Sleeveless

Today Nick got to have two speech therapists instead of one. The guest therapist, who owns the clinic, came out of the room first. "He had a just phenomena session. He is so adorable--such a calm and peaceful spirit."

Laura, our regular SP, followed with Nick a moment later. "I can see why you say people fall in love with him. He's such a joy."

They were seeing the Nick I see, the Nick so many people have, unfortunately, missed out on.

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Last year, in the aftermath of the teacher-abuse incident, the school started sending home daily reports on Nick's day. The forms listed out what he ate, how he focused, when he went to the bathroom . . . and how he behaved. The school tracked every scream, every bite, every scratch, and every time he hurt himself with tick marks on the page. Every day the tick marks were sent home, with comments like "He threw himself to the floor and screamed for no reason" (grr, there is *always* a reason) or "Nick got very upset when we tried to bring him into the classroom and scratched an aide." Perhaps I would've scratched people when they tried to take me back into places where I'd been hurt, too.

But here are some of the notes from Nick's teacher this year:

8/12: "He was very happy and smiling."

8/16: "Good day today. He transitioned well."

8/17: "Good day! Nicholas transitioned very well."

8/18: "Nicholas had a great day today! He is really starting to understand the routine of the day. He is participating in calendar and has done well during math and reading."

8/22: "Nicholas had a great day today. He is doing great during transitions, is smiling more, and participating more as well."

8/23: "Nicholas had a good day today. Did well with transitions today :)"

8/24: "Nicholas had a really good day again today! Nicholas has been doing so well transitioning. He is participating every day at calendar and is doing work at math and writing time. He is still really enjoying tinker toys and playing in the sand."

8/25: "Nicholas had another great day today! He is talking more and seems very happy at school."

He seems very happy at school. That's a sentence I'd never seen, never thought was imaginable.

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The proof, though, is in the pudding . . . otherwise known as the squishy part of my arm. It's where Nick takes out all of his frustrations, all of his confusions, all of his fears. When the world has him freaking out, he needs an immediate outlet for all the tension inside, and that outlet is often in the form of an ungodly sharp pinch. My arms were a watercolor of purple, green, magenta, blue.

On the first day of the semester I prepped for it, as always. I pulled together an outfit that would've made Stacey and Clinton proud--fantastic black heels, stylish grey trousers with red and light grey pinstripes, a delightful ruffled red blouse, and of course, a jacket--a grey Anne Klein blazer that I got for under $20! As I drove to campus, I wondered about how often I'd have to take the blazer on and off to get through the day. I mean, my classrooms were in different buildings on campus, and I didn't think I'd want to wear a jacket outside in the 113-degree heat, and some of the classrooms have crappy AC . . .

I looked down to check the damage to see if it was mild enough that a little concealer could mask it if I had to go jacketless during a class, and I was shocked.

There wasn't a bruise. Anywhere.

Sometimes as parents our guts tell us exactly what we need to do for our children, and although something inside us knows, absolutely knows it's the best thing, our minds tend to come in with their sneaking suspicions--what if uprooting the boys is the wrong thing to do? what if this new city won't be as wonderful as I think it will be? But always, it seems, we find in the end that our gut was right all along.

Moving the boys to Phoenix is the best thing I've ever done for them. They are happy, successful, content in ways they never have been before. That's not to say that they don't have bad days--believe me, there have been a couple--but the good is so much better that it has ever been and the bad is dramatically less frequent.

Finally, the world gets to know the happy, sweet Nick I know . . . and I get to go sleeveless to work ;)

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.