Finding our place, successes and setbacks in the school system. Chapter 3-- one size does not fit all. Hi, I'm Jessica. I'm from Maryland, and I have three kids, Stephen who's 19 and on the spectrum. Hannah in the middle is neurotypical. And Stuart is 16 and on the spectrum.

To me, our story highlights that it's not a one-size-fits-all situation, so much so that after the first 18 months of Stephen's life when Stuart was born, I would have sworn up and down he wasn't on the spectrum. My idea of the spectrum was Stephen and my experiences with him. So when I had Stuart, I thought, there's no way he's on the spectrum because he's totally different from his brother. I even missed the similarities.

School was just as much a different story for both of them, and it highlights to me how individual people are, their circumstances, how they're made, what makes them tick, and even how the school interacts with them. Even crazier, my neighbor two doors down the street has a son on the spectrum the same age, too. And if you ask her what she thinks of our county school system, her story would be completely different from mine. Nobody even in the same county has the same story.

Kids are individuals, and our stories started out really rocky. The magic diagnosis didn't come. We've had a million diagnoses. We've had tons of doctors, tons of opinions. We've gone up and down on what they have and what drives the school system in terms of the supports they are given and what they do. That itself has been very difficult.

Both Stephen and Stuart started with in-home services and people coming to my house for occupational therapy, speech therapy, behavioral therapy, whatever therapy. When Stephen started school, he was in a multiple intensive-needs program at about age two or three. It worked out mostly until he went to kindergarten and the team labeled him as possibly low-functioning autistic, telling me that he's not going to talk. He's not going to be aware that anyone else exists. He's not going to be anything.

My pediatrician told us that he's going to be in a group home one day. Then at age four, he had this magical turnaround, and everything in him changed. He started talking, and interacting, and just being the great little kid that I always thought he was. But from the school's standpoint he progressed so much that they said he doesn't need an IEP or the supports anymore. I doubted myself because I thought that transitioning from preschool to kindergarten was a big deal and more support would be needed when transitioning to something new.

Ultimately, I defaulted to them being the experts, and so they dropped his IEP down to, I think, a 504 and pushed him to kindergarten. I look back on that, and I think I was right.

School for Stuart-- Meanwhile, Stuart started going into the same kind of preschool programs. He had more behavioral challenges than his brother, although when it comes to keeping staff and other students safe, the supports go way up, and everybody is willing to keep as much support as possible. In kindergarten, he went to a special school, and they provided him special ed and another teacher.

That year was amazing. The teacher once called me and said, I just want you to notice. I haven't called you all year. Stuart's doing great.

And then my heart just soared because, in preschool, he was the behavior problem, always throwing things, having tantrums, and dangerous to himself or others. They dealt so beautifully with Stuart. So I had this great experience with my younger son while the older son, Stephen, was struggling in a neurotypical classroom. And he was getting punished for behaviors that might have just been because he was on the spectrum and didn't know any better.

Ultimately, he was thrown into a kindergarten without an IEP, and he just did his thing as best he knew how. Following in those footsteps, because Stuart was doing so well just like my oldest, they sent him back to his home school. He had a perfect ear. This is great. He's such a smart kid. Lo and behold, all the behaviors came back, and they couldn't handle it, just like with Stephen.

I would say things like, from my knowledge of the spectrum, they like consistency, and you're changing his personal aide three or four times in one day, especially during transition times in the class. That doesn't seem like a good idea to me. Is there a way to be more consistent? Because this does not seem like a good idea.

They would respond with things like, no, no, no, you don't understand. We've got this. We're the school system. I just kept thinking, this does not seem right. But I accepted that this is what they were going to do,

Then again, he would threaten them, and issues would occur. Then his behavior would escalate, and I would get phone calls. While all this is going on, Stephen was skating by under the radar unless he said something because his mouth would get him in trouble.

His viewpoint came from this innocent place of, well, why shouldn't I say that? He's just really honest. And to this day, he's this really honest kid, and he's very blunt about it. And I love that about him it's one of my favorite traits of my son. He's super honest with me, and he shoots it like it is.

But in the school system, they wanted him to behave the way they want children to behave. There's a box, and this is how it fits. Stephen didn't want to get in the box.

So things that are going on with Stephen. But Stuart is still pushing desks over, and the school can't handle it I don't even know what to do with all this, so I start petitioning to put him in another school with supports.

The amount of testing and bureaucracy we had to go through to get the right to be moved to another school only put him in another transition. You won. We're moving you to another school with eight weeks left of the school year because who on the spectrum doesn't like a big huge change right in the middle of your year?

Nothing made sense to me, and it was very frustrating for Stuart. So to make a long story short, he gets sent to a special school, and he does well at first. But then by the next year, the behaviors are cropping up, and again. I'm going to these IEP tables, but I'm not being heard. It got to the point where they started locking him in an isolation room to manage his behaviors.

They would literally call me to go pick him up as they locked him in a cement room while they stood at the door with it locked and blocked and he's crying and hysterical. They say things like, can't come out until you calm down. I'm racing in there and just holding him as he cries in my arms.

And it gets worse. They keep doing that to him. They do this multiple times, and he's vomiting on himself in that room. And he's going to the bathroom on himself.

I continue to do the IEP meetings. I hired advocates. I had tried everything I knew. We've got to do something. We've got to fix it. But that cement room is not working.

So I go to this autism support group for parents, and it's led by a lawyer who's been appointed by the governor. And she represents the state's disability rights. I tell her about my son being locked in the cement room repeatedly, and she tells me that she wants to represent my case. So at the next IEP meeting, she comes into the room and calmly explains the law to them. They can only do what they are doing if there is an imminent danger of death or dismemberment.

Neither of those apply to Stuart. She's looking at the report, saying, you've put him in this room 20 times without doing a functional behavior assessment to understand why he's being locked in this room. What's going on? What you're doing is illegal. This is abuse.

Stuart never acted out at home like he did at school. He wouldn't dare hit me or my husband. He'd get mad. He's a fiery kid. And his feelings come out.

But he didn't throw things or get mad at us at home. He just needed to be understood. And at home, we had that plus boundaries. After the IEP meeting with the state lawyer, they stopped locking him in the room and started finding workarounds, although some of these solutions didn't feel right either.

The teacher told me Stuart came into school this morning, said, I don't want to be here, so he punched me. And to de-escalate, I gave him an iPad. It didn't feel right.

We were supposedly one of the best school systems in the country. We ranked really high, and people move here specifically for our special needs programs. It just wasn't working.

Eventually, middle school comes. And once again, it's a big transition, and I'm fighting for more supports. Stuart hates middle school. He comes home from school, and he says, my teacher is the Antichrist. This is hell. I'm in slavery. This is prison.

His words are strong, and Stuart's not usually exaggerating with his speech. That's the mellow kid. He's complaining every day. It's this picture of death and hell in terms of how he's feeling about school.

He's getting bullied in a PE class that has 110 kids in it. There are over five teachers managing this PE class, but it's absolutely huge and a spectrum kid's worst nightmare. It doesn't make sense because he is self-contained with two students in a classroom the rest of the day, but there are apparently mainstreaming requirements and hours.

It is the policy, and it's what you've got to do. It turns out horribly badly, and he gets beaten by a kid with a belt in the locker room. So the solution is Stuart gets to go in and change his clothes alone while everybody waits. And then he comes out, and then they send the rest of the kids in.

He hates that. He absolutely hates that accommodation. He would rather be alone in a locker room with a kid that's bullying him than be subject to being the only kid in the locker room. He hates it. It's not a good fit.

Stephen in school-- on the other hand, middle school looked so different for Stephen compared to Stuart. With Stephen, when they wanted to limit some of his academic support needs, his speech pathologist and teacher would jump in and fight for him to have supports. They were looking over his grades, and a lady from the Board of Education wanted to limit his supports. And they jumped right in and fought for him.

Stephen is very peaceful. He loves animals. He is a chill guy. But as I said earlier, he is extremely blunt, and when he's trying to express his feelings, it can get him into trouble. The words are really big, and in a public school system, it's the same as screaming fire or being in an airport, saying, I have a bomb.

The language can be extreme. We know you're not supposed to do those things. Stephen doesn't. He doesn't know how to say, I'm really upset. Instead, he might say I'm going to blow something up.

So they would pull him in for an assessment and give him the firing questions. They would ask questions like, have you ever thought of killing someone? And he'd be like, yeah, I have. And then immediately police come, handcuff him, and drag him away to the ER.

But he is super cooperative. And every time, it's always, OK, officer. I understand. Here you go. He's a very peaceful kid, but these big words and these big feelings just don't fit the situation.

I remember sitting in an IEP meeting, saying, we had six deaths in our family in a short period of time. That kid has been to three funerals. Can you understand his expression of depression? And they say, we do understand, but we have policies.

They have policies. They have things they need to do and boxes they need to check. I get it. But it doesn't always work for my kids.

I really wish there was a place in school where he could talk, and express himself, and have a therapist say, I hear you saying that you wanted to blow up Johnny. What made you feel that way? Or let's get to the bottom of this. Oh, he wouldn't look at your DS when you wanted to show him a game? What are some other options besides blowing up Johnny?

So Stephen's middle school years are turbulent, but he gets through it. In ninth grade, he becomes a freshman, and he stops getting bus service. So he and a buddy down the street ride to school on their bikes. They ride to school every day. He's never late.

He gets up early. He goes on time. He goes to school. He's in honors biology. He's getting As and Bs. He's doing great his freshman year. I don't know what it was, but he was amazing with the transition.

Homeschool-- sophomore year for Stephen hits, and he's really struggling with depression. At the same, time Stuart is still really, really miserable in the middle school environment. I had never, ever planned to home school, and the therapists were dead against it because of the social aspects of school. But Stuart really, really hated school.

He hated the people. He hated the kids. He wasn't socially interacting with anybody. He hated the environment. So I decided to listen to what he was communicating, and we homeschooled him.

Our daughter had recently transitioned to high school, and she didn't like it and asked if she could be home schooled, too. With two of them at home, we see if Stephen will give it a chance as well. It was not the best decision. Again, what's right for Stuart is not the same for Stephen.

They're very different individuals. They're very different stories in their schooling. So with Stuart, we joined co-ops with other kids. This co-op is with families who love each other. We all share the same values. We all share the same reasons that were homeschooling.

He's accepted and loved. Kids are coming up to him saying, hey, Stuart. How are you doing? They're nice. It was a little bit confusing as he hadn't been in situations like that before, but that was what Stuart needed. He needed that safe environment, small interactions, small classrooms, little interactions.

It has been really good for him. For the first time in his life, he got invited to a sleepover. They were like, Stuart, is a great kid. He can come over any time. For my mama heart, that was the best thing ever.

He still had times when he would act out. I couldn't make him be comfortable in the co-op. I couldn't make him be friendly. He can still sit really far away from the other kids and look at them and stuff. But he's got a little more trust, a little more shared experiences, a little more out of his comfort zone. It's a great place for him to feel safe, small, controlled environments that are not every day nor all day. It's worked for him.

Outside of the co-op, it works like this. Here's a list of things to do. Do them whenever you want to do them, and check off the box when you're done. Do it in your time and your place. Play your video games. Do what you want. As long as you check these boxes, your schedule is yours. Pick the history project that you are the most interested in.

For Stephen, he didn't have a co-op, and he was doing it solely online. We dragged him in, thinking it would be a family adventure. But he hates it. He likes to have his day scheduled and regimented. He's miserable and can't stand the freedom and flexibility.

We think we're doing the best parenting thing ever, doing this cookie-cutter approach of, we give you options. You get to pick. You're captain of your own destiny.

But he did not enjoy it one bit. What works for other kids did not work for him. He hated it. At the same time, he was really struggling with his depression. Fast forward to 2016, and there's an explosive incident, and I call 911 because Stephen is in the bathroom and he wouldn't respond. His depression just knocked him out. The police are really well trained with dealing with disabilities where we live, and they send two officers out that interview him calmly.

Stephen said that he wanted to kill my husband because he told him that he couldn't Skype a girl on the internet or something like that. He makes some threats to kill himself, and they end up taking him to an inpatient unit. He stayed in inpatient therapy for a while. And during that time, my husband and I came to the understanding that structure is comfortable to him and the public school is what he knows. Even though he had some struggles there, there is a comfort in it.

Stephen went back to the public school after he got out of the inpatient therapy. We'll continue to have struggles because they have curriculum and parameters that they have to abide by. And the re-entry was really rocky. But with us respecting his voice and his wants, he's going to thrive.

He's going to get into chamber choir. They're taking a trip to Boston, and he will do well. He loves singing, and he got to be in Mary Poppins, which he hated because he had to dance, and he's never danced in his life. He just wanted to sing and act. But it was a fit for him.

It was bumpy, and it was yucky. And there were times where he had struggles with different things coming up. He'll struggle with depression, with girls, with boys, with whatever he's going through. But overall, the public school system was and is still a good fit for him.

Advice for other parents-- my biggest takeaway, looking at all my kids and their educational experiences, would be that there is no magic pill. If someone asked me whether or not I would recommend homeschooling their spectrum kid, I would never just say yes or no. It honestly just depends.

You have to know your kid. As my story shows, every kid is different, even within the same school district. I think listening to our children is more important than I realized. So while Stuart didn't say, I'm really uncomfortable in the school situation, or, I'm so uncomfortable when I'm there I blow up, when he would say, my teacher is the Antichrist, or, school is like a prison camp, he was still communicating his struggle. So pay attention to that.