Finding Our Place, Successes and Setbacks in the School System. Chapter 2, "A Marathon, Not a Sprint."

My name is Ramona. I have two sons. And they're 23 and 21 right now. When my oldest son was about to turn two, I joined a playgroup with him. When we went to the playgroup, all the other kids were playing with each other and fighting for toys and interacting with one another.

He was just grasping at the one toy and walking around the perimeter of the room, humming. I had never seen him do that before. I actually have a master's degree in rehabilitation counseling. And I've worked with people with various different disabilities for years and years. So I had worked with autistic individuals before.

When I saw him that day, he wasn't speaking at the level that he should have been speaking. I came home, and I said to my husband, Derek, was acting autistic today. My husband said, what are you talking about? So I started describing what our son was doing. And that was the first seed planted in my head, telling me that maybe I need to look a little closer at things.

A couple of months went by, and I got him an evaluation. 21 years ago, at the time of that evaluation, I was afraid of autism. In the 1980s, I had learned in college through my special-ed classes about refrigerator moms and how autism was a result of them not being affectionate enough with their kids.

I thought of a kid who was going to be locked in his own world and never be able to relate to another person or have any empathy. I now know that none of that is true. But all that time ago, those were some scary thoughts. There weren't a lot of resources, since back then, it was like 1 in 10,000 kids were being diagnosed with a strong medical model fix-them kind of mentality.

He used to play this game where he had these little balls that you would drop into tubes, and they would do different things. Instead of playing with the tube part, lots of times he would take the ball and drop it on different surfaces in our house while listening really closely to the different sounds the balls made depending on the surface. He loved the different sounds. I thought it was so smart and interesting that he was so focused on the different sounds.

I remember thinking the day before he was diagnosed that it was the greatest thing ever. The day after the diagnosis, he started to play that game. And I stopped him because instead of it being this really cool game, in my mind, it became autistic. I stopped him from playing his favorite game because of what I symbolized it as. It was out of fear. I wanted him to stop being autistic. That sticks out in my mind because I still regret it and know that I would never do that now.

As time went on, we got him into this little preschool that was affiliated with the local university. They got a grant for low-incidence developmental disabilities. Back then, it was low incident. He was fully included in the preschool for three years. And it was just amazing. They followed him. They did play-based stuff. He just blossomed there. And it was incredible.

The other son. He had a little brother that tagged along at the preschool. And he was completely different from the older brother. You know the phrase-- when you've met one person with autism, you've met one person with autism. I always say my family is like a little microcosm of that because my younger son started speaking probably 12 months before my older son started speaking.

By 15 months, he could talk to you in full paragraphs. And you could have full conversations with him. We read books from birth because both my kids always loved books. And that was an activity that we all did together.

However, he actually started reading without me instructing him on his own when he was around three, maybe a little over three. So he was very, very smart. Once he got into preschool and he was around other kids, the teachers and I started noticing different things. At lunchtime, he would turn his back and wouldn't want to eat lunch with other kids and deal with all the noise.

On the playground, he didn't really engage with anyone and would just roam around the perimeter doing his own thing. I think if my older son wasn't diagnosed with autism, I wouldn't have pursued anything with my younger son. But because I did, we decided to have someone come in and get him evaluated. So right before he turned four, he was diagnosed with Asperger's syndrome.

A mother's revelation.

After the diagnosis, I spent the next couple of years very anxious, just trying to fix everything about them, wanting to make them neurotypical and stopping them from doing things that I thought looked autistic. Then one day, I was watching them walk to the playground with my husband, each of them holding a separate hand.

And all of a sudden, I thought to myself, they're the same-- the same as they've always been. It was me that was different. I was making it different. I was not accepting them for who they were. I was trying to fix them. I was the one playing the victim.

I don't know what it was that made it click in that specific moment. But from that day forward, I decided I was going to try to shut out all the medical model noise and no longer stop them from doing things that help them adapt to their world. From that moment on, I was going to get curious about my two kids. I was going to learn as much as I could from them and with them as they navigate an ableist world.

I wanted to learn and know how to help them feel good about themselves. I also started working on myself and my own nervous system and my own anxiety. I took up yoga and meditation. I even shared little things I learned with them bit by bit. Slowly, I saw differences. I saw my kids growing and blossoming in their own way, once I let go of my fear and let go of trying to make them neurotypical.

When they were around 11 and 9, we moved from a metropolitan area, where there were tons of playgroups, music therapy, sensory integration therapy, and social skills group, to a very rural area in the mountains. There was almost nothing there. There was nothing for anyone.

A lot of people had never even met someone with Asperger's syndrome. So folks didn't really know much about autism at all. I was really nervous about it. But it's turned out to be one of the best things that has ever happened to us.

Community activities were informal, like going down to the creek with some kids and playing. People got to know each other really well because it's such a small town. Everyone got to know my kids. And the things that had to be artificially taught in social skills groups where we previously lived sort of happened automatically.

It was really great. It wasn't all perfect, however. There were, of course, still challenges. My older son was fully integrated in his classroom in third through fifth grade. But when he hit middle school, things got really difficult. So he went to a separate school for sixth, seventh, and eighth grades.

For a lot of people who are huge advocates of school inclusion, I think that would make them cringe. But he actually needed that extra time because it gave him room to grow. He needed a quieter classroom. He needed a place that wasn't so busy. It was all based on what he needed at the time. He ended up in an integrated high school, having mainstream classes for half of his day, and then in a special-education classroom for the other half of the day. It was a good and productive mix.

My other son was fully included in the mainstream classrooms through school. His success did ebb and flow, according to the teacher. It would be really nice if there was a uniform way that everyone could approach autism in schools. But for us, it really just depended on the teacher. Some of them just didn't want to listen to parents or the kid. But we had others that were really great.

We had some who would let my son pace in the back of the room when he needed to or stand up when he was writing, as that would be easier for him than sitting down. Especially in the younger grades, he would sometimes finish his work early and would be allowed to go into a corner of the classroom where he could sit and read in a beanbag chair. Sometimes, even if he hadn't finished his work, he could walk to the back and pace until he felt he had the mental clarity to come back to his assignment.

It was really, really wonderful for him. And it didn't even bother any of the other kids. In fact, it actually helped some of the other kids because even though they may not have had a formal diagnosis, it normalized the behavior for other students who needed it.

I think when it comes to inclusion in schools, people are often worried that it's going to negatively affect the neurotypical kids. In my experience, it has helped the neurotypical kids and enhanced their experience far more than it ever hurt or bothered them.

One thing that I did as a parent, with my kid's permission, is I would go into the classroom at the beginning of the year. And I would teach the kids about autism and Asperger's. Then I would do an activity where they would have to say what their favorite food was or what their favorite color was or different interests and things that they liked. This helped kids not only find similar interests with other classmates, but it showed that my kids were just like them too.

College and postcollege. After high school, my son with Asperger's went on to early college, which is a program we have where we live. I think other states have it as well. But essentially, what happens is that the local school system matches with the local community college, and they develop a program where students can do both high school and get an associate's degree within four years. So he did that. And it was a perfect fit.

I would tell anyone with Asperger's who can do regular education level work without a lot of intervention to do that. It was a smaller program. He got to be with college professors who were excited about what he knew and his curiosities. It worked out really well.

He graduated from there and then went to the University of Alabama. They have an autism support program there. He got into a bunch of other schools that we went and visited. But he decided he wanted to go to Alabama because they had that program. And he knew that the support would be helpful.

I wasn't so sure about him going that far away. But I listened to him. He told me how badly he wanted to go there and that it was the place for him. He was right, like he usually is. I'm glad I listened to him. He got some fabulous support there.

He has since graduated and is now at home. He's living here for at least the year while he's studying for the GRE and trying to go to graduate school. He loves museums and libraries. He also loves Washington DC and all the things they have there. So applying for schools in that region is his current plan.

With my other son, one of the things that I think my son shows is that the labels of high functioning and low functioning aren't really accurate. If you look at him, he's high functioning in the sense that he's very smart and he graduated from college. But he still needs a lot of help navigating adult life and figuring out what he needs to do outside of the structure of school. How do you interview? How do you conduct yourself on the job? How do you sell yourself? How do you pay bills, make food, et cetera?

Recently, he had a therapy appointment, and he couldn't work. So he was saying that he was going to call his boss and tell him that he had therapy. I said to him, I wish everybody would accept therapy for the wonderful thing that it can be for someone who needs it. But unfortunately, society is not there yet. So you really don't have to tell your boss every detail of your life. Just tell him you know you need to switch your schedule. You have an appointment. So it's just little things like that about how to navigate the world.

I think that it all really shows that it's so important for people to realize that just because someone appears to be high functioning, it doesn't mean that they don't need help. I wonder how many individuals like him get left behind because they get dumped into a category of high functioning. He does get Medicaid-funded services and other wonderful supports. He's able to have a part-time job.

We built him a little house up above our house because he wanted to live independently. But he can't live fully on his own yet. He needs reminders to eat and some help taking care of the household. So it's nice that it's a 20-second jaunt up the hill from our house to his.

He moved in last December. And he absolutely loves it. We just helped him figure out what chores he needs to do each day, make sure that he's eating, help him at work, and do little things like that. It's all paid for and is a great solution for the time being.

Advice for other parents. If I could go back to 21 years ago, when my first son was diagnosed, I would tell myself how they each found their own path and they're each doing really well. Yes, there are challenges and struggles. But they are happy. And they have so much joy in their lives.

Most of the parents that I talk to and work with are immediately in fix-it mode. I would tell the young mother that is freaking out, take a breath, and it's OK. It's not about you. It's about them. Listen to your guy. But also, follow their lead. And don't try to read every scientific thing out there. Your kids know what is going to be best for them more than any book will.

I would also tell them to take care of themselves because if you can remain calm and stay on a calm path, then you can deal with whatever you need to do to help your children. Slow down, and realize that parenting is a marathon and not a race. Take things one step at a time, and try not to project into the future all of your worries and all of your fears.