No Parents Are Immediate Autism Experts

Being a new parent is scary. People talk to you about things that you have a vague understanding of as if they are things you should be intimately familiar with.

Does he sleep through the night? Matthew was colicky as a baby. We would take him to the pediatrician for routine inoculations, but the cultures often came back negative.  my mother-in-law – that’s Gary’s mother –  she would tell us that when he was a baby, she would swaddle him through the night, but as he got older, they did the Ferber Method that, I know some parents aren’t on board with, but are you doing Ferber? I wasn’t sure.

Um. I know the words “night” and “mother-in-law”.

You stand there, like a fool, nodding along as if you’re hearing directions from someone with a thick accent knowing full well that you’re going to just GPS it as soon as you walk away because nothing is registering. Not a single word.

That’s what new parenting is.

If any saving grace exists, it’s that the confusion doesn’t last long. Let’s be honest. You were a kid. You get it. You’ve met kids. Plus, any other parent on Earth can answer any questions, if you have them. If Gary’s wife is confusing the hell out of you about Ferber method, you can always ask your aunt, neighbor, or someone pushing a stroller at the mall. Chances are, they all can help you along.

For parents to children with Autism or any special needs, the confusing words are more obscure and the ramifications that come from nodding along are much more serious. You can’t ask many people for help and the need to know what they mean can weigh pretty heavily on an already unsteady heart.

It doesn’t take long either. V.M.A.P.P., I.E.P., C.S.E., O.P.W.D.D., S.E.P.T.A. – the letter combinations are never ending and, almost immediately, people start using them around you as if you know what the hell they are talking about.

lucaslift

The memories of sitting in stunned confusion as my son’s coordinator and program director made arrangements for his kindergarten placement still sit in my head. Working from home, I had completely forgotten that they were coming to the house to figure out his individualized education program. I was still wearing pajama pants when I opened the door and sat them both at the filthy dining room table. It was an hour of me staring stupidly for an in-house meeting that could have been done on the phone.

They opened their books and checked their boxes. The director, an astute no-nonsense exec-type, looked like the lady in the movie who tells everyone they’re not allowed to dance before breaking out her own moves in the big final scene.

Next to her was the woman who coordinated my son’s in-home therapists. This woman was the exact opposite. Manic and loud, she spoke without thinking often and always came off like she had just snorted a Red Bull.

I listened as they talked about Lucas’s percentages here and percentiles there. When they got to speech services, they began pondering what the district would allow. The director wondered aloud if my non-verbal child could get the speech help that they were asking for. It caused our painfully unprofessional cracked-out coordinator to break into hysterics.

Uh…I think they will allow it. Ha ha.  Yeahhhhh. I, uhhhhh, don’t think that will be a problem! Ha ha. Yeah. Ha ha. 

It took all the effort in the world to not stand up and flip that table on her like a 1980s pro-wrestling contract signing ceremony. I clutched my fists and sat through it because I needed these people. It was all new and in this instance, at this time, I had no idea what was right for my boy. This lady did and, although I wanted to punt her through the front window, she was getting him what he needed. 

She may have been an insensitive moron, but these people held my boy’s future in their hands when it came to knowing what he could be given by the district. I couldn’t help, yet. It felt powerless and scary, but I gave them my trust. They’d talk their big words to each other, write stuff down, and then ask me if I had any opinions. I said no.

It was a lot to take in. I knew I needed to know it all, but it felt so difficult. I thought I would never be able to understand all these technical terms that related to my child with autism.

However, I can tell you that now, all these years later, as my boy rounds fifth grade…

I still don’t really get a lot of it. 

I learn every day and can honestly say I understand a great deal. The terms brought up at the meetings I sit through are all things I’ve made a point to become familiar with Yet, there are still some things that are so deep in the weeds for me, as someone who’s not professionally trained, that they’re better left to the experts. In a nutshell, I know what’s needed as a parent and I’m constantly learning. I know what I need to in order to help my son. Then I try to learn more.

That took time though. As he grew, so did my need to know what they meant. I stopped being embarrassed to ask questions or admit that I had no idea what a PECs board was. When it started to become important to Lucas, it became important to me.

For any parent struggling with the first few years of therapists, professionals, and educators speaking in jargon they don’t understand, the future can seem grim. However, just like the diagnoses, it gets easier. Understanding it all can seem intimidating at first. Most important things in life are.

 

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