Why Parents of Autism?

Why is this a thing??

It would be cool if this wasn’t something that was needed.

Let me give some background for how this came about and what got things going in my life.

I met my wife Almost 10 years ago. She had a daughter who happened to have autism. This was never an issue for me. Even before I had met them, I made an internal decision that if I ever met someone I wanted to be with, having a kid would not be a problem for me. I grew up around a lot of kids. My mom ran a daycare out of our house for my whole life. I was also not concerned about having a kid with autism some day. If it’s meant to be, why would I let anything hold me back?

One of my first frustrating experiences was when I went to a parent teacher conference event while she was in kindergarten. The teacher was actually pretty surprised when we showed up. She said most parents don’t go to them. I was honestly puzzled on why that would be the case. Shouldn’t all parents care enough to go if they can? This had me feeling weird, but we had a good experience with her and the meeting was great.

Later that same night at the event, we tried participating in the festivities they had set up. Even this part was fine. Our daughter is able to participate in post things without any issues besides some extra supervision to make sure she’s doing the right things and not holding things up too much. No issues. But we tried getting some info about future events and being able to participate in PTA and other things like this. There were many plans for activities and tons of ways to be involved.

but

There was ZERO inclusion for the “functional skills” class where our daughter was and other students with autism and other disabilities. We did actually ask about this and we were essentially told they wouldn’t do anything to include them. I don’t remember what their reasoning was, but what it felt like was

1. This will cost too much extra money

2. We don’t know how to include them

3. This will be too much of an inconvenience.

I was baffled by this experience, but it turned out to really only be the surface of an overall issue and disconnect between these students, families, and even teachers to being able to fully participate in activities and school experience as a whole.

Starting that year and for several years after, our daughter was able to be a part of an adaptive P.E. class that would be more geared towards these students that needed a little bit more attention to be able to be involved. This was good news! She could play and learn with her classmates and get the extra attention needed that she couldn’t get in a “normal” class. Her teacher set a goal for her. Learn how to properly throw a ball. This might seem like a lame goal, but for kids with autism this could be difficult to learn to do. I’ll come back to this point since it will be important…

Every year, we have what’s called an IEP meeting. This is to go over goals and plan for how to best help the students. We review how they’re doing and what changes need to happen to give them the best experiences possible. This does take time to prepare for and a lot goes into it. We are happy to participate in these and I’m sure they give the teachers better understanding of how to better help our kids. The teachers will attend, a member of school administration, and some others such as a speech teacher if applicable, a “regular ed” teacher, and others. It does take coordination and can be tricky. We will usually need to take time of so that we are on time and can give our full attention.

However, what we’ve usually seen is discouraging. Teachers not able to fully prepare, technical difficulties, teachers scheduled to attend that call and ask for permission to not attend, goals that really don’t apply, and usually… starting late.

Special education teachers don’t have the resources to properly prepare and help our kids. They probably don’t have the time to go ahead of time and make sure all the equipment is working. They don’t always know how to fix technical difficulties without help. We get that teachers don’t want to stay late for these. But we have to miss work and it’s very frustrating to arrive just to sit and wait, and then for teachers to not show up or leave early. Goals have been either not specific enough or not realistic. Remember that ball throwing goal? The P.E. teacher had that as her goal- for several years in a row. Something is wrong.

I’m getting riled up and rambling so I’ll bring it back in

Why is this all a problem?

A couple years ago now, I took our daughter to the orientation and “meet the teacher” before school started. She had this teacher the year before, so it wasn’t super needed but we like to be involved. A family arrived before us and were talking to the teacher. Obviously I was able to hear their conversation and it broke my heart.

This family had given up on helping their kid. They didn’t feel like it mattered what they did, their child wouldn’t be able to progress or get anything out of school. It was discouraging, but the more I thought about it… the more I, in some ways, understood. It’s so hard when we have so much going against us and very little resources to help. We’ve met with teachers. We’ve met with principals. We’ve even had conversations with school district administration. Very little has changed or happened. In fact, if anything there have just been more and more experiences that are disappointing.

What we need is community. If we aren’t finding the help we need for our kids from the schools and districts, we need to create this for ourselves. There are several great groups on social media sharing experiences. But we need more and for it to be better integrated to make some real changes.

Along with this, is better support for the parents of these children. What do we have? Glances as we walk past someone saying, “yep, been there, sorry.” We need to find a way to work with school districts to provide resources that ACTUALLY work and are constantly reviewed and updated. We need more inclusion, not just at school. Community events, sporting events, simple things like going to the movies or grocery stores.

What can be done? I don’t know. I don’t have the answers. Yet. But we will start to make these things happen.

You can ask pretty much everyone and they will agree that we need to provide more for these kids. But what ends up happening?

Nothing.

or

Big spectacles for “Autism Awareness Month” and then absolutely zero upkeep until next years marketing tactic.

Let’s come together to be better and help us all grow.

That way we can help our kids the best we can and set them up.

Let’s do what we can and keeping building and growing together.