In order not to hijack a thread, I decided to make a diary out of our recent experiences with Gus being tested to try to solve some of his challenges in school. I think several of us may be struggling with children who are difficult to parent, so hopefully anyone with experience, expertise, and sympathy can help us sort some of this out.
We had a meeting this week with four specialists, Gus’s teacher, the school director, and the general specialist (GS) who’s on staff. Over the last six weeks, Gus was tested for a variety of things. His teacher and the GS felt early in the school year that he was having more trouble than usual sitting still, focusing, following rules, and settling into the routine.
I was not surprised by some of this. Gus is impulsive and often noncompliant. He was observed last year in preschool for this, and it was concluded there wasn’t a need for intervention (observing him the first half hour of school vs. the last half hour showed a marked difference).
Some background: Gus was born at 28 weeks, but had no known developmental delays. Part of the problem with saying this is that even 15 years ago, the odds of a baby born this early surviving with no problems was extremely rare. There simple isn’t a large body of data to study, so we often feel now that Gus is past toddler stage, we’re flying on our own. He has a late July birthday and attended two years of part-time preschool at our public school. He has never been in daycare. We thought very long about starting him in kindergarten this year or holding him back, but he’s so smart that we didn’t feel right holding him back academically. His preschool teachers agreed we should send him.
He attends a German immersion charter school full-time. There are 22 in his class, and he has a marvelous teacher. He is nearly a year younger than some of the kids in his class. Overall, we feel he enjoys school. His interest in art has totally spiked, he talks frequently about other friends in his class, likes to play with first graders at recess, and loves his teachers.
The meeting ended up being two hours long as we went through a 33-page report. They were very thorough! And they were helpful & kind as well. But after thinking about it a while, I still don’t know what to make of much of it, and worse, what to do. We and his teacher were also interviewed, and our answers were incorporated into the report.
He was evaluated by a speech pathologist, an occupational therapist, a child psychologist, and an autism consultant. If any of you know or are interested in the particular tests, I can tell you. The speech pathologist reported that he was average to above average in her tests (expressive, receptive, & pragmatic language), even in a test that’s usually not done until age six, so his results were mixed in there.
The psychologist basically said he is scary smart, mostly in reading, but also testing above average in math. Both her tests & the teacher’s report put him way down on social skills, much further down than we reported. The psychologist was very clear though that it was her opinion we couldn’t discount his prematurity, or the fact that he is quite a bit younger than his peers. But she felt that since so much of his intellect was in the superior range, the fact that he was average in some areas was concerning because the gap was so wide.
The OT reported major deficiencies in her motor coordination, much more than we would’ve ever thought. One test had him at the age equivalent of less than three years old. He’s definitely not the sportiest kid in the world, but it’s not something we’ve encouraged, and he loves to move (possibly another problem). He had nine months of physical therapy and six months in braces around age three for tippy-toe walking that was starting to affect his foot movement, but was declared cured. We’ve seen huge improvements in his drawing & writing ability since school started, but even his fine motor skills tested low.
The autism one was hard. His teacher reported behaviors with far more frequency than we did, almost across the board. So did the consultant. As an example, let’s say a score of 80 means the likelihood of being on the spectrum is high. We scored him around 55; they scored him at 78 or 79.
At the end, the recommendation was that he did not score “bad” enough in any area to qualify for school intervention. The psychologist was not ready to look at ADHD (Gus’s ped agrees), although the OT & autism consultant seemed like they wanted to go that way. They all mentioned frustration that Gus didn’t seem to fit into any strong category where they could recommend a solid course of action. One thing they did agree on was the possiblity of a sensory integration (SI) disorder rather than the autism spectrum. The OT suggested getting him evaluated again by his ped, showing her the test results, & seeing if she would recommend outside SI therapy as a medical necessity so our insurance might possibly pay for it. The consultant commented that SI problems often are misdiagnosed as autism, so she felt that was the right way to go as well.
I’m sorry this is getting long, but it’s helping me process to write it out, and I feel so out of my element here. A big part of me wonders if I even know my own kid. Am I in denial about his behaviors? If anything can be done to put him on a good path, we’re going to do it. But maybe I’m just old-school enough to be wondering can’t we leave the kid alone to grow up a bit? Or do I not know enough about how kids are supposed to operate to make a judgement?
Here are some points that were made, for example, that leave me wondering:
-He was asked “What would if your teacher was sick?” He first answered “She won’t be able to come to school.” That was good. Then he added, “They might cancel school for a week.” That was inappropriate. I thought, is that so bad? He doesn’t really know. Older kids would know it wouldn’t happen, but he has a very vivid imagination. He might have been talking about what he wish would happen.
-He crawls around a lot while listening to a story. I understand why that would be distracting and the teacher would like that behavior to stop. But I think often he is still listening to the story. Moving may help him process it (which is chalked up to SI problems). He can still answer questions about somethign that was being said or done while he was moving.
-He doesn’t know when he’s being ridiculed or made fun of. First off, he doesn’t exactly have a lot of experience with this. Also, just this week, he told me he’d been filling his water bottle and a big kid told him Backyardigans are for babies. I asked “What did you say then?” He shrugged and said, “I didn’t say anything.” It didn’t bother him. Isn’t that good…not being upset if someone says something you know is kind of ridiculous. He brought it up, so I’m thinking he knew the kid was saying something unkind. But it didn’t upset him.
And this is actually the short version of what happened! I feel sorry for his teacher; she was probably hoping she’d get some extra support but all she got was sorry, the guidelines don’t let us fit him in. But as I said, she is wonderful & we’re fully committed to working with her to reinforce whatever she’s doing in school. But other than exploring the SI therapy, we really don’t know whre to go. I’m not necessarily a fan of normal, but I think I’d like my kid to be just normal enough that it’s not so concerning. Thanks so much for your attention & thoughts.