I Wish.

Louie has a diagnosis for autism as well as Williams syndrome.  We don't know for sure that he has autism because there has been some disagreement among doctors.  But the diagnosis has allowed us more services through our early intervention program.  It's interesting because sometimes it feels more like Louie has autism than Williams syndrome.  I thought the dual diagnosis would help us receive more services in the public school system as well.  But that is yet to be seen.

Louie's first IEP meeting was held yesterday.  And so it begins.  I had hoped for more.  For more understanding and less resistance.  Louie deserves extended school year services.  He meets all the criteria.  They denied my request, ignored my proof of regression and wouldn't provide their denial to me in writing.  So now here I am.  Wondering and wishing and not knowing.

I wish I didn't have to do this whole IEP, special education, therapy, make-sure-everything-is-documented-or-it-wasn't-said thing.  I wish it were simpler and our children were given exactly what the law says they should get.  Sounds simple but its complexities already make my head fuzzy.  I don't know what to fight for and what to let slide.  I don't want to start my relationship with the school off on a sour note but I want Louie to have every opportunity available to him. Louie simply doesn't have the opportunities most of us are given just by being born. Opportunities to start, to fail, to begin again, to make choices, to drive our cars fast on a summer night with all the windows down.  

I sat on my patio last night and realized again what it means to be an advocate.  It's not a matter of being right or who's pocket the money comes out of or revenge for the school's lack of, ummm...charisma. It's a matter of human rights.  It's a matter of society's responsibility to care for those who cannot care for themselves.   It's a matter of taking the strengths that Louie has and making them mean something.  It's up to us to shape those strengths and mold them into assets that will give Louie opportunity.  Isn't that what's it's about?  Opportunity?  Hope?  A future?

I want Louie to do the things that other 3 years olds are doing.  But he isn't and he won't.  I still sometimes find myself thinking "Well, when he learns to fill-in-the-blank, then he will be close to catching up."  And then gravity takes hold and the weight of the truth bears down on my disillusion.  He won't catch up.  He will never catch up.  So our goals and dreams for Louie need to be adjusted. 

What I want is for him to learn life skills.  The skills that come naturally to most of us; the ability to feed ourselves, brush our teeth, get dressed, shave, balance a checkbook.  I want Louie to be able to do these things.  Maybe this is obvious and something most other moms of kids with special needs have already realized but it just crystallized for me.  My goal for Louie is that he is able to have some sort of independence as an adult.  

Louie may not ever talk.  This has only been a passing thought in the past, quickly dismissed and ordered out, but this time it has taken a seat.  It's a real possibility.  I am not trying to be dramatic or negative.  Nor am I overreacting.  I just know too much now.  Louie's vocalizations have not really changed since he began vocalizing at 6 months or so.  He rarely babbles any consonents and his expressive communication, including gestures and signing, is little to none. There is a window of time for a child to learn to talk.  After it closes, it's rare speech will develop.  Especially conversational speech.  That window is not yet closed for Louie.  And in my mind, the window will never close completely.  But Louie may never talk and I must begin to prepare myself for that possibility.  

Ace, nine months, has almost surpassed Louie in every developmental area.  I guess that's why I have a hard time with the public school saying no to our requests.  No to a 3 year old who doesn't walk independently, talk or possess any self-help skills.  What more do they want?  I can't imagine.  I'm not asking for the world from them.  But I am asking for the world for Louie. Does that make sense?

I wish, I wish, I wish right now.  I wish I knew someone who has been exactly where I am. Someone who sat on their patio and wondered why the line between compromise and complacency is such a faint one.  I wish I had my degree in special education and law.  I wish Louie would say "mama."  I wish I knew how to prepare to raise a child who doesn't speak. 

Most of all, I wish Louie could run in the school office and say "Hey, principal!  I don't need your so-called stinkin' special education!" and then he would bound quickly out the door, out to the playground where he would kick the ball causing a cloud of dust to hazily rise up into the afternoon light, the rest of the kids, his friends, would laugh and run toward the rolling ball.  I wish that's what Louie could do.