Wednesday, January 12, 2011

Over-Achieving All the Expectations






Joey, Age 5


It's amazing how far you can come in nine years.  Nine years - I know.  It sounds like a very long time.  But for me, I look back at what we were told when Joey was age three and what my amazing kid is now accomplishing.  A kid who I was told had an I.Q. of 62 and probably would never be in a regular classroom or speak is now a mainstreamed sixth grader with almost straight A's, placed in the advanced (yes, that's advanced) math class, and on the math team.  62?  I highly doubt it.

Every Tuesday afternoon, we get our "Edline" report online, which details how our child is doing as of that week in school.  While we struggle to get our eighth grader to do his work and I am constantly having to nag him about missing assignments that show up on that report (something I also had to do with our now 19 year old son who is a freshman in college and finally figured it out), Joey consistently has all of his work completed and at last check, he had six A's and a B+ halfway through the second quarter of the school year.  This kid is on a roll.  Have I mentioned his school's team won the first math meet this year?  Joey's the youngest kid on the team.

Autism is a word that really scares people.  I was so upset by the initial diagnosis that I took Joey down to UVA and saw a neurologist there.  Also autism.  Another neurologist in Northern Virginia, who observed Joey bouncing around his office for several minutes, looked at me with sympathy (and I swear, pity) and said, "He's autistic. You didn't do anything wrong.  There's no cure."  And some other things I don't remember because I was too busy being devastated.  After three separate people with advanced degrees tell you something's true, you've probably got to believe it.  So I went home and sobbed about the 62 I.Q. and wondered if I would have an adult son who would still be wearing diapers and not talking.

Joey gave us a scare.  He didn't talk until he was four years old and for a long time, I thought he was going to be non-verbal and never say the words every mother needs to hear:  I love you, Mom.  I wasn't sure if he would understand emotion, be able to read, have empathy for other human beings.  Joey knocks me flat every day when I realize that while yes, he has autism, he is the most amazing kid and the way he looks at things, while not the same as other children, is a quirky, unique, Joey way of looking at things.  I can really appreciate my life a lot more because I have Joey in mine.

What autism has done to my child is make him very literal.  He's obsessive about things.  He takes you at your word and you'd better not make a promise you don't intend to keep.  He has trouble processing things like multiple instructions, leading to the need to break things down step by step for him.  Sometimes you have to walk through a task with him.  He's got sensory integrative dysfunction, an associated disorder that goes along with autism, and what it means for him is that his diet is limited to cheese pizza and peanut butter toast.  There is no wavering from his diet.  He is literally afraid of trying new foods.  When I ask him to, you can see a shiver run all the way through him.

What autism has done for my child is to make him quirky, funny, verbal, rational, logical, willing to obey the rules and suffer the consequences if he doesn't, loving, and still cuddly at the age of twelve.  And it has not taken away that precious gift of hearing, "I love you, Mom."  Hearing those words from Joey is like winning the lottery and I get to hear them a lot.  Oh, and he loves to read and soaks up knowledge like a sponge.

I sometimes wonder now what the results would be if they gave him an I.Q. test today.  Obviously, any I.Q. test given to a non-verbal child should be immediately deemed "invalid," as the child has to be able to respond to the questions.  When Joey was tested, he was non-verbal.  Of course his score was low.  Now he can rattle off details to things that amaze me and his memory is astounding.  I wonder how he remembers the things he does and I wonder a lot how he thinks.  I would pay a lot of money to get inside his head for five minutes and poke around, just to understand a little more about how his amazing, bright, inquisitive little mind works.  Unfortunately, I don't have that ability, so I content myself with glimpses into his world through the things he says and the actions he takes.

I have no idea what the future holds for my youngest child, but I think I can relax and know that since he has exceeded every expectation ever made for him, there is no limit to what he can do.  Autism is not a death sentence and it is not, in many ways, a bad thing.  It makes him fun to be around, like when you watch him suddenly get the joke or the way he giggled for fifteen minutes after Justin hid around the corner from him and jumped out at him and said "boo!" the other day.  Joey is just Joey.

Sometimes I wonder if maybe autism isn't an evolutionary development. Why are we looking for a "cure" for this?  Looking for a "cure" implies that there is a disease.  In Joey, I don't see autism as a disease or a stumbling block or something that needs to be fixed.  He needs a little more help negotiating life's social scene than a "neurotypical" child, but don't a lot of us suffer from intense social phobias and shyness at parties?  How many anti-anxiety prescriptions do you suppose are written every year for just this reason?  From what my eighth grader tells me, all the kids that he sees interacting with Joey seem to like him.  And that, in essence, is Joey.  Different?  Yes.  Autistic?  Yes.  Is that a problem?  Not to me.  I think Joey is going to become something fantastic someday because of his autism.  It has a way of making him think "outside the box" (a term I can't stand, but which aptly applies here) that makes me believe that Joey could be a rocket scientist if he wants to be.

Sometimes I tell Joey, "I love you, Joey" just to hear those magic words back.  "I love you too, Mom."  Words the "experts" told me he would probably never say.  Words he says often and with a smile and a quick duck of his head.  If autism is "wrong," then I don't want to be "right".

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