In Utero Testing -- The Need to Know -- And Then What?

In utero diagnosis is an imperfect science (to quote a peri-natologist I saw during my pregnancy) and leaves so much -- not necessarily good -- to the imagination at a time when hormones are already raging. Folks say it's "good to know... To plan!" But, maybe you just can't "plan" for some things. So you've been told that your unborn child has Down syndrome?

Q -- Will you sleep soundly for the next 5 months wondering about the future?
A -- I highly doubt it. I barely slept well just because I was pregnant... never mind any "bad" news I received from the medical community. And, this is a time when I -- and the babies -- desperately needed rest!

Q -- Can you pre-book the heart surgeon?
A -- In utero problems have a way of resolving themselves prior to birth. And, if they don't, all necessary medical personnel are on hand... You're in a hospital! My boys were born without any heart defects.

Q -- Is it necessary to contact the state's special services folks in advance to get the ball rolling?
A -- No need, they contacted me within a week of my children's births based on the hospital's notification. And, Early Intervention began almost immediately upon their arrival home at -4 days old.

Q -- Do you put them on the waiting list for the best local special needs school/camp etc.?
- We learned we had to wait and see what level (if any) impairment there might be and then decide. My sons are cognitively intact. As such, we've chosen to go the inclusion/mainstream route to facilitate their development.

Q -- Should you terminate the pregnancy because the MDs tell you the child's quality of life will suffer due to the DS-related defects?
- What if they were wrong and I terminated two healthy, amazing little individuals? We had a number of incorrect, in-utero diagnoses (DS was not one of them), each outcome worse than the next. It turned out that my boys are fine... developing on the low-end of the "normal" curve... with Down syndrome.

Q -- Do you anticipate and/or plan for the worst or do you hope for the best?

A -- Had I tested and been told they had Down syndrome -- along with all the other misleading and flat-out-wrong in-utero diagnoses they predicted -- I would not have known all these healthy things about my boys. Had I been told this information during this most-stressful time of my life, I might have been swayed to terminate based on incomplete and/or erroneous information. And, these two beautiful children who are now brightening the life paths of so many others would not be making their way through their own lives with great success and fanfare. They would never have graced this earth and made it a more beautiful place.

* Note: This is not about pro-life versus pro-choice. This is about the value, specifically, of in-utero diagnoses of Down syndrome.

So Low Tech -- Me!

Sorry for missing yesterday and, apparently, today. I've been experimenting with scheduling posts and, obviously, I haven't worked out the kinks yet. That's just a nice way of admitting that I don't know what I'm doing, here. But, if you don't see my new post technically tomorrow at 12:01 this AM (because I can't figure out how to get it posted tonight), then I'll have to quickly perfect my copy/paste capabilities which I also have not been able to get working in blog-mode.

I'm not even going to tell you what it is I did for a living before I became a stay-at-home-mom to my 3 beautiful children (2 of which happen to have Down syndrome). Suffice it to say that I SHOULD be able to figure out all this "simple" computer stuff and my colleagues would be on the floor laughing at my folly.

I guess it's good to be able to laugh at yourself! So, this is me laughing all the way to bed! And, tomorrow, hopefully, I'll be able to say I learned something new (how to schedule a post)... if I'm lucky!

Better Late Than Never

This is yesterday's blog. Yes, I know it's late. But, better late than never, I always say. As a matter of fact, sweating over whether or not I'd get to blog yesterday in honor of Down Syndrome Awareness Month, gave me my topic...

Children with Down syndrome almost always end up able to do most of the things that typically developing children achieve.... They just do it on their own timetable! It may take a little longer but, invariably, it does happen. They'll walk. They'll talk. They'll run and ride a bike... like most kids. They'll go to school and, yes, even graduate. And, many will go on to college. That's right they attend college, earn degrees and get paying jobs!... Just like typically developing kids! It might take a little longer but it can and does happen with patience and support (just like with some typically developing kids - LOL).

The developmental timetable for children with Down syndrome may mirror the typical timetable in some areas or may extend a bit further into their young adulthood in others. But, those of us with children with Down syndrome should take heart... because All Good Things Come to Those Who Wait and the Reward is GREAT!

Fun Facts Regarding My Boys!

Here are some interesting numbers I recently heard...

1 in 800 = the chance of having a child with Down syndrome
1 in 300 = the chance of having identical twins
1 in 240,000 = the chance of having identical twins with Down syndrome

That's approximately 12 sets of identical twins with Down syndrome in the US per year (out of about 4,000,000 births)

1 in 4 = the chance of identical twins being mirror image twins

SO, the chance of me having my boys -- mirror image, identical twins with Down syndrome is most closely calculated at:

1 IN A MILLION!

... I knew they were special!

But, it's nice to have the numbers to back up my claim!

Interesting Correlations Are Not Always Direct Cause & Effect

Two things correlated are not necessarily related by direct cause and effect.

Research shows that diapers and beer are the two items most commonly purchased together at the supermarket! Does that mean that having young kids in diapers drives more parents to drink? Or, that drinking beer directly causes the birth of children (in diapers)... OK, don't answer that!

History says the simian crease occurs in people with extra 21st-chromosomal material. But, there are people without Down syndrome who have the simian crease AND people with Down syndrome who do not. Are they directly related by cause and effect or do these two things happen like beer and diapers?

Research also shows that the children of mothers who breastfeed have higher IQs by 2-3 points. Does that mean if you breastfeed your child, you will raise his/her IQ by 2-3 points? Or, is it possible that the type of mother who breastfeeds her child is more attuned to educating, interacting with and exposing her child to more varied experiences that result in her child's higher IQ scores (statistically speaking)?

History shows that children with Down syndrome who were raised in their homes had higher IQs than those who were institutionalized. Was it just coincidence that the children who stayed home had less "mental retardation" than those who spent their lives in an institution? Or, perhaps like breast feeding, the type of mother who chose to keep her child home was more attuned to educating, interacting with and exposing her child to more varied experiences that resulted in her child's higher IQ scores!

Correlations are not always what they seem but are often presented to us in a way that insinuates direct cause and effect. Just something to think about....

Down Syndrome - A Little [Painful] History

Down syndrome was first described as a chromosomal-based syndrome in the 1930's. It was initially called Mongolism because it was believed that the physical appearance of a person with Down syndrome most closely resembled native Mongolian people. In the early '60s, the term, "Down syndrome" was officially adopted after Dr. John Langdon Down clinically described the syndrome (grouped common symptomology)... And, out of respect for the wishes of the Mongolian government who took offense to the term "Mongolian idiot", when referring to a person with Down syndrome. (I find it unbelievably offensive myself and, sadly, still run into some 'old school' folks who insist on referring to my children in this manner.)

From the 1930's to the 1960's, it was widely believed that people with Down syndrome were profoundly mentally retarded. As such, the common practice was to permanently institutionalize individuals with Down syndrome for on-going life-care. However, in the 1960's and '70s, various studies began to recognize that the earlier children with disabilities received special education, the better their outcomes. Through university programs, such children, including those with Down syndrome, began to receive early developmental and educational services. Amazingly, it wasn't until the 1990's that Early Intervention programs finally took hold universally. This began to erode the outdated thinking and practices such that tremendous gains in cognitive and physical development in people with Down syndrome were achieved.

Today, many still hold antiquated beliefs about how Down syndrome effects the individual. As I researched this history, I found information still circulating that touted necessary characteristics of the syndrome that do not apply to my sons (who certainly have Down syndrome). For instance, though mild to moderate mental retardation may occur, like other disabilities such as Cerebral Palsy, they are finding that not all people with Down syndrome are mentally retarded. (My sons were just declined services through OMRDD for not being "mentally retarded" based on their IQ scores.) Additionally, while nearly 80% of people with Down syndrome may suffer from heart defects, 20% do not. (My boys' hearts are defect-free and no different from yours or mine!) Not all people with Down syndrome have the simian crease and some "typically developing" people have one or more simian creases across their palms. (My sons have one each but their eye doctor has two and, no, he does NOT have Down syndrome... Which makes me wonder just how strongly it is related to the extra chromosomal material!) So you see, we are still a long way from fully understanding the cause and effects of this syndrome, and the capabilities of, and possibilities for, individuals who are afflicted.

It has taken nearly 80 years to realize that people with Down syndrome are truly viable members of our society. (And, some would argue, perhaps correctly, that we're still not there.) This is a sad historical fact we cannot change. But, to me, the most devastating aspect of this history is the institutionalization of this absolutely amazing population. My sons thrive on social interaction. I cannot imagine a worse thing you could do to them than to isolate them from others and strip them of their right to be participating members of our society. We must all do our part to ensure that it does not take another 80 years to foster greater acceptance of people with Down syndrome.

I See Two Babies...

You should know I never run out of wonderful stories to tell about my beautiful identical twin sons who happen to have Down syndrome. As I type they are not-so-quietly playing with their pirate-men... having duels between them. But, the bewitching hour is upon us so this will be quick....

My boys were born via C-section at 32 weeks. It was a tough pregnancy, completely unrelated to their as yet undiagnosed Down syndrome. No sooner was I rolled into the NICU than the Neonatologist told us they were healthy and strong and breathing on their own. But, she continued, she was concerned about some "signs" and was sending out a blood test for Down syndrome. I was immediately relieved that my sons (we hadn't found out the gender before their births) were breathing on their own and alive. The multitude of incorrect in-utero diagnoses we'd suffered had, thankfully, not come to fruition. My husband, however, looked, for just a split second, like he took a shot to the gut. I thought if he could have, he'd have escaped into the nearest closet to scream at the top of his lungs, "NO!" But, it was a fleeting moment and together we said, "That's fine. Thank God they're alive and well!" My husband went home that night to care for our daughter as I stayed in the hospital with our newborn boys to rest, recover and nurse them.

The next morning, when my husband came back I asked him how he was feeling about the news. First, he said we should just wait and see what the tests said. But, I knew from the way everyone was talking to me that the test was just a formality and their simple way of breaking the news to us. Our boys had Down syndrome. So, I shared this with my husband. He expressed sadness that they might not be able to do some things that other kids do... like play soccer, maybe. But, I told him not to worry. The boys would be able to do all the things we'd dreamed of... They'll walk. They'll talk. They'll run and ride bikes. They can play soccer if they want to. They'll go to school and get jobs. It'll all be fine. He thought about this, then recalled a conversation we'd had about Olivia when she was born, "Remember we said she can be whatever she wants to be. If she wants to pull weeds from people's gardens for a living, that's fine. Whatever makes her happy. Brian and Michael are no different. I don't see Down syndrome. I see two babies who need loving and feeding and diapering just like any other babies!"

These words have been our guide ever since.

This Motherhood is Bliss!

Do you know the definition of "bliss"? According to Webster it means, "complete happiness, blessedness, joy!"

There is no question that children with Down syndrome bring joy to the lives of everyone they touch. Parents of children with Down syndrome report the greatest level of parental satisfaction than any other parents. The one word I hear most often from parents of children with Down syndrome is "blessed"!

This morning, a woman dropping her child off at my boys' "special" school complemented me on how adorable my beautiful boys were. I don't know if her child had "special needs" or is "typically developing" as the school promotes an integrated environment which, by the way, I believe wholeheartedly in and is the reason I chose the school. Regardless, her complement caught me in a whirlwind of my own feelings. I suddenly found myself exclaiming -- with overwhelming joy like I've never felt before and nearly laughing with pleasure -- how absolutely amazed I am every single day at this gift I've been blessed with! I thrive on the happiness and love and joy they bring me... just being their mother. I am in awe of these 2 beautiful human beings. (She might have thought I was crazy but I think, mostly, she agreed, I'm blessed!)

Well, here's another mother who, from watching this video, I know feels EXACTLY the same way I do. My heart aches with joy for myself, for her and for all of us blessed with a child (or two) with Down syndrome.

http://www.youtube.com/watch?v=hVLtOjP1LB0

Down Syndrome & Obesity - It May Not Be What You Think

Early on, when my children were very young, I expressed my concern to a "lay expert" about the fact that my children -- identical twin boys who happen to have Down syndrome -- were not eating very much at that time. Though she had children, I refer to this person as a "lay expert" because she had no particular professional or personal knowledge of Down syndrome but was willing to share what she believed.


This particular "lay expert" (I'd heard similar comments from others) said that people with Down syndrome have a problem knowing when they are hungry or sated so they tend to overeat and, therefore, tend to be overweight. She said it was my responsibility to limit my children's intake to prevent such obesity... for their own good. Of course! Well, leave it to me to need to verify a new-found piece of information especially as it pertains to my children and Down syndrome. I had to make sure that I fully understood this "problem" so that I could help my children overcome any obstacles it posed. Additionally, I wanted to speak from an educated point of view if this same question was ever posed to me. So, I researched it and found out that my "lay expert" had antiquated beliefs and/or inaccurate knowledge about people with Down syndrome.


In fact, it is believed that people with Down syndrome feel and understand hunger and fullness just like the rest of us (which, by the way, doesn't always stop any of us from overeating or under-eating -- with or without Down syndrome). The tendency toward being overweight has more to do with muscle tone than anything else. That is, people with Down syndrome tend to have low muscle tone. Frequently, very low muscle tone. Note: some people without Down syndrome also have low muscle tone AND some people with Down syndrome have nearer to normal muscle tone. (By the way, this latter category is where my guys fall... in the low-end of the normal range... like me, their mother, who happens not to have DS.)


Now, I can't tell you how many people have said to me, "I don't think your guys have low muscle tone... They're so strong!" But, muscle strength is different from muscle tone. Muscle tone refers to the state of your muscle at rest. The best explanation of muscle tone I've heard came from our physical therapist, Jill. She explained that the muscle is like the inner-tube/tire of a bicycle. When the tire has good [muscle] tone, it's full of air and so rides and turns easily. If the tire has low [muscle] tone, it's limp and very hard to move, ride or turn. Most of you can hearken back to your bicycle riding days as a kid when the tires needed air and you had to r-e-a-l-l-y p-u-s-h to get the bike going. Myself, I don't have to hearken back that far because my double jog stroller frequently has a flat or two from over-use and under-maintaining. And, let me tell you, pushing almost 80 lbs of boy (my 3 1/2 year old twins) is quite a workout with low-muscle-tone tires! That means, if your muscles have low tone, getting started and keeping your momentum going is more difficult. As such, people with low muscle tone tend to be less active than people who have high muscle tone because it's just harder to be active. Now, I didn't research this, but I'd guess that people with Down syndrome have no more weight issues than your average couch potato... except they've got a better reason if they do have a weight problem.


So, now that I understood it, how could I help my boys overcome the potentially negative effect of low muscle tone? Well, muscle tone aside, I figure a body's got to be motivated to move. But, if motivation is not always innate, or is counterbalanced by extenuating circumstances like low muscle tone, I found, it can be instigated. That is, I keep things all over the house and do things that inspire my children to move. Sounds so simple. There are toys and activities upstairs on the balcony and in the bedrooms. There are different toys and activities downstairs in the basement playroom. And, there are still more and different toys and activities scattered (literally and much to my husband's chagrin) all over and in every room of the house on the main floor. And, throughout the day we move from floor to floor, room to room and activity to activity. Outside, at last count, we have 4 climbing sets, 2 playhouses, 2 sand boxes, a swing/slide set and a treehouse-from-heaven (in progress and, once completed, will include a 14' slide, 70' zip cord and 5' x 16' climbing net as well as a short climbing wall and standard stairs, for those less motivated). That is, we encourage our boys to be very physical. Honestly, I do think their inborn personality makes them active climbers and jumpers anyway, much to their teachers' dismay. They climb the 6' tall cat condo and sit in the top perch. They jump on the trampoline in the basement. They hang on the rings and trapeze bar hanging from my kitchen ceiling. They swing on the swing hanging from the rafters in the bedroom. And, they slide down the various slides found on every floor of the house. All, just in passing. Additionally, we play some very physical games (usually no one gets hurt... not seriously anyway). With bed rails completely enclosing my king-sized bed, we play multi-ball catch and throw where the boys try to keep the balls off the bed and I try to keep them on the bed -- all of us using any part of our bodies to keep the balls in a constant state of motion... like the boys. We have duels with balloon-swords and the trim from our rubber mats, we hold hockey or lacrosse shoot-offs in the great room complete with goal and foam balls/pucks, and we hold golf tournaments that run through the whole house. We also play "Keep the cats off the bed". A game where the kids sit on the top bunk bed and throw multiple cat beanie babies down into a laundry basket on the floor while I throw them back up to them as fast as I can. A good work-out for all. And, we play hide-and-seek running from column to column in their school's atrium, every day when I drop them off and pick them up. Just a little extra physical activity where I can fit it in. Now, you might be thinking our games are weird, over-the-top or even a bit dangerous. But, the boys' PT is sure it has helped their physical development and it certainly keeps them active. And, our family social worker says that allowing the boys' the "dignity of risk" will keep them motivated to try new and different things throughout their lives. (That's not to say we don't draw the line on truly dangerous activities.... LOL!) But, they get it. They're active and curious little men and we try to feed that innate sense despite their low muscle tone.


OK, so in conclusion, my boys -- who happen to have Down syndrome -- know exactly what it feels like to be hungry or full. And, they know what to do with that information... eat or stop eating. And, while I can't change their muscle tone, I can try to counteract it's effect by enhancing their motivation. Note: As it turns out, that day with the "lay expert", they were just in an eating lull. My boys are holding steady in the 50th percentile (on the "typical" growth charts) for both height and weight -- despite being born 2 months early and with Down syndrome.

My motto -- Where there's a will, there's a way! We just have to find it...
The Will AND the Way!

October is Down Syndrome Awareness Month

Quickie today.... You know, all this writing I'm doing in honor of Down Syndrome Awareness Month is not increasing any awareness if nobody but me and a few others are reading it. So, for those few dear souls who choose to spend a moment reading my thoughts...

First -- Thank you. I appreciate your support and hope you'll continue reading
Second -- Share it with a friend who might appreciate the information
Third -- I'm going to email everyone in my address book again and share my blog... again.

I apologize if I'm bugging you. But, look at the bright side -- at least I'm not calling at dinner time and asking you for money or which candidate you support. With email, you can delete without me ever knowing and it won't hurt my feelings a bit... Though, I hope you don't spam me because then I'll never be able to get in touch with you via email which might actually provoke me to pick up the phone just to say "hi" and that might bug you like all those telemarketers.

And, as I've said before, I would love it if you'd take a second to read up about Down syndrome. After all, there are only 2 weeks left in October before I move on to other topics that may or may not interest or affect you. Note: Given I have these two beautiful little identical twin men with Down syndrome, much of my writing will likely include references to Down syndrome on-going.... Just thought you should be forewarned. I hope that you'll stay with me : ).

xo maggie

Down Syndrome Prevention?

We are all inundated with requests from various organizations fundraising on behalf of their 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 I believe in and to the organizations I trust.

However, I recently found myself troubled by something pertaining to fundraising on behalf of 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 prevent 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 that people with DS may exhibit. I suppose, curing a person with Down syndrome would mean being able to remove the extra chromosomal material before it has a negative affect, or reversing the negative affect it has on the individual.

But, here's the part that bothered me a bit, honestly... Tell me, what does it mean to prevent Down syndrome? To prevent it from ever happening would require knowledge of exactly where and when that first accidental over-duplication of the 21st chromosome occurs so that you can undo the mistake and then allow normal duplication and development to continue without further interference thus becoming an individual without Down syndrome. Now, don't get me wrong, I'm as amazed as the next guy over the incredible leaps and bounds science is making every day. But, I'm not sure we'll ever get to what I've just described. The other, 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 prevent them from developing* into a person with Down syndrome.

So, if we succeed in preventing Down syndrome this way, eventually, people like Brian and Michael would no longer exist in this world. I simply cannot imagine how our world would be a better place without the likes of such beautiful people. Brian and Michael and people with Down syndrome teach us acceptance and help us to focus on our blessings, one way or another. Mind you, I'm not saying don't do the research. I'm just pointing out a troubling angle... Troubling for me anyway... But then, you'd have to know Brian and Michael -- or someone else with Down syndrome -- to really understand my trepidation.

* 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 existence of people with Down syndrome.

Mosaic Thoughts by Maggie

Michael and Brian are so high functioning that all the medical professionals we came in contact with were sure they had "Mosaic Down syndrome". After the umpteenth time hearing this, I decided I needed to find out if, in fact, they were and to investigate what that meant... exactly. Please note: Some of what I have written here is factual and some is my interpretation of those facts. So bear with me:

Here's what I garnered from my research -- To my medical providers' surprise, Michael and Brian have "typical" Trisomy 21 Down syndrome... Not mosaic.

"Typical" Trisomy 21 Down syndrome is characterized by the presence of extra chromosomal material in the 21st chromosomal pair. This error is replicated as cells split and multiply during fetal development. When blood samples are taken, this extra chromosomal material is present in some very high percentage of the cells that are tested. That is, nearly 100% or 100% of the cells tested have the extra 21st chromosomal material.

"Mosaic" Down syndrome is also characterized by the presence of extra 21st chromosomal material. However, when blood samples are taken, this extra chromosomal material is present in some number less than 100% of the cells that are tested.

Now, here's the thing. I also read that if you test blood samples from different areas of the same individual -- the leg, stomach, or brain, for instance -- that the % of cells with the extra chromosomal material varies according to where the sample was drawn from. That means that somewhere during the body's developmental processes, the duplication error either accidentally stopped copying the extra material (undoing the original error), OR that the duplication error happened later in development so the cells that developed before the error was made were unaffected, OR that the ultimate destination and role of any particular cell may, or may not, repeat the duplication error... such that not all the cells in the body will necessarily carry the extra chromosomal material and may, thererfore, be less or unaffected.

Interestingly, I read many comments by parents whose children were diagnosed "Mosaic DS" who said they wished they had not been lead to believe that their children would automatically be higher functioning because not all the cells had the extra chromosomal material. Many of these folks found that their "mosaic" children had the same, similar or as many developmental issues as the children with "typical" Trisomy 21 Down syndrome. Logically, if there's significantly less extra 21st chromosomal material overall then one might think the chances are better that the individual would be less affected. However, where this extra chromosomal material attaches itself complicates that assumption.

Medically-speaking, we can see how many cells contain the extra 21st chromosomal material. However, (here I go again on my soap box) because research shows that developmental and environmental factors drastically influence the outcome... how much and where the extra 21st chromosomal material attaches itself as well as hormonal responses to and environmental factors acting upon the individual -- including exposure, teaching methodology, nutrition, medical intervention, family treatment and societal treatment -- NO ONE CAN KNOW THE OUTCOME OR PREDICT THE LIMITS OF A PERSON WITH DOWN SYNDROME!

Ya Gotta Believe!

Grass Roots Advocacy

Advocacy: Pleading another's cause (Merriam Webster Dictionary)

These days, lots of folks see Advocacy as supporting a cause en masse. That is, we march for awareness and press for civil and legal support for our cause... Wear a pink ribbon, put a bumper sticker on the car, cast a vote, attend a rally/meeting/protest, write a blog, etc. And, while these are all good and worthy efforts, the truth is, ADVOCACY BEGINS AT HOME!

As the parent of identical twins with Down syndrome, I have come to realize that supporting my children's efforts at home -- that is BELIEVING IN THEM and in all the possibilities for their futures -- gives birth to my ability to advocate on their behalf. It is my belief in their ability -- current and future -- that enables me to ask for additional services for them and for others, to raise more money to fund research looking for a "cure" and/or better treatments, and to speak at local colleges to raise awareness... of the possibilities.

BE A GRASS ROOTS ADVOCATE! BELIEVE IN YOUR CHILD SO THAT HE WILL BELIEVE IN HIMSELF AND OTHERS CAN TRULY BEGIN TO BELIEVE AS WELL.

Predicting the Intellectual Limitations of People with DS

Someone recently told me they were surprised to read my post on Down syndrome and Mental Retardation, having been told -- and come to believe -- that all people with Down syndrome have some degree of mental retardation (MR). She let me know that she forwarded my post to her contacts within a few Down syndrome organizations asking for their response.

Well, here's my response:

If they answer at all, they will probably give some technical/definitional information regarding MR being characterized by an IQ below 70 accompanied by developmental disabilities. However, they are now finding that early intervention and alternative teaching methodologies are making a difference in the measurable IQ levels of people with Down syndrome as well as those with Autism. This is partly because the IQ tests are somewhat fallible, in that parts of the test measure experiential concepts that have to be taught (read: environmental factors and not intellectual capacity). Additionally, it is difficult to define intellectual limitations versus learning disabilities (LD). That is, in some instances, when measuring intellectual capacity, we can't rightfully say whether a person can't learn it or whether we have not found the right way to teach it to them. EI, which addresses teaching methodology and experiential/environmental exposure, has made great strides in educating children that used to be considered ineducable or mentally retarded, resulting in further blurring of the line between MR and LD.

I could go on regarding the unique impact of the extra chromosomal material on the individual with Down syndrome and how it is drastically affected by hormones and environment resulting in an unpredictable outcome. My sister, who is a microbiologist, had a colleague who left NYU, where she worked, to go to a prominent university in Texas where he is doing in depth research on this very subject. Their findings thus far is that the outcome is truly unknown, flexible, changeable, depending upon and according to where and how much extra 21st-chromosomal material the individual has, as well as his/her hormonal responses to and HOW HE IS TREATED IN LIFE (again, read: environmental factors such as exposure, repetition, teaching methodology, nutrition, medical attention, familial treatment, societal treatment, etc.).

This is not to say there are no limitations.... But, No One Can Know or Predict the Limitations of Another! None of us should go through life expecting our children to be mentally retarded... though we should accept that there may be intellectual concepts that they may ultimately fail to grasp... just as surely as there will be skills they excel in. This is true for children with DS as well as those w/o DS. For instance, I stink at Math! That is, I seem to have failed to grasp at least some of the abstract concepts despite many years of mathematical instruction undertaken to teach me these concepts. No, I'm not mentally retarded... Actually, I'm relatively intelligent if I do say so myself. It's just that the mathematical teaching methodology used in "those days" didn't work for me. So tell me, if Brian and Michael ultimately stink at Math as well, if they fail to grasp these same concepts that have alluded me, is it b/c they have Down syndrome? Is it because they are mentally retarded? Or, is it because their instructors didn't find the right way to teach it to them (or me)? Or, did they just inherit a poor mathematical aptitude from me???

I Speak, Therefore I Am (an Advocate)

At the start of each semester, I find myself tap-tapping away at my computer, sending letters to the local colleges' psychology, speech/language and education department staff members offering to visit their classrooms with my children and give their students an up-close-and-personal look at what Down syndrome looks like. Currently, 4 colleges -- Nassau Community College, Adelphi University, Molloy College and Hofstra University -- invite me to share my experience. My primary purpose is to meet and speak with people who are training for careers that interact with people with disabilities like Down syndrome. I want them to see the personal side of their choice. I want them to know the depth of impact they have, not just on the individual being treated but on the entire family, neighborhood and society.

Below is my letter. I'm posting it here b/c I want everyone to know that their words and their actions have an impact more profound than they believe. We all have a responsibility in this society to treat individuals as individuals -- not as a diagnosis, an ethnic group, an income group, or a color -- but as individuals capable of more than any one of us can possibly know.

Dear Professor _________:

As the administrator of an educational program designed to prepare students for careers focused on helping others, you encounter individuals from every walk of life with varying backgrounds, philosophies and beliefs.

Likewise, as the parent of 3-year-old identical twins with Down syndrome (DS), I also encounter countless people of diverse backgrounds and beliefs both in my day-to-day life and as the mother of special needs twins immersed in the Early Intervention program. Most of the people I encounter -- personally and professionally – have positive and hopeful attitudes toward my boys and their diagnosis. Some, however, are uncomfortable because they have had no exposure to Down syndrome and so shy away from and never have the pleasure of knowing my beautiful boys. While, unfortunately, still others have negative preconceptions – either openly or underlying -- about how DS affects my boys and, therefore, what they are ultimately capable of achieving… Or not achieving. These folks hail from every age and ethnic group and from all walks of life including nurses, doctors, teachers, mothers, neighbors and therapists. But, they all have one thing in common. They all started out as students… and, perhaps, were never exposed to anything contrary to their limiting beliefs. Not only are their misguided notions
detrimental to the development and future potential of children like mine. But, just as important, their attitudes can negatively impact a mother’s beliefs and hopes about the special needs of her child, which can drastically affect her expectations thereby limiting her child’s achievements.

Fortunately, I am not that kind of mother! Rather, I have chosen to seize the tremendous opportunity my sons, Brian and Michael, have given me to help educate people – students like those in your program – who have chosen to work with children and adults with special needs including DS. My mission is to give your students the opportunity to experience Down syndrome first-hand, to ask questions, get answers and to change the antiquated and limiting preconceptions that may exist… one student, one class, and one university at a time. My boys, developing mentally and physically on the “typical” developmental curve, are a living example of what is possible. I think that every one of your students should have the awesome opportunity to meet them and believe in the possibilities for every child with Down syndrome.

For the past two years, we have been invited to speak with child development, psychology and speech & language students at Nassau Community College and Adelphi University. We have candidly discussed the cause and effect of Down syndrome on Brian and Michael; on their older sibling, Olivia; on me and my husband; as well as our experience with Early Intervention; our approach to their education and development; their overall and specific health issues; how DS has impacted not only our family, friends and neighbors but the community at large; and how the beliefs of their caretakers – your students – can greatly influence the outcome. Now, I would like to further expand Brian and Michael’s positive influence to reach more people who will play key roles in the development and futures of children like them. I would like to bring Brian and Michael (and Olivia, as available) for an “up close and personal” visit with your students.

It is my hope and intention to change the way the world sees Down syndrome, one person, one student, one visit with Brian and Michael at a time. The students who have had the pleasure of meeting my children are deeply touched – their outlook forever changed for the better. I ask that you present this wonderful opportunity to the faculty in your department and have them contact me to set up a class visit. To this end, I can be reached at home or via email. I look forward to hearing from you. Thank you, in advance, for your time and consideration.

BELIEVE! no one can know the limitations of another!

I Can Drive!

As I've recently joined an online group for families with multiples where 1 or more children have DS, I've been exposed to a great but relatively small group of people, many of whom are challenged in big ways with regards to medical issues surrounding their children's diagnoses. I am so very thankful to GOD that my boys are healthy, having been born without the oft-occurring medical conditions that sometimes accompany DS (knock wood). Despite huge worries, I've noticed stories of hope and success are woven throughout the posts. So, in honor of Down syndrome Awareness Month, my new-found friends and their wonderful children, I'd like to relay what I consider a hopeful story told to me by my father when my identical twin boys were diagnosed at birth with Down syndrome.

His story was about a young lady, who I've never met, who happened to have Down syndrome. Many years ago, my Dad worked for the Dime Savings Bank. One of the VPs of that bank happened to have a sibling with Down syndrome. As such, this man recognized that there was so much more potential than was being tapped in these special individuals... "back in those days". (Sadly, still true today.) However, this man took it upon himself to do something to counter that injustice. He created a large division of the bank that gainfully employed, not exclusively but predominantly, individuals with Down syndrome.

Now, my dad hailed from the older generation that were taught that people with DS were mentally retarded and were generally institutionalized. However, his position in records management with the bank put him in contact with literally every one employed by the bank, including this "special division". On a daily basis, he observed employee work ethics, professional demeanor and competence in all parts of the bank and quickly came to view the folks working in this "special division" as quite capable and even more dedicated to the accurate and responsible fulfillment of their duties in their jobs than most of the other "able-bodied" (his words) employees.

In short order, he befriended a few of these folks, greeting them and chatting for a few moments whenever time permitted. But, one particular young woman consistently impressed him. Mind you, being old school, he still THOUGHT what he had been taught but found her to be an outlier, in his opinion.

One Monday morning this young lady greeted my father as pleasantly as always and added that she'd seen him walking through town over the weekend. When my Dad asked, "Oh, why didn't you stop and say hello?" She explained that she was driving past on her way somewhere with her Mom and couldn't stop just then. My Dad ignorantly (read: uneducated) commented that he understood, what with her mother driving her somewhere... To which she good-naturedly corrected him, "Actually, I was driving my mother. I have my drivers' license and my own car!" Mortified at his assumption, he made quick and profuse apologies. She just laughed, forgiving him without an ounce of anger or ego. And, their friendship continued unabated throughout their days of employment at the bank.

You see, up until that moment, my Dad had no idea that there really are no known limits to what a person with Down syndrome is capable of. He will never forget that woman and the bad assumption he made out of ignorance. And, I can tell you, he has never made any such assumptions with my boys. He has been one of my sons' biggest advocates, telling everyone he meets, and anyone who will listen, what amazing and capable little men my boys are. At 77, he recently said he's going to have to start taking better care of himself so he can stick around and see how wonderful they turn out. He also wants to know if there are any rules against someone with Down syndrome being in the major leagues having discovered that Brian can switch pitch and has a "killer knuckle-ball". He's sure if we hone in on his already accurate arm, he'll be the first person with Down syndrome to play for the Yankees.

A MAGIC MOMENT In Dad's Life!

After a hectic day at work, my husband sat calmly at the kitchen table with Michael seated on his lap and Brian standing before him walking his toy 'man' up and down his leg when he turned to me and said,

"These boys are MAGIC! They just make you feel so GOOD!"

Let some magic into your life. Befriend someone with Down syndrome.

Speaking of Ups & Downs - October is Down Syndrome Awareness Month

To do my part for Down Syndrome Advocacy and Awareness, I've committed to blogging for the "31 for 21" challenge (31 days of blogging for Trisomy 21). That means I'll be blogging about Down Syndrome for each of the 31 days of October.

Down Syndrome is medically known as Trisomy 21. That means that the 21st chromosome accidentally over duplicates itself and presents extra chromosomal material in varying amounts and places throughout the body. How much and where this extra chromosomal material ends up varies from individual to individual as does the outward affect on the individual.

Down Syndrome is genetic. That means it's in the DNA. But, it is NOT hereditary. It doesn't run in families. However, my risk of having another child with Down Syndrome increases if I've already had a child with Down Syndrome. I guess that means my body may make the same mistake twice. After all, I'm only human and "to err is human"!

Down Syndrome is not any one's fault and it cannot be prevented from happening. At this point, no one knows why it occurs. Only that it is completely by accident and can happen to anyone at any age. While there is all kinds of research going on to examine the why with an eye toward prevention, there is as much research on the widely varying outcomes which are vastly affected by hormones and environment -- external factors including medical treatment and early intervention. This research shows that 2 children with exactly the same DNA (read: identical twins... like mine), both with exactly the same 21st chromosome duplication (read: Down Syndrome) may have vastly different outcomes depending upon their life experience. That is, early intervention --medical, physical, mental -- can change the outcome.

Years ago, individuals with Down Syndrome were institutionalized. Today we know that people with Down Syndrome can learn to do almost anything a person without Down Syndrome can do... perhaps with a bit more help or different teaching methodology. Yesterday, they were banished from society. Today they lead productive and fulfilling lives. Imagine what we'll find out tomorrow!

Life's Ups & Downs and How They Effect Happiness

I just heard from a friend I've been somewhat out of touch with for awhile. She said that life is just hectic right now with motherhood, school, soccer, work. As the mother of 3, I know that to be true. Life is hectic! Though we haven't added soccer to the cue here yet, we have had BIG car problems and the death of an old pet to challenge our happiness. But, what struck me like a high speed soccer ball to the head was her closing statement... "And on top of it all we have to be worried about the economy".

As part of my personal pursuit of happiness -- driven by one of my favorite blogs http://happiness-project.com/ -- I try to focus on things that make me happy and to avoid things that make me unhappy. The latter task is not always within our control as we're bombarded with news of the sinking stock market and the slow down in home-sales as evidenced by the multitude of For Sale signs lining our own neighborhood streets. But, I wondered why I truly haven't been worried at all about the economy when I read what my friend wrote. Perhaps because I'm a Stay-at-home-Mom so I'm secure in my job (for now). Or, because my husband is on the city police force so his job is pretty secure too. There's always crime (perhaps more so when the economy goes south). I didn't even check the value of my 401K because it has no bearing on my life right now. When I started it, I was told, "You're in for the long haul. The little ups and downs don't mean anything."

Now, some of you may be thinking that the latest dips in the market have not been little... and you may be right. But -- and here's the part that has helped preserve my happiness lately -- I have no control over the market. All I can do is pay my bills, take care of my children, fix the car, bury the beloved dog and hope the economy improves. I'm not in charge of whether there's going to be a bail-out or which surviving company buys out which failing company. All I can do is cast my vote on election day. As such, I have to say, I've been living my life peacefully and watching a bit detached from the whole mess. No, my head is not in the sand. And, it's not in the future asking the "what if" questions. It's in the sunshine, enjoying my children's antics and the beautiful, crisp Fall days we've had. Tomorrow is another day. The stock market may rebound (tomorrow or tomorrow or tomorrow). But, I will never have this day, this moment to spend with my children again. So, I'm going to sign off now and Seize the Day!

"Carpe Diem!"

Down Syndrome Stats

Here are the latest statistics on Down syndrome that I've heard:

75% of all conceived fetuses with Down syndrome will naturally miscarry!

Of those that don't, 92% of fetuses diagnosed with Down syndrome are aborted!


Brian & Michael are here against all odds and I am so happy that they are. I can't imagine a world without them in it. In their short lives they have already touched so many and changed their lives forever for the better. Thank God for my little miracles!

Down Syndrome and Mental Retardation

In NY State -- perhaps in other states or even nationwide, though I'm not certain -- the diagnosis of Down syndrome is listed under Mental Retardation. Three and a half years ago, I gave birth to identical twin boys who happen to have Down syndrome. And, 2 years ago, the Early Intervention Social Worker assigned to our family predicted that this misclassification would be "my fight" for my boys.

FACT: NOT ALL PEOPLE WITH DOWN SYNDROME ARE MENTALLY RETARDED.
While there may be mild to moderate mental retardation this is not always the case. The IQs of people with Down syndrome can range from 50 to 140 just like the IQs of people without Down syndrome. And, the difference between mentally retarded and not mentally retarded is 1 IQ point! So, why is Down syndrome classified under Mental Retardation?

Let the fight begin!

Yesterday, we received notification from the Office of Mental Retardation and Developmental Disabilities (OMRDD) in our state capital of Albany. They informed me that they are declining us services through OMRDD. I have to admit, I gasped "WHAT?" when I saw we were declined. After all, my boys have Down syndrome! But, my disappointment quickly turned to glee. After 2 case reviews which included examination of my sons' most recent comprehensive psychological evaluations (IQ tests performed for our transition from EI to CPSE), it was determined that my children are NOT MENTALLY RETARDED.

But, my boys most certainly DO have Down syndrome. How could they belong to a subset of a larger group but not belong to the larger group? My social worker was right! THIS IS my fight. So, the good news is: my state government recognizes that my sons are not mentally retarded. The bad news: we don't qualify for OMRDD supplemental services. Don't get me wrong, this doesn't mean my boys are not delayed or that we don't receive state-provided services... They are walking the fine line between delayed and not delayed... also known as "borderline"! As such, our CPSE services continue to help them address their deficits and develop as close to the typical curve as possible. But, their delay is developmental rather than cognitive. And, yes, likely related, at least in part, to their DS. Now, I'm not quite sure how we fell out of the Developmental Disabilities part of OMRDD but I am pleased to see that we are unofficially declassified as MR!

So, in the not-too-distant future, I think I will take on this fight and get this misclassification of DS changed. I believe that Down syndrome should have it's own classification... just as Autism does. The outcome of DS on a child -- both physically and mentally -- is largely unknown and drastically affected by hormones as well as environment. DS is not a life-sentence. Rather, it is a life-long journey for each individual to learn to live to his/her fullest potential... with or without DS. A potential that no other human being can know the limits of!

Thanks for listening. I welcome any information that would point me in the right direction and prepare me for battle ; ).

xo maggie

Olivia '01
Brian & Michael '05 (ID w/ DS)

Parental Satisfaction

Still not ready to go public with this blog but I'm going to anyway just to keep my pledge to '31 for 21'. So, you'll all have to bear with me and my transition... Here's my tidbit of information that I want everyone to know in honor of "Down Syndrome Awareness Month":

THE PARENTS OF CHILDREN WITH DOWN SYNDROME REPORT THE GREATEST LEVEL OF PARENTAL SATISFACTION THAN ANY OTHER PARENTS!

I've discovered so much about myself since I've had my boys. Partly because they have Down syndrome and partly because they are twins. Not that I can separate the two. Nor would I want to. My boys bring me the greatest joy I have ever known in life. They are more capable and demonstrative of unconditional love than any pet I've ever owned. And, that's a big statement coming from a lifelong animal lover who frequently recommended to others in the midst of one relationship crisis or another -- be it sig-oth/spouse or children -- "if you want unconditional love, get a cat"!

Now, though I have a 2 cats, a dog and 3 fish, it's these amazing boys who bring me my daily dose and overabundant unconditional love. I wonder what I thought the point of life was before I had my 3 beautiful children. These "special" children whose every single accomplishment, no matter how simple, is a celebration and whose futures are bright yet unknown (just like it is for the rest of us). Thank God for my children -- who happen to have Down syndrome -- and for the one that doesn't :)... my old soul sent to precede my boys, to help and teach me. My life is fuller and richer for their presence! I completely concur with the statement above. I am happy to report that I am a blissfully happy parent of 3 beautiful children... 2 of which happen to have Down syndrome!

xo maggie

Olivia '01
Brian & Michael '05 (ID w/ DS)

I'm Not Ready!

I'm not ready to post here on this newly set up blog, but I've signed on for the DS 31 for 21 blog challenge which means I have to blog today and everyday this month. And, I have to say something about Down syndrome....

So, here's something: My husband and I specifically refused any prenatal tests that would pre-inform us as to whether our unborn twins had Down syndrome. Along with the added risk to an already high risk, twin pregnancy, we decided that there was nothing any medical test said that would have changed our minds about having these beautiful little men in our lives. Further, with the boys now almost 3 1/2 years old, my husband recently said that if, when we decided to start a family, we had learned that we couldn't have children... and someone had told us there were twins with DS available for adoption, we would have adopted these boys anyway. They were meant to be ours! DS and all. And we wouldn't change a thing about them. Truly!

That's not to say that our lives haven't been a bit more challenging. But, the love we receive from them has been more than worth the effort. They've changed our lives, our families' lives and every life they touch, forever. I only hope that everyone has the opportunity to meet and know Brian and Michael or someone like them.... to experience the optimism, the love and the joy they spread!