Friday, May 13, 2011

What I Did for Love

My son is autistic.  

But he’s not autistic enough apparently.

In order to understand the background, you’d need to sit down and put your feet up.  There’s quite a back-story.  I’ll get to it, eventually- I think (see the whole autism part…I don’t have a ton of free time.  But hopefully writing will be an outlet for me)

But for today, him not being autistic enough is the point of my post. 

He’s enrolled in a local pre-school affiliated with the regionalized public school district.  He’s already on an IEP, because he’s hearing impaired (yeah…try making your hearing impaired kiddo make eye contact so you know he heard you when he’s autistic.  Super fun!)  Maybe a year ago I started getting really worried.  He was teetering on the edge of neural-typical, and I knew it.  But see the long story part, and you might understand why it took me until February 2011 to have an official diagnosis.   And then I got a second opinion May 2011.  Yep, definitely high functioning autistic.  

But the school- they don’t think so.  In fact, he’s managed to pass every evaluation they have given him.   
Except that when did Special Education directors of a financially strapped poor performing school district start to be able to diagnose autism? 

We moved to Massachusetts following a fairly nasty divorce and custody battle.  I fought like a tiger (or Warrior Mom as I’ve heard us called…we moms of special ed kids who try to move heaven and earth to protect our babies).  I won- and I won the right to relocate my son from Connecticut.  It was a hard fought battle and it was not without its scars left on us all, including my son.  But I did it for him.  I did it because I was 100% sure that it was the best thing for him to be far away from a father who refused to acknowledge that anything was wrong with his developmentally delayed child.  I did it because I knew I was going to need help.  That I was going to need someplace to just stop for a while…someplace where I could save up some extra cash to start our lives together again, just my baby and me.  So, despite REALLY not wanting to, I moved in with my mom. 

But turns out, it wasn’t such a great choice after all.  Turns out the school district up here sucks.  BADLY.   Very bad choice on my part.  I called them before I even attempted this relocation dispute, and they assured me they could handle my son’s current hearing impaired IEP.  Hmmm, not so much.  Took 4 months for his assistive technology to arrive and become part of his school use.  4 months.  Without hearing at school.  And yet I was told pretty much constantly that he could “hear just fine…he doesn’t seem like he has hearing loss”.   And when I told them I was having him evaluated for autism, someone actually laughed.  I’m not kidding.  The coordinator of the special-ed preschool sat in that Team meeting and LAUGHED TO MY FACE. 

Yeah, they are a super stellar place.

Last night we received yet another evaluation from this school that said while he falls right on the bottom range of normal (he was given an OT evaluation that crazy simplified says 8-12 is normal, and he got a 7 so they were not planning on offering him any services for Occupational Therapy) they are perfectly happy to accept low range of normal.  And if my son was of lower intelligence, I think I’d accept that the low range of normal is good enough too.  But he’s not.  He’s smart.  He’s BORED, and restless, and I’m getting the brunt of the behavior because he holds himself together for the 5 hours a week he’s in this school (and they think they know him better than I???) 

I made a phone call that I can’t believe.  I called my ex and asked him to look into enrolling my son in the public school in his town in Connecticut.   As in, my son moves back with him. 

Because I will do anything for my son.  And if that means sending him to a place with a better school district, then so be it.   I’ll do what it takes to find a job back down there again, and I’ll move back to the town, and he’ll come live with  me, but in the interim, he might live with his dad. 

Nothing is final yet.  But still.  I feel like a failure on many levels.  And I feel like I’m doing my absolute best for my son on many levels.  But mostly, I just feel really tired. So begins the Tired Mama blog! 

2 comments:

  1. These decisions are so damn hard - there's never an unimpeachable answer, ever. But it sounds like you're doing everything possible to get your boy what he needs. I have no doubt that you will. And hopefully blogging gives YOU a little of what you need too. Welcome to the neighborhood ;)

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  2. Thanks Jess...I'm kind of excited about having an outlet. I used to blog about my EMS experiences, and found the blogging community so welcoming. I see the awesome support you, and others are getting online, and I'm just thrilled to be part of the group!

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