Friday, March 23, 2007

Spectrum or 3?

As much progress as Thane has made over the past several months, he still fits the diagnosis of pervasive developmental disorder not otherwise specified. Thane has shown a ton of progress with diet modifications for celiac disease (gluten intolerance), and IgE allergies to wheat, milk and eggs. While I see all this progress, I don’t see it as the cure some people tout. It’s more like a tool that really helps open the doors to learning and developing, but it doesn’t eliminate all the behaviors. He still needs therapy to help him deal with his world more effectively. And can you be cured if eating the wrong foods sets you back for a week?

But since we all have sensitivities and quirks, the flip side is “what’s so different about him anyway?” Lots of us get side-lined by allergies and intolerances too.

I have had several conversations with other moms about how can you tell what is normal and what is a problem? Right now I feel like we’ve been having kind of an “autistic week” – well, make that two weeks. So I thought I would write about some of these behaviors.

Thane has been doing a lot of coloring. He gets out the markers, and lines them up on the table in the order of the colors of the rainbow. If he doesn’t find all the right markers, he’ll put a crayon out to hold that color’s space. Then he will draw with each color, carefully placing it back in line when he is done.

He does a lot of scripting – repeating stock phrases. He was rather wound up and was running in circles around a chair in the living room (stimming). He fell, and I said “Are you okay?” He replied “Yes.” Then he went back to running. The next time he fell, he stood up, said “Are you okay?” pause “Yes.” He ran some more and each time he fell he asked and answered the question. That routine has continued for days now, including the script.

At school, I have to pull to a side door where no other cars park. Thane wants to run around the minivan once before going to the door. Then he needs to try the door, say “Help! I stuck!” and have me open it. When I opened the door before this – I forgot the routine – he melted and threw himself on the ground screaming “No open door. No open.” We went back out, did the routine, and then he ran down the hall into class saying “Goodbye Mama! I’ll see you later!”

When I pick up Thane, I have to wait at the end of the hallway so he can run to me. He comes running to give me a hug with the biggest smile on his face. Then he asks “Where’s backpack? Where did it go?” We pretend to look under the bench, behind the bench, and then he says “Oh there it is! Look! Over there!” and then he runs to his hook and gets it down. There’s a routine there too. Then he wants to run around the minivan three times before climbing in.

Yesterday he didn’t wake up well from a nap and he cried awhile. He climbed into my arms and we sat together in silence for an hour. I had to hold him a certain way – he would rearrange my hand if I moved it. I understand that with his sensory issues, other places may hurt or tickle, but my wrist is pretty sore now. At the same time, it was nice just cuddling with him!

We’ve had much more trouble than usual this week with the order of things. Like my hand having to be in a specific place, I’ve been told what colors to draw with, where to draw what, and mixing it up at all has met with resistance. The good thing is that he usually recovers pretty quickly, but there is something that irks me about having to erase a circle on the upper lefthand corner only to replace it when he deems appropriate!

That whole “choose your battles” doesn’t work well here anymore. I’m suppose to try to interrupt his routines some according to the therapists, so I feel like we’re having little battles over things that really make very little sense to me. Last night it was juice. I got down a clear cup and poured some juice in it. Thane was angry about the color of the cup, so he was going to pour the juice out into the sink. I grabbed it from him because, to me, that is like pouring money down the drain. I just can’t do that. So I opted for the fit and keeping the juice. I put it back in the bottle and put it away. Thane didn’t get a drink until he calmed down, but he did get it in a red cup. In the end, I really only saved myself a few ounces of apple juice and had to put up with a tantrum because I had the audacity not to let him chuck it into the sink. It’s amazing how these things become so mentally exhausting!

We’re also at a stage where he wants to take several baths in a day. If he has a bowel movement, he almost always wants a bath afterward. On the one hand, he has such an amazing ability to get dirty, all these baths aren’t such a bad thing. On the other hand, baths require constant supervision in a small room where there is much of anything interesting for me to do. I have a couple of friends who don’t mind the interrupted conversation, and sometimes there is some laundry to fold, but overall it gets a bit tedious. I would rate it right up there with doing the dishes.

I’m positive lots of parents of normally developing children can see some of these behaviors in their own children . . . but many disorders are taking normal behaviors to an extreme. And Thane is only minimally on the spectrum.

Three seems to be a very difficult age for boys. I remember that with Braeden too, and I know a number of parents who say similar things. Those terrible twos were nothing compared to boys at age three. They have such a combination of energy, lack of fear, and desire to test anything and everything in their world – to mom’s total exhaustion! While there have been bumps in the road with Braeden in the years since that age, it hasn’t been the ongoing mental exhaustion. He can be rather intense, but overall he is a really wonderful, helpful, and well-behaved kid. I think maybe part of my problem is I am just feeling too old to go through having a 3-year-old boy again.

No comments: