Dancing on the edge of the spectrum

I know that the label won't change who he is. He's the same boy today as he was before we started down this path. I know this intellectually. I've been here before. But I can't help but feel like something has been taken away from him. Maybe it's because I don't have that sense of possibility and relief that I had when Firstborn was diagnosed.

Before Firstborn was diagnosed, I felt like the worst mother in the world because he couldn't play well in playgroups, wasn't socializing right, and just didn't seem to be the normal, happy child that everyone else had. The label was the solution. It answered my questions. It helped other adults understand that he wasn't a bad kid. It helped them understand how to work with him and what to expect from him.

For Lastborn, it's different. While he leaves other adults scratching their heads sometimes, it's not all the time (except for his classroom teachers). He doesn't have the meltdowns that his brother had. He's a seeker, not a defensive, so he finds his world much easier to take. I thought that would make his life easier. In fact, I've been looking for signs that he was typically developing since he was a baby. I remember watching him climb onto a swing at 2.5 and, after watching the other toddlers for a minute, just pump his little legs and get that swing going; no hours of coaching and encouraging by mom to get him to understand the body movements that would make him glide through the air. It wasn't the 4-year process that Firstborn went through. And so, for so long, I didn't need solutions or answers.

He was the only kid to run into preschool the first day, happy to be away from his mom at last and facing his new independent life just like big brother.

But that has all changed. He hates school. He struggles. He acts out in very small and subtle ways. His teachers and the staff don't really know the funny, interesting boy who chooses big words and loves puns. In first grade, he would come home and cry over almost anything. The teacher was convinced that he had ADHD and asked us to take him to a psychologist. I tried to explain to her that she was stressing him out, that he was very unhappy and he was not exhibiting any ADHD behaviors at home.

Then we moved to Ohio and things were so much better. Smaller classes, less pressure to pass an inappropriate test, more understanding of learning differences and scaling of work to the child's ability. He did great. He showed so much promise in so many areas, excelling in some. At the end of 2nd grade, he was showing signs of faltering in Math. I put him in Kumon for the summer and he did very well - daily 5 to 10 minute drills on his math facts - perfect. He caught up and felt like he was actually good at math. But by the end of 3rd grade, his teacher was worried again. Poor organizational skills, very poor handwriting, problems sitting still and attending in class, problems in math again, still can't talk to teachers, won't ask for help, difficulty connecting with peers, all of these problems were adding up to more than just slow development. So we went through the process of having him tested in the school. They tested everything; intelligence, behavior, achievement, motor skills. He came out "of concern" in many areas but none that could create a diagnosis. But by then, I had done some research into non-verbal learning differences (NVLD) and it seemed like the best fit for him. The staff agreed, but they weren't willing to say it was a clear diagnosis. So we decided to go for another year and see how he did.

He's not doing any better. He's slipping in math again, and having a hard time keeping up with the transitions in the classroom and the organizational skills needed for 4th grade. He has no friends in his class and is very reluctant to reach out to other kids. He's even a bit defensive and misreads positive encounters as negative ones.

The school asked us to bring him to a psychologist to see what could be done about his behavioral and emotional issues. I didn't know this would turn into an assessment. She did a behavioral assessment. It doesn't look like ADHD which makes me very happy. She looked at his scores from last spring's assessment and agreed with the staff that he was hard to pinpoint, but felt that the scores that were "of concern" were far more serious than the school had said. She heartily agreed with me that he has NVLD and wants him to visit with a specialist for a diagnosis.

We never got this far with Firstborn. The Massachusetts schools never supported us and in the end, he never needed a formal diagnosis. It would have been nice for him to have an IEP in the early years because I could have avoided some of the teacher conflicts we had and his self esteem would have lasted a bit longer, but in the end, he's fine.

Now, with Lastborn, I thought he would never need an IEP and he's ending up getting one.

Part of me is just wondering, again? I mean really. Again? Isn't it enough to go through this with one kid? Of the one-in-90 kids they are now saying are somewhere on the autistic spectrum, we have 2 out of two dancing on the edge.

Sigh.

I wonder what it would be like to raise a typically developing kid? Nah. Boring.