Thursday, January 29, 2009

THANKFUL THURSDAY

Some days it's harder than others to be thankful. I'm going through some tough thinking right now which will inevitably lead to some tough decision-making regarding the boys' health and education. That's not to say they're not healthy -- the common cold notwithstanding -- or that they're not remarkably smart and even pretty well educated already considering their age.... They are. It's just me pushing that envelope again. It's my nature and we -- me and everyone involved with the boys -- agree that the gentle, loving pushing makes all the difference in their world. So, now that you know my aches of heart and mind, let me tell you about the things that make me go, "AAAAHHHH"

[1] I'm thankful that my boys are as high functioning and as highly functional as they are. God knows, and I well know, this could have been a much more difficult road to travel. But, it's not! As Down syndrome goes, the road we've traveled thus far has been an absolute blessing. To continue the traveling analogy... This is not Rome, Italy or Holland. It's more like driving from LA to San Fran on that famous, Pacific Coast Highway in California. Life is good! The view is stunning, soothing and entertaining all at once and even the destination is a beautiful and absolutely agreeable place... San Francisco, The Golden Gate Bridge, Napa. (Can you hear the "Aaahhh"?) That doesn't mean there aren't a few hairy curves and/or steep cliffs along the way that are easier handled with a well-timed rest stop. I'm just glad I'm on this road. I guess that's what I'm trying to say.

[2] When I woke up at 6:04 AM this morning, I could see the light already brightening the sky. That means we're beginning to turn the corner on winter... and make our merry way into Spring. In my hay day, I LOVED winter sports -- helped me survive the cold -- but I couldn't be happier about Spring coming.... Let the sunshine!!!!

[3] I'm thankful for the beautiful little boxer dog we adopted 2 days ago. Though there are a few health and potty training issues we're working to resolve, she is a beautiful, gentle and great-with-kids-cats-and-other-dogs kind of dog that shows absolutely NO aggression whatsoever. I'm thankful she's with us, and not being abused, neglected or on the euthanasia list anymore. She's a great dog and now she's our dog! Home, safe and sound!

[4] I'm thankful for the issues I currently face. It means I still have choices.

[5] I'm thankful that it's bedtime because I've got big stressful knots in the back of my skull from thinking too hard about everything going on. Gonna take me a Tylenol and close my eyes and let sleep overtake my tired brain. Another day done and I'm here to tell about it. That's a good thing!

Good night every one. Sleep well!

Tuesday, January 27, 2009

ANGELS AMONGST US

"Are there Angels Amongst Us" you ask? Seems I've been short on recognizing my angels these past few weeks. You know... those people that magically appear out of nowhere just exactly when they're needed, do a good deed without being asked and then quietly recede.... never seeking recognition!

Sometimes angels are people you don't know doing a good deed for a stranger. Sometimes they are the people who are there for you every day. And, sometimes they're consistently there for someone you love. And so it is, for me and my just-starting-to-get-elderly aunt who lives alone. Her friend Rosa has been her angel for so long it's hard to remember that she is, in fact, an angel who goes above and beyond the call of friendship on a daily basis.

Recently, my aunt tripped over lawn edging and fell. Though nothing broke, she's bruised about the knees and suffered a fat lip as well. It was Rosa, who lives nearby, that came to the rescue in her time of need. It was Rosa who dropped what she was doing and came running to my aunt's aide when she called. No, she didn't have children that needed picking up from school. She didn't have to go to work. She wasn't out shopping or too busy with her own To Do List, which God knows she has, to help my aunt. The phone rang and she went without hesitation.

Truly, there's so much more that Rosa does and offers my aunt in her years-long friendship. I can't even begin to describe the camaraderie and mutual concern they have for each other. But, especially now, as the years wear on, Rosa is leading the way towards easing my aunt's fears and resolving the issues she faces as she ages. I'm certain that my aunt thanks God for the angel she has found in Rosa. But, I'd like to acknowledge to the world my appreciation for the Angel Amongst Us... Rosa has been the best friend my aunt and I could ever have hoped for.

I wish everyone an angel like Rosa. And, if you're lucky enough to already have one... Take a moment to say thank you to your angel. Because every one -- even angels -- like hearing that they're appreciated every once in awhile.

Monday, January 26, 2009

"Mr. Blue Sky" -- Loving Who You Love

I recently had the pleasure of watching a captivating and thought-provoking movie called, Mr Blue Sky (http://mrblueskymovie.com/). While the movie was about a lot of things... For me, it was mostly about unconditional love and the right, and sometimes fight, to love who you love. Let me clarify...

Mr. Blue Sky is a movie about 3 inseparable friends/"soul-mates" who grow up together, a young boy and two little girls -- one of whom happens to have Down syndrome. The movie progresses through their young adulthood and addresses the typical aches and pains of dating and, finally, finding and choosing who you love. Of course, it's not that simple. The societal barriers surrounding people with Down syndrome throw in complications that the characters eventually overcome. It's an uplifting story and incredibly thought-provoking for me because I have two sons with Down syndrome.

It's about an achievable dream in the way Martin Luther King, Jr. meant the words, "I have a dream!" It is NOT, in my opinion, a fantasy though, unfortunately, someone from the Down Syndrome Association of Los Angeles seemed to think so, "Mr. Blue Sky may be a story of fantasy today, but some of us would like to believe it could be a story of life experience in the future." It is, and has to be, about what's possible TODAY!
Without totally giving away the plot, the concept of mixed marriages is not new. In an era when it was totally unacceptable, my maternal grandparents wed despite their religious differences, my grandmother catholic and my grandfather protestant. Two of my sisters have "mixed marriages" as my family was raised catholic but their husbands were raised Jewish. I have an old friend who is Caucasian but her husband is African American. My mother is "able-bodied" but her husband is "disabled" with Cerebral Palsy. A family friend's son, who happens NOT to have Down syndrome, is dating a girl who happens to have Down syndrome. These are all examples of REAL people from different backgrounds, different abilities, different ethnic groups choosing to love who they love... despite the societal barriers.

Every parent wonders if their child will find someone to love that will love them back. Those of us with children with special needs wonder the same and more. We worry whether our children will be "allowed" to choose to love who they love. And, whether the person they love will love them back. Will society frown upon a "mixed' union of a person with Down syndrome and ANYONE else? I know I love my children unconditionally and beyond words. I don't love them because they have a high IQ or they're star athletes or they're medical doctors (I don't know if they will achieve any of these "status symbols" and I don't care...) I love them because they're beautiful people. And, I wonder if someone else will be able to look beyond their disability and see the amazing, kind and successful individuals they are fast becoming.

Back in my hay-day, I dated men from different walks of life, in different age groups, with varying levels of intelligence, from many ethnic backgrounds with varying religious affiliations, some had physical disabilities and others had mental "issues". Looking back... Truly a melting pot! When I was choosing my spouse, I fought with the notion that he was 8 years younger than me. For instance, when I was 25, like the characters in the movie, he was 17. I promise you, I would never have dated a 17-year-old boy when I was 25. So, it's a good thing I waited until I was older... much older... before I agreed to a date him. LOL. But, he was kind; gentle; funny; accepting; open-minded; and, he believed in and liked to do the same things I believed in and liked to do. And, yes, he was smart. But, it wasn't the smart that "sold" me. It was the kind, gentle, funny, open-, and like-minded that I knew I could live with forever.

Mr. Blue Sky made me contemplate how I made my choice and really think about the hypothetical possibilities for me and the real-life possibilities for my children. Were I presented with a man with all those qualities I found in my husband, who happened also to have Down syndrome, could I have fallen in love with him? I don't know. Given that my grandparents, mother, sisters and friends paved the way by choosing to love who they love. And, given that my boys happen to have Down syndrome, I hope that I could find a way to let such love in. To let love conquer all. God knows my boys are the most loving human beings I've ever encountered. They surely could, and hopefully will, (if they choose to) make two special ladies very happy someday.... If we are all free to choose who we love.

For a great, more in-depth synopsis, see the movie review at:

Friday, January 23, 2009

My Happiness Commandments

I realize I've been skipping posts. So, just to catch up (for myself), I'd like to take a moment to document my own list of what my happiness mentor, Gretchen Rubin at the http://happiness-project.com/, calls her "12 Commandments". These are the basic rules of your life that keep you going and, hopefully, help to keep you happy. Of course I'd have 13 (the "old soul's" favorite number). So here's what I've come up with (not necessarily in order of importance):

[1] Smile/Laugh (it boosts every one's happiness quotient)

[2] Accept Me (as I am today)

[3] It's OK to be human (You know, "to err is human")

[4] Make amends now (don't let bad feelings fester)

[5] Exercise (even if it's just for the endorphins)

[6] Do something for ME. (I always seem to be at the bottom of my list)

[7] Embrace change (it's inevitable anyway)

[8] Act As If (If I act the way I want to feel, I will feel the way I act. Not the other way around.)

[9] Drop it (Don't beat the dead horse)

[10] Retreat & rejuvenate (Querencia - when I need it and where I find my peace)

[11] Live to Dive Another Day (if it doesn't feel "right"... don't do it)

[12] You CAN'T do it all (so do what's most important)

[13] Do the right thing (even if it's hard)

Everyone has them though not necessarily written down. Their basic rules for life. What are the tenets that you live by?

Thursday, January 22, 2009

THANKFUL THURSDAY - On Diet & Exercise

I'm not thankful, today or the last 3 days, for the number on my bathroom scale. I tried, truly, and lost nothing! NOTHING! I ate healthy 5-point breakfasts and lean 3-point lunches for 2 weeks... And, THAT'S my reward? NOTHING? That said...

[1] I am very thankful that I have the opportunity, intelligence, determination and jutzbah to get on the elliptical trainer and work out ANYWAY! I know intellectually it's not just about that number! (Even if emotionally it MAJOR-LEAGUE bums me out!) And, though I don't know why the number didn't budge (DARN IT), I'm going to look at the bright side of my experience these past 2 weeks.

[2] So, I'm also thankful that 2 weeks of exercise made my body feel so much less old. Read: I wasn't limping and hunched over with 46-year-old body aches and pains when I got out of bed in the morning. THAT'S HUGE! I'm more limber and pain-free thanks to the work-outs.

[3] I'm also thankful that the past 2 weeks of exercising diligently was a good start to a good habit. It feels like a routine already (instead of a battle).

[4] And, the good habit of exercising also made me want to eat better and keep track of my food intake. THAT'S also a big deal for me. After all, we are what we eat.

[5] Finally, all that exercising (not that much, really... just 30-45 minutes/day for 5 days/week) and eating right has made me WANT to continue. Even energized me maybe to do a little more....

Maybe.

Just for today, I WON'T get on my scale so I can feel happier! If I feel happier, I am happier! Works for me. Have a great day all!

Tuesday, January 20, 2009

On The Dignity of Risk

"Over protection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity.

Over protection can keep people from becoming all they could become.

Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too.

Of course, we are talking about prudent risks. People should not be expected to blindly face challenges that, without a doubt, will explode in their faces. knowing which chances are prudent and which are not - this is a new skill that needs to be acquired.

On the other hand, a risk is really only risk when it is not known beforehand whether a person can succeed...

The real world is not always safe, secure, and predictable. It does not always say "please", "excuse me", or "I'm sorry". Every day we face the possibility of being thrown into situations where we will have to risk everything...

In the past, we found clever ways to build avoidance of risk into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these same people have the right to take. We have learned that there can be healthy development in risk taking... and there can be crippling indignity in safety!"

From: "Hope for the Families" By Robert Perske.


I was recently presented with three excellent examples -- besides the daily example set by/with/for my beautiful little boys who, as you may have heard, happen to have Down syndrome -- that demonstrate beautifully, the premise of the "dignity of risk":


As usual, at pick-up time my boys run rampant around the school yard. They chase each other, play hide-and-seek, crunch on the rocks, hang on the bars. Recently, they even tested how slippery a small patch of ice was (with mommy standing close by, of course). All the while I watched another parent attempting to keep her child in tow. Despite multiple protests, she held tightly to her son's hand and even resorted to picking him up to prevent his cavorting about with my boys. It was clear that the little boy wanted to run free... But, it appeared, she was afraid to let her son with special needs go... run.... swing.... play... Perhaps, too afraid that something bad might happen to him if he did.


On another occasion, a Mom reported that her son with Down syndrome was being OVER shadowed by his classroom aide. At 10 years old, the aide did everything for him including buckling him in on the bus. She was being so "overly helpful" that her son never had the opportunity to do anything for himself. This mother very much wanted her son to be allowed to try things on his own and, if necessary, fail on his own as well. But, the aide felt it was her job to help him keep up with the "typical" kids in his mainstreamed classroom even if that meant doing things for him.

And, finally, one of our therapists told of a Mom who had NEVER allowed her 2-year-old children to go anywhere near the stairs. The children were permanently corralled with gates in one room of the house to "keep them safe". How would these children ever learn to navigate stairs if they were NEVER allowed to attempt going up or down any stairs?

Fear of injury, fear of failure, fear of embarrassment or an inflated sense of the obligation to protect -- within the parents' and/or the caretakers' -- creates an atmosphere not conducive to a child trying OR ACHIEVING anything new. Without the opportunity to TRY on his own a child with special needs -- or, for that matter, a typically developing child -- cannot SUCCEED on his own. I also know first-hand that it's hard to know when to let a child try some thing on his own and when to draw the line when something is potentially dangerous to him.

I remember hearing a news report that an 8-year-old boy was killed while attempting to fly solo around the world in a small plane. I thought that was outrageous! In my opinion, a child that age should not be allowed to do such a dangerous and obviously, life-threatening thing. But, I'm not his Mom. I have to allow that she knew her son better than me and, obviously, didn't agree with me. So, she allowed him to try. It would be easy to say I was right because the boy failed. But, in fact, I don't know who was right. Her son may have been an excellent pilot. I don't know him. But, I DO know my boys. And, though I would never allow them to try flying solo around the world or even get on the bus without an aide at this age, I would, and do, let them run rampant all over the school yard and push their physical abilities to whatever limits they can find there.

Know that I am far from perfect in this "dignity of risk" arena though I consistently try to let them try. Sometimes I think I might be letting them try too many things. (I know a few mothers who think I do) For instance, when the Pediatrician says, "you shouldn't let children with Down syndrome do somersaults" and I let them do that and more on our indoor trampoline... MUCH more! Perhaps I should not be so willing. I don't push them, they push me and I not so much LET them as I don't STOP them from such things. I know my boys. And, I guess I've made OK decisions given we've had no injuries -- knock knock -- or major failures even. Just lots and lots of attempts and many many successes.

There are times, still, when I fear I might not be letting them do enough for themselves. Like when I put their juice in sippy cups instead of letting them try open-top cups. Or, when I cut up their food into tiny bite-sized pieces and help feed them rather than letting them feed themselves. Why don't I allow them to do THESE things? Their safety, perhaps. Selfishly, cleanliness might have something to do with it too! I know they can feed themselves with a fork but cutting things up into small bites prevents choking. I'm not sure they will take small enough bites of a big thing not to choke. I've seen them do this numerous times. And, honestly, I'm afraid if they choke, I won't be able to "save" them. I also know they can drink from a cup... because I HAVE let them try... just not all the time. Because when they've taken their sip, they frequently dump the entire cup on the floor and, occasionally, on themselves. But, I'm not sure if they can fully put on and take off their own clothes? Coats? I'm not sure about this in part because I'm always in a rush to move on to the next activity or get out the door... so, right or wrong, I do these things for them too.

And, so it is! With each task standing as a barrier to their independence and success, I must determine my motivation, the potential danger to my sons and decide whether this is something they should be allowed to attempt for themselves. I can help further by breaking down complex tasks into more doable chunks -- get your coat, put your arms in the sleeves, zip the zipper (even if I have to start the zipper for them). I need to push the "dignity of risk" envelope further with my boys if I hope to give them the experience of success.

As I re-read, I guess I've written this column as much for me as for any one else out there. This is MY wake up call. I must allow my children the "dignity of risk" in order to help them succeed. It is the small successes that lead to the big triumphs. My boys deserve a shot at a life of successful independence as much, if not more, as anyone else. And, it is within MY power to give them that by letting them try, allowing them to fail and learn, AND, finally, helping them to succeed in their own rite.






Thursday, January 15, 2009

THANKFUL THURSDAY

ON THURSDAY! Hooray!

[1] Thank GOD for my family Social Worker (a much-needed holdover from Early Intervention). With all the stuff that goes on in my wonderful life, I can hardly keep track of the issues I need to address with her and questions I don't know who else to ask. She's always there to help. Always a good listener. And, always has productive and proactive ideas and commentary to help me decide my next course of action.

[2] I'm so thankful Olivia has embraced the practice of talking to a therapist when something is bothering her. She's got one tough cookie for a teacher this year. A real yeller. And, it's taking it's toll on Olivia. Last night, after a long bout of real alligator tears, Olivia looked up at me and said, "Maybe I should talk to Ellen [the family Social Worker] about this!"

[3] Thank heavens for the snow. It looks like FINALLY we might get something that stays for a few days so we can go SLEDDING! The kids and I are just dying to hit the slopes.

[4] Thanks to my husband (and the greater powers that be) for my elliptical trainer and an awesome 12-year-old treadmill that still pulls it's weight -- and mine -- to help me achieve my goals (one painstaking pound at a time).

[5] Thank God for my continued good health that I'm able to USE the elliptical trainer and/or treadmill on a daily basis and not feel crippled! That's no small feat at my age!

[6] Thank God the car is fixed and in good running condition again and that our "new" 6-month-old television that turned off for no reason 10 days ago and wouldn't turn back on is also fixed FINALLY. Not easy to entertain 3 kids when you can't go out and you have no television!

Simple thankful thoughts make me feel so much better about all the other CR*&^#%&$*P! that's going on in my life (LOL). Try it. You might like it.

Wednesday, January 14, 2009

Ma'am, Please Step Away From Your Comfort Zone

I read the http://happiness-project.com/ on a regular basis. One of the tenets there to maintain your happiness is to take risks. That's not always easy and it is almost always uncomfortable. Well, being a calculated risk taker myself, I'm usually not too uncomfortable about the risks I take... like the time I moved halfway across the country, to KCMO, to work for a start-up company. Everyone thought I was crazy giving up a great job in a growing and reputable NYC Advertising Agency. BUT, that start-up was financially backed by 3 of the largest cable companies, one of the top 3 phone companies AND the product was tried and true in Europe. We Americans were just behind the technology boom [again]. So, dropping everything to help build out the marketing systems for Sprint PCS (then known as Spectrum) was a very calculated and, in my opinion, no-brainer, risk. It turned out not just good but absolutely GREAT! But, not all risks -- calculated or otherwise -- do turn out that great. And, you never know that going in... which is what makes it so uncomfortable. Believe me, moving from Long Island to landlocked Kansas City was definitely outside of my comfort zone.

Recently, I had the pleasure, once again, of stepping away from my comfort zone without the benefit of calculating the risks. This time, I had no choice. I was forced out.

As most Stay-at-Home-Moms will attest, the opportunity to run out for a few things when Daddy gets home -- even if it's just to the grocery store -- is like the Great Escape. Last Saturday evening, as soon as my husband's car rolled to a stop in the driveway, I jumped at the opportunity to make a run for... no, not the hills... CVS for some Triple Paste for the boys. It had been a long and tenuous 14-day Christmas vacation with the boys sick for 99% of it. I needed the break. I happily took Olivia who was still shopping for that one gift she really wanted but didn't get from Santa. As I accelerated up and over the Pearl Street Bridge I noted a streak of black in my peripheral vision.

Me: "Olivia??? Was that a... ROOSTER???"
Olivia: "WHERE? I WANT TO SEE IT!"

I let traffic pass safely, and backed down the bridge to confirm that I had, in fact, seen a large black rooster walking across a well-manicured lawn. In dusk's light, Olivia did not have a good view. She being an avid animal lover and me being a good mother (that day, anyway), I hopped out of the car to open her door for a better view. The rooster immediately made his approach, clearly NOT as intimidated by humans as I was of roosters. As such, we both ended up nearly in the middle of the road... me backing up in fear of being attacked by such a large and assertive bird! Thankfully, my bright orange parka (no, I do not hunt) helped me direct traffic around our little stand-off until I was finally able to coax him out of the road and back to the sidewalk where I opened the sliding door on the mini van so Olivia could get a better look at this majestic, black rooster. But, no sooner had I opened the door than the rooster hopped into the car!!!!! WITH Olivia.... LOL! Talk about violating comfort zones!

Plastered against the window screaming like the poor bird was Freddy Kruger -- talons out and fangs bared -- he quietly side-stepped Olivia's scene and nested down behind her seat. Olivia jumped out of the van as though she were parachuting from a burning airplane. We looked in at ?our? bird who was now very content in the warmth of the car. I slowly slid the slider shut (say THAT 5 times fast) as Olivia and I burst out laughing. Then, we got to canvassing all the homes on both sides of the street, finding only 2 people at home and willing to talk. "Nope! No one has a rooster that I know of." [By the way, generally, if your neighbor has a pet rooster, you'd know about it.... right around 5AM every day!] The second woman had just returned from CVS herself...buying meds for her sick sister who'd been visiting from Florida... "She said she heard a rooster crow yesterday morning. I thought she was just delirious with the flu!" (Truly! Would I lie?) After further investigation, we discovered that though there are some chickens in the neighborhood, no roosters lived anywhere around. (Can a rooster smell the scent of a chicken in heat from miles away, like dogs?) Furthermore, over the past few days the mailman had apparently attempted to find the owner to no avail. And, we learned, ultimately, someone had called the ASPCA but they never showed up.

So, the rooster was MY problem now... as he was in MY car. I called my husband to explain our delay and ask for advice. You know, NYPD exposes a guy to a lot of strange situations that need resolving. Unfortunately, my husband had no experience with roosters... not even working in the Bronx where anything can happen. So, Olivia and I drove around to a few local merchants who'd had petting zoos for the holidays to ask if there was room at the inn for just one night (until I found another solution). After a chorus of "No way!" I got a phone number from one that lead to an answering machine. Another dead end. So, we drove to the local pet store. The manager and all of his employees had no ideas for us but stopped laughing long enough to sell us a bag of cracked corn, give us a large box and wish us luck. About now I was figuring I'm the laughing stock of my town driving around telling folks a rooster jumped into my car. (A fact I'm certain my husband didn't believe until my daughter relayed the tale herself.) So, I tucked my proverbial tail between my legs and drove home to a husband who wanted it out of the car before it relieved itself (not his words).

The local police had a really good laugh about it too. No one had reported a lost rooster and "No, you can't bring it to the precinct" but they'd ask a guy on the night shift how to handle it since his family had chickens (Note: this last part was barely audible through the guttural male laughter). I got similar results when I called the emergency veterinary clinic and the ASPCA -- no one able to house a rooster at 7pm on a Saturday night -- though the former let me know, chuckling, that it sounded like something that would happen to her. With no answers and a rooster nesting in my car, out comes the old doggy crate and, with trepidation and absolutely no poultry-handling experience whatsoever, I coax the rooster out of his comfort zone and into the box. Then, into the house and into the dog crate. Multiple transfers that went too smoothly made me realize I was not dealing with a "wild" rooster. (Is there such a thing?) A bowl of water and some cracked corn and he settled in, quietly, for the night.

Olivia (excited): Mom, Are we keeping the rooster?
Me: ABSOLUTELY NOT!

At 8pm two police cruisers came to a stop in the front of our house. As the first officer circled my mini van with his flashlight, I yelled out the door, "Are you looking for a rooster?" The officer responded, "You got one?" "Yes," I said, "but he's not in the car anymore." With genuine surprise and his voice a pitch higher he exclaimed, "How'd you get it out of the car?" I explained to the officer as he admired our "chicken" (No sir, that's definitely a rooster), that it was obviously some one's VERY TAME PET because my kids had graduated from sticking their hands in the cage to wiggling their toes at the bars and, finally, putting their faces right up to the cage to pet and hand-feed cheerios to the rooster we'd now dubbed, "Baby". The officer (who shall remain nameless to save his pride) promised to check with his Dad who "has a bunch of chickens who just stopped laying eggs.... He might need a rooster!" The 2nd officer was just there to take pictures and laugh. I'm not sure she got any clear shots though because she was laughing too hard to steady the camera.

5:00 AM.... COCKADOODLEDOOOOOOOO! COCKADOODLEDOOOOOOOO!

5:01 AM... COCKADOODLEDOOOOOOOOOOOO! COCKADOODLEDOOOOOOOO!

5:02 AM... COCKADOODLEDOOOOOOOO! COCKADOODLEDOOOOOOOO!

5:03 AM... COCKADOODLEDOOOOOO! COCKADOODLEDOOOOOOOO!
And so on, and so on, and so on...

Yeah, I know. I was laughing too. Fortunately, our house must be fairly well insulated because I was the only one who heard him at that hour. By 7am, the kids were back downstairs hand-feeding "Baby". The boys' answering his crow with their own "Doodle doo!" each time. And, we discovered that "Baby" didn't want Olivia to leave him. All morning, he crowed steadfastly every time she walked out of the room. While the kids played with their new pet, I hit the yellow pages hard and called everyone and anyone who had any connection to farm animals and/or the Christmas petting zoos we'd recently seen. (Lucky I didn't call you!) This rooster was too kid-friendly to be just another guy in the barnyard. Besides, there are no barnyards anywhere near here!

By noon, I had 2 options for Olivia to choose from: [1] http://parrotsoftheworld.com/ where we were assured owner Marc Morrone would find "Baby" a good home (you might know Marc from his television show, "The Pet Shop With Marc Morrone") or, [2] http://partypetszoo.com/ where owner Andre Ricaud rescues abandoned, abused, neglected or unwanted exotic animals and pets and, with them, puts on educational shows for children about "wonderful animals that don't make such wonderful pets". Among other amazing animals he's cared for, there's been a 15'-long albino boa constrictor and an arctic fox. And, now he has a beautiful black rooster. We hope to hire Andre and his many exotic spokes-animals to educate us at the boys' birthday party in the Spring. As long as he promises to bring "Baby" along.

Sure, it was a stressful 24 hours of rooster ownership! Sure my husband wanted to kill me at first. But, what an absolutely wonderful experience! Knowing that we rescued this beautiful rooster from the cold, from dying of hunger and thirst, from potential attack by cat or dog, or from getting hit by a car was definitely worth the effort. In the end, it was an incredible learning experience for our kids and, I dare say, for my husband and I too! I never dreamed I could come to really care about a... ROOSTER! But, "Baby" endeared himself to our entire family. Yes, even my husband got attached and was caught talking to him. Surely, this story will be fodder for all-out belly laughing for my family every time we think of "Baby", our pet-for-a-day rooster!

I happily admit that I learned a lot about roosters, birds, and myself that I would not have if that rooster hadn't jumped into my car. I'm definitely happier knowing that I saved his life. Yes, it was uncomfortable operating outside of my comfort zone... owning a rooster for a day. But, perhaps, we're not really stepping outside of our comfort zone... but rather stretching our comfort zones... Making them a little bigger so that extra-ordinary things (like roosters) don't make us feel so UN-comfortable. Feeling less UN-comfortable means feeling MORE comfortable. And, that's GOT to increase our happiness quotient. It certainly worked for me.

Tuesday, January 13, 2009

Did You Know?

I've become a member of a pretty exclusive message board for people with multiples (twins, triplets etc) where 1 or more have Down syndrome. Not a big group but informative as all heck! I mean, "WOW!" It's one new issue after another that I didn't know I should be aware of. The latest that's gotten my undivided attention is this:

Did you know that many children with Down Syndrome suffer from some degree of sleep apnea? All the tossing and turning and sitting up and folding in half and moaning and groaning and snoring and wheezing and stop breathing and gasping is NOT normal! "Duh" you say? No kidding! How thick-headed am I? I just thought that since it had improved significantly from their infancy and Brian and Michael mostly stayed asleep through the night that they were just restless sleepers. Come to find out through my new friends at yahoo that all these behaviors are pretty typical... Typical, that is, of children with Down syndrome who suffer from Obstructive Sleep Apnea (OSA - an acronym I had to google before I knew what we were talking about). Even more interesting, it's been hypothesized that seizures might be related to the depleted oxygen supply to the brain. Perhaps that explains Brian's unexplained seizure-like episode that landed him in the ER back in September of last year.



Obstructive Sleep Apnea causes a decrease of oxygen supplied to the sufferer's brain and body. Oxygen saturation levels can and should be measured if a child suffers from restlessness during sleep. Further, there are different degrees and types of OSA and there are different measures for diagnosing it in children than there are for adults. Though I'd seen a Pediatric ENT who had sized up Brian's and Michael's tonsils and adenoids by eye, he'd quoted adult-level apnea incidences and durations, told us we didn't meet the criteria for the surgery and to wait another year and see if they (the tonsils) grow.... Exactly the same thing he'd told us last year. So, I went home thinking, "We're OK. I addressed it. I'll go back in 12 months and make sure we're still OK." Then, my message board friends told me, en masse, that almost without exception, their children had had their tonsils and partial adenoids removed not only to waylay repetitive illnesses like strep, tonsillitis, colds, sinus infections etc, but also to help clear the obstructed airway, improve sleep and blood oxygenation. It was as though I'd been hit by a lightning bolt!

I know that children with Down syndrome tend to have smaller oral cavities. I know better than to think their tongues are bigger and so protrude from their mouths. Rather, their mouths are smaller... which includes their throat opening. With typical-sized tongue, tonsils and adenoids the airway at the back of the throat is a bit too crowded for normal breathing. Coupled with the tendency toward low muscle tone (in this case, specifically the muscles in their mouths), the tongue in a relaxed sleep-state further blocks what little breathing space they might have. Hence, the increased incidence in Obstructive Sleep Apnea AND the increased tendency toward removal of the tonsils and adenoids in children with Down syndrome. (NOTE: apparently, only part of the adenoids should be removed in a child with DS because full removal of the adenoids complicates post-surgery recovery due to their slightly different oral anatomy.) WHO KNEW?

When in doubt, seek an expert's advice. I will no longer accept a brush off explanation of what I consider abnormal behavior. Their tossing and turning and night-time noise-making is not as simple as restlessness. I'll be making an appointment for Brian and Michael to see Dr. Robert Ward at New York's Presbyterian/Weill Cornell Medical Center, a highly recommended Otorhinolaryngologist (ENT) who specializes in treating children with Down syndrome for sleep disturbances. Armed with information from my panel of experts who have lived through this with their own children with DS, I'm sure to ask more pointed questions and leave with more appropriate answers specifically-applicable-to-my-boys this time!

Many years ago, a friend of mine lost her mother to breast cancer. Before passing, her Mom had written a book about her 13+ years fighting the disease. The moral of her story was that it is the patient's job (or the patient's mother's job, in my case) to aggressively pursue their own personal course of treatment. The doctors, hospitals and pharmaceutical companies have their standard prescriptions and sometimes personal agendas... Not all bad but not necessarily with the specifics of the individual patient in mind. This holds true for all of us and for all illnesses, ailments, afflictions, diseases, genetic conditions etc. We are the keepers of our -- and our children's -- good health. Pursue it with vigor! Our lives and their lives depend on it.

Monday, January 12, 2009

THANKFUL THURSDAY - On Monday

They say, "Old habits die hard". So, what do they say about bad habits? Well, I seem to have come into a new, and not-so-good habit of not blogging. The best way I know to kill a bad habit is to replace it with a new and positive one. So, there you have it. Along with my 2009 resolution to exercise (which I've been keeping), I resolve to blog. That said, my morning elliptical work out will be followed by a quick blog session... That should cover 5 days a week with time off when the kids are sick (as they won't give me 5 minutes peace at the keyboard). Excuses made... here's what I'm thankful for today!

[1] My mother, her husband, my Dad, and my siblings! They have been supportive and loving and there for me when the chips are down. Thankfully, they all have their own lives and live them to the fullest. But, when push comes to shove, my family has always been behind me, beneath me, beside me... holding me up and offering whatever help they can to get me back on solid ground. How they do that has always been just right too. Not rescuing, not saving, no strings attached. Just supporting! That IS what family is all about! And, I love my family for it!

[2] I'm thankful that we all have choices in life! We get to choose to live down our demons, drop our baggage at the curb, and face our skeletons hiding in our closets. It's not always easy, but it's always good! I am not so much a product of my past as I am a product of my present choices.

These are two extraordinary things I've got to be thankful for. I don't want to crowd them with other less poignant thoughts right now. Yes, of course I'm thankful for lots of other things -- my kids, husband, pets, home, hubby's job, good health -- to name a few. But, just for today, I feel so thankful for these two above, I'd like them to stand alone! Have a great day. I know I will!

Tuesday, January 6, 2009

Happy New Year's Resolutions -- 2009

Many years ago, I was introduced to the notion that instead of resolving to stop or quit something, resolutions have more sticking power if they're positive and proactive. For example, instead of NOT eating junk food, a better/stickier resolution would be to eat more healthy. However, recently I read that resolutions should be specific and of a manageable scope instead of general and broad-sweeping. As such, eating healthy becomes, eat a nutritionally balanced dinner every day (that's small enough and specific enough to achieve). And, "they" say never make too many changes/resolutions at once as you're sure to fail/leave some by the wayside. I think of this one "baby steps". BTW - I was once told that "they" are a childless couple that live in a 3rd story walk-up apartment in Ridgewood, Queens, NY. As such, I'm not sure they're in the position to offer advice on how I should live MY life. Still, I happen to agree that changing too much at once leads to failure. Finally, I hear the most kept resolutions are the ones that make your life better... Duh! Because you'll work harder to keep them. So, with all these resolution-making rules set out... Here are my specific, positive, few 2009 New Year's Resolutions (de-personalized a bit to make them suitable to print):


[1] Live and Let Live! I'm going to live my life the way I (and my husband and kids) choose, without dwelling on anyone else's potentially contrary opinion. It's my life to live and I don't have to live it just to please anyone else. Besides, at 46, I'm not likely to drastically change my ways just to please insignificant others (my hubby and kids being the only really significant ones). The negative version: "Drop it" when I'm dwelling on other's judgements. The positive version: "Accept Me!" That is, I need to be accepting of the choices I make, who I am and what I do without worrying about other's opinions.

[2] Get up and Get Moving! My new exercise motto is Nike's "Just Do It". However, if I haven't "fit" exercise into my busy life yet, I'm not likely to magically do so now. As such, I've committed to waking up 1/2 an hour early to do some calisthenics, prep and deliver my kids to their respective schools and THEN hit the elliptical trainer BEFORE I shower and dress to begin my day. Sounds gross but it's the only way I'm sure to make it part of my day. And as a result, I'll be thinner if not happier.... Oh yeah, and healthier (because "they" say your goal shouldn't be to lose weight but to be healthier)! Can't it be both?

[3] Always look on the Bright Side. In every dismal situation, I'm committed to find some good... even if it's just a lesson in what NOT to repeat. My mom says I've already got this one beat. Then again, she isn't generally privy to my darker moments. And anyway, there's no harm in including a winning resolution so that I can feel more successful and jazzed about sticking to my first two resolutions.

What are your positive, brief and achievable resolutions for 2009? I'd love to hear how you'll improve your life this year.

Friday, January 2, 2009

THANKFUL THURSDAY - On Friday

Over the past 10 days I've discovered that it's significantly harder to feel thankful when you're tired. And, I'm not just tired, I'm exhausted. The boys have been sick since 2 days BEFORE the Christmas vacation began On December 21st... with everything from a cold to a cough to croup to an intestinal viral infection. Bumping things back and forth between them. As such, they're not sleeping and neither am I. But, it's times like these when it's most important to think about all the things I have to be thankful for. So, here goes:

[1] I'm thankful that my immediate and extended family members are alive and kicking. I know some who are mourning losses at this very moment. Though the drama that comes with family can sometimes be trying, I'm thankful that we're all still here and that I still have the opportunity to tell them I love them. (I love you guys!)

[2] I'm thankful that bedtime is upon us.... After all, some sleep is better than no sleep at all : )

[3] I'm thankful for my husband's thoughtful Christmas gift and that he's still hanging in there with me and the kids. God knows it's not always easy.

[4] I'm thankful for the beautiful children I was gifted. Like I said, it's not always easy, but they are so easy-going that when the going gets tough, they're still the easiest and most pleasant kids around. Truly!

[5] I'm thankful for new starts and second chances. Not just the New Year but for every moment of every day. Each is an opportunity for me to start all over and to try and do the right thing. Even when I've just messed up... I get to time myself out and start all over again. (Sorry Olivia!)

[Bonus Round: At 46, I sure can feel my body's age more than when I was 26. That said, I'm glad I'm just 46 because I'm thinking 86 has got to feel a lot worse!]

Carpe diem! Take this opportunity to tell someone close to you that you love them.