Right on the edge

Howdy, friends.

It’s taken me a day or two to think about what I want to say about Jack’s recent evaluation. We had it on Tuesday — to check to see if he is on the autism spectrum.

It was a long day of questions with various therapists and speech pathologists (aside: If I went back to school for a second career, it would 100 percent be as a speech therapist. That job is very cool.), audiologists, you name it. All in all, it went well.

Jack was really great for all of it, and, more importantly to me, he showed his best self, and his most quirky self. I feel like everyone observing got to see a true picture of my awesome kiddo.

At the end, they told us that Jack is right on the edge of the cutoff to be on the autism spectrum. He isn’t on it, but he’s basically rubbing up against it. To me, that’s mixed news. He has some definite quirks — talking to himself, staring into space, difficulty in social situations and some poor motor skills. But he also is hyper verbal and pretty smart. And charming, of course.

The suggestions were to get his hearing retested (he failed) and enroll him in a social skills class so he can learn the art of conversation and how to make friends. And then to retest him for everything in a year to see if it all improves.

The doctor said, just because you don’t win a gold medal in the 100-meter dash, you aren’t diagnosed with congenital slowness.

It feels good that he doesn’t have a label, I guess. At the same time, it feels like a non-answer.

After our appointment, I took Jack out for ice cream and then we picked up Viv and went to the park.

Jack was playing in the sand, and a little girl came up to the nearby swings. I pointed her out, because he wouldn’t notice someone arrived, and asked him if he wanted to go play with her. So we walked over and, after a prompt, he asked her name. She was friendly and wanted him to twirl on the swings with her.

Well, Jack struggles to imitate someone, so I helped him on his belly on the swing, and they had fun with that for a few minutes. Then she wanted to go to the slides, and he said he did, too.

She ran over, and as he tried to follow, he became completely distracted by this big electrical box thing, and spent several minutes messing with it.

Meanwhile, Viv ran over and was engaging with the little girl, who was about 3. I finally pried him away from the box and he went over and spent the next 10 minutes fretting because there was sand in his shoes.

Finally I said, “OK, play barefoot,” and he climbed the slide and then just kind of played alone.

I won’t lie — it felt heartbreaking. I felt like I just watched all his quirks flash before me — solitary play, inability to make friends, preoccupation with things like fans or air conditioners or this electrical box. I felt sad and overwhelmed and frustrated.

Jack didn’t seem sad, but he’s young. In a few years, he is going to realize that he isn’t like the other kids and I am so afraid his feelings will be hurt when he struggles to maintain friendships. Already the two kids in his old daycare room he talked about most were a kid who hit him and a kid who bit him.

I left the playground feeling upset, and actually finally cracked at work yesterday and cried in front of a coworker like a moron.

But then last night I read bout 200 pages of this book, “The Complete Guide to Asperger’s Syndrome, linked here. It was interesting. Especially when it talked about holding off on a diagnosis for a young child to see if they outgrow some of the quirks.

That made me feel better about the suggestions we got Tuesday. It also reminded me that if he were on the spectrum, it would be by like one point. So one point either way doesn’t matter — he still would need the same sort of interventions we’re talking about.

I think the social group for Jack is our best bet right now — he needs to learn how to do that to make and keep friends. And we’ll stick with gymnastics this fall and probably switch to physical therapy in the new year. The therapists remarked on how smart he is, but said, “You still need to throw a ball on the playground.” And that’s true — he needs to learn that.

The hardest part is that working with Jack on keeping a conversation going, or staying on task, is so exhausting for both of us, that sometimes I’m sure I take the easy way out and let him just go play. I feel like I’m failing him when I need to be human and not some crazy Super Mom Therapist.

I felt really good that he’s been involving Viv more in his play and inviting her to play pretend games with him. Then I read that kids can interact one way with their siblings or parents, but it doesn’t translate to their peers, so shouldn’t really be considered. And when our daycare provider filled out his information, they checked that he “always” plays alone, “never” joins the group, etc. (Which, as an aside, it would have been nice if anyone had mentioned that to me, like, say, a year ago.)

And then, of course, we all have our own baggage. I have an eye problem that wasn’t diagnosed until it was too late to fix it. I’m the youngest of four kids — no one ever looked at me. OK, not true, but you know what I mean. And now I can’t fix it — unless I want to risk a 50 percent chance of irreversible double vision. So instead I just am very self-conscious of it, never wear contacts and hate any photo that involves me looking directly into a camera.

With Jack, the team stressed that early intervention makes the most difference. So now I feel this timetable pressure — I don’t want to regret not making moves now, like my parents say they regret not noticing my vision issues earlier. Of course I forgive them — it’s just not a big deal. But I don’t want to feel that way with Jack.

He’s a great kid. We just need to work to make sure he can develop the skills so others can see how wonderful he is.

Vehicle heaven.

So here we are. One of my favorite books ends with, “I don’t know if this is a happy ending, but here we are, let loose in open fields.”

And that’s exactly where we are.

Happy running.

 

 

 

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This entry was posted in Asperger's Syndrome, autism, Jack. Bookmark the permalink.

2 Responses to Right on the edge

  1. caffieneplease says:

    He sounds a lot like my son,. My son is getting tested next week for asd. You are so smart to be aware of all this. I was so naive when my son was having his difficulties in preschool. Thank you for sharing.

  2. You are a wonderful mother, Jacqueline. Regardless of how things go for Jack, the most important thing you can do for him you’ve already done: Love him just the way he is.

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