Thursday, November 1, 2012

One of a Kind

1 in 88.  

My son is the one in 88 children who have Austism Spectrum Disorder.  There, I said it.  It is hard to say, even though he was diagnosed almost five years ago.  I can still tell you that day, even without looking at a calendar.  January 11, 2008.  I can tell you what I was wearing (black nursing top, jeans).  I remember Sophia was so sick with what we later learned was RSV.  My grandmother was in the hospital with pneumonia.  My cousin and his wife had just had a baby, several weeks early.  And Developmental Pediatrics called and said they had a cancellation and could see Jake that day.  I remember thinking, as I was rushing to get my 4 month-old and almost 4 year-old ready with just 30 minutes notice that, "This might be our last time being normal."  If he was given the diagnosis, from that day on, he would never be a normal child again.  

But he wasn't "normal," whatever that was. Obviously, if he was, we would not have been seeking an evaluation.  He would not be receiving special ed services.  I watched him perseverate and refuse to cooperate throughout the evaluation.  The doctor at the end confirmed my suspicion that Jake had "mild" Asperger's syndrome.  She then said, "I know you were hoping to hear this."  I said, "No, I was hoping you would say he was just quirky."  Who would hope for this for their child?  She reassured me that he would "grow" out of it, meaning that he would learn functional coping strategies that would essentially make him able to function without standing out.  It was a grim day.

But that was almost 5 years ago.  Since then, we've done special education teacher services, occupational therapy, speech therapy, and counseling.  Jake went to a highly restrictive kindergarten program that was not a great fit for him, but afforded him one of the best teachers I have ever met.  Jake has done really, really well.  He has come such a long way.

He makes eye contact, and has the best smile.

He no longer perseverates.

He has developed flexibility.

He has friends.

But, he also has attention difficulties and very, very slow processing.  

In 2013, the book that defines psychiatric illness, the DSM, is being revised (it will be the DSM-5).  Asperger's syndrome (as well as Pervasive Developmental Delay, or PDD) will no longer be stand-alone diagnoses.  They will be under the Austism Spectrum Disorder diagnosis.  Meaning, Jake will officially be "Autistic." 

So, I had Jake re-evaluated.  To me, he does not look like a child with Autism.  I know children with Autism.  He is not anything like that.  He is very high functioning.  But he's still quirky.  He is also very, very intelligent.  But he's not Autistic, right?

No, he is.  That's what the latest round of testing has shown.  He is still very mildly on the Autism Spectrum.  He is still the one in 88.  

It is still hard to admit.  I feel like he's broken and I can't fix him.  

I know how lucky we are.  Not bragging or anything, but my son is completely and totally awesome.  Everyone loves him (except sometimes for his sister, but that's understandable).  He is funny.  He is bright.  He is musically gifted.  He is compassionate.  He's a good kid.  He will do great things in his life (which is a direct quote from the psychologist).  He will go to college and get a great job and get married and make me a grandmother (but not for at least 25 years, if he knows what's good for him!).  

I know how fortunate we are.  

I work with the families day in and day out whose children may not have the same potential.  The kids who are so locked into their own worlds that there is no reaching them.  I work with families who end up burying their children.  

I know we are lucky.

I know that some of the same characteristics that put Jake on the spectrum are what make him so wonderful.    It is two sides of the same coin.  I wouldn't trade Jake for anything, but I want to make the road a little easier for him.  

It still hurts to hear that my son has (even though it is mild) Autism Spectrum Disorder.  And now we can add Attention Variability Disorder (a form of ADD) and Processing Disorder.  I know that these are things that describe how Jake's brain works, but they are not who is he.  He is wonderful.  He is smart.  He is funny.  He is nice.  He is loving.  He is cuddly.  He is inquisitive.  He is loved.  He is my son, and while he may be one in eighty-eight, he is really one of a kind.

3 comments:

  1. You really have a beautiful style of writing! I enjoy reading each one of your posts. -Mari-ann
    And thank you for some of the best new mommy advice...it's okay for her to cry. And I haven't missed a shower since then!

    ReplyDelete
  2. Thanks Mari-ann! I kind of view this whole-Mommy thing as something we need to stick together on. It's hard enough, but, just like everything else, seems better with friends (or wine).

    ReplyDelete
  3. Kate, I miss you....I miss our scrapbooking sessions, and I can hear your voice when I read this. You are a great mommy and a wonderful Physical Therapist!!Pam R

    ReplyDelete