Finding Our Place, Successes and Setbacks in the School System. Chapter 9, "Blindsided When Seeking Accommodations."

I'm Brielle. I am the mom of Dalton, who is now 15 years old. He was diagnosed at seven. Dalton was born when I was 41 and my husband was 45. He remains our one and only. So my husband and I were both older first-time parents. Given that, we were doing everything literally by the book, or so we thought.

As we were going along, we realized that there were certain milestones he was ahead in and certain milestones he was behind in. I'm a working mom. And my husband has a full-time occupation as well. One thing we noticed when picking him up at the end of the day from preschool was that instead of playing with other kids, he would run around in circles, pacing, and playing alone. There wasn't any parallel play.

So I had a hunch based upon a friend of mine who has twin boys with Asperger's that he might as well. So at three years old, we brought him in for the whole diagnosis process. It was days of forms and observations. At the end, the developmental pediatrician said, he's just an odd child. I was angry and a little appalled because I felt as though that was an inappropriate and unprofessional way to deal with our concerns. I knew in my heart that he had Asperger's.

As he moved from preschool to kindergarten, we put him in an accelerated focus program through the public school system. But there were certain things he needed in the classroom that he wasn't getting. So we sought an IEP. The school psychologist did an analysis and said he had ADHD. But again, I knew there was more to it.

When he was seven, the insurance allowed us to do a rediagnosis. I was a little hesitant. I thought, what's the point in being labeled? We ended up going through four different developmental pediatricians. And before I could even sit down at the fourth one, the doctor said, your son has Asperger's and ADHD. That was really validating because we could finally get the services he needed. And that's really where our journey began.

Our school journey. Like I mentioned, he was in an accelerated focus option, which divided the school into clusters-- K through second, third through fifth, and sixth through eighth. What we wanted for our kiddo was for him to have the same continuity of social interaction. And in those pods, he had a great little cluster of friends.

There were three of them that were kind of like magnets to him. He was very happy in the program, other than the fact that when he got into third grade, the stakes were raised. That's when it wasn't the teachers who were telling the students what to do. Rather, it was a peer leadership thing. They were mentoring and coaching these kids on how to work as a team, do group projects, and so on.

But as a third-grader, Dalton did not like being told what he was supposed to be doing by a fifth grader. And so his anxiety became really apparent in this new form of classroom. I had tried to make different deals with different educators. Hey, can we go about trying this? For math, can we bring him into tutoring so that he can keep up? What do you think?

A little bit of this and a little bit of that, but we never really got anywhere with it. They would say, sure, let's talk about it. But then it would never come up again.

So we went to our IEP meeting in the fall. And three different teachers came in and told these long stories about how awful Dalton was. We were completely blindsided. 45 minutes later, they came up with the recommendation that he be removed from the program.

So anyway, three weeks into third grade, we realized that we had to remove him from this program that he had been in for the last several years because he simply was no longer welcome. So we removed him without a plan B. So for three weeks, he was at home with a full-time caregiver while my husband and I were trying to make a living while hurriedly investigating what our different options were.

There was a neighborhood school. So we went to that elementary school, saying, hey, our son has autism and ADHD and needs to come in. But the principal wouldn't even meet with us. So we ended up at another school that was a 25-minute commute from our home.

There, he got special-ed services but in a mainstream setting. They also had a communication and behavioral classroom. We were assured that it's not where he would end up and that it would be there as a back burner kind of thing in case he needed to go there for breaks or so on.

Things were somewhat smoother. But every time we'd have an IEP meeting with the special-ed teacher, she would just sit there and make these really snide little comments. She'd sit there with a really sour look on her face.

We hated the fact that he was actually under her care, because she was awful. It was awful. But there we were. And we kept telling ourselves that all we had to do was make it through elementary school.

By the time he got into fourth grade, the excitement set in. And he had a teacher who seemed dreamy. Then one day, I was called in and learned that there was a child that had thrown books, scissors, tennis balls, and was ruining other children's artwork. I realized that it was my child, Dalton.

After that event occurred, we had a field trip that came up. And the teacher was looking for volunteers. So I did. Incredibly maddening, though, is that she made me follow the school bus the entire time because she was concerned that Dalton was going to have some kind of meltdown. I later learned that it was illegal for her to make me do that. But we did it.

Things spiraled downward and downward and downward. By November of his fourth-grade year, he had ended up in the communication and behavior classroom, where every day, he was doing the days of the week, reciting the months in the school year, and doing math that he had mastered in first grade. The only thing that was good about the communication and behavior classroom setting was the fact they worked on a lot of art. And his artistic side really came out.

For the most part, though, it was a disaster. And we spent entire summers catching up on math with Khan Academy because he didn't learn much. By the time he got to middle school, he really found his stride in the school setting.

He had an absolutely amazing teacher/caseworker who emitted sunshine wherever she went. She was the most positive, loving, warm, caring teacher ever. Because of her, he had an exceptional experience in middle school. When he graduated from the eighth grade promotion, my husband, Mom, and I were all shocked at the level of applause that he got. The popularity scale was so high. Everyone was like, woo, Dalton. He was so well liked and finally hit his stride. A good teacher can make such a difference.

In ninth grade, last year, he was doing quite well. They take eight classes a term, which is a lot, although this year it's going to be a little different. We realized that eight was a little too much. So we adjusted it down to six, as we learned that at the end of his high-school career, he'll be right on track anyway.

There have been a few problems along the way. He and another girl with Asperger's have had a really bad experience with a choir teacher, who created a toxic classroom environment and was always sending them to the principal's office for no good reason.

So that's been bad. But I could tell you all kinds of stories of teachers that have been incredibly awesome for him as well. So that's our school journey. We still have a ways to go.

I think the most important thing to understand with a child who has autism or any kind of learning difference is that that child is entitled to a free and appropriate public education. There should be no stops involved in terms of getting access to everything that your child is not only entitled to but capable of doing. If you know and your child knows that they can do something, do not let the school stop your journey towards doing it. We learned that lesson the hard way. And we are continuing to learn it despite our successes.

Life at home. At home, we're still working on self sufficiency and accountability. I'm certainly not an expert on Asperger's or autism, but I am an expert on my son. And when it comes to getting him to be accountable, I've had assistance.

Tutors have been a great source of help. One thing that we were struggling with towards the latter part of the school year was learned helplessness. What we're doing now is establishing benchmarks for him to accomplish on a daily basis when it comes to classwork. So between here and here, the goal is this. If you don't make the goal, it's no big deal. But we know you're capable of doing that.

When it comes to doing chores around the house, I have him do one chore a day. Once I ask him to do it, if he doesn't do it right away, I am pretty much in his face, not in a mean way. But it's like, honey, I'm not asking much of you. This is the one thing that I'm asking you to do today. If you can continue to start doing things without me asking you to do them, we can have a discussion about a higher allowance. So we have these conversations. And then we reevaluate what happened together.

Actually, just yesterday, I told him how he did such a great job and all the positive things he had done. You've been really great about doing chores the moment I ask you to. You've been great about reading at least one news story a day. At the same time, when I give the compliments, I also toss in areas where improvement could be made.

You were doing really good with making your bed every day. But we slipped a little. I thought that we had planned on you doing one social outreach a day, one bit of exercise. Here's a reward for all of the good work that you did. And know that once we create this program again, we're going to ask you to be accountable to that. Lightly treading, but we are getting there.