kids climb the ladder at the playground. They climb. The other kids eat their lunch by themselves. They eat. The other kids write their names. They write. The other kids read the books. They read. The other kids talk so everyone understands. They talk. I've seen it work in my own little family pod over and over again. How could it work any less in the bigger picture? In the community? The school? The world?

Yeah, I'm an Inclusionist. If you haven't tried it yet.... give it a shot. It might work for you too! And, as a function of my on-going research in this area, let me know how it goes.

You NEVER Forget -- Like Riding A Bike!

2010-08-25T08:27:00.006-04:00

We camped this past week... me and the kids. There were challenges and triumphs but the biggest of all...

THE BOYS RODE A TRICYCLE

FOR THE VERY FIRST TIME!

I mean really rode... not just 2 rotations of the pedals as they've done for about a year now. My Big Little Man just got on his cousin's trike and rode. So the Little Man said, "My Turn!" and followed suit... lest his brother grab all the limelight! So, instead of pics today, I'm sharing video thanks to my girlfriend who had the wherewithal to grab her phone and shoot! Though we missed the initial moments where he first jumped on and rode, you can see that they get it now! Priceless!

Gotta go buy myself 2 copies of that trike!

More Special Exposure Wednesday on 5 Minutes For Special Needs!

TIME TO GIVE THANKS

2010-08-15T08:21:00.004-04:00

I'm inclined to reinstitute my Thankful Thursdays or Thank God It's Friday posts because I find I'm less mindful of ALL that I have to be thankful for without making that concerted effort to write it down at least weekly. And I post less often too! So, long over due, here's what I'm thankful for lately:

[1] I am ever so grateful that God saw it fit to spare my little boys too much illness and mal-effects from their stint in the hospital suffering from pneumonia recently. It was a tremendous learning experience about my boys and the minor way their Down syndrome impacted their illness and wellness... And, I learned how much who they are impacted the outcome even more. Thankfully, we're over it now... but being in Schneider's Children's Hospital versus our community hospital really put the whole thing into a grand perspective. We were just there waiting to get well again while others were struggling desperately for their lives and good health. As friends and family put The Boys on their prayer lists I was asking them all to add the other critically ill children we shared the ICU with to their lists as well. I'm still praying for all those babes and their parents.

[2] I'm thankful that the quick-fix minivan we purchased upon the birth of our twins survived for as long as it did and didn't cr*p out on me until after the boys' 60-mile-a-day school commuting was pretty much done. It did it's job well and for not much money. I complained about it not being stylish only half as often as I outwardly appreciated it for doing its job... getting me, my kids and my stuff safely where we needed to go. And thanks go to Jan, my beloved friend Lori's hubby, for finding it for us on eBay on such short notice those long 5 years ago! Our Silhouette will be moving on shortly to it's final resting ground with tons of very funny stories to tell it's new friends at the junkyard about this last crazy family that owned it.

[3] I'm grateful to have so many wonderful employment opportunities in such rough economic times. Come September (or so), when the kids go to school, I'll be re-joining the workforce. I have a few potential choices so I'm still deciding exactly what capacity and which hat I'll wear for those few hours a day... but I'm looking forward to earning some money (to pay for the new van we're spying) AND to do something for ME... that will hopefully benefit my children as well. I've always felt fulfilled working in the corporate world with a paying job. I'm sure what ever I choose, this will be no different -- especially since most of my opportunities involve some form of advocacy on behalf of my children and all people with Down syndrome and/or special needs.

[4] I'm beyond grateful that I've had the chance -- when so many do not in these tough economic times -- to stay at home and raise my babies up to this point. I used to say that Burger King -- working with my High School friends at 16 years of age -- was my favorite job. That got bumped when I went to Kansas City to help start up Sprint PCS (awesome opportunity with GREAT people). BUT, motherhood and raising my babies has far surpassed both of those jobs. It's the hardest, most fun, least and most rewarding job I will ever have! Payment comes in hugs and kisses and pride in the wonderful people my children have become! It is just awesome!

[5] I'm grateful for my life with all it's ups and downs. I'm glad to be here! And no matter how tough it gets, I'd rather be here than not. My dear old aunt once said, "this getting old stuff is for the birds!" To which I replied, "but it's better than the alternative 'cause I sure don't want to die young!" There's so much more I want to do in life. So much fun to have. Great pride to feel. Achievements to chalk up. No, I'm not done yet! Gotta go out there and live this life I've been gifted to the fullest.

Have a wonderful day all! Try and appreciate the little things today!

Passion Without Persistence

2010-08-12T09:43:00.002-04:00

I recently read a familiar old quote from Calvin Coolidge shared on one of my regular blog stops, Mary Jaksch's Goodlife Zen. Coolidge speaks of the key to success being beyond talent, genius and education, but rather lies in persistence. And persistence is much easier to maintain if you have passion! I'm not necessarily talking about the sexual kind of passion though that does breed success as well... among other things. I'm talking about the deep-down-in-your-gut excitement you feel when you're about to do/get/have/experience something you just love love LOVE! Something you're passionate about. Something you can't wait to do over and over again. (Family blog here, keeping it clean!) If it's something you want, something you're passionate about, then persistence comes easier! And without persistence, what you end up with is unrequited passion.

My heart used to race with excitement at the thought of an upcoming SCUBA dive. Heck, I'd set the alarm clock for 1:00AM to make a high-tide dive an hour and a half from my home. And, I'd jump in the water 2 hours later if the opportunity presented itself again. As a SCUBA Dive Master I assisted in SCUBA classes 2 days a week after work and made an average of 2-4 dives a week during the northeast dive season. SCUBA diving TOTALLY blows my skirt up! Even as I type this, the idea of getting in the water and diving anywhere excites the daylights out of me. Unfortunately, it's been 9 years since I've gone diving... not since I became pregnant with my Old Soul (because diving contraindicated for pregnancy and breastfeeding). As such, I've lost my persistence and, sadly, my passion has been sidelined to other more pressing things in life!

Then there's running. I was never a good runner. Matter of fact, I never referred to myself as a runner at all. The boys' PT said running is when both feet leave the ground at the same time... so I'm not sure I EVER actually "ran". But you can be sure I was out there 7 days a week logging 3-5 miles a day! And I loved it! Cruising the neighborhood, the sunshine in my eyes, checking out my neighbors' landscape designs or spying through lighted windows as folks relaxed into their evening routines, making my way [albeit slowly] down River Road, watching the water gently roll out to sea, all to the beat of my beloved Eagles 'Peaceful Easy Feeling' and 'Taking It Easy'. Priceless! Sadly, it's been a long while since I ran/jogged/did whatever you want to call it, on a regular basis... It's just not nearly as easy to find the time nor as peaceful pushing 100+ lbs of boys yelling "home" in a jog stroller. My passion still exists but my persistence has taken a back seat to other priorities.

You know I could go on... There's a bunch of stuff I love like mad to do but don't get to do much anymore because it doesn't fit into my schedule or is incompatible with motherhood just now. Things like playing beach volley ball, mountain biking, roller blade hockey (I used to love playing defense), going to the movies on Friday night or out to dinner with the Sarge. Those things either don't happen anymore or happen WAY to infrequently.

I've lost the persistence behind my personal passions! The kind I had when I couldn't wait to get there and do that. I'm talking about waking up excited about the things I'm going to do this wonderful day.

Don't get me wrong, I am massively passionate about my children; loving, teaching and advocating for them... No, there is no lack of persistence when it comes to my passion for my children! I'm excited about waking every day to their smiling faces and spending time with them. But I'm not excited about figuring out what to make them for breakfast, lunch or dinner. I hate to cook! I'm not excited about driving them 60 miles round trip to school. I'm not excited about doing laundry, dishes, mopping the floors or vacuuming the house. I am NOT passionate about the daily grind that goes along with the life I'm living just now. I know.... SHOCKING! But, I'm missing the things I'm passionate about! I'm missing the persistence that makes me successful in actually DOing these beloved activities.

Yes, I admit it, I've lost (or more realistically given up) my persistence with a number of things I'm passionate about... and I miss 'em like heck! So, as the parent of two children with Down syndrome and an Old Soul that all lovingly demand my attention, I'm asking for ideas on how to get it back. How do you fit in those activities that you were once passionate about but that have taken a back burner to this truly joyful and wondrous life of special needs parenting... or any parenting for that matter.

First Paddle Boat Ride

2010-08-11T21:11:00.005-04:00

Camping at beautiful Woodland Hills Campground in Austerlitz, NY
on the Massachusettes border in the Berkshire Mountain foothills.

My Big Man

My Little Man

Sarge and The Little Man

My Old Soul, Me and My Big Man

Special Exposure Wednesdays at 5 Minutes For Special Needs

The Crystal Ball

2010-08-08T10:28:00.006-04:00

Ah, to gaze even for a moment into the magic crystal ball for a glimpse of our future. To know that this will all turn out OK! Wouldn't that be nice? Just a second in front of that looking glass to get the gist of things and know that it'll all work out ultimately. The thing is, I love a good "surprise" and there are so few good surprises left in this world... so I wouldn't want specifics if there were such a thing as a crystal ball. All I would really want to know is that, in general, my life and, more importantly, the lives of my children will be OK... peaceful... easy... "successful" each by his or her own standards. Isn't that a funny statement? Especially when I already know that parts and pieces of my life haven't really been peaceful or easy thus far.... But, I do know that it's all turned out OK... so far!

Finding a rewarding career, choosing a mate, maintaining a happy marriage, raising children -- raising children with special needs -- deciding how to best educate those children, and keeping my wits (and sense of humor) about me are all really difficult endeavors when you're in the throes of it. Looking back (so far, anyway) IN GENERAL, it's been relatively easy. But, in detail, it was and is sometimes extraordinarily hard and painful. Tears flow so much more readily these days than they used to and for so many more important and more trivial reasons and emotions.

The truth is, life is a dirty little affair with major ups and minor downs, huge hurdles and tiny victories throughout. No, I don't know what the details of my life and my family member's lives will be going forward. But I do know all too well what the details of my life/our lives have been so far. Some things I definitely could have done without and, in hindsight, I'm glad now for other things that have come to pass that I would certainly not have chosen, planned or wished for but that have been unbelievable blessings in my life. No one knows how things will turn out. There is no crystal ball. There is only this life to live to the fullest.

So, without the benefit of the crystal ball, I know this: I will find myself again in some career that will either be fulfilling or not. I hope for the former! My marriage will either stand the test of time, commitment, financial woes, children, Down syndrome, careers and so many other factors that may or may not contribute to it's demise... or it may not. We will either find ourselves in the 50% that make it or the 50% that don't. I'm working towards the former! And, my children will be well educated. They will grow up and live their lives according to their choices (and my positive influence hopefully, LOL) as independently and successfully as they are able. I don't, in fact, know specifically how well they will do. But I'm sure, in general, that it will be awesome in my eyes and, hopefully, in their eyes and in the eyes of the critics. In all of these areas and in my life in general, I believe that regardless of the specific ups and downs that grace our daily lives, it will all turn out OK in the end. That doesn't mean I won't fret about and/or shed tears about all of these things while I'm in the throes of it!

There's a line in Finding Nemo where Dory says to Marlin regarding his over-protection of Nemo, "Well you can't let nothing happen to him or else nothing will ever happen to him!" She's right! That's no way to live a life! We have to be in the game, right? We have to jump in, make choices, make mistakes, find our own way and be gracious enough to receive the good with the bad. We don't get to pick and choose, in advance, which good parts or which bad parts we'll take or pass on. But, we do have choices about how these events play out in our lives and how we view the outcome that is our life, in general. And in the end -- despite the rough spots --I do believe it will all be OK... however it turns out!

But that doesn't mean I STILL won't worry about it... just a little bit (LOL).

Half of a Hair Cut

2010-07-28T17:32:00.003-04:00

They FINALLY let me cut their hair for summer!
Here's what they would look like if they chose different styles...
Not looking so identical now! LOL

Not to worry, I did finish the job!

Click for more Special Exposure Wednesdays on 5 Minutes For Special Needs!

You Think I Have Down Syndrome All The Time!

2010-07-19T17:01:00.006-04:00

My boys don't have Down syndrome when they're eating at Wendy's, their favorite restaurant!

The story linked below was forwarded to me through a yahoo group I belong to of families with multiples where one or more has Down syndrome... like me/mine. I'm linking it here because it was just too good not to share. I'd have reprinted it but Dave Hingsburger, blogger and advocate for those with disabilities, has a creative commons copyright on his blog... so I'm sending you directly over to him to read this extraordinary story... A story EVERY parent of a child with Down syndrome, every body whose life is touched by a child with Down syndrome and everybody who impacts the life of a child with Down syndrome should hear!

Click and read... please.

Motherhood Post-Crisis Fatigue Reflex

2010-07-15T19:45:00.007-04:00

I know I'm not the only one who's ever felt this way. I can't be. But boy do I feel exhausted... and frustrated with all the child-rearing stuff that's still on my plate after all I've been through. I know everyone in my family has been through it with me... but right now, this feeling of depletion is all about ME! I feel like a terrible mother! I think it's a post-crisis fatigue reflex to compliment my family's gag reflex LOL!

Yes, I've somehow kept myself standing through the past 6 or 7 weeks of my children's' illnesses and hospitalizations. Beginning with a lactose-overload stripping of their intestines. Followed by weeks of diarrhea, vomiting, high fevers, hospitalization, pneumonia, repetitive chest x-rays and experimental treatments, a partially collapsed lung, pulse oximeters, oxygen tanks and more... so much more for my poor little babies. Yes, I've dealt with a bunch of difficult stuff (though recognizably minor compared to what others deal with every day!). I've stayed up [mostly] through entire nights just to listen and watch him, or him, or her breathe. I've slept sitting up in a chair or crunched at the foot of a hospital bed... Only to be awakened multiple times by the beeping of one machine or another indicating some number is not where it should be... some aspect of my child's well-being is in question. I've been knocked down with my own illness in the middle of all this, only to crawl back up onto my knees to keep on praying.

And through it all, we've somehow managed to maintain the potty-training regimen for BOTH boys despite hospital stays with IV hoses, IV fluids, and oxygen hook-ups. Despite our inability to double-team our 2-man team of formerly diaper-clad, sometimes incredibly-stubborn-about-toileting little boys. And, we managed -- with much help -- to get the Old Soul to her socially-important final days of school and end-of-year parties despite the fact that The Sarge and I were sitting bedside vigil in different hospital wards each with our sick little charge. We even managed, very well I might add, to work together to get it all done without disagreement and to still love and respect each other on the other side of our shared crisis.

So why am I so darn bone-tired when things just got soooo much easier? Why am I suddenly feeling inexplicably angry over nothing in particular? Why do I feel like such a bad person for feeling this way NOW after all we've come through? Why do I want to scream at the top of my lungs, "NOOOOOOO! I don't WANT to drive my beautiful little men 60 miles a day to and from a school that I wish they didn't have to go to for Summer!"? Why am I blaming anyone but myself for gaining back a very few lost pounds during these trials and tribulations (sitting on my butt in a hospital room, eating nothing but hospital food)? And with a small but definite lull in our daily activity, why am I not able to carve out a moment of time or energy to refocus just a little tiny bit on myself to eat right and exercise? Now that things have settled down, why do I feel the need to run away [briefly, mind you]... To jump in the car all by myself and drive somewhere of MY choice [not too far away in case my kids need me] to spend a peaceful and quiet moment enjoying the way the sun sparkles on the water's calm surface?

Ah... there's much wisdom buried in that last heartfelt desire!

Yes, I'm more than a few years into this journey but I've just figured out that, at times, there are going to be days, weeks and even months like this. Thankfully, most days my cup runneth over -- truly! -- with the joy and laughter of my beautiful children. But when these hard days, weeks and months hit -- and they will -- I've learned that I have to take the time to refill my own cup afterwards! Like storing nuts for a hard winter, I have to replenish the used-up supply!

I don't know for a fact that I wouldn't have had these same kinds of days if a couple of my children didn't have special needs! Or if a couple of my children weren't twins! Or if maybe I had just a couple less kids! But I promise you, I wouldn't trade my beautiful kids for the world! Besides, listening to my mother's crazy child-rearing stories, I realize it's not about the number or type of kids you have. And it's not about the breadth or depth of the crisis! It seems to me, no matter what kind of kids you have -- kids with special needs, 5 kids, only-children, teenagers, boys, girls -- sometimes this motherhood thing is tough! And when the Post-Crisis Fatigue reflex sets in, only a moment of respite will fill your cup and prepare you for the next wave of life, whatever it may bring.

Footprints

2010-07-14T08:34:00.007-04:00

Growing up, I read the story, "Footprints", about a faithful man coming to the end of his life and finally having the opportunity to meet Jesus at the gates of heaven. Throughout his life he'd been promised that Jesus would always walk with him if he believed. As he reviewed his life, he saw there were two sets of footprints in the sand -- one set his own and one set belonging to Jesus who walked beside him as promised. But, he noted, during the most stressful times in his life there was only one set of footprints in the sand. He asked Jesus, "Why would you abandon me during the most trying times of my life?" And Jesus answered, "It was during those times, that I carried you!"

I see the footprints in the sand... and I know that I am NEVER alone! I am surrounded by the footprints of those God sent to help me, love me, save me... Including the unique footprints of my beautiful children who happen to have been born with an extra 21st chromosome. And I know that through my most stressful times, it is THIS gift especially -- my amazing children and their undying, unconditional and all-encompassing love... for me, for life, for all -- that will carry me through my most stressful times. I believe and I thank God for them every single day!

Check out more Special Exposure Wednesdays at 5 Minutes For Special Needs.

Long Drives & Family Gag Reflexes (Not for the Weak-Stomach)

2010-07-11T20:13:00.002-04:00

WARNING: This post is not for readers with a weak-stomach. It's for those of us who laugh our butts off (not literally unfortunately or I'd have the tiniest derriere this side of the Mississippi!) at those who have strong gag reflexes! Yes, here's another story that reflects MY side of the family's warped sense of humor.

This is about people like my husband who has a strong gag reflex that he OBVIOUSLY passed on to our children and who doesn't think it's one bit funny when I laugh til I cry as he gags (ya gotta hear him gag) when a little hard thing in his burger finds its way into his mouth. BUT, even the Sarge belly laughs over the chain reaction gagging we get out of The Boys and the Old Soul!

So here's my latest experience with our infamous family gag reflex.

Our story begins on the long and winding road (you know that song?) home from the James Taylor concert that I was pseudo-forbidden to go to by our Pediatrician. Actually it was the camping, not the concert, he was against after our stay in the hospital. But, I finally got a "not no" answer for the concert without the camping which I took as yes and jumped in the mini-van for a 3-hour drive... a 3-hour drive (are you singing that part to the tune of the Gilligan's Isle theme song?). We drove straight up to Tanglewood in Lenox, Massachusetts to see our collective family-favorite artist perform in a lawn concert. Come on, life doesn't get any better than that, does it? So we enjoyed the heck out of the concert, packed up our oxygen and slept a few hours in a hotel overlooking the Mass Pike before heading home bright and early the next morning. My good intentions were to stop at McDonald's for a quick breakfast -- I didn't say healthy intentions -- as I just wanted to quickly feed the crew. But our GPS brought us WAAAAAAY off the beaten track and then inconveniently lost the satellite leaving us just as lost as the Skipper and his passengers on the Minnow... Right smack in the middle of no where! I tried to backtrack as much as I could remember and finally happened upon a nearly-deserted truck stop cafe. We took more time than I wanted to sit while The Boys ate their favorite breakfast of pancakes (though not my home-made chocolate, chocolate chip pancakes) while the Old Soul enjoyed her beloved bacon and eggs.

FINALLY and painstakingly done with every delicious bite, we headed out as the GPS directed us once again through the deep countryside for miles and miles of twisting country roads intermittently losing and finding it's signal. When I was thoroughly sure we were hopelessly lost I spied the little green highway sign for the Taconic Parkway -- our planned route home, but one I was sure I wasn't going to see again. Massively relieved to be finally on a known, major roadway, pointing steadfastly in the right direction and productively on our way home, I put the pedal to the metal to meet the increased 65 mph speed limit. Within minutes we were zooming along the scenic Taconic when Michael began with a small little cough. When you have 3 children recovering from pneumonia, a small little cough here and there is to be expected. But this one persisted, as though My Little Man had something stuck in his throat. (Probably one of those pneumonia-producing mucous plugs I swore didn't exist because he never coughed up a thing during his 15 days in the hospital!) I suggested he take a drink of his readily available apple juice and he obliged. But soon thereafter, the cough escalated to a near-but-not-quite choke. I scanned the horizon for a place to stop, seeing only the "15 miles to next exit" sign in view. For those who have never traveled the Taconic, there's much beauty but NO amenities on this road... and NO SHOULDER! With budget cuts in New York State, the road crews barely cut back the tall grasses and weeds on the sides of the roads these days... I kid you not. So, as the cough became a choke and the choke became a gag there was literally NO WHERE for me to pull over! Not for another 15 miles!

The gagging worsened and the Old Soul began yelling, "Mom, he's going to throw up! Do something!" I'm sure she wasn't happy about it, but she was right and there wasn't a thing I could do! He finally blew and projectile vomited all over the back of the car. With steep gullies and woods on either side of the road there was STILL NO WHERE FOR ME TO PULL OVER safely or otherwise! I certainly couldn't stop in-lane on a well-traveled 65mph highway! So I prayed he wouldn't choke and we both continued, the Little Man vomiting and me driving, frantically looking for a break in nature! Either his vomiting or the trees!

And here's the truly laugh-out-loud funny part: As the Little Man vomited, the Big Little Man looked on and began to gag himself. He gagged louder and louder and longer and longer, watching his little broey throw up. Not able to take his eyes off of the gruesome scene he continued gagging, sounding just like his dear old Dad. Long guttural gags that started in the toes and growled their way out of his little body sounding like they were coming out of a 200-lb, nearly 40-year-old man... just like his Daddy! Seriously LMBOing! Ultimately the Old Soul succumbed with her own gagging as I yelled at them both to, "LOOK AWAY! DON'T WATCH!" while still trying to vocally comfort my poor Little Man who, I could see in the rear view mirror, was still blowing his breakfast all over the car. My back seat was a scene straight out of a Monty Python movie! Me? I was crying -- because I was laughing so hard -- still searching the roadway for the break I needed that FINALLY came.

I barely fit the car onto the little strip of mowed grass (probably where the State Troopers sit as a jump-off to catch speeders). I couldn't get out the driver's side as my door would have been ripped from it's hinges by passing cars flying by at 65+ mph. I couldn't get out the front passenger door as the space was fully occupied by the huge oxygen-making machine loaned to us by the hospital, blocking my access. So I climbed into the fray of the back seat only to realize the sliding door was child-locked from the inside. COME ON! Back up front, hospital-property be damned, I climbed over the machine, out the door and threw open the sliders. The Big Little Man still gagging, the Old Soul staring out the opposite window as if ignoring the chaos beside her, trying to keep her mind from thinking about what was happening and barely able to control her gag reflex, while the Little Man sat quietly amidst the wreckage. Yeah, now he stops!

I quickly check the glove compartment, under the seats, in the door and seat pockets... There is not a single napkin or paper towel in the entire vehicle! THAT never happens! I horde fast food napkins for such occasions! But the Sarge took my bus through the car wash and cleaned up inside for the trip. Love that guy, but this time his timing was impeccable! With 2 potty-trained little men, my mind did not automatically go to wet wipes but did ultimately recall the bag tucked underneath the back seat with a few spare diaps, undies and half-used container of wipes.

Thankfully, JUST before the melee, I'd told the boys to take off their shoes and socks and settle in for a comfortable trip. So my Little man was barefoot. I sponge bathed the Little Man's legs, arms and face with wet wipes; carefully removed his shorts, wiped down his booster and covered the damp seat with a couple of the spare diapers laid open. For the first time in my 8 years as a mother, I was grateful for the projectile part of vomiting because the only clean shirt we had was the one he was wearing and it was still, miraculously SPOTLESS! Through my own intermittent fits of laughing and gagging, I was able to clean up the car to the point where the Old Soul was actually able to look without gagging herself and compliment me, "Wow Mom. You did a good job with just a few wipes!"

After I tied the knot on the garbage bag and we got underway again, my beautiful little girl expressed how dumbfounded she was at how I could stand to clean up such a HUGE and disgusting mess... and why in the holy heck was I laughing while I did it. I explained first that I just kept telling myself, "it's just spilled pancakes and apple juice" because that's all The Little Man had eaten! Then, laughing at the thought, I added that someday, when she was cleaning up after one of her own children who had thrown up, she'd remember THIS day, and remember me laughing and would laugh about it herself. She hesitated and then replied,

"I don't think so!"

Life Is Short!

2010-07-11T07:17:00.008-04:00

"

I wish they had this in Penn Station when I was commuting. You can bet I'd take THAT Fast Lane EVERY SINGLE DAY! I mean, seriously.... Why walk when you can glide through life?

Never pass on an opportunity to have a little fun!

Watch the video by clicking the pic and think about it... seriously. Then click the back arrow when you're done and let me know if you'd jump on or pass! And whether you think you'd regret passing if that was your choice...

Personally, I can't imagine having any regrets for taking this path of least resistance and more fun!

You CAN'T Make This Stuff Up!

2010-07-05T07:06:00.000-04:00

So there we are, sitting around the ER triage bed when the doc comes in to examine my sick Little Man. As he prepares to put the stethoscope to my baby's chest, he hears the faint sound of giggling behind him and turns to see my Big Little Man and the Old Soul playing quietly underneath a table in the corner of the room. He looks at the boy under the table, back at the boy in the bed, then back again at the boy under the table playing with his sister. The Sarge and I smile to ourselves as we see the twin recognition slowly creep into the doctor's brain. We proudly confirm his unspoken suspicions, "Yes, they're identical twins". At this point, the doc leans in as if he's going to share some intimate secret with me and says in a hushed tone, "So, do they both have.... (he leans further in and looks me earnestly in the eye)... autism?"

WHAT?????

I lean in dramatically, preparing to bestow the wisdom of the ages upon him and say out loud and with the great pride, "No, actually! Neither of them have AUTISM. But they do both have Down syndrome."

Seriously.... This man has a degree in medicine? Don't they cover genetics in medical school anymore? I'm pretty certain they cover it in most High School Biology Genetics units. Anyway, the Sarge was ready to get up and leave right then and there (LOL) no longer trusting the man to treat our child. Fortunately, the powers that be swiftly intervened with an ambulance transfer to a highly reputable children's hospital on the north shore. Fortunately, folks there recognized that my son had Down syndrome OR at least had the good sense to keep it to themselves if they didn't. Probably better that way.

My New Normal? God Help Me!

2010-07-04T00:54:00.004-04:00

FIRST NIGHT HOME FROM THE HOSPITAL:

The pulsox beeped literally ALL NIGHT LONG,. The machine I've come to refer to as "the reducer" reduces (hence the name) the 02 level to 3/4s of a litre per minute no matter what I turn the oxygen-making machine to. I can't get more oxygen, therefore I can't get the Little Man's osygenation levels up to the prescribed 92 or above. I'm up all night struggling so my Little Man doesn't have to. It doesn't work for either of us. The next morning, I call the 02 supply company but they don't call back. Before bed the Sarge and I reconfigure the reducer out of the loop so I can resume implementing 1 to 1 1/2 litres/min so my Little Man can breathe.

SECOND NIGHT HOME FROM THE HOSPITAL:

10:16 PM -- Pulsox beeping. Oxygenation has fallen below 92. Silence the alarm. Check the sensor on the Little Man's finger. Stick the cannula back in his nose. Unravel him from the tangle of oxygen tubes and sensor wires... a little scary thought that he could strangle and I need to find a better method sniggles into my sleep deprived brain. Doesn't help me sleep any!

10:24 PM -- Pulsox beeping. Oxygenation has fallen below 92. This isn't going to work. Turn up the 02 machine, check the sensor on the Little Man's finger, replace the cannula in his nose, unravel the tangle of tubes and wires from his incessant tossing and turning and go back to bed.

10: 39 PM -- Pulsox beeping. Oxygenation has fallen below 92. Darn it. Check the sensor, it's pulled off his finger. Relocate it to his big toe to keep the wires away from his neck... that'll work! Oxygenation rises slightly. Check the cannula. Oh well, best I can do, I think.

10:53: PM -- Pulsox beeping again. Seriously! I'm never gonna get any sleep at this rate. I turn the level down to 90 and the beeping stops.

11:15 PM -- Pulsox beeping! Turn the 02 machine up to 2. To heck with trying to wean him from his overnight 02 requirements. He's OBVIOUSLY not ready for that yet! Oxygenation level goes up to 96. I'm happy! But more importantly, he's oxygenated! AND SLEEPING!

12:21 AM -- Pulsox beeping. He's wiggled the sensor off his toe. Relocate it to his tall-girl toe. Figure he has a lot less mobility in that digit... I mean, she's nearly useless on the hand except to hit the "L" or "O" on the keyboard, right? Seems to register his oxygen levels even better than on his big toe.

1:30 AM -- Pulsox alarm says the sensor's not working. Check all the connections but nothing appears amiss. Replace the pulsox sensor with the other one they gave me that's nearly as beat up. Does the trick for now.

2:59 AM -- Open my eyes to peek at the pulsox. It hasn't beeped in over an hour. Reads 95. That's cool. Back to sleep.

4:19 AM -- The Big Little Man scooches over to use me as a pillow and kicks the Little Man in his sensor-laden foot. Pulsox beeping. I retape the sensor and fight heartily to keep the Big Little Man from kicking his broey. I finally opt for dragging him back up to the head of the bed and snuggling with him sandwiched between The Sarge, the body pillow and the Little Man. NOT comfortable but it works. He's asleep again.

4:39 AM -- I wiggle away to the foot of the bed and grab some elusive sleep.

6:31 AM -- Wow almost 2 hours of uninterrupted sleep. How did THAT happen. Check that my Little Man is still breathing (a rational fear given the circumstances). He is. All is well. The morning light is creeping up on the horizon. I roll over and sleep... my eyes off the pulsox for one minute.

6:58 AM -- Pulsox beeping. Of course it is!

LAST NIGHT:

11:37 PM -- Big Little Man up with raging diaper rash due to meds from his pneumonia... a minor post-hospital-stay potty-training set back. He can't sleep. Too itchy! I change his Underjam, wash and dry, re medicate with Nystatin and slather with Triple Paste. Fingers crossed as I drift back to sleep.

12:38 AM -- I'm UP! Big Little Man moaning and groaning due to aforementioned diaper rash that goes all the way down the inside of his thighs. Wash and dry him and lay him open to "air out" for a few minutes before changing his Underjam and re medicating. Rinse, slather, repeat.

1:40 AM -- Big Little Man tossing and turning, moaning and groaning. Diaper rash is killing him... killing me too. Go through the motions again. He falls asleep in my arms.

3:15 AM -- I fall asleep too. Must be tired or something. I carefully peel myself away and crawl to the foot of the bed where there's a square inch of empty space I can claim for my own.

Boy am I tired.

TONIGHT:

10:05 PM -- bedtime

10:55 PM -- kids actually fall asleep (Hospital stay has resulted in a major upset in our usual 8-9:00 PM bedtime schedule).

11:21 PM -- Hovering like a ghost over the bedside, the Old Soul scares the bejeebers out of me from a sound sleep where I crashed sandwiched between The Boys. "Mom, I can't shut my mind off and I'm a little scared sleeping by myself!" (Poor baby, must have been the abandonment she felt when the Sarge and I spent 24 hours/day in the hospital for a week with her brothers.) Me: Ok, babe, lay down I'll be right there.

11:27 PM -- I manage to peel myself away from The Boys without waking them, carefully replacing my big old warm and soft body with a huge feather-stuffed body pillow. Smart huh? Helps keep them from kicking each other in their sleep too!

11:55 PM -- Pulsox alarm goes off. I manage to peel myself away from the Old Soul without waking her... the cats were not so lucky. I silence the alarm. Check the toe sensor... still in place. Check the nose cannula... it's shifted out of the Little Man's nose. Replace it. Watch him itch it back out. Replace it again. Watch him itch it back out again. Replace it... sticks this time. Pull 2 small pieces of fabric medical tape off the roll (found out the regular stuff gives him contact dermatitis all over his face) and carefully place them over the tubes at the sides of his head to help hold them in place. He'll hate me for that in the morning but it's the only way any of us are going to get any sleep.... OK, it's the only way I'M going to get any sleep.

12:01 AM -- Slide into my corner of the midnight world at the foot of my king-sized bed that's been completely usurped by The Boys... Pulsox quietly pulsing away literally barely tucked under my pillow glowing in my face. I've learned that it's easier to sleep with the infrared light in my eyes so when I open them I can quickly see the Little Man's oxygenation level and know that he's safe than it is to sleep worried that he can't breathe.

12:49 AM -- Preternatural sense that Bubba, my Chow Chow, is staring me down... Well, maybe I heard her panting in my sleep haze or subconsciously caught the faint click-clic-slide of her little paws on the bare stairs. Regardless, there she is.... OBVIOUSLY she has to go to the bathroom. Darn it! I quietly shimmy over the bed-rail, kick the magna-doodle and limp down the stairs with one VERY happy dog. She sits out in the cool night air for several minutes so I open my blog and tap out a few thoughts...

2:02 AM -- Time to go back to bed! Just about every living thing in our house has had a turn waking me from my "peaceful slumber". No use trying to catch up on lost sleep from our 15 day sting in the hospital. Thankfully, the Sarge is self-sufficient these days with his climate-controlled, oxygen-delivering sleep apnea machine. Uh oh... I hear my Little Man moaning. I wonder what his problem is. The nose cannula is taped in place and the pulsox is not beeping. Gotta go see and reclaim my corner of the mattress... surrounded by my children hearing them breath just a little bit easier tonight than last night. And just a smidge easier than the night before that. Thank GOD!

Pneumonia: Everything I Never Wanted to Know

2010-07-02T18:28:00.003-04:00

Day 1

I think I knew that our Monday morning visit to the Pediatrician was a formality. By Sunday evening, Sarge and I were pretty sure we were dealing with pneumonia. My research said that most pneumonia's are treated at home so I didn't know enough to take my poor sick Little Man to the ER on Sunday (or even better, on Saturday). I did call the Pedi's emergency line on Saturday evening and explained my Little Man's rapid shallow breathing and high fever... but because he'd already started on antibiotics, I was advised to wait one more day to see if the medicinal effects kicked in. I know some of you must be gasping and thinking I'm an idiot but I hesitatingly agreed. I guess I didn't know any better.... this being my first experience with pneumonia...

Pedi said my Little Man's blood oxygen saturation levels were way too low (81) and with crackling lungs we were likely dealing with pneumonia, but would need a chest x-ray to confirm it. I drove straight from the Pedi's to the local hospital with all 3 sick kids in tow and my Blue Tooth lodged in my ear to alert Sarge that he needed to leave work and meet us there. The ER parking lot was full and as I slowly and carefully (I swear!) backed out of the over-packed lot a rude and impatient lady screamed at me. I opened my window and kindly said, "I'm sorry. We're all experiencing tough times here coming in to the ER" to which she replied, That's right BIT** followed by extraordinary expletives the likes of which would get me kicked out of the blogosphere if I repeated them, I fear. We met up with her again on the inside. But when I carried my little man in and signed in at the desk, they IMMEDIATELY whisked him into the ER triage (some small satisfaction that my emergency was apparently more critical than hers so she had no business yelling at me like that!) The x-ray confirmed the Pedi's diagnosis and the Little Man was immediately put on 02. After awhile, the ER MD said they were not prepared to deal with my Little Man's oxygen requirements and had arranged to transport him to the Schneider's/Cohen's Children's Hospital on the north shore via ambulance.

Our first ambulance ride! Lights, no sirens!

Long story a bit shorter, after much debate and varied treatment over several days it was determined that the Little Man had a nasty case of what turned out to be viral pneumonia. At one point part of his lower right lung folded and collapsed but quickly re inflated apparently (that was the good news). I spent 20 hours per day in the Pediatric ICU, relieved by the Sarge for 4 hours in the afternoon to go home, shower, dine and spend a few hours with my other 2 children before returning to my Little Man's bedside. On the 5th day during my 4-hour respite, I noticed my Big Little Man breathing hard, shallow, fast. I called the Pediatrician's after-hours emergency line to express my concern. At this point in the Little Man's treatment we were still operating under the impression that we could be dealing with a bacterial pneumonia which MIGHT respond to antibiotics. So, in an effort to avert disaster with my Big Little Man who was on day 7 of a 10-day round of Omnicef, I asked if I could get a stronger antibiotic? Our Pedi said there really wasn't anything stronger and if the Big Little Man was going down the same path as his brother there was little we could really do about it. The next morning at the Pediatrician's, my Big Little Man's blood 02 levels were at 87. Without hesitation, the Sarge drove up to the Children's Hospital for the all-confirming x-ray. If we were going to have 2 kids in the hospital, it might as well be the same hospital.... And so it was.

My Big Little Man was admitted to the Pediatric floor with a lesser if not identical case of his brother's viral pneumonia. The seriousness of his brother's condition playing into the decision to admit.

Day 8: My Little Man (left) was allowed out of ICU to visit his broey on the Pediatric floor...
But broey couldn't leave the Peds floor even though he wasn't as sick... weird huh?

The Little Man spent 15 days and nights in hospital, 12 of them in ICU. The Big Little Man did his time -- 7 days and nights -- on the Pediatric floor. We're all home now, thankfully, though the Little Man still requires oxygen at night. His lungs were harder hit and will therefore take awhile longer to recover.

So here's what I learned:

Fluid in the lungs develops as a function of the illness/virus and worsens due to inactivity. Activity helps the body to reabsorb the fluid automatically. Inactivity lets the fluid sit there... and increase. This is why so many older and/or post-surgical folks develop pneumonia, the inactivity promotes the conditions prime for developing pneumonia.

Because of the moisture and reduced lung capacity, spots of pneumonia begin to develop and grow. I thought the fluid was pneumonia and that one either had pneumonia or didn't. But the docs talked of pneumonia as areas of pneumonia. More like it was mold on a bread. My analogy! For example, my Little man had "a large pneumonia in his right lung on the lower right lobe and 2 smaller ones in the same area."

Unlike pneumonia, other respiratory afflictions have a generalized -- all over the lungs -- sound in the doc's stethoscope. Pneumonia is localized to the spots where fluid has built up and pneumonias have developed. This localization is a telling difference.

Oxygen helps heal the lungs, helps the sufferer breathe deeper and reduce the fluids... drying out and reducing the pneumonia spots.

Pneumonia in the lower lobes of the lungs are harder to cure because they're sitting in the fluids, thriving.

Viral pneumonia -- like viral anything -- does not respond to antibiotics. If antibiotics are prescribed it's to address and/or prevent secondary infections.

Docs will often run viral panels testing for hundreds of known viruses because knowing which virus you're dealing with can provide clues to how the virus will react, how long it will take to dissipate, and what co-symptoms may be present (like fever). For the comfort of the patient, meds may be prescribed to ease the symptoms... but NO meds will cure viral pneumonia. Viruses must run their course. (They could not identify the virus that caused The Boys' pneumonia.)

Bacterial pneumonia is treated with strong antibiotics. How do they know and/or differentiate between the two? If the prescribed antibiotics don't reduce or cure the pneumonia then it must be viral. (That's why it took some time to ascertain our diagnosis of viral pneumonia.)

Viral pneumonia is also recognized/diagnosed when it doesn't respond or progress in any prescribed fashion... which is indicative of a virus. It improves and degenerates, ebbs and wanes on it's own time clock. It's a 2-steps-forward, 1-step-back affliction. And, generally, the oxygen requirements slowly follow behind the recovery with 02 levels lagging significantly behind the clearing chest x-rays.

Asthma, sleep apnea and heart defects exacerbate pneumonia because they further challenge the sufferers' ability to breathe. (My Boys do not have any of these conditions despite the docs' insistence that these were likely playing a part in their slow recovery. Tests confirmed that I was right, The Boys don't have any of these conditions.)

The prescribed treatment for viral pneumonia is oxygen and time. All the other stuff they throw at the sufferer may or may not help. They could effectively address secondary issues -- which my guys didn't have. They may do absolutely nothing -- in which case, why do them? Or they may make them worse. My Little Man suffered agitation, the shakes, full-body weakness to the point where he couldn't stand and a rash all over his torso from the Albuterol treatments (generally used to address swelling of the airway in asthma).

Generally, coughing up the mucous stuck to the walls of the lungs and airways is a positive thing when dealing with pneumonia. There are several ways medical professionals address this. The old fashioned way is by patting the back hard with cupped hands (called "chest PT or physical therapy). The hospital also has several size suction cups to use instead of cupped hands... very effective but The Boys HATED them. The Thera-vest is a life-vest sort of contraption that fills with air and then pounds their lungs from back and front for a 10-minute session. They do this every x hours. The Little Man had it every 6 hours... and was very annoyed each time... especially at night. And, finally, in severe cases, a contraption is attached to the bed and pounds the bed-ridden patient at automatic intervals. Thing is, if mucous plugs -- as they're called -- are not seen in the x-rays, none of these more extreme treatments are necessary. Us? I cupped my hands and patted their backs every time they coughed and in between, to encourage passage of mucous. This is just a good practice for any coughing or congested child.

Day 11: The Little Man's Thera-Vest treatment (notice the blurred hands indicating rapid vibrating).

Finally, how did/does the fact that my beautiful Little Men also have Down syndrome play into this health fiasco? The answer is.... hardly. In fact, because my boys have no congenital heart defects related to their Down syndrome or otherwise, that did not contribute to the reduced blood oxygenation levels though many a doctor and resident suggested that as an explanation for their slow recovery (until they tested just to be sure I wasn't lying, and found the Boys didn't have any heart conditions). Additionally, my boys had tonsillectomies/adenoidectomies last year to address the sleep apnea issues that sometimes afflict children with DS. For the record, people with DS do not have large tongues, rather, they have slightly smaller oral cavities (mouths) and normal-sized tongues and tonsils. Having that surgery means that my boys' airways are clear and the reduced oxygen levels cannot be excused as a result of such obstructions.

Finally, and, in fact, the only area that their having Down syndrome came into play in this pneumonia scenario, was their slightly lower muscle tone. My guys actually have pretty high muscle tone for children with Down syndrome, falling in the low range of normal (like their mama LOL). Still, their lower muscle tone made/makes for a longer recovery period. That is, because the lungs and diaphragm are muscles, their lower tone and this period of inactivity means it's going to take them a bit longer to recover their previous tone than in a person with high muscle tone. Like everyone else, under using a muscle results in atrophy. To regain the tone, working those muscles out via activity is the only way to address this... which is why the Pedi sprung us from the hospital... with oxygen. The Boys needed to use their lungs, to breathe deep, to suck some wind. It would be like you or I (unless you, the reader is a marathon runner... rest assured the writer is NOT) suddenly getting up to run a marathon. We'd be winded over and over again during practice runs until our lungs and diaphragm learned to accommodate the extra activity. The Boys are practicing to run their very own version of the marathon called post-pneumonia life. And they're kicking butt.... slowly!!!

Yes, pneumonia is a double edged sword. You must get enough rest to clear the infections but also get up and move to clear the fluid from your lungs (which the body will reabsorb with activity) and to exercise your lungs and diaphragm to recover. Too much of the former will make the latter more difficult. And too much of the latter will make the former worse. Now that The Boys have cleared the pneumonia spots or infections, we're walking that fine line between rest and regaining our former muscle tone while avoiding a relapse of pneumonia. We're not quite there yet but we can see their progress every day if not in their blood oxygen levels, then definitely in their respiratory rates. The rest will follow in it's own time.

End Note: For all you parents out there, whether your child has Down syndrome or not, I strongly suggest you have your Pediatrician check your healthy child's blood oxygenation levels with a simple office pulsox (not sure I'm spelling that right but every doc should have one). This will give you a baseline reading for your child should you ever need it. Never having checked The Boys healthy oxygenation levels, but because of the longer recovery time, the MD's began making assumptions that the high 80's might be my Little Man's baseline oxygenation level and they were planning on cutting him loose prematurely -- a potentially deadly decision with viral pneumonia. Fortunately, we knew deep down that his hospital numbers were still low. You see, we have a control! My Big Little Man, his identical twin brother, is running several days ahead of the Little Man in his pneumonia recovery. And his oxygenation levels are several points higher and rising. That's a pretty good indicator that the Little Man's numbers will keep going up. The Sarge and I are confident that the Little Man's numbers will continue to rise with the prescribed treatment for pneumonia... time and oxygen.

Temporary Hiatus

2010-06-26T18:26:00.002-04:00

Boys are in the hospital with pneumonia. Tending to my babies. Will be back soon.

xo maggie

Battling Domino Effect Germs

2010-06-13T12:21:00.011-04:00

3x3 weeks and counting... That is, 3 KIDS SICK FOR 3 WEEKS AND COUNTING! I know the details may be a little different but... How familiar is this story for those of you with children with special needs (or any kids at all)?

It started with The Boys' aide at school asking if I'd noticed that the Little Man was "a little congested" during this past week. Yes, of course I noticed! I am his mother and I do attend to every single little noise and nuance of his [and my other 2 children's] existence... literally! Over the weekend, that little bit of congestion spread to the Big Little Man and, oddly, to me. (That almost NEVER happens... Mama can't get sick!) Then it became the dreaded "D" word (diarrhea) right in the midst of potty-training. We briefly thought we were dealing with a resurgence of The Boys' lactose sensitivity issues -- that would have been EASY -- but alas, it was not to be! The Sarge started his "vacation" (NOT the respite he was hoping for) so together we stayed the course with undies and managed to get through the week -- elbow deep at times -- with both boys sporting their new Spiderman and Toy Story Fruit-of-the-Loom whitey-tighties. Thursday brought some relief so we confirmed our reservations and braved the wilds of Smith Point Park for a VERY relaxing camp-out with our friends. Our collective congestion improved with the beach air and rest. A tease!

Still a tad choked up but doing better, The Boys went back to school on Monday and Tuesday. All was well in the world, or so I thought, until another Mom stopped me in the lobby on my way in to pick-up The Boys to say 3 children were just taken away vomiting! Ugh! You know that wave of nausea that comes over you when you realize the potential foreshadowing of information like that?

Wednesday was a staff development day at The Boys' school and I had my last day of Lay Advocacy training so hubby took the helm at home. Those 7 hours of potty-training our still-fragile pooping, mildly-congested and overly-tired twins wiped all 3 of them out. It was an Early to bed though not very restful night...

And, an early to rise morning! Thursday I was up bright and early, ready to get all the kids back into our usual somewhat-unusual routine. I had their lunches packed and ready; all 3 children dressed; one already fed, and two to go! I had a warm bowl of oatmeal in one hand and a spoonful in the other when the Little Guy turned adamantly away saying, "NO!" That's usually the Big Little Guy's line so I coaxed him with, "Just take one bite! One bite, that's all!" Much to my chagrin, he hesitatingly obliged...

... Then proceeded to throw IT and everything else in his stomach up all over the rug as I screamed for the Old Soul to grab a pot, QUICK! Skipping the gory details, the neighbor took the Old Soul to school and by 11:00 AM I was waiting in the Pediatrician's office with The Boys. And at 12:00 noon I was waiting again, this time at the pharmacy while they mixed up 2 different antibiotic prescriptions for Bronchitis and Sinus Infection for us. My Little Man's propensity to suffer upper-respiratory consequences proving itself once again while my Big Little Man took another hit in the sinuses... where it hits him every time.

Friday was my "quiet" day... LOL. I spent the day potty training (we're up to 2x/45 minute intervals) using the GymBoss interval timer in between dispensing various prescription and over-the-counter meds to address the multitude of symptoms that were keeping The Boys from getting any healing sleep. By the time Daddy rolled into the driveway I was desperate to escape... ANYWHERE! So I took the Old Soul and ran to the St. Anthony's Feast -- in the company of my Aunt who's recently and begrudgingly moved to an Assisted Living facility nearby for a 30-day-trial (and is having a hard time acclimating). At our leisure, we ate burgers and sweet potato french fries topped off with zeppoles. (Like Girl Scout cookies, thankfully these are available ONLY at the feast... to my mind... Please don't tell me otherwise!) Unfortunately, it was within 15 minutes of our arrival that the Old Soul casually mentioned her sore throat and "exhaustion". History has taught me that when the Old Soul says she's exhausted, she'll be spiking a fever within 24 hours no matter what I do to avert disaster. So I let her go on one ride and promised a follow-up visit barring any health issues.

Saturday morning those health issues reared their ugly heads. My Little Man was still vomiting on and off -- though I've come to believe it's probably a function of the high fever, choking cough and excessive mucus -- and was averaging a 103.1 fever with ibuprofen every 6 hours and acetaminophen every 4 hours. The Big Little Man was the only one who appeared to be on the uphill climb back to good health with a low-grade fever and mild lingering cough. And our trip back to the Pediatrician on Saturday morning confirmed that the Old Soul had a raging case of strep throat with her temperature rising. Not good!

It's Sunday. Sarge has worked through the entire weekend. Sometime yesterday I had to implement a written record of medications because I began to lose track of who was getting what and when I could dose again to keep The Little Man's fever below the hospital-invoking 105.5 (per the Pedi's instructions). Still hovering around 103 at the outer edges of dosing, he's mostly sleeping and coughing and running at the nose. He's not eating but he is, thankfully, still sipping at his apple juice. I'm officially on dehydration -- or worse -- hospital and/or pneumonia watch as his labored breathing has become progressively worse over the last 3 days. We have 2 days left on his antibiotic. Not looking good for a miracle cure or rapid recovery. My guess is I'll be back in the Pediatrician's office again tomorrow to check his breathing and, hopefully, we're able to avoid a chest x-ray at the ER.

I've barely slept in well over 2 weeks... sitting vigil day and night listening to the labored and shallow breathing of my youngest child. Watching his entire abdomen suck in as he gasps for air. The white "spots" on the Old Soul's tonsils are more like mini cities sprouting up out of nowhere, ringed with white... Never saw anything like it! It's UGLY though she says it doesn't hurt much anymore. Not sure if I can send her to school with those lumps still there or not. I ,stupidly I guess, thought they'd start to go away instead of continue to spread once we started the antibiotics! We live and learn, huh? The Big Little Man is good... relatively speaking. He's still coughing and his nose is occasionally running but he's fever-free (hear me knocking?). But I'm sure as heck not packing the other two sickies into the mini van tomorrow for a 90-minute round-trip drive to The Boys' school just to get him there. School will have to wait for them all to be well again.... I'm just not so sure I can ;o(

And, yes, I'm still hacking away myself. It's no wonder!

For the record, this is not the first time we've been taken down as a family with various domino-effect illnesses. But I think this is the first time each of them has had a completely different illness or manifestation. I'm sure it won't be the last. As a matter of fact, having children with special needs has given a whole new meaning to the concept of germ warfare. I'm sure all you Moms of children with special needs are nodding your heads right now and recalling your own multiple, way-too-long battles -- won sometimes at great cost -- in the trenches. And, I cannot even imagine the trials and tribulations of medically fragile children... thankfully, mine are not. I don't know how those mamas, you mamas, do it. My heart breaks for and I applaud you all for the incredible dedication.

Somewhere during the day today, I think we might have collectively taken a turn for the better. We are not "cured" by a long shot... but I have hope that we'll get back to our version of normal again soon. In the meantime, hope you all are well and laughing at the ridiculousness of this post... because I know you've all been there and feel my pain.

And the sun will come up tomorrow!

God Doesn't Make Mistakes!

2010-06-04T06:57:00.005-04:00

God Doesn't Make Mistakes!

What Have I Become In My Rush to Get Where I'm Going?

2010-05-29T13:11:00.003-04:00

Canadian Geese crowd the Old Soul's schoolyard (taken from the car window at dismissal).

I am by nature a nature lover and animal lover. I thrive and feel the greatest peace when I'm immersed in and mindful of nature, surrounded by animals. For me, a 5-Star hotel can't hold a candle to the great outdoors.

Sadly, I'm finding lately that life's pressures -- just taking care of business -- sometimes get in the way of being one with nature and all of God's creatures. Fixing my house, driving my kids, writing my blog, advocating for people with special needs, putting dinner on the table, catching up on email, etc. are all things I choose to do. And while that IS a good thing 'cause they all HAVE TO get done there's important stuff that I'm not attending to. All these tasks that have to be done crowd out most of the opportunities I have to enjoy the beautiful world around me. I forget to take the time, to make the time, to attend to the natural world!

And I've been suffering terrible guilt the last several days as a function of my lack of focus on this gift of nature.

Running between school drop-offs, doctor's appointments, CPSE meetings, food shopping, cleaning the house, folding the laundry, and then after-school pick-ups, therapy schedules, after-school activities, and maintaining bath- and night-time routines, etc. I neglected one of God's creatures. Driving along the Cross Island Parkway on the way to picking up the boys, I saw one of those beautiful tan and black Canadian Geese stuck on the roadside edge of the guardrail. Panicked because of the heavy, fast-moving traffic the goose was trying to get himself over the rail but did not have the luxury of take-off space which, if you've ever watched a goose take flight, is critical. He couldn't fly over that rail and he was about 75 feet from the exit ramp where he could clear the roadway and get safely back in the grass. As I passed in the fast lane -- 2 lanes between me and that graceful animal -- I was torn between stopping and trying to help -- I could try to redirect the traffic away from that lane (potentially quite dangerous) until the goose was safe -- and moving on to pick up The Boys from their preschool on the north shore by 2:30 and getting back to the south shore to pick up my Old Soul from her school at 3:05. I didn't want my anxious little girl standing in the schoolyard alone and feeling abandoned by her mother (as she is predisposed to do). If you're from Long Island, you know that successfully making such a trip in the short amount of time I have is no easy feat. I struggle daily to do so and often fail. But on this day, I watched that goose, and felt his terror, and did nothing as he faded from view in my rear view mirror. Even as he disappeared from my sight, I went on worrying all day and all night about whether he made it; angry at the drivers who whizzed past him with complete disregard for his safety. Minimizing the importance of his life. After all, he's a HUGE Canadian Goose in the middle of a vast parkway. TOTALLY visible. No reason to hit a target like that.... Every opportunity to avoid such a collision. I considered doubling back and attempting to herd him towards the exit ramp but dismissed that thought as I might actually drive the poor, lost animal into traffic and to his death. I rationalized that he was close to safety and intervening might spook him... so I should leave it alone. I copped out!

The sight of him panicking as he attempted time after time to fly over that guardrail haunted me all day and night.

It wasn't until the next day as I was once again picking up The Boys from school that I learned that beautiful bird's sad fate. He'd made it all the way to the exit ramp when some uncaring, unfocused driver (probably on a cell phone) cut him down when he was so close to safety. His beautiful feathers matted with blood and long slender neck bent and broken unnaturally, I saw his once sinewy body laying still in the gutter. I cried! I'm crying now! Why did I choose not to take the 5, 10 or 15 minutes it would have taken to stop and help that goose? I might have saved his life! It occurred to me "he" might have been a mama goose with eggs or goslings in the grass. It occurred to me that I did the WRONG thing by justifying my lack of attention to the immediate needs of that beautiful creature in favor of moving through my busy little life and attending to insignificant tasks compared to saving his life. The Boys were safe at school. They could wait another 15 minutes. The Old Soul and I have a plan that if I'm not there AT pick-up time she should go to the playground and play with her friends under the watchful eye of several parents who know to keep an eye on her until I show up a few minutes late if traffic delays my arrival. I could have helped that goose. I might have saved his or her life.

One of God's beautiful creatures perished because I was too busy to do the right thing! THAT is not my nature. I had to actually ignore my nature, my heart, everything my mind and body were saying to me to drive past that graceful but frightened bird and not take action!

I'm sick over my poor judgement. When did I become so callous to think that my ridiculously over-burdened schedule (all my own doing) was more important than another life? Ah, but it was just a goose, you say? When and how did we humans come to the conclusion that we are more important in the grand scheme of things than any other life form... than a goose? I think it's this self important, greater than thou mentality in our society that is at least part of what's wrong with the world these days. People have little consideration for any one else. Their mission is more important than everyone and anyone elses. Special education committees make decisions based on budgets instead of childrens' needs. People fail to hold open a door for someone behind them because they're in a rush to get to that appointment all of 10 seconds sooner. Drivers fail to yield because getting to their destination is more important than common courtesy (never mind driving laws). Frankly, I'm embarrassed that I did not do the right thing as I have always tried to live my life (and teach my children) to do just that... the right thing! Even when it's harder. Even when it's not convenient to do so. But in this instance I consciously chose not to do the right thing and one of God's creatures lost it's life because of my apathy.

I promise you -- and, more importantly, I promise myself -- this will not happen again!

REAL Inclusion And the Least Restrictive Environment Law

2010-05-23T15:00:00.000-04:00

I sat in on a meeting as a Parent Member of the Committee on Special Education (CSE) with the shared responsibility of making decisions pertaining to the education of a child in my town. For privacy reasons, I'm NOT going to share anything specific about that meeting or that child but I am going to share an AHA! moment that knocked me upside the head during the opening remarks of the meeting and was then revisited and reinforced throughout the meeting... FOR ME. I'm not sure that the other committee members saw the light bulb glowing over my head. You see, my role in the committee is slightly different from the other members. Everyone else is there to report on the child's progress and services. I am there because, to some degree, I walk in the shoes of the child's parents... but (perhaps) can listen and respond less emotionally because we're not deciding the future of my child. In this role, I can ask questions or make suggestions that the parents may not have thought of. In theory, it's not personal. In reality, whoever said that wasn't a parent of a child with special needs... (LOL) IT IS ALWAYS PERSONAL!

For the record, EVERYTHING I do that involves children with special needs is personal. I have 2 children with special needs. Every piece of information I gather and apply either to my own children or to another parent's child is done to make their world a better place. And the more parents of children with special needs I can help navigate the world of special education in our district and state (in whatever way I can), the better off their children -- and therefore my children -- will be in our schools, community and world. So it is, in fact, very personal!

My AHA! Moment? The Dad mentioned that he'd had the good fortune to attend a particular school known for naturally integrating the local children with special needs in with the general population in their schools and community. He found the experience extraordinary. Recalling that even the most unlikely "typical" student was automatically and outright helpful to the children with special needs. Everyone benefited.

To which I responded in agreement...

Now that's REAL INCLUSION!

I've always considered myself a REAL inclusionist! My life has always been intertwined with children/people with special needs. As a second-grader, my dear friend, Alex, was wheelchair-bound due to Cerebral Palsy. I played constantly with him and his little brother, Vinny, who had a learning disability. Most of my childhood was spent on the "dead end" street around the corner with my life-long friends, Alison and Kelley, whose Aunt Carole had special needs and often joined in our tea parties. And, Uncle Stevie lived with my cousins and spent countless hours playing Cowboys and Indians with us. At 15, one of my most enjoyable "baby"-sitting gigs was being a companion to Johnny, a brilliant teen aged boy who happened to have been severely physically affected by Cerebral Palsy (but unaffected cognitively). I can go on with examples of people with special needs being really included in my life, throughout my life. Seems I've always been naturally enmeshed with people who were differently abled than I. It was natural for me then, to expect that this is how the world is -- integrated -- with people with special needs fully INCLUDED in all areas of life. Then I had my own children with special needs -- my identical twin sons who happened to have been born with Down syndrome! I have known from the start what I wanted for them... The research shows that full-inclusion in all aspects of life -- school, community, workforce etc. -- produces the best, most successful outcomes socially/emotionally and academically... spawning the greatest level of independence possible. As such, I've consistently followed the inclusionist path and the inclusionist advocates' and experts' advice and mindset. That said, I'm not sure why this particular meeting's underlying inclusion theme shook me down to the very foundation of my soul. I guess it pushed the concept of REAL INCLUSION right in my face... a little boy who needs, yearns for, and thrives on being included in his school and community... BUT WAS NOT QUITE THERE and he knew it because of the way the school district does "inclusion"!

The Boys marching in their Thanksgiving Parade at their integrated Preschool. Not quite full inclusion but they are being educated side-by-side with some of their typical peers.

A child who recognizes that he attends a different school than his siblings because he's "different"; A child whose friendships don't include the kids who live next door or around the corner because they go to the neighborhood school and she doesn't; A child who rides a different bus... the "short" bus; or goes to a separate "special" class where all the children have disabilities -- usually in a far wing of the school -- is NOT INCLUDED! They are being segregated. And the process of segregation and the thinking behind it is pervasive. Someone at my own CPSE meeting actually said TO ME [when erroneously trying to sell me on the self-contained class they recommended for my boys], "It's so cute, they go down to the cafeteria at lunch time and eat with the REGULAR KIDS!" (I'm sure you can imagine my reaction!) Maybe they LET your child participate in Art or Music class with the general population. Maybe they mainstream (different from inclusion) for story time only and then send the child with special needs back to his/her segregated class. This thinking, these practices are why New York state continues to lag behind 48 other states in our nation that are implementing the inclusion laws. Why NY continues to separate people with disabilities from those without despite the laws that require them to do otherwise. This is NOT inclusion, it's discrimination!

Just because Johnny or Jane learns differently from Tommy or Tess doesn't mean they shouldn't be or can't be in the same classroom. As a corporate executive, I was responsible for understanding the individual learning styles of each of my employees and using that style to facilitate their career path and growth within my department, employed by our same company, living and operating together in our shared world. INCLUDED regardless of their learning style. Why should it be any different for a child in school? I didn't fire all the visual learners because they didn't listen to me or catch on during trainings. I bought them books so they could learn their way what they needed to learn to do their jobs well. I didn't sit my employees who learned by watching in the corner with a book. I assigned mentors (read: peers) to show them how to do it, to facilitate their learning. I provided individualized support for each person according to their learning style! In my 20-year career as a database marketing executive, I managed to teach and forward the careers of every employee I ever had. Never terminating a single employee.

The Federal Least Restrictive Environment Law was developed to accommodate inclusion whenever and wherever possible. The law states (my accurate paraphrasing) that a child with special needs should be educated side-by-side with his/her typically developing peers in the least restrictive environment where he/she can make academic progress with appropriate supports in place. The law exists because the research supports INCLUSION as the best practice in educating children with special needs. The best outcomes are reported when children with special needs are fully included. The problem is that school districts are left to interpret the law, to determine what level of support is appropriate which, unfortunately, becomes a matter of convenience (easier to place them in the existing special needs class than to put together an individual support-infrastructure in the general education setting) and budget (schools receive funding for each child placed in a "special" class supporting on-going segregation) versus what is BEST for the child. Their interpretation continues to support the antiquated infrastructure and segregated thinking ignoring the research that supports the inclusion laws!

INCLUSION IS A BEST PRACTICE! INCLUSION RESULTS IN THE BEST OUTCOMES FOR OUR CHILDREN WITH SPECIAL NEEDS. INCLUSION IS THE WAVE OF THE FUTURE THAT WAS MEANT TO BE IMPLEMENTED TODAY! Is your school district practicing inclusion according to the Federal laws?

Every Day Is a Good Day To Be Thankful!

2010-05-22T11:18:00.008-04:00

I've been remiss in posting. I'm not sure any of you miss it so much as I do. My ability to handle what the world throws at me dwindles when I don't get things off my chest and, more importantly, when I forget to stay focused on all the beauty in my world. I have so much to be thankful for. Sadly, I'm human and sometimes neglect acknowledging all the good stuff in favor of dropping to my knees and screaming, "I can't take anymore!"

You see, I take on too much and I'm a procrastinator at heart. I try and counter these tendencies by doing everything just as soon as it's presented for doing.... read: NOW. I know, of course, that it's not possible to sustain this practice or mindset indefinitely so, inevitably, I crash. And I've been crashing lately. All the things that need to be done that I'm not getting to -- in favor of the more important tasks like caring for my children and being involved in their lives -- are weighing heavily on my mind. And, my mental health and house are suffering for it! Generally, I'd spend what could have been a rejuvenating mental health weekend trying to catch up on the housekeeping... TRYING and marginally succeeding before inviting our "regular" life back in... And the cycle begins again.

Then something or someone reminds me by telling their story -- either about how much cr*p they're going through or how thankful they are for the blessings in their lives -- and I get hit with a 5 ton brick of guilt. My moment of questioning why I feel so overwhelmed is inevitably followed by a good soul cleansing that only thankfulness affords me.

That's when I know I'm on the right track again... I just have to keep reminding myself that it feels good even though it appears, on the surface, like one more unnecessary thing on my to do list. (Kinda like exercise! LOL). Anyway...

[1] The boys are having their potty epiphany... At age 5 (and not a moment too soon with Kindergarten just around the bend)! I was beginning to think my Potty-Epiphany method of toilet training might not be possible for my identical twin boys who happen to have Down syndrome. Shame on me for ever thinking that my extraordinary boys, blessed with an extra 21st chromosome, might never have the potty epiphany.... Proving true once again that children with Down syndrome can do everything any other child does but they do it in their own time and in their own way. So, 5 is the magic number for us and I'm potty training. I'll let you know how it goes...

[Hold on, the 20-minute timer is going off. Gotta go put them in front of the potty.]

[2] I've been yelling a bit too much today and it's not making me feel very good about myself or my parenting skills. Why? You ask. Because my Old Soul is being 8! She has some nerve acting her chronological age instead of her old soul's age. Not doing what she's told and then complaining when my ignored advice turns out to be just what she should have done. It's no fun being ignored. But it does prove that she has a mind of her own and she is willing to risk everything to use it. That bodes well for her future... My present? That's another story.

[Needed a nice-sunny-day break but I'm back after taking the kids for a visit with Grandpa in the nursing home, a jaunt on the playground and a walk at the Nautical Mile waterfront.]

[3] Yes, we're just back from taking the kids to visit my Dad at the nursing home and I'm feeling pretty lucky to still have my Dad to joke around with. That's more than many of my friends can say. Though he's drugged and deteriorating -- succumbing to the evils of Alzheimer's and the meds necessary to control his sun downing behavior -- he still recognizes us. He lovingly kissed The Boys' imaginary boo boos, played that pull-your-hands-away-before-I-can-slap-em game with the Old Soul and demonstrated his warped sense of humor is still in tact in between momentary drug-induced naps. He's alive and kicking [though barely] and I'm glad for the few moments of pleasure I witness as he plays with his grand kids. Needless to say, my Catholic guilt comes bubbling to the surface when I miss several weeks of visits when my crazy ol' life gets in the way, but his lost sense of time makes him think we've just been there the day before... even if it's been several weeks since I've come. It's hard seeing him like this. But, I am glad he's still here.

[4] The nice weather is finally, hopefully, seasonally upon us to stay, I think... and pray! That's important because it's a surefire way to lift my spirits. I LOVE to be outside with the sun shining in my eyes, feeling its warmth on my skin, going for a run-walk in the neighborhood, gardening. Hitting the beach, jumping in the pool or runing through the sprinkler with the kids. We go to church carnivals, street fairs and medieval festivals (goofy but we LOVE them!). I'm committed to getting back into kayaking and SCUBA diving this year (I promised The Old Soul she could give the latter a try.) More daylight hours, less coats, warm days and cool nights, no school (at least for the Old Soul). Oh, the potential for fun is endless. Yeah, Summer's in the house! Woot Woot!

[5] I know this sounds trite and I know every mom must feel this way at least 99.9% of the time. But I've got to say it... I've got the best, most amazing kids. Seriously, they're growing up big and strong and healthy. They're gentle and kind and loving (except when they're really tired, like right now, LOL). They're learning, progressing and becoming beautiful little men and woman right before my very eyes. They blow me away! I am in awe of each and every one of them... with their understanding of the world and the consistent love they have for all living things all demonstrated in their own unique way. I am truly blessed!

May I never take any of these extraordinary gifts for granted.

TGIF and Other Thankful Thoughts

2010-05-14T22:06:00.008-04:00

OK, so how's this for original... Instead of posting what I'm thankful for on Thursdays like everyone else in the blogosphere, I'm going to do it on Fridays and call it "TGIF and Other Thankful Thoughts". LOL! Here's where my thankful thoughts are taking me tonight:

[1] I'm thankful that The Boys' birthday 5th Birthday party is finally upon us. Though there's a lot of work yet to be done, I'm certain that we'll end up with a beautiful day and a reasonable number of guests to join us singing to ABBA and Alvin & The Chipmunk Karaoke-style tunes. It's gonna be waaaay fun!

[2] I'm grateful to all the people in our lives who totally accept The Boys just as they are. Their friends are their friends because they truly LIKE The Boys. Completely unsolicited, several of their classmates -- did I mention they're in an integrated preschool class -- have asked if they could have a play date with The Boys at our house. One child said The Boys are his "favorite school friends". And two others said they like my beautiful little men because they're "ALWAYS so nice to me...ALL THE TIME!" At 5, it's a pretty big and positive impression they're leaving on their classmates... their friends!

[3] I think our friends are our friends for the same reasons... We do really good play dates and try to be nice to people. That last part might be one of the 10 Commandments -- goes something like "Do Unto Others As You Would Have Others Do Unto You". OK, that's not verbatim and maybe it's not a commandment but it's a really good rule to live by. And I hope my friends know that I am grateful for their friendship, support, camaraderie and laughs... especially the laughs! May I be as supportive of each of you on whatever journey you're on at any given time as you all have been to me.

[4] By the grace of God, I'm thankful that my house didn't catch fire and burn down (some of this 2oo+ year-old lumber would go up like tinder) when the light burned out in The Old Soul's fish aquarium night-light lamp last night. The strong smell of burning and smoke woke me and I turned off and unplugged everything I thought might be the cause. Turns out, those swimming fishies and that little light put out a lot of heat... which could have been a much bigger problem than it turned out to be. OK, so I learned the aquarium is not the best "night light". I'm incredibly grateful to have learned this something new "the easy way" instead of the hard way. BTW - that reminds me: change your batteries in your smoke detectors! Ours was inadvertently disconnected for construction and never hooked back up again. NOT good!

[5] And, finally, I'm beyond grateful to my Yahoo Biggest Loser Challenge 2010 group. With their constant support, motivation and inspiration I've managed to lose a little of myself (9 lbs so far). If I do that 3 more times, that'll be a total of 36 lbs gone and I'll almost be at my goal weight. I know with their help, I can do this! Psyched!

There's so much more I'm thankful for but I'm incredibly tired and have a BIG, FUN day ahead of us tomorrow. Take a moment to think about what you're really thankful for. A grateful heart is good for you!

Chutes & Ladders

2010-05-13T15:58:00.004-04:00

The Boys' PT at school thinks they can't climb up a 4' hard-runged rope ladder!

I know they can do that and a WHOLE LOT MORE!

The Boys were up and down those Chutes & Ladders keeping up with kids who were bigger and older -- but not any more able -- than they are! The Sarge and I were so proud of them!

Believe! No one can know the limits of another!

Click to see more Special Exposure Wednesdays!

Quote of the Day!

2010-05-08T08:14:00.003-04:00

Run your fingers through my soul. For once, just once, feel exactly what I feel, believe exactly what I believe, perceive as I perceive, look, examine, and for once; just once, understand."
~ Oscar Wilde

(copied from the website of Rainbowland Autism Services via Just Show Up: Autism Rainbow).

TGIF and Other Things I'm Thankful For

2010-05-07T17:35:00.003-04:00

It's been awhile since I did my Thankful Thursday post... That's because I was advised that it's not "effective" blogging to copy everyone else in the blogosphere for post ideas. In truth, I think we're all thankful for vaguely and/or drastically different things depending upon our specific experience any given week. That said, I'm here to remind myself of all the good things going on so that all the tough stuff doesn't get me down. I apologize if this isn't "effective" for you... But, as this is my happiness project and it helps me immensely to dwell on the positives in my life, I NEED a "Thankful Thursday" post... even if it's Friday!

Matter of fact, "THANK GOD IT'S FRIDAY!" because I'm not sure I could take another weekday this week. No, you won't find me dwelling on the happenings that brought me down this week... though from my list of things to be thankful for, you may be able to guess (LOL):

[1] I'm thankful that my boys are NOT allergic to dairy. We spent the first 2 years of their lives dairy- and soy-free -- myself included since I nursed them -- because they had allergic colitis due to their 8-weeks-early births. Bleeding intestines are no fun. Neither are irritated bowels -- for me or for them (read between those diaper changes)! Strained from too much dairy... so ends the birthday tradition of Carvel ice-cream cakes in our family. I'll take "sensitivity" over allergy any day of the week!

[2] I am beyond thankful that The Boys are MY boys and that I get to raise them as I see fit. They're doing WONDERFULLY growing up big and strong and healthy so I must be doing something all right! That said, I am not an extremist at anything much and so living life anything-free is not really my gig. I do not knock others for going gluten-, soy- or dairy-free nor, I hope, should others knock me for NOT doing it. Variety is the spice of life and it's a spice I love!

[3] I'm grateful to Dr. Raina at NorthShore LIJ who took a chance first on changing, then dropping, my dear aunt's blood pressure meds. Granted, it's only a test during which she'll be closely monitored. But, she's been so many years on the meds that everybody's taken for granted that her blood pressure is high and continued the meds without question. Her 5-day stay in hospital for tests ended this week and did not demonstrate high blood pressure at all. As a matter of fact, she was admitted for extraordinarily LOW blood pressure, dizziness and fainting. We've long suspected that the meds she was on were causing other problems. Perhaps now we can get to the bottom of it all. Thanks Doc for stepping outside the comfort zone and actually listening, seeing and treating the patient as an individual.

[4] Oddly enough,I'm grateful for all the testing my very typical now 5-year-old identical twins who happened to have been born with Down syndrome have been perpetrating against me! Yes, you heard right! I'm GRATEFUL! Because if they're testing, they're understanding the rules and they're understanding that what they're doing [tormenting me, truth be told] goes against those rules. Testing also means they're thinking! That they're cognitively capable! Something some people who don't know them quite well enough [but think they do] don't actually believe enough!

[5] Finally, I did HORRIBLY with my weight loss efforts this week. One might say I was on a weight GAIN effort instead.... 'cause that is what happened. Just the same, I'm 4 lbs less than I was when I started (though the "group" I belong to doesn't know that), I'm eating healthier (except for the cookies that helped me survive this week) and I'm actually getting in more exercise than I have in years (not enough but it's a good start)! So Brava for me that I'm NOT gonna get kicked by that horse! I'm gonna get right back on and ride off [thinner next week] into the proverbial sunset!

Signing off... grateful for another chance, another smile, another sunrise... with my beautiful children. I wouldn't have it any other way!

The Goat Whisperer

2010-05-06T07:08:00.007-04:00

Look what I discovered at White Post Farms...

My Little Man is a Goat Whisperer!

Despite having no food to feed them, all the little goats came to him for hugs and kisses while the other children stood down-pen with their ice cream cones full of pellets.

He approached this Fawn Deer and every other animal at the farm and was treated in kind. All of God's creatures came to my beautiful Little Man first... with no more to offer than his love and tenderness! It was enough, apparently!

Not surprising, really. He and his "Big Brother" are that way with people too!

Click here for more Special Exposure Wednesdays.

5 Beautiful Years -- A Celebration in Central Park!

2010-04-29T00:27:00.016-04:00

The Boys' teacher said, "don't let school get in the way of an education!"

So we didn't!

The Pond

The Seals

The Slide

Aahh yes... the slide!

Now THAT'S a SLIDE!

Wait... Did someone say 'slide'?

Yes, we played hooky today! We had to drive in to NYC (all of 20 miles) for a doctor's appointment for The Boys anyway so we seized the opportunity and the day... having lunch in The Big Apple and spending a few hours in NYC's Central Park in celebration of The Boys' 5th Birthday today! There's a lot more we wanted to do and didn't get to... but we had a bunch of fun doing just exactly what we did. Climbing on the rocks, peeking in on a few of the Zoo animals, relaxing by the pond and, most of all, sliding... sliding... and did I mention sliding?

What a beautiful day we had together! Almost as beautiful as my precious children!

Check out more Special Exposures on 5 Minutes For Special Needs!

Pay Attention -- There ARE Angels Amongst Us!

2010-04-25T13:22:00.002-04:00

There are Angels Amongst Us -- my children with and without Down syndrome and all the beautiful children in the world notwithstanding -- and we'd all do well to recognize when one crosses our path. Believe it or not -- there are people in this world -- adults even -- who do nice things for others... JUST BECAUSE!

I've been remiss in recognizing the angels who've crossed my path lately. But, something happened yesterday that reminded me to get back into a state of thankfulness and mindfulness and to notice the good in people (instead of noticing all the in-your-face, obnoxious, me-first attitudes I see demonstrated daily)!

My afternoon school pick-ups can be pretty stressful for me as it's a race against the clock traipsing literally from one side of Long Island to another to retrieve my children from their respective schools at dismissal time. Still, I try to insulate my children from that stress by working in a bit of fun and games upon exiting their school. Actually, we're a bit famous for our after-school running-around antics at The Boys' school. Read: well known with the other kids and parents for laughing and playing and, unfortunately, occasionally being reprimanded by building personnel... for having too much fun. That's my take on it anyway! (Note: For the record, my children are by no means out of control or wild. They do nothing "wrong". They just play and laugh... a LOT! But their special-needs pre- school is located on the first sub floor of an office building so any "childish" behavior is not well tolerated... hmmm. (Did I mention my boys have been blessed with an extra 21st chromosome each... matter of fact, the exact same 21st chromosome since they're identical twins?)

The Boys playing Hide-n-Seek behind the pillars in the school's atrium

The other day we had very limited time for our usual post-school game of slo-mo chase and hide-n-seek lest we leave the poor Old Soul abandoned at her school door. My boys and I pushed the giant glass doors open together with exaggerated effort and as we passed through, my two beautiful Little Men noticed a gentleman rapidly approaching behind us... so they politely held the doors open for him. Impressed, the man said a sincere thank you to The Boys which was rewarded with a chorus of you're welcomes. The man smiled and moved on, glancing back several times to catch a last glimpse of them as he went. Within a few minutes we were counting our way up the steps to the parking lot, as usual, when our "door man" returned carrying 2 dum-dum lollipops for the boys. With a great big and most-sincere smile, he handed one to each of them. I thanked him heartily; The boys thanked him equally well; And then he said thank you... to ME!

The kindness of strangers often brings tears to my eyes. I don't know why he did what he did or said what he said. But I am so grateful for his kind actions and words!

Down Syndrome Adoption -- Life In A Good Home Or A Horrible Institution?

2010-04-22T16:03:00.007-04:00

The greatest level of parental satisfaction is reported by parents of children with Down syndrome! Get in on this joy! If you or someone you know is thinking about or looking to adopt a child... Consider this:

Adopt this beautiful little girl with Down syndrome and SAVE HER LIFE! Read her story here!

Funniest Home Video Without the [Original] Video

2010-04-19T20:40:00.000-04:00

Why is it the funniest things happen when there's no camera within reach?

The Big Little Man and The Old Soul were outside playing in the backyard the other day. I was indoors with my Little Man. When the Old Soul came skipping through the back door I asked if she'd left her little broey outside alone. "Oops" she said. So I went to the door, not expecting to see anything but a happy little bruiser cruising around the play equipment in the backyard. What I saw certainly would have won me the $10,000 prize on Funniest Home Videos... IF I'd gotten a video of it, that is.

As I opened the door, the sound of wailing filled the air. To the left, I see my Big Little Man coming around the back corner of the house. The front of his shirt fully pulled over his head as though he got stuck halfway through taking it off. Crying, walking like a blind man with his hands out in front of him, covered in... you guessed it... DOG POOP!!!! LOL.

I know... TOTALLY GROSS... but funny as heck! He's negotiating the backyard obstacles pretty well considering he's totally blindfolded. He's moaning and wailing and -- as I approach I realize -- he's gagging too. LOL. He's got poop on his shoes, on his hands and wiped all over his shirt and... I know, this is disgusting... but he's got spots of poop smeared on his neck too. You can just imagine the mess underneath that shirt!

Turns out, he slipped and fell, hands down, in a heap of dog poop. When he wiped his hands on his shirt he realized his shirt was dirty and reeeeaaaaally smelly so he attempted to take it off. But, because his hands were covered in dog poop and the smell got stronger as the shirt covered his head, he failed to complete the over-the-head part of the shirt-removal maneuver and was outright STUCK... in dog poop! LOL

For those of you not inclined to open the demo video above, here's a post-trauma still shot of the Big Little Man's Shirt-Removal Technique:

LMBO (Laughing My Butt Off)! Seriously! Where is the video camera when you need it?

The good mother in me helped him but the bad mother was laughing so hard I was crying the whole time I was cleaning him up -- in between our mutual gagging. Lest you think me totally callous, please note, the worse mother would have gotten the video camera to document one of the funniest things I've seen in a LONG time.

P.S. The Old Soul doesn't think this is a bit funny because her brother was carrying one of her little PK dolls when he fell... Unfortunately, the doll looked a bit like the Big Little Guy when we found it lying dirty and smelly next to the incriminating evidence (read: dog poop). I thoroughly cleaned it up but she hasn't played with it since... LOL

An Aunt or An Uncle?

2010-04-17T00:38:00.005-04:00

I ran into a distant acquaintance the other day, a very nice young lady who informed me that she'd gotten married recently. In the midst of my congratulations, another parent -- a Dad --overheard the good news and added his well wishes to mine.

Our mutual acquaintance then informed us that she's also very excited that her sibling is expecting a new baby soon... the first of the next generation in her family. When the Dad inquired, "do you know if it's a boy or a girl?" our excited acquaintance said...

"No, the new parents want it to be a surprise so I'll have to wait to see if I'm going to be an aunt or an uncle!"

[indiscernible pause accompanied by dually-furrowed brows... his and mine]

And with a genuine smile I quickly recouped and said, "Don't you just love a good surprise?"

New York's CPSE-CSE Process Sucks The Joy Out of Parenting My Children With Special Needs

2010-04-13T12:38:00.005-04:00

Yesterday was our annual review and transition meeting from CPSE to CSE with the district. The whole process literally sucks the joy out of parenting my beautiful boys who happened to have been born with an extra 21st chromosome, a genetic condition known as Down syndrome.

Now it's true that the extra chromosomal material results in a syndrome of possible common conditions and/or symptoms for those born with it. But that doesn't mean that everyone with Down syndrome is the same or has the same medical, cognitive, or social/emotional characteristics as anyone else with Down syndrome. It doesn't mean that everyone with Down syndrome should be tucked quietly away into a special needs classroom separate from all the other "regular children" -- a phrase actually USED during my meeting and, whether it was meant that way or not, demeans children with Down syndrome and keeps them away (just like the institutions of yesterdayyear) from the general population instead of a making them a natural part of it... as it should be. Children with special needs should be embraced instead of hidden.

It's also true that the current Best Practices research supports educating children with Down syndrome -- and other children with special needs -- alongside their typical peers. That's why the Least Restrictive Environment (LRE) law was created. Because it has been proven over and over again that educating children with special needs works BEST when they have peer role models to help them model the desired behaviors. The best outcomes academically and socially/emotionally occur when children with special needs are educated alongside their typical peers with appropriate supports in place to help them succeed. It's more effective AND less expensive!

So WHY does the CPSE-CSE committee insist on committing children with special needs to segregated classes and schools? Because the whole process is self-sustaining. At least in New York it is. New York is ranked 2nd in the United States for segregating children with special needs from the general population with regards to education. Without giving you an in depth history lesson, New York had the money to build and staff an intricate special education brick and mortar infrastructure to educate individuals with special needs after institutionalization lost favor as a best practice many many.... MANY years ago. Although research now shows that the education of children with special needs is most effective when it occurs side-by-side with typically developing children (as I said previously), New York continues to support and defend it's segregated special education infrastructure... Committing children with special needs to segregated educational environments -- schools and/or classrooms -- ensuring that the schools continue to exist, the classrooms continue to be staffed and the special education teachers continue to teach based on antiquated practices... certainly NOT Best Practice inclusion principles. You see, a lot of people would lose their jobs -- or the nature of their jobs would change -- if we actually did what's best for our children with special needs.

The CPSE-CSE is run by professionals in the special education arena. Their own jobs depend on sustaining the segregated environments New York and so many other states have supported for too many years. I choose NOT to be a part of this. I CHOOSE to be part of the solution in moving New York State forward and toward actually implementing best practices in educating children with Down syndrome and other children with special needs. It may take me awhile, but I WILL make a difference. I and my two boys will NOT succumb to illegal and ill-informed practices. One step, one class assignment, one child (or two in my case) at a time. I will not waiver because the future of MY children rely on ME to step up and fight for them... To make sure the CPSE-CSE committees and other education powers-that-be do what is right and best for them and others like them.

Join me. I'm on a mission to do what's best for my children and for all children with special needs despite the ill-informed efforts of the state's education system! I can't fail... I can't afford to! My boys' lives depend on it.

Their Future's So Bright... They Gotta Wear Shades

2010-04-03T10:29:00.006-04:00

We were at the Verizon booth at the local PC Richards & Sons a few days ago, setting up my dear old Auntie with an add-a-phone line on our account as the pre-paid phone she's had for several years has finally outlived it's ease-of-use[fulness]. As is the norm -- because we don't have a lot of babysitters standing by -- I brought my brood with me. Thankfully, the Verizon store-within-a-store was adjacent to the huge (half the store) television department. I'd like to imagine that one of those sales people had the wherewithal to play something other than football. Stereotypical, I know, but apparently men make the majority of television purchases and the football pulls them into the department. Still, in the midst of a sea of astro-turf simulcasts, there was one extraordinarily large, well-equipped, Blu-Ray, 3-D enhanced Plasma television playing.... Monsters Vs. Aliens. Yeah! Happens to be my Big Little Man's favorite movie as he's quite smitten with "SooooooooZn".

When the salesman realized that the adults in charge of the 3 stray children were otherwise engaged with the Verizon lady, and that "OMG... they're twins" and that they were not entirely under the Old Soul's control, he pulled up a chair, handed the kids some fancy 3-D shades and turned up the volume. Well Done, Sir! Well Done!

Positive Thinking In Challenging Times

2010-04-01T07:58:00.006-04:00

The concept of appreciating what I have instead of wanting things I cannot or do not have is something I strive for and teach my children every day. Focusing on what we can do, not on what we have not yet achieved -- especially with children with special needs -- keeps us all focused on the positive aspects of our lives. I know too many who dwell on what their children with Down syndrome "will never do" (not sure how they know that)... And they have become worried and unhappy over these abstract things, losing sight of the wondrous accomplishments life presents to them everyday.

I choose to celebrate... our abilities, our lives, our world. So here's to:

[1] Sunshine -- More than rain.

[2] Faith -- Because things could be worse; and I know things WILL get better.

[3] New Acquaintances -- I find every one I meet has something positive to offer.

[4] Family & Friends -- No one understands me better than those who know me best. There's great comfort in not having to explain myself.

[5] Forgiveness -- Giving and receiving allows me to start each day with a clean slate.

Think positive. Think forward. And BELIEVE!

Fanning the Flood Waters Away.... Away... And Away Again!

2010-03-31T18:08:00.011-04:00

Friends and family are taken aback over the fact that I'm still smiling with 2" of water in my basement. They don't understand why I feel so LUCKY that my basement is submerged and my very expensive carpet is floating. Admittedly, flooding 3 times in 4 weeks sounds incredibly UNlucky to most. But not so much to me. It's all a matter of perspective!

Flood #1 was the result of the cumulative meltdown of multiple 10-15" snowfalls in the month of February. Two consecutive, very warm and welcome sunny days and an inadvertently unplugged sump pump resulted in an uprising of the ground waters and voila, our basement went under for the first time since the 9 days of rain back in 2005, just a few months after The Boys were born. After a week of pushing and pulling a rented and very heavy, commercial-grade carpet cleaner/vacuum, sucking up 50+ gallons of water, the Sarge swapped it out for 2 huge drying fans that ran non-stop for almost a week. Literally 24-hours after he returned the fans to the rental shop, we went under for the second time.

Flood #2 was the result of a massive wind and rainstorm that shook down most of the huge pine trees all over Long Island-- including my mother's and sister's -- and knocked out electric power for hundreds of thousands of my neighbors. Our lights were out for 18 1/2 hours. No electric = no sump pump. No sump pump = 2" of water in our basement. So the Sarge borrowed a pseudo-commercial grade carpet clearner/vac from a colleague, sucked all that water out AGAIN, rented the fans AGAIN and dried the whole place up AGAIN. Though it was raining AGAIN the very next day, Sarge returned the fans while we squeezed in one quick little indoor play date where the Old Soul and her friend were able to jump on the trampoline and kick the balls around our spacious, finished basement playroom. But it continued to rain hard all that day and even harder the next.

By day 3, Flood #3 was upon us. Despite a functional sump pump, the basement carpet was and is currently afloat once more. Darn ground water!

Yes, I'm still smiling! Laughing even. Because the whole thing is just bizarre. I know that I live a Murphy's Law kind of life. One in which resistance is futile and acceptance is the only way to go forward. Things that don't happen to others often seem to happen to me. And that's cool! Consider for a moment that I have identical twins with Down syndrome -- that's nearly a 1 in a million occurrence. And while that's been a great blessing, my basement flooding 3 times in the last 4 weeks is pretty unusual and not so much a blessing... though I've accepted it nearly as willingly.

So what's the trick?

Overflowing garden hoses snake out of basement windows and wind down every fifth driveway in my neighborhood so I know I'm not alone in this "misery". It's not a "misery loves company" thing so much as sharing the experience COMPLETELY negates the whole "woe is me" attitude thing (which I'm not prone to anyway).

The local news channel is showing folks just 40 minutes from here kayaking through their backyards. And the poor folks in New Jersey are standing in waist-high water in their living rooms... with high tide on the way so there's no sign of receding. I've got just 2" of water in my basement and I know -- because we've already cleared it twice before -- that this is totally manageable.

The curbs are lined with my neighbor's personal belongings, damaged and destroyed in the floods. Furniture, carpets, cabinets, tables, boxes, trunks, you name it. But because we flooded back in the Fall of 2005 -- thankfully before our basement was finished -- we played it safe and put 3 of those huge plastic utility shelves down there, put everything on the shelves, and plastic bins on the bottom shelf... Literally no damage except for the 2 pseudo-disposable, hand-me-down couches. We're good!

And finally, after much difficulty clearing the original 12" of flood water in 2005, Sarge and I had the wherewithal to finish the basement with 100% INorganic materials. The Owens-Corning basement finishing system (walls) installed by Alure Home Improvements (as seen on Extreme Makeover Home Edition... still waiting for that call) and Home Depot's next generation green, porous carpeting and rubber padding has proved -- 3 times over -- to be a GREAT investment! YES, it cost a little more (actually it cost a lot more) but it has now saved us thousands of dollars over the cost of refinishing and recarpeting our basement three times using traditional wood, sheet rock and carpeting... all made with organic materials that feed mold and mildew. MY walls are guaranteed not to mold or mildew FOR LIFE and the porous and INorganic carpeting and padding allows us to vacuum straight through without having to remove and dispose of them. NO smell. No stains. No stress. TOTALLY worth it.

I'm actually kind of sitting here doing Eddie Murphy's SNL "I got my ice-cream" dance despite the 2" of water STILL soaking into my basement carpet downstairs. And even if the proverbial scoop of ice-cream falls from the cone and plops on my basement floor with a big splash AGAIN, I figure I'm still ahead of the game. I know it's nothing a vacuum and a few fans can't fix. Oddly, the whole experience is making me feel sort of SMART! LOL! How's that for perspective?

And from the Old Soul's POV: As I explain to her and The Boys that they can't go downstairs to play because we're flooded AGAIN, noting, oddly, that we've flooded within 24 hours of Daddy returning those fans 3 times, the Old Soul says:

"Mom, maybe we should just keep the fans this time!"

Happy 101 Award

2010-03-28T03:06:00.011-04:00

Here are the rules:

1. Copy and paste the award on your blog.

2. Name the person who gave the award to you and link to their blog (or hyperlink).

3. List 10 things that make you happy.

4. Pass the award on to other bloggers and visit their blogs to let them know.

Step 1: My sincerest thanks go to Stephanie who writes Our Daily Smiles and recently awarded me the "Happy 101" Award. There's just something about getting an award... isn't there? Seriously! For me, a little appreciation goes a really long way these days. Especially when it feels like most of the time in my real life nobody even notices any of my efforts. And, I know I'm not alone. Stephanie was just as jazzed to receive the award as I am. Perhaps it's because we all work so hard doing all we do to raise our children with special needs -- rarely getting any recognition for what we accomplish on a day-to-day basis -- and then we endeavor to share our experiences by writing about them hoping to help and inspire others... As such, a little positive reinforcement from the blogging community via a comment, or better, an award is like getting one of those sticky little gold stars in life... awarded by those who know just exactly how much it takes to do what we do. For me, that makes it even more significant! And each and every one of us out here in blogland sharing our experiences deserves that gold star, giving back in such a positive way to help others who walk in our shoes.

Step 2: My Happy 101 list (not necessarily in order of importance):

[10] I love to write. It helps me work through and organize my thoughts... and my life. But, I especially like writing my blog. Mostly because it makes me feel like I'm contributing to making the world a better place for my beautiful little boys who happened to have been born with an extra 21st chromosome. My job in life is to create a peaceful path for my children.... writing Walk On The Happy Side is a step toward educating the world about my incredible children and Down syndrome while breaking down barriers for them.

[9] Getting comments on my blog makes me happy too. I'm not fishing for comments here. I'm just acknowledging that when I open my email box and see a comment from a reader, that's the first one I click. Hearing that something I've written resonates for someone else -- provides them with hope or information or a bit of happiness -- brings me pleasure. It's the whole tree falling in the forest thing... If I blog and nobody reads it... does it make a difference in the world?

[8] Helping others -- whether it's offering comfort, acknowledging a challenge they're facing, sharing a problem, listening, lending a shoulder to cry on, a helping hand or just plain old making them smile if I can -- makes me feel good.

[7] Doing the right thing... Knowing that I've acted according to my principles (a good sound mix of Christian/Buddhist/Green principles... LOL) makes me feel as though I've earned my keep in the world.

[6] Feeding the birds and squirrels, especially our little friend, Bunny the squirrel, who apparently lost his tail somewhere along the way and has just a little bunny-like stump now. He's the cutest little guy and visits every day for the bread and fruit we throw to him.

[5] The perfect feeling of weightlessness when I'm SCUBA diving with only the calm, zen-like sound of my breathing, floating my bubbles and the fluid movements of the fish cruising around me. Oooooh I LOVE that! Very peaceful!

[4] The sheen of purple that covers the lawns all over my neighborhood when the first crocuses break through... a great reminder that Spring and sun-shiney weather is on the way.

[3] I LOVE the feeling of the warm sun shining on my face and in my eyes. Truly!

[2] The way my dogs greet me at the door when I come home -- their tails wagging in hyper-time -- reminds me how much they love and depend on me... I love the feeling of being loved and needed.... My boxer's tiny little stump makes her whole butt wag and my black chow chow's long-haired tail curls up over her back and wags a mile a minute but ONLY for a very select few.... lucky me!

And the number ONE thing that makes me happy (drum roll please)

[1] Hearing the beautiful sound of my children's laughter! No sweeter sound in the world. I thrive on it, seek it out, anticipate it when I'm away from them. It is my life blood. Thank GOD for my children and their laughter.

My Happy 101 Awardees are:

Note: There are so many blogs I'd like to name but 3 is the magic number. To those I've selected, I apologize if you've already received this award and understand if you prefer not to post and pass it on a 2nd time. Please know that I had no intention of annoying you or putting another item on your to-do list; only to recognize you for the wonderful service you give the world through your blogging and to let others know you're out there doing it.

[1] Michele at Big Blueberry Eyes: Michele does a fantastic job conveying her deep appreciation for the happy life she's been gifted that includes the beautiful Kayla who is blessed with an extra 21st chromosome; her baby brother, Lucas; and her husband who gives so much to us all via his military service and who is currently on deployment. God bless Michele and her wonderful family and blog. Thanks for always being such an inspiration to me.

[2] Lisa at Finnian's Journey: For always doing it her way and for sharing her thoughts along the way. She's blazing her own trail and writing all about it. At one time or another we all feel railroaded into going one way or another and wish we could break free. Lisa actually manages to rise above that pressure and do what she thinks is right for her beautiful Finnian who is also blessed with an extra 21st chromosome and her family. She's a constant reminder -- despite the pressure to conform -- that I still and always will have a choice... There really is more than one way to raise a child... with or without Down syndrome.

[3] Ria at BillandRia: Ria's need to gather and share information makes her blog extraordinarily informative about all things pertaining to raising a child with Down syndrome. Bill and Ria's acceptance and drive to do the right thing for Matthew shines through in every post. Just a great and informative visit every time.

So thanks once again to Stephanie at Our Daily Smiles for giving me this award and to Michele, Lisa, and Ria for writing such wonderful blogs. Go check em out folks. Totally worth your time and effort.

From 5 lbs to 50 in Just 5 Years

2010-03-26T00:04:00.006-04:00

The Boys were born 8 weeks premature, healthy and breathing on their own. Weighing in at a respectable 4lbs - 15oz and 4lbs - 11 oz, they measured 17 3/4" tall and just barely made the tail end of the "typical" growth charts despite being diagnosed with Down syndrome.

My "Big Guy" in the NICU at 3 days old. That's my hand on his chest and my thumb on his thigh to give you an idea of just how small he was.... THEN!

My "Little Guy" in the NICU at 3 days old -- the day before his C-Dificil and NEC infections kicked in... a fight he fought valiantly and WON! That's his lower leg and big toe at the right side of the picture.

Here they are FINALLY together again at -4 days old (that's 8 weeks post birth but still 4 days before their actual due date) at home after 2- and 6-week stays in the NICU. Can you imagine... this picture was taken the day their Early Intervention therapies started! As you can see, both of them fit easily in the hanging bassinet of our little Graco Pack-n-Play.

BUT NOT ANYMORE!

That's us a few weeks ago at their school Winter Festival. Notice my hand doesn't even cover SpongeBob's Square Pants never mind covering my "Big Guy's" entire torso from neck to thigh the way it did when he was born! Just shy of 5 years old, they're 43" tall and weigh in at 50+ lbs each (with a lb or 2 difference between them at any given time). Yeah, they're fully on the "typical" growth chart now!

A day late and a pound over. For more Special Exposure Wednesdays see 5 Minutes For Special Needs!

Tending to My Garden When Happiness Eludes Me

2010-03-20T08:53:00.012-04:00

For me, the absence of happiness -- which is not the same thing as un-happiness -- has been linked to what comes down to overwhelming circumstances. Generally, I fare well if my family, friends and loved ones are faring well and if the planets are aligned such that things are mostly not working against me (which, is not the same as things always going my way... which rarely happens and I'm ok with that). Don't get me wrong, I can and do find happiness every day even when nothing goes my way. But when the universe introduces circumstances that challenge these very simple happiness tenets, my underlying feeling of happiness is reduced. I fall prey to the proverbial straw that breaks the camel's back. I can SEE the golden ring -- happiness -- but as my world spins round and round I come to believe I just can't reach it... right now!

This pretty much explains why the feeling of happiness has been so elusive for me lately. Circumstances are not working in my favor right now and at least a couple of my loved ones are having health issues that concern me on a daily basis. Yes, I still laugh every day. Yes, I enjoy the heck out of every moment I get to spend with my children. And, in short bursts, I even find the time to bask in the 70 degree sunshine... waiting with The Boys at the school yard for the Old Soul to join us when the 3:00 bell rings or clearing my perennial garden in preparation for the inevitable blooms to come... while we wait for the therapist to arrive.

That garden is a great metaphor for my life right now! The blooms will break through all the detritus that's built up over the winter. But, it certainly helps me and the garden to actively clear some of the cr*p away... Proactivity is one way I know to mend the poor camel's back in my heart and to help make way for the flowers. It makes me feel like I'm doing something instead of just sitting back and waiting. Yes, the flowers will bloom either way. But I like to feel like I acted to facilitate the process and positively impacted the outcome. A more beautiful garden, unfettered by weeds and garbage.

And so it is with all the circumstances that are driving down my feelings of happiness right now. Sure the flood waters in the basement will eventually dissipate... but I feel more empowered when I grab that vacuum and suck up some of the water to the extent that I am able... even when The Sarge says it is "still coming in". Yes, I will get to the other side of my children's Transition-to-Kindergarten Meetings (from CPSE to CSE) and, one way or another, I and the committee will come to an agreement on how best to meet their educational needs. But researching, preparing and supporting my opinion makes me feel more confident, enabled and influential with regards to the outcome. We'll figure out why my little guy gets those broken blood vessel spots on his chest one test at a time -- each result easing my fears and my mind. And my dear old Dad will live on with his Alzheimer's Dementia until he doesn't. We can and will change his meds and/or move him to another facility as we feel necessary to ease his suffering... but the outcome will be what it is. The same holds true for my aunt who may or may not follow in Dad's footsteps. This is life. And the only way I know to do this is to proactively go through the motions. I do the footwork and leave the rest to God, to fate, to life, to be whatever it will be.

Yes, this is MY garden. I planted it. And I will nurture it. I will take steps to help it grow. And I will take the time -- however fleeting it seems -- to enjoy not just the flowers, but the process!

When circumstances conspire against me grabbing that golden ring -- when the flowers in my garden are dormant -- I know I can still make a difference by addressing the process. I can switch horses. I can close my eyes and enjoy the breeze for a moment (yes, choosing inaction is action). I can lean in harder, reach farther, dig deeper and plant the seeds. The goal is not getting the golden ring but tending to my garden. It is that action that drives my happiness.

Advocacy Approaches -- The Bull in the CSE Shop or Advocating with Grace?

2010-03-18T17:15:00.000-04:00

I may have mentioned that I'm attending a Lay Advocacy Training program sponsored by the Long Island Advocacy Center AND hosted by the Long Island Parent Center. The course offers parents and educators the opportunity to learn more about the federal, state and local laws that govern special education and how to find the necessary information in order to be a better advocate for our own children as well as preparing us to help others advocate for theirs. I also spent 2 days this week conferring with other parents of children with Down syndrome at the Down Syndrome Advocacy Foundation's (DSAF) Best Practices in Educating Children With Down Syndrome Conference, a wonderful gathering of parents, educators and local experts in the field, held at CW Post. At each event, I sidled up to a number of other moms; connecting and discussing every imaginable topic pertaining to advocating for the education of and services for our children. Giving, taking and sharing every bit of available information openly with everyone.

Amongst the literally hundreds of parents I brushed elbows with, all of us drawing information to help us become better advocates for our own and others' children with special needs, I noticed an interesting dichotomy: There are, in my opinion, 2 very different approaches when it comes to advocacy.

The Aggressive Advocate: We've all encountered this person, the one who is outright angry at the state of affairs in special education and, whether advocating for their own children or helping another parent advocate for theirs, this person jumps into the CPSE/CSE ring swinging, premeditates the fight and often uses the big guns right up front... generally making for a relatively volatile confrontation. Now, admittedly we're ALL angry to some degree about having to fight to get even the most basic services for our children with special needs. But, I'm saying that the overriding emotion demonstrated by this type of advocate is aggression toward the system that comes out as aggression towards every body... And I mean EVERY BODY! As a searching-for-the-answers parent, you can see and hear them coming with their barrage of "you have to...", "You must...." and "If you DON'T, they'll walk all over you...." This advocate would have you believe that the ONLY way to win is to fight like hell and do it their way!

The Assertive Advocate: This person sees the advocacy mission as an opportunity to proactively influence the decisions of the CPSE/CSE committee. Their tactics generally include light to moderate subliminal psychological manipulation (funny but TRUE) and the bait and switch (ask for more, settle for what you really want). Though they may be just as angry as the first advocate I described, the overriding impression is that this person is informed, prepared and capable of taking on the CPSE/CSE committee peacefully.... and winning (not just fighting).

Me & My Reaction: As a parent, the Aggressive Advocate makes me feel like an uneducated boor. When one of these advocates talks at me, I feel as if everything I've ever done with regards to the education of my children with special needs was an outright and utter mistake. This person makes me feel stupid, inept and afraid that I'm ill-prepared to parent a child with special needs... never mind I could actually go up against my fellow CPSE/CSE committee members. The Assertive Advocate, on the other hand, fills my head with information, gives me resources to learn more and identifies multiple winning scenarios. This person leaves me knowing I can't lose... no matter what the outcome, there is always recourse.

Personally, I avoid the aggressive advocate. I know they may have some good information in between all of their take-control-of-me issues. But, the truth is, this life and playing the role of advocate for my children is challenging enough without having someone yell at me for not doing it their way. I've said this before and I will say it over and over again, there is more than one way to successfully raise a child with [or without] Down syndrome!

So, who do I want to be when I grow up? I hope that I can live up to the standards of the best Assertive Advocates that I've met and have had the pleasure to be taught by. To all you assertive advocates -- Kathleen, Michele, Helen, Helene, Jennica, Valerie and many others -- Thank you.... for sharing your knowledge, your demeanor and your tactics. And to all you aggressive advocates -- you probably don't even know who you are -- if you see yourself even vaguely in the description above, tone it down, take a gentler more manipulative approach and remember, you catch more flies with honey.

______________________________
Administration: Sorry I've been a bit incommunicado these days because, besides life being totally crazy, I'm also trying to figure out how to migrate my blog to wordpress for greater design and functional flexibility. That means, when I should be posting, I'm searching -- unsuccessfully, so far -- for answers. Needless to say, I'm still here on blogspot writing this new post which means I have NOT resolved the migration issues just yet and you, the reader, have nothing to worry about (as if these issues keep you up at night the way it does me... LOL). When and if I figure it all out, I'll let you all know how the migration might affect you, the reader. And, by the way, I am massively honored that you are reading so thanks!

I know... blah blah blah!

"We Are More Alike Than Different!"

2010-03-08T09:08:00.000-05:00

Like every blogger, I love comments. I read each one like I've just heard from a dear old friend and I ponder the thoughts each commenter expresses. Yesterday my dear old friend "Anonymous" left a thought provoking comment on my "End the 'R' Word" post ;o]. Paraphrasing, she said although she does not share the specific trials and tribulations that I face in my life, she found the sentiment behind my "End the 'R' Word" post applicable to so many situations... to so many other groups society has chosen to alienate.

Her comment really made me stop and think... And it made me realize that though the "End the R Word" has become a national campaign to specifically address the misuse of the "R" word directed towards people with intellectual challenges... For me, the campaign and all of my advocacy is about the usage of any derogatory language or discriminatory behavior and sentiment directed at any group of people singled out as different or less than anyone else.... STARTING with my beautiful and capable boys who happened to have been born with an extra 21st chromosome. I want everyone to see them and see each and every person they encounter as an individual with a life to live, emotions, loved ones, likes, dislikes, friends, family, strengths, weaknesses, fears, dreams and feelings!

It's time that we all started to show respect toward all other human beings regardless of the number of chromosomes; regardless of the intellectual challenges they may face; regardless of their sexual orientation; the color of their skin, hair, clothes; regardless of the country their ancestors came from, or who they chose to marry, or NOT marry; regardless of what kind of car they drive; how much money they make or any one of a million other superficial factors are part of but do not necessarily define who they are. The truth is we are all more alike than we are different. The human race is a melting pot. And I do not choose to dwell on the differences between me and anyone else. Nor do I think that I or my children are better than anyone else -- or less than anyone else -- as a result of our differences.

The National Down Syndrome Congress has started a campaign that I absolutely love on all levels. Though again, it was developed as a movement to facilitate the acceptance of people with Down syndrome by everyone in our society -- and I LOVE it for that -- it also applies to any homogeneous "group" of people that is ostracised by the masses. Check it out:

We Are More Alike Than Different!
Please click on the link above and take the time to watch the video and then follow the prompts through the campaign screens. It is a beautiful illustration of what respect and acceptance of the "individual" really means!