Belle sitting alone

Where is all of the autism support?

My thought process for this post started out like most of the others: I wanted to think of something adorable that Belle has done that I could mix autism with, and write about it. But that’s easy. In fact, it’s so easy that there are already thousands of blog posts out there that follow that concept. And those stories are great! It’s fun to write about Belle’s personality, and I very much enjoy reading those stories from other parents with children with autism.

But then I started thinking about how we didn’t start this blog to only dote upon Belle (as much as we may want to). It made me wonder what I could write about that would actually be beneficial to her, us, parents of children with autism, and other children with autism. Then I remembered one of the first conversations that Belle’s mom and I had that led to the idea of sharing our story.

We began writing because we felt there was a massive lack of support for autism. Especially where we live. Every time we’ve walked away from an appointment we haven’t really felt better about what’s going on. They all seem exactly the same. As if whatever we’re doing is exactly what needs to be done, so just keep doing those things. The conversations always seem to go:

Doctor: “How is Belle doing?”

Us: “Really well! School has been great for her, and she’s vocalizing more. She eats chicken now, too!”

Doctor: “That’s great. Let’s see you back in 6-12 months.”

Us: “…”

Ever since the first mention of autism with Belle I think we’ve received a couple of pamphlets of information. Pamphlets. I create pamphlets at work for sales people to hand to clients that summarize the company, and give a brief overview of products. I don’t want a brief overview of what autism is, and I sure as hell don’t want a pamphlet that I can read in three minutes. What I really want is a support system for my daughter that is designed around her needs.

I’ll tell you what, though. Before her diagnosis it seemed like there was a lot more involvement. There was plenty of concern about what was going on. We had visitations from our local AEA, and they got her a spot in school. But after the diagnosis, after it could finally be labeled, it seemed like there was no need for anything else.

I remember the drive to Belle’s appointment. At the time we didn’t know if there would be an official diagnosis, but we were excited for one when it did come (we weren’t denying it at this point–we knew Belle had autism). We assumed that with an official, black-and-white diagnosis we would start receiving answers, information, and getting set up with all of the things necessary for Belle’s success.

That didn’t really happen, though. We basically got the names of a couple of places in town that we already knew about. Her doctor thought she could benefit from speech therapy, so we set it up.

The damn room was like a doctor’s office! Bright, tiny, with a heavily bearded man–all of which made me uncomfortable! Belle would scream the entire time. So they recommended that we try leaving her there without us. Ha! My only thought was, “no f***ing way!” It was an unorganized place, and seemed more like a jungle gym for parents to catch a break. Needless to say we only lasted a few sessions.

That was about it. We filled out some paper work for various other things, and I think we’re on a waiver list of some kind. We had also filed for Medicaid, which could have helped with certain therapies, but were denied due to income. None of this seems like much. At this point, I’m not really sure what an official diagnosis is going to do.

Luckily, Belle was already in school by the time she received her diagnosis, and it’s been amazing. Belle loves it so much that she can’t get out of the door fast enough in the mornings to get there. She loves her teachers, and is especially close to one aide. It’s been a fantastic experience.

Well, now what the hell do we do? When did we lose the connection? We received the diagnosis, and it seemed like a lot more should have happened, but it just…hasn’t.

At this point we’re just happy for school. We’re still hopeful that something is going to come in the mail with a blueprint of paths to take, but it may be denial.

We have another appointment coming up soon, though! Five to six hours of driving; a city I don’t like; and praise from the doctor on progress. But, hey, it’s a day off of work and school! Maybe that’s some kind of support.

The worst part is that we know there are parents out there with even less knowledge of what’s going on. It doesn’t feel like we have much to work with, but to have less?? This is the importance of a support system. This why our blog exists. We want our pissed off voices to be a part of the cause. Not just for us, but for everyone who is impacted by autism.

Don’t settle for just a diagnosis. Push for an ongoing support system that helps our children build a better future for themselves.




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