Thursday, June 21, 2012

My Son Andrew

A few months ago, I blogged about my kids and I enrolling in a study at Children's Hospital about autism and genetics.

Part of the process involved parent interview, another direct testing and observation of Andrew.  The final piece was taking blood samples.  

A big envelope from Children's came in the mail this week, containing the results of the ADOS (Autism Diagnostic Observation Schedule- mom), DAS-II (Differential Ability Scales-Andrew), ADI-R (Autism Diagnostic Interview- Andrew), and the Vineland Adaptive Behavior Scales (mom).  

The rational part of me knows they don't say anything I don't already know.  I do, however, know that reading the report will do nothing but make me sad and likely cry.  I don't want Andrew to be defined by test scores or autism.  Test scores are just numbers; he is a handsome, funny, living, breathing, and special young man.  So, why can't I just throw out the packet?

I can't because these tests no longer show progress, and that itself is data which sadly we need to keep.  Autism is autism. You can call it better/different/lighter names like PDD-NOS or HFA , but it doesn't change the individual.  Andrew was 3 when someone told us he might "lose the diagnosis", for she considered him so "high-functioning".  I still don't know what that term means.  In fact, it may as well be meaningless.

Will Andrew graduate from school?  Go to college?  Live on his own?  Fall in love and get married?  Have children?  I don't know.  I suspect his splinter skills in an area or two of academics will allow him to hold a job.  I don't think he'll ever care enough about emotions to want to fall in love, to feel comfort from another. 

I am not a patient person.  I peeked at the contents of the envelope, the report written in a strength-based fashion, as are all reports that talk about disabilities.  The team highlights the things Andrew can do (despite the fact he scores under the 1st percentile for nearly everything), mentioning them at the beginning and end.  The report talks about how polite he was and that he enjoyed talking about his bears and the weather.  Those are the good things.

I won't let scores define my son.  He is my little boy;  in many ways he's the center of my universe.  I will advocate for him and what he needs until I am blue in the face or until every hair on my head turns white (or falls out).  I don't blame anyone for autism.  I do wish we would have known earlier and intervened more intensely before he was 2.5.  I wish the stupid Early Intervention program hadn't screened him out at 16 months because one therapist thought she saw him mimic the word "duck" on a page.

Tomorrow, we'll venture outside (with the heatwave over, god-willing) and explore the Public Gardens or the Museum of Science.  Maybe we'll visit the State House so he can see where Mom used to work.  We'll have a "Mom and Andrew" day and hopefully have fun during it.  I will hug him when he's sad or overwhelmed and offer him bears for comfort.  I'll "talk" back to the bears when he makes them "talk" to me.  I'll do all this because I love him, because I accept him, and because I can't imagine putting him through the intensive medical treatments I know others do, trying to cure their kids, in an effort to get a "new and improved Andrew".  Gosh, I'm beyond thrilled he willingly takes a multi-vitamin :-)

I'll hold on to hope, too.  Peace, my friends.