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)