Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation.
Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – someone gives him a task, then if he doesn’t do it in the time period they want, or how they want, or whatever… they take it away! It’s not like at our house, where new toys can sit for weeks before he will even notice them.
They started off rather poorly by making us wait in the lobby about 10 minutes, although we used that time to re-read the little “here’s what’s going to happen” booklet they had sent. The J-man LOVED that book, and especially liked signing “nice” and “nurse” – he would crack up laughing at those words. (BTW, we never actually saw that nice nurse. Maybe it would have helped.) We all went into a little room, and a lady (we’ll call her Connie Chung* because I don’t remember her name) tried to get the J-man to interact with her, while the rest of the adults talked at another table. That didn’t really happen… until everyone else left, and it was just me, the J-man, and Connie. Unfortunately for Connie, she started off with a sorting game of blocks and spoons.
You could just see the J-man light up – THERE ARE BLOCKS HERE!
He spent the entire rest of that session trying to get the blocks. The spoon and block sorting went as follows: he built block towers, and Connie tried to get him to sort. She handed him a spoon, and he put it in the correct box, but when she tried handing him another, he grabbed the handful from her, put them all in the correct box… and went back to building with the blocks. When Connie tried moving to a different task, she ended up putting the blocks away into her little toolkit. The J-man calmly walked around the table, opened her toolkit, and took out the blocks! We had to draw a little schedule, with blocks as the “next activity” to get him to do ANY other tasks. Connie tried getting him to match objects with a picture in a book, but when I told her he did better with words, she tried getting him to match letters… but the letters weren’t objects, it was just “here’s an L… now which one of these looks like that?” It didn’t work, and she wouldn’t move on to WORDS because he wouldn’t do the letters.
Eventually… Connie gave up. Really. Just decided to give up. That right there really described the tone of the whole evaluation to me.
We were sent back to the lobby (there was a playroom, but it was such a disaster area – and I don’t say that lightly considering our house – that the J-man wouldn’t even go in the door!) to wait again, while they set up the room for the other evaluation. This was one specifically for autistic kids. The J-man played with some of their toys, then decided to stack them. Another lady was doing this part of the evaluation. We’ll call her Diane Sawyer (again, no idea what her name really was). Diane did a little better by not having blocks out, but the FUNNIEST part was when she asked me if the J-man would “watch someone do something, then do it himself.” I said, “you mean, imitate?” “Yes,” said Diane. “No, he doesn’t imitate.” She seemed concerned by that. I thought it was a VERY COMMON PART OF AUTISM, but maybe not?
It didn’t take long for the J-man to get frustrated with her, and he asked me for a snack (and maybe a break from Diane!). I briefly mentioned the Sacred Six, and got out his food card. It took a good bit of explaining before the light clicked on, and Diane realized that REALLY, this is only the food he eats. The Sacred Six. They wanted to get him to ask for help, so put 2 of his snacks into containers. He ate some Veggie Straws, then Diane closed the container. He tried to open it, then took it to her to open, but because he didn’t verbalize “help” she refused to open it. So now, you’ve got a hungry stressed out kid, and you’re withholding food. Hello tantrum!
I eventually got him calmed enough to drink, and then he ate more Veggie Straws. Diane asked if I thought he would show them anything… and I said, “Well, he loves to build with blocks.” We had brought his own personal alphabet blocks with us, and he played with them. I pointed out the matching he does with them (not only does he stack blocks with the same letter together, he stacks them in the same orientation, so all the sides match up), and the engineering it takes to build a stack of blocks that high… but again, I felt that Diane, like Connie, had just given up. The J-man sure had.
Tim was still doing the parent questionnaire when we finished at 4PM – we had been there for three hours at that point. Our portion included taking pictures of the J-man’s hands, feet, ears, and face, sometimes with a ruler held up to compare to. Eventually that set him off again, and we ended up with just the J-man and me, sitting in the eval room on the floor. He asked for “pillows” and we cuddled together on the industrial-carpeted floor. I knew he was really stressed, but not quite how much… until he went to sleep. The ONLY time the J-man sleeps during the day is when he is SO overwhelmed that he has to get away, and he has realized that people will leave him alone when he is sleeping.
There was still more stuff to be done, and it was unpleasant at best… but we finished, and left. Thank god.
Tim and I hope that our experiences with studies, and the data collected, may actually mean something someday. We’ll probably enroll the J-man in more studies (ones that involve only observation/evaluation, not so much with the “take this miracle drug” ones). But, not anytime soon. Because at the end of the day I felt emotionally exhausted, and like a bad parent because a) my son was obviously so upset, and b) the study people seemed to think I was lying when I said he COULD do some of their tasks but just wouldn’t in that environment. So that was my part. I also didn’t want to put the J-man through anything like that again. He was overwhelmed by the lack of structure, and kept saying “I want” but then didn’t know how to express that what he wanted was OUT OF THERE.
Maybe that’s something we need to include in his IEP next time.
*One of our “code words” phrases is, when we can’t remember a woman’s name and can’t get past it, “Just call her Connie Chung and move on.” We’re showing our age here a little bit. Do people still know who Connie Chung is?