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

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

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

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

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

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

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

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

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

October is Down Syndrome Awareness Month: Acceptance

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

Personally, I was never disappointed! Honestly!

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

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

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

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

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

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

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

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

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

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

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

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

31 For 21 Challenge: Down Syndrome Awareness Month

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

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

THINKING THANKFUL

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

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

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

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

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

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

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

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

Potty TrainED (as in past tense)

We are SOOOOO there! 

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

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

See more Special Exposures at 5 Minutes For Special Needs

Peace -- September 11th and Turning the Other Cheek

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

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

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

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

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

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

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

First Day of Kindergarten

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

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

See more Special Exposures at 5 Minutes for Special Needs!

Special Exposure Wednesday ON SATURDAY

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

More special exposures on 5 Minutes for Special Needs.