Thursday, January 6, 2011

A Tough Mom Day

Nick has come so far in the past three, almost four, years since he was diagnosed with autism. He went from not being able to communicate at all, to communicating with PECS cards, to finally using words. He went from not seeing me at all to staring into my eyes. He went from not wanting to be with others at all to wanting to snuggle with me all the time. He's a different person than he was when he got diagnosed. He's in our world now instead of lost in his own.

And I'm so freakin' proud of him. If you've read this blog, you've seen it. Every little step is a giant triumph. My beautiful boy is struggling through something more daunting than I can fathom, and he's persevering. To be five years old and have to work so hard all the time, to have your mom carting you to therapists, to have other therapists showing up at your house . . . it's so much to ask of a child. But he does it. For about forty hours a week, he does it.

All the time I'm focusing on how far Nick's come rather than how far behind he is. Well, almost all the time. Every now and then something intrudes and reminds me of how far we have to go . . .

Today I got back the results of Nick's most recent speech evaluation. I was really looking forward to the numbers because I wanted to see quantified just how far I *knew* he'd come. On his last eval three years ago, most of his scores where in the 6-9 month range. That was when he was two. He's worked so hard and grown so much; I knew he'd jumped far beyond that. I just knew it.

I read the black letters on the blinding white screen:

Interaction-Attachment: 15-18 months
Pragmatics: 18-21 months
Gesture: 18-21 months
Play: 18-21 months
Language Expression: 12-15 months
Language Comprehension: 12-15 months

I know they are just numbers. I know. I know that numbers cannot accurately represent the awesomeness of my child. I know. But to see my almost six year old labeled as being at the level of a one year old . . .

I just sobbed. That's all I could do.

The last part of the report, though, was worse than those cruel numbers.

Nick's issues are too severe. The speech therapist doesn't want to take him on as a client because his autism is too severe.

God, I hate this town. I hate that I live somewhere where there is such a shortage of speech therapists that they can pick and choose who they want to work with, and they pick and choose the easy clients. I hate that the children who need therapy the most are unlikely to get it. It seems so unfair and cruel that a beautiful boy who is working so incredibly hard hasn't had a speech therapist for six months because of the shortage, and when we finally found someone who had a couple openings in her schedule, she didn't want to take him on because he was too much of a challenge.

It's a tough mom day today. I feel adrift, nothing to cling onto. I think the numbers, as hard as they were to read, would have been tolerable if I knew I could get speech services to help Nick work on his delays. It's just hard knowing that he's struggling so much . . . and there's no therapist who wants to step in and help him.

So I'll sob a little more today. And then tomorrow, the sun will rise again, and I'll put on my big pants and make a new plan for Nick. I'll keep him moving and growing; I promise him I will.