Chapter 6-- the struggle to get the right resources-- I'm Kate, and my son is Teddy. And he's wonderful. He's 23 now, and he still lives with us.

He wasn't diagnosed with autism until he was 16. I tried to have him diagnosed when he was three. He's the youngest of four, so I had some experience with having children before. But there was something different, so I was concerned. So we took him to a doctor, and they ran a bunch of tests and decided that he qualified for special ed preschool. But they couldn't give him the medical diagnosis.

I kept wondering if maybe he had autism, but they kept telling me that he didn't. When they finally diagnosed him at age seven, they did 12 hours of neuropsychological testing, and they diagnosed him with cognitive disorder. I could have told them that 12 hours before. I was hoping for something more specific.

He had special services up until second grade, and we put him in a multi-age program. It was a program where they didn't have lots of resources, but I liked the approach and the multi-age aspect. It was a good environment for him. But they didn't have a lot of extra resources at that school, so they had to bring somebody else in to do occupational therapy with him.

They continued OI through second grade when he passed all of his OT requirements, and then they just exited him from special ed. After that, we decided the school environment that he was in was a better fit for him than going to the larger school where he would be in a resource room or something. The teachers were willing to or, rather, had to do a 504 plan. But because he wasn't on the list, he couldn't get specific special services.

We finally took him to the local autism clinic, and he was diagnosed at age 16. I remember the doctor bringing us in and telling us that he had ASD. And I started to cry. And she tried to comfort me. And I told her, no, you don't understand. These are happy tears.

I was delighted to hear the diagnosis because there were resources. I'd known this for a really long time, and people kept telling me that he's complicated and he doesn't require services. I had to fight the school district because he wasn't on their official list of disabilities. So it was a huge relief.

It wasn't like having an autistic son isn't devastating news to me. It's not something terrible. I was really happy and just very emotional to finally have that diagnosis.

We were able to start getting some special services for him again at the high school level. By then, he was in a different program, so we finally moved him to the big high school where he could get that. Suddenly, we had resources available to us. Without those resources, he wouldn't have been able to graduate. He would have been in high school until they kicked him out at 21.

By having those free resources available, we ended up with an extremely good teacher as his case manager. I couldn't thank him enough for how amazing he was. We were able to get him the help he needs. We were able to get him not only just the help with cognitive things, such as getting his math done or trying to do an analysis in history or in English, but he was also able to get some occupational skills that he wouldn't have otherwise been able to.

Not only do we have the resources of the school, but we now also have state resources available to us. That will last him past just high school. We have the Disability Resource Center, DRC. We've got some additional help to make sure that he's going to be OK. We're not going to be around forever, and he'll be around longer than we are. And the state now has the ability to help him even past the time that we are not able to.

Struggles with teachers and school-- when he was early on in his school career, I struggled with his teachers when they assumed that he didn't care. They would think that if he's capable of doing something but doesn't do it, well, then he's refusing. It really wasn't that he was refusing, but he was overwhelmed.

While it was a very nurturing environment, the teachers were not specifically aware of autism. He was in fifth grade for two years, so we dealt with one teacher for a while. There were times that I felt that she thought he was just not willing to perform when, in reality, he was overwhelmed by the instructions, didn't know what to do, or didn't like being called out in front of everybody.

She would be irritated with him because he wasn't working on a project, but he wasn't being oppositional. He was overwhelmed. I always felt like she didn't know how to handle him and was too busy to try to learn. There was no special ed at that particular school, and he didn't fully qualify for it either.

Consequently, he had to be in a mainstream classroom, yet he definitely didn't fit. His teacher would often complain and tell us he was lazy. We told her that he can't follow directions the way that other kids do. It needs to be written down.

But because he didn't have an IEP, she would not accommodate. And I always felt that was the big problem. She refused to accommodate him because he didn't have the state forms. It became very frustrating as a parent to know that additional support would make the biggest difference, and she just wasn't willing to do it.

Because he didn't specifically have an autism diagnosis, we were flying blind. I didn't know why he did the things he did. I didn't know what was happening in his brain. I didn't know about the sensory processing stuff.

He was often misunderstood. There were periods when we started driving him to school because kids were harassing him on the bus. I remember him coming home and saying that the kids told him he was their arch enemy, and he was really hurt. Every day, they would say this kind of crap to him, so we started driving him.

Once he got to be in about fourth, fifth grade, he got really good at shooting baskets, so he started teaching the younger kids how to shoot baskets. So he would have this group of younger kids that would follow him around. With the kids his age, he had a hard time relating to them, so he took on this teacher role for the younger kids, which was really sweet.

Every once in a while, the school would host a movie night. One time, we weren't able to get there right when it started, and he had a meltdown because he couldn't get the spot he wanted. I came in, and he immediately found me.

We sat down on the floor. First, he sat on my knee, then eventually sat down on the ground right next to me. He wanted to be right close to me because everything was so overwhelming. Crowds bugged him then. They still bug him because of that sensory overload.

Being able to hold him or have him hug my knee to feel more secure was this amazing thing to see because the teacher was saying that he was just having a terrible time before I arrived. He wasn't able to deal with the crowds, and he wasn't able to go get the popcorn when they had it ready. But once I was there and there was somebody with whom he had connected, he was able to then go get popcorn for himself. After having that big deep hug, he felt safe and comfortable.

He knew that I was always there if he needed me. When he felt grounded and secure, he did fine. Otherwise, he would have a meltdown.

His next school was in a parent partnership program, which was like semi-homeschooling. He would take classes three days a week, and then he was home for the other two. Again, they didn't have special services, but I felt that the nurturing environment, the fewer hours at school, and their nontraditional approach made it appealing for him. Because we couldn't get special services, we ended up putting him in environments that were not traditional all-day-school, all-the-same-age kind of environments, where it wouldn't matter whether he was in eighth grade doing an eighth grade thing or whether he was still doing sixth grade work and needing a little bit of additional help because those teachers could be flexible with that.

I taught there also, so that was another really big deciding factor. He had a wonderful English teacher who had worked at the high school. So her class ended up being a lot more traditional than most at that school. She totally adored him and became a real advocate for him. I think one of the wonderful things was that particular English teacher because there was such a contrast between her attitude and the fifth grade teacher. It's like somebody understood him enough to actually try to help him, so we doubled down on focusing to get a real diagnosis for him.

Getting the diagnosis-- that was a time where I myself came to recognize how much effort my kid put in to learning whatever he was going to learn. He would just try, again and again, because he really struggled academically. He's not just autistic. He has some other learning disabilities and things going on.

So we got him tested by the school. They did an IQ test on him, and it ended up being like 71. It was like 1 or 2 points too high for him to have an intellectual disability, so it only meant that he struggled academically. But what they said was that, according to his IQ, he's where you would expect him to be.

It was really frustrating because we had this number that's a little too high to get the extra help that he needs so he can grasp the things that he needs to grasp. I think that he's quite a brilliant kid he amazes me daily, and I was very frustrated by this number that was interpreted by the school as his intellect and potential not being worthy of their attention. Fortunately, the people at the parent partnership program really loved and cared about him. But socially, he was isolated.

He had a best friend who didn't really want to be his best friend. And so Teddy was obsessed with this one human and wouldn't expand to other humans. That one kid wore out and was not very gracious in him in saying, I don't think we're really best friends. That really crushed him, and he just withdrew, and withdrew, and withdrew.

He would sit with his hoodie up. And even though he had teachers who just loved him, he was more and more socially isolated. We wanted to try again to get this diagnosis, but it took over a year to start getting him tested at the local university's autism center. Another problem was that we had brought him in from out of district because I taught at the school out of the district. We were worried that a special ed request would be denied for the exception of being out of the district. So then he would have just been sent back to the old district with people he didn't know, and that would have been disastrous.

All of this factored into his delayed ASD diagnosis. We were afraid that the superintendent would see our request as a reason to send us back to the other district so they wouldn't have the expense, so we didn't risk it. Finally, we decided to try, and that was when we finally were able to push through, get the diagnosis, and then get him into the high school with the special services there.

We knew he had cognitive disabilities, and he was going to drown if he didn't get those additional services. His social isolation made it really tough for him. If we had those additional services, that's one of the things that they can work on him with. These extra services gave us a sense of hope. We finally got the diagnosis, and that was what allowed us to get him into the public high school.

He transferred in January in the middle of what would be his sophomore year. To start out right with a new school, we had a big IEP meeting. IEP meetings are always loaded up with people. There's the principal, and the vice principal, and the head of special ed. Teddy was just sitting at the head of this big board room desk and amazed that all of these people were here for him. He was really happy about it.

There was attention being given to him and people who were sympathetic. They had an awesome head of Special ed there, Mr. Bob. Teddy had him during his whole time that he was there. He had him one period a day for a life skills class, and that was a real oasis.

Mr. Bob would advocate for Teddy and for all of his kids. It was a place that Teddy could always go and feel at home. Once he got to high school and was with that particular special ed teacher, you could see how hard he was working in all of his classes. And yes, there were things that he didn't understand. But just the perseverance that kid had and still does, it's like he just continues to try and move ahead.

There were still challenges. He couldn't unlock and still struggles with the unique reading disabilities that sometimes go with autism. Taking a great big piece of literature and parsing out what it means is difficult for him to understand. It made writing assignments difficult, like summarizing a big chunk of something he read in his American history textbook. I remember when he was in middle school, they were reading Roll of Thunder, Hear My Cry, which is the story of a Black family in the South in the '30s.

There's a scene where the family is told they have to go around to the back door of the grocery, but they're not explicitly told that. They just know. Teddy didn't understand. Back door, front door, what's the difference? The question was, why did they have to go to the back door? He didn't seem to really even take in that the main character was unhappy about having to go to the back door or felt less than. He just didn't have an overall sense of why that would be.

With education and with reading, he's always had a problem with understanding the larger context. There are often bits of vocabulary that he doesn't understand. I know from speaking French that if I don't know one word of the vocabulary, it changes the entire meaning. I think he still struggles with that, and that was hard in high school, those kinds of classes that stressed heavy reading.

Life in college and beyond-- we were really proud of him when he graduated from high school because I knew how hard he worked. It was really the beginning of a new era for him, just seeing him graduate and getting ready to take that next step. I see all the difference because we've had to teach him to self-advocate. Now he's self-advocates at home and at college.

He sits down with us and talks about what schedule he should have at college and so on. But he makes that final decision. He's the one who's making those decisions. He knows how many classes that he can handle, how much load that he's comfortable with. Just seeing him work as hard as he does on that is amazing.

Here was a kid who was dismissed back in elementary school. Teachers assumed he was stupid or lazy. But no, this is a kid who works super hard, and my eyes were opened back in middle school. It's amazing to see how different he is from when he was much younger and how hard he works continuously.

What I love about my kid is not only that he perseveres, but he sets goals and accomplishes them much more so than his siblings who are considerably older than he is. One of the goals he set was that he wanted to go to Disney World. Teddy was invited along by his brother, and he jumped on that opportunity. They figured out how much money he needed because he had to pay his own way. He doesn't make a lot of money, and yet he saves it all to reach this goal.

I think that perseverance of his combined with his ability to set goals is what helps him to accomplish them. It's like the video games that he likes to play. He has goals and rewards, or points. His points are being able to go to Disney World or being able to go to the store and pick up a computer. That's the kind of thing that I see him do that's truly amazing, considering the other things that he has to deal with. As somebody with autism and the cognitive difficulties he has, it's truly amazing.

He still struggles in college. He's taken the same math course three times because he has to pass that class, and he passed the class this quarter. He asked to do the same thing with English. He struggles with analysis. He perseveres because he's got this goal.

He wants to get his A. The only way to get the A is to do all this coursework. It's pretty amazing to see him get it done.

Overall, if others find themselves in a similar situation that we were in, I would push hard to get that diagnosis. I wish I had persisted more and more consistently. Too much time went by where I wasn't pursuing answers. And if we'd had that autism diagnosis much earlier than we did, it would have been super helpful.

In the absence of an autism diagnosis, just seeing that he had this collection of difficulties, I would have started by going on the internet, asking people and seeing what I could find. There's a lot more information out there now about sensory processing disorder. That was another piece of the puzzle.

So I would encourage parents to just keep pushing, keep asking. They can get the resources that they need. It was too many years of flying blind for us, and I think I let too many things be a barrier, like the fact that he was out of district and I was afraid he'd get kicked out of the district if we pushed too hard.

I think it would have been better if he'd had some special help beyond second grade and beyond just teachers that were sympathetic. I wish we had had specific answers as to why he thought and behaved the way he did. It would have made us more understanding as parents, too, because we knew that stuff was going on, but we didn't know why. Since we didn't have that autism label, we just didn't even know where to start.

One of the things that worked with Teddy was to allow his natural passion and curiosity to happen. He focused on history because he was interested in Doctor Who. It was amazing to see what he could do. His tendency is to set goals and do them. You have to really know your child as to what they can and can't do, but if you allow the child to pursue their interests, they'll be happier. And additional learning can happen as they pursue that.

This is that whole idea of unschooling that some people talk about. It's really how you would parent any child. Let your child understand what they like to do. Help them explore. And let them go.

It's especially important with a child like Teddy to be able to do that, to say, this is what you like to do. How can we assist you in doing that? How can we be supportive of you being who you are? Autism isn't necessarily a disability. It's a different way of thinking.

They are specially abled in ways that other people are not. If we can understand that and help them grow into the people they really are, then they'll be very successful. That's what we have to do as parents is to help our kid to be successful and help our children to become independent because we're not going to be always around. If we can help the child become who they really are meant to be, then they're going to have a leg up on people who are trying to force them into a particular way of thinking or doing.

Some people believe that autism is a thing that can be cured because it's a bad thing. I see it as a unique way of thinking. That's not a bad thing. That's what I would encourage other parents to do. Think of this as a special ability.

We're not always going to understand it, and it's not always going to be easy. We're going to get frustrated because we have to repeat instructions multiple times. But they're unique, and they think in a way that's different. It's not a bad thing.

Understand that. Embrace that. Embrace the child for being who they are. In an essay that he wrote the other day, one of the lines was, my disability is my ability.

He's been taught to think of it as having a unique take on the world. He has a framework for how his brain works. And a lot of other people don't have that advantage. That's what he's bringing to the table.