Friday, October 9, 2009

Down Syndrome Awareness 31 for 21 -- No Limits!

We recently spoke with a class of Speech-Language students at Molloy College in Rockville Center, NY. My children and I do this at a handful of local colleges, meeting with students in various fields all planning careers working with children with special needs. We do this so these students can put a real face on the textbook diagnosis of Down syndrome. We do this to dispel the myths. We do this on behalf of all people with Down syndrome. All those who don't have the opportunity to represent themselves to these students and to everyone else who works with people with Down syndrome. We do this so every person with Down syndrome can be represented as an individual instead of as a stereotype.



Our primary message to the students is to SEE and treat the individual not the diagnosis.


According to the stereotypical diagnosis of Down syndrome, my children would be mentally retarded. They are not! I have this statement in writing from the New York State Office of Mental Retardation and Developmental Disabilities based on their latest evaluations.



According to the stereotypical diagnosis of Down syndrome, my children would have low muscle tone. They do not. They are in the low range of normal muscle tone... like their mother (LOL).



According to the stereotypical diagnosis of Down syndrome, my children would have heart defects. They do not. Their hearts are perfect! Just like yours and mine despite their extra 21st chromosome.



According to the stereotypical diagnosis of Down syndrome, my children would have vision problems. They do not. They wear no glasses, have no astigmatisms and can see better than me. I've been wearing glasses since I was a college student intending a career working with children with special needs. (Mike wearing pretend glasses)



I could go on but [I hope] you get the picture. They are not a textbook case of Down syndrome. No one is! And, I am not saying that Brian and Michael are completely unaffected by their diagnosis of Down syndrome. They are affected... mildly. But, four and a half years into their beautiful lives, we have found absolutely no limitations for Brian and Michael. Delays? Sure, some! Nothing insurmountable. But ABSOLUTELY NO LIMITS!

Thursday, October 8, 2009

UPDATE: Down Syndrome Awareness -- Editorial by a Mom of Identical Twins with Down Syndrome

The latest statistic I've heard is that Down syndrome occurs once in every 733 births... though identical twins with DS is a bit less common. Still, that's down from the 1 in 800 stat that I've seen quoted most often, that hadn't changed for years until recently. I think that number is dropping lately though because the early diagnosis of Down syndrome via in-utero testing results in the termination of more pregnancies... More fetuses with Down syndrome are being aborted. I've heard that 92% of all fetuses prenatally diagnosed with Down syndrome are terminated.

I don't necessarily think this is a good thing. I cannot imagine terminating Brian and Michael because of their Down syndrome... which has had such a mild affect on them, in fact!


I'm not sure what the goal of this in-utero testing is exactly! In theory, I understand it's an attempt to inform expecting mothers so that they can make a choice... To prepare for or terminate what the world considers a less-than-perfect child.

God help us if we're not all perfect! Right? In truth, I have yet to meet a perfect human being!

I get the concept of preparing for a child with special needs though I chose to fore go the pretesting. Pregnancy can be emotional and challenging enough without adding any additional stress! Besides, personally, I think you need to prepare the same for any and every baby... hoping and praying for good health but accepting of whatever child you are gifted -- girl or boy, big or little, early or late, singleton or multiples, healthy or unwell, 46 chromosomes or 47 (Down syndrome). Then, you deal with the curve balls. There's no way to know in advance of their life outside the womb what any baby -- any child -- will specifically require. So, you love and nurture and provide whatever medical and educational attention is necessary for your child at birth and throughout their lives. Isn't that the truth for each and every one of us and for every one of our children... disabled or not? Unless you choose to put your "less-than-perfect" child up for adoption -- a valid choice for some (and please know there are countless parents waiting with baited breath to specifically adopt children with Down syndrome) -- there's no way to know how any of this will actually turn out with or without a prenatal test that is positive for Down syndrome!

But, let's look at the flip side of the choice that prenatal testing gives the expectant mother. Terminating a fetus because it's diagnosed with Down syndrome, to me, is sort of like playing God, or Hitler, or Russian roulette. Sorry, this one's not good enough for us. We'll go ahead and take our chances... pull the trigger again. To be honest, in the realm of potential disabilities, Down syndrome is a breeze and occurs less often than others that can be more challenging and, dare I say, less rewarding. Still, if this notion of trashing this one for the next is ok with you (it's not with me), the world will still never be rid of Down syndrome... though PERHAPS it won't occur in your family. Or, will it? Maybe the next fetus will be diagnosed with the same... who knows?


Unless every fetus conceived is tested in utero -- not likely to happen -- AND, every in-utero diagnosis of Down syndrome results in termination -- also not likely to happen -- thankfully, Down syndrome will always be a part of this world! Because Down syndrome occurs naturally in our world! And, because people like me who not only choose not to test because I wouldn't make a decision to terminate based on results indicating a diagnosis of Down syndrome... But also because I wouldn't terminate if I did receive this diagnosis for a pregnancy -- a baby -- I purposely pursued and wanted!

My daughter's Kindergarten teacher used to say, "You get what you get and you don't get upset!" Good advice. Though my daughter loves the color green, there's no guarantee when the chatchkies are being handed out that she's going to get the green one. She has to take and be happy with the chatchke she gets. Same goes for babies.


Yes, Trisomy 21/Down syndrome occurs naturally throughout the world in approximately 1 in 800 births (medical termination is not natural). The 21st chromosome accidentally triplicates itself, instead of only duplicating itself, and then the replication of this triplicated chromosome repeats over and over again in each cell as the fetus develops. Occasionally, the "mistake" naturally reverses itself in the process of fetal development and the 3rd 21st chromosome is accidentally not copied such that all cells going forward from that point have only 2 21st chromosomes which results in Mosaic Down syndrome. Still, thus far, medical science has not been able to identify when the triplication is going to occur, keep it from happening, nor correct it once it has happened. Is it possible that some day medical technology will find a way to do these things? Sure, any thing's possible... But, personally, I hope it doesn't come to that. I think the world is a better place because there are people with Down syndrome in it! I KNOW my life -- and this world -- is definitely better for the presence of Brian and Michael... just the way they are!

THANKFUL THURSDAY - Here's to Good Health

[1] I've got a cold! I don't really feel great... but I don't feel all that bad either. A little more tired than usual... But, I'm able to function -- ya know, do what I gotta do -- without too much anguish (LOL). It's JUST a cold! Otherwise, I'm all right! I know an awful lot of people who can't say the same right now with the flu season upon us... and worse! Gotta be thankful for what I've got as much as what I don't. I'm healthy... except for this stupid little cold!

[2] One of the boys has a cold. He's pretty good during the day but the nights are a bit tougher for him breathing-wise. Still, he's doing pretty well also. It's just a cold! No vomiting, no fever, no diarrhea (knock knock). I've gotta say, I'm really pretty thankful it's just a cold.

[3] Hopefully, his cold doesn't interfere with the hi and his brother's scheduled surgery... which is not serious but needs to be done. It's not heart surgery or anything life threatening (hear me knocking again?) I'm thankful they haven't had any of those serious health issues.

[4] The old soul's cold is just about gone already. Not too severe and short-lived! Yeah! Gotta be thankful for that!

[5] Sarg has a cold too but with the OTC cold meds he's taking, he's still functioning! G-r-a-t-e-f-u-l! He's gotta be well to work the Yankee play-off game tomorrow night! See? All that OT pays off in the end!

[Bonus Round] Even my Dad just got a clean bill of health! No problems with the brain, heart, cardio-vascular system, blood flow etc. Just typical signs of aging with no big red flags. That's great (although it doesn't explain his recent memory loss but we're working it). It's one less thing to worry about. It also means I've got good genes! I and my children should live good long and healthy lives! I'm shooting for 100 myself... brain and body intact (hopefully). I'm thankful for my Dad's contribution to my longevity.... Oh yeah, and for his good health too! (LOL)

Here's to my and my family's continued good health! And, here's to your good health!

Wednesday, October 7, 2009

OCTOBER IS DOWN SYNDROME AWARENESS MONTH -- I Took the 31 for 21 Challenge

Oh, it's October 8th!!!! And, I haven't blogged in honor of the 31 for 21 Challenge. It was this challenge that got me started blogging in the first place. So, in between my other happiness posts including Angels Amongst Us, Random Happy/Funny Thoughts, Special Exposure Wednesday and Thankful Thursday, I'll be posting daily about Down Syndrome. That is, I'll be writing about what it's like to share my life with someone -- or, in my case, some TWO people -- whom I love dearly, who happen to have been blessed with an extra 21st chromosome... More widely known --but hugely misunderstood -- as Down syndrome:

DOWN SYNDROME

Don't underestimate my children just because they have Down syndrome

Or, label them as "Downs kids"

Why would you put their diagnosis before the amazing individuals that they are?

Names -- Brian & Michael -- are the only labels that should be assigned to them!


Save your pity! I'm having an absolutely wonderful life with my beautiful children!

Yes, they have Down syndrome... but that does not define who they are!

No, I would not change them. Like the rest of us, they are PERFECTLY imperfect just the way they are.

Down syndrome is JUST their diagnosis. And, it's a genetic condition NOT an illness! They are not sick. They just have an extra 21st chromosome... that's all!

Reserve your judgement until you've actually met & gotten to know Brian & Michael

Ordinary 4-year-olds is what you'll see -- more like every other kid their age than not!

Meet them and see for yourself!

Everyone who does is amazed and changed forever... for the better! I certainly am!

Special Exposure Wednesday - First Solo Flight at Hershey Park

This is the boys' first solo flight (they would never stay in their seats/seat belts before) at Hershey Park, PA this past weekend!



Michael!



Brian!


The Family (sans Daddy, who, unfortunately, had to work)

More Special Exposure Wednesday at 5 Minutes For Special Needs!

Friday, October 2, 2009

THANKFUL THURSDAY -- What Happened to Thursday?

I have been remiss in keeping up with my blogging/posting amidst my other critical responsibilities. My apologies. I guess I'm still one of those "Women Who Do Too Much" despite having read that book and supposedly internalized those lessons. That said, I'm in training for how to say no... or at least setting and HOLDING to my boundaries. In the meantime, while I learn (dare I say re-learn) this invaluable tool, I'm trying to scrape clean my overfilled plate. Too bad it's not like an all-you-can-eat salad bar where someone takes the plate that's full of the leftovers you don't want and you get to go back for seconds with a fresh new plate. I'm stuck with the plate I have and there's a bunch of leftovers that are not palatable to me. Next time I'll choose more carefully....



[1] I'm thankful for the weekend vacation that starts at 6am tomorrow morning when I get behind the wheel of my mini-van -- my new old pop-up and children in tow -- and drive off to Hershey, PA for a camping/amusement park trip with a great group of friends I positively adore. I'm really looking forward to the break though I'm sorry that hubby was unable to join us. I guess the crime rate in the Bronx is too high to let the Sarg take a day off... But I bet he'll make good use of the peace and quiet that comes with an empty house... I know I would if I had the chance LOL!



[2] I'm grateful to my Mom for taking on the job of medicating and moisturizing Miss Molly Boxer's eyes while the Sarg is at work and we are in camp. Without functional tear ducts, poor Miss Molly can't go more than a few hours without moisturizing lest her corneas dry out and abscess. Lovely, right? As squeamish as she is about eye-stuff, Mom's offered to come in once or twice a day so that Molly doesn't have to go to the vet while I'm gone. Otherwise, she'd be caged for the weekend again (which is always a set-back behaviorally for Molly). Thanks Mom. I cannot tell you how grateful I am. I know it's not easy for you to do this on so many levels. But, I do appreciate it. I promise I won't go away again for a long time.



[3] I'm afraid to be thankful for the health of my 2 remaining goldfish. We were on a run there with 3 fish surviving for more than a month... then we lost Taily Poe yesterday. Fin McCool and Dottie seem to be doing well. I'm grateful. It pains me to lose them... I know what you're saying, they're only gold fish... but they're my gold fish and my responsibility. So, I'm grateful for the 2 that have survived thus far. I hope their good health continues... (from my keyboard to God's ears, please!)



[4] I'm grateful for the opportunity to speak again at the local colleges, beginning with Molloy College this Tuesday evening. I speak on behalf of people with Down syndrome... for their acceptance into society and the respect they deserve as contributing members of society... and as human beings. Obviously, with Brian and Michael being blessed with an extra 21st chromosome, this is an important issue for me... I am thankful to have a voice and that I am able to carry this message for all those who cannot.



[5] I'm grateful for the wherewithal to continue tracking my food intake and my ongoing weight loss via the Weight Watchers program. Though I missed the meeting this week (see intro above about full plates), it appears I've lost a pound or two according to my bathroom scale. Hopefully, next week, when I get back to a manageable schedule and my regular WW meeting, that will prove true and then some.



Peaceful dreams to all.

Special Exposure Wednesday - He Aint Heavy, He's My Brother!

He Ain't Heavy...




He's My Brother!
More Special Exposure Wednesdays (on Fridays or Saturdays)!

Monday, September 28, 2009

ANGELS AMONGST US - The Hands that ROCK the Cradle

When it was just me, the Sarg and our old soul we were on EASY street. A 2:1 parent/child ratio is a breeze! But, you sort of never really recognize the value of that until it's gone.

"Honey, I think it's time to have that baby sister or brother the old soul recently asked for? [pregnant pause] But, you know, I'm ok if you really don't want another."

"No! We definitely want another child. Right? TWO is what we ALWAYS talked about!"

"Great! Because I really do want Olivia to have a sibling."

Some of you have got to be laughing, knowing how this all turned out for us...

Well we're not on Easy Street anymore! Busy Street! Funny Street! Happy Street! Laughing Out Loud Street! But, definitely not Easy Street! Why? Because we now have 3 children. That SECOND baby turned into a second and THIRD when the egg split.

For years, my sister-in-law would lament the challenges of having 3 (2 of my sisters have 2 each) with time-tested classic examples: it's 2 against 1 in every argument and there's always an "odd man out" whatever you do and where ever you go. Rides are always 2-seaters, someone's got to sit alone in the waaaay back of the mini-van, and then, of course, the obvious... a parent has 2 hands to hold onto 2 kids. Which I've now expanded to include a parent has 2 eyes -- one to follow each kid; 2 legs -- one to chase each kid; and there are 2 parents -- one to pin down each kid during diaper time. That SOOOOO doesn't work with THREE! Especially when 2 of them are a pair of twins which means they share the same developmental age and require equal levels of parental supervision, guidance and protection to keep them safe and alive all while they're moving at break neck speed in 2 totally different directions. A brief glimpse of my life on Crazy Street!

So we set up your home to accommodate our three children's safety, learning and development... And, just when we've got it down and the kids are happy to stay at home, wouldn't you know it, we get invited to go to someone else's house which is not ideally set up to accommodate 3 kids -- 2 of whom are 4-year-old twins. Generally, the invite comes from family because most people outside of the family are not interested in play dates involving more than one kid. And, going to other people's houses -- especially if they don't have young children -- presents a new set of challenges. There are untold dangers lurking around every corner. We parents of multiple wee ones have to worry about :

1. Not breaking any of the hosts beautiful decorations. My house is completely childproofed... read: devoid of beautiful, breakable decorations... So, we don't have them anymore. They've either been removed or broken;

2. Whether sharp objects like scissors, knives and tools are in locations accessible to little ones. Ours are all in locked drawers or out of reach cabinets.

3. Not falling down the stairs that have no baby gates. There's a locked baby gate at the top and bottom of each stair case and at several door ways in my home; and

4. Not taking a dive into their swimming pool (doesn't matter if it's open or closed).... Because my guys can't swim yet. You see, the toddler swim lessons at the local pool require an adult for each child and are only offered when daddy's at work.

When visiting others, help is welcome but generally not available. I absolutely do not expect anyone to watch or care for my children but me... and my husband! I recognize that other guests have come to this party to socialize and NOT to watch my kids. So, I accept that my role is still to parent and not to socialize all that much... Mostly, I'm running around -- calmly on the outside, frantically on the inside -- in search of one or more of my children to ensure their well-being... And, if I'm not worried that they're still alive and still on the premises, I'm thinking about whether they've had anything to drink. Did I bring the apple juice? Have they and will they eat what's available? Did I bring the Tostitos? Are they appropriately occupied? Not watching x-rated movies with the teenaged boys? Do they need their diapers changed? Or, have they exploded all over the hosts house? Are my children hurt? Have they broken anything -- bones or the host's valuables? Are they lost? Or, visiting with pets they shouldn't be? And, the list goes on, specific to whose house we're visiting.

This weekend was different! This weekend we had the good fortune to visit the stunningly beautiful home of my cousin, Bridgette, and her family for a reunion of my mom's side of the family with all of my cousins. By the way, our host, Bridgette, also has 3 kids. Looking at them now -- all middle-school aged and above -- there's no evidence whatsoever that she ever went through this frenzy that I experience every time we visit a new house. Makes me wonder if this is really a twin-specific thing versus a 3-kid thing. Anyway, there we are in a meandering home with rooms off of rooms off of rooms where comfy chairs grace nooks and crannies at every turn. Multi-level patios look out on the 7-acre grounds of manicured lawn and surrounding woods. Steps lead to an in-ground swimming pool and picturesque fire pit and there's a trampoline at the edge of the clearing. Quads are parked in the long and winding driveway, waiting for drivers to choose any one of multiple paths that lead off into the woods. It's a shangri-la. Their own Private Idaho which she opened up to the likes of us! Ha ha.

Sarg parked himself in the kitchen 5' from the door to the downstairs playroom -- with a view of the 1st floor office-turned-playroom. (Bridgette informed us that hand-me-down toys were moved upstairs specifically for our taking... Home! Please!) I parked myself outside on the upper deck with a view of both the exit door from the tv room and the lower deck sliders leading out to the yard which exits through the office connected to the basement playroom. It' a jump and a skip (or a bee-line for the boys) to the pool from there! Aptly stationed... we stood guard!

As it turns out, Sarg was able to have a lengthy and in-depth conversation at the kitchen table with Cousin Tom and I caught up with cousins Rosalie and Jim while the children played nicely. Quietly. Supervised, cared for, followed and otherwise entertained by two of Bridgette's children and one of Jimmy's kids: Patrick, Joseph and Daniel attended to Brian and Michael like pros! They were having so much fun that Olivia and some of the other kids joined in. They all played. They all ate. They all jumped on the trampoline. They kicked the soccer ball and threw the football around. They watched Finding Nemo in the tv room and Star Wars in the Club House. Played sword-fighting in the basement playroom and robot in the office-turned-playroom upstairs. Even their cousin Tara pitched in to intercept Brian's solitary bee-line toward the pool. Amazingly, neither he or his brother even bothered to try it again. The big kids were so engaging, the little kids had no reason to stray. Patrick and Joseph helped my boys onto and off of the trampoline. Daniel escorted them back up to the house (avoiding the pool). In between, Patrick even helped Olivia perfect her trampoline handstand and gave her a ride through the woods on the quad... After which Tim and I HAD to take turns giving Brian and Michael rides as well.

Great fun was had by all. Even, and maybe especially, by the Sarg and I because we so infrequently get the chance for child-free adult conversation (or to ride quads)... All my thanks to the next generation of cousins. These wonderful kids brightened our world this weekend. Their bright light shone, not at the end of the tunnel, but right here in the part we're traveling through right now. What a wonderful band of angels my cousins are raising. They should be proud of their beautiful children and the gift they gave so willingly to me and mine without even being asked.

Here's to my cousins' children... Angels amongst us!