Dear Typical Parent,

Hi there! I saw you this morning at the bus stop, taking pictures of your kids in their new clothes with shiny backpacks and haircuts. My son was the little guy with a hole in the back of his shirt where he ripped out the label because he couldn’t stand the feel of it against his skin. He had last year’s backpack even though the zipper is broken, because it’s familiar to him and he was also wearing last year’s shoes because he doesn’t grow much and they feel just right. Kids with autism like things that are broken in.

I noticed your son’s shiny braces, too! My son needs braces, but he can’t get them yet. He’s had two surgeries to have teeth removed (not at the dentist’s office, but at the hospital because that’s where kids with heart defects have to go), but he needs to have even more taken out before we can think about braces. That will be surgery number 14…I think. I’ve lost track.

Your daughter was the one first to ask how old my son was; probably because she’s seven and taller than he is. See above, regarding heart defects. He gets a shot of growth hormone every day, though, so I’m hoping he looks like a nine year old by Christmas break!

At first he didn’t hear the question, because his new hearing aids are still on order. After she asked three times, your son was shocked after my son said his age, so I said, “No, really. He is 13.”

Your boy replied, “He’s so little. That’s weird” and it was awesome how you nervously laughed and didn’t correct him.

When your kids come home this afternoon, they may tell you that my son sang the entire time he was on the bus. Or, that he bounced in his seat, or that he did something completely off the wall like throw something out of the window. I hope you are like the parents at his first primary school and tell your kids that he may not be able to help it, but if you’re like the parents at his second primary school, I understand that your first reaction will be to call the school and attempt to get him removed from the bus.

I know my son doesn’t look like yours, act like yours, play sports like yours, eat like yours, or talk like yours. That’s because he is not yours. He is mine. He is unique and quirky and sometimes the most frustrating human being in the world, but he is a child. And, he’s a child who needs an education just like yours. He’s smart enough to score on a 10th grade math level, but sometimes he can’t get his actions and words to match what’s in his brain.

Tomorrow, after you’ve had a chance to talk to your kids about inclusion and how every child deserves a chance to go to school I hope they will greet him with hearty hellos. I promise, if they do, I’ll do the exact same for you.

Sincerely,

Momo

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I have been thinking about this post for weeks – months, actually. Words twirl about in my head, one after another; mulling, and brewing, and boiling until my body becomes an animated version of itself and steam shoots from my ears. I hear a whistle as if my brain is a factory, closing for the day, and my body is dirty, tired and gritty from all the work it had to do to keep the factory open, working, resourceful.

And, the words – the hot, steamy, messy words – can’t be written down because they have become condensation on the walls. They slide and drip to the floor until they’re in a jumbled pile at my feet. I see them there, a mess of black letters spelling anger, sadness, fraud, sorrow, trust, love, faith, conviction. I move forward and they stick to my shoe.

I try to wash them away, but they won’t take leave. They are glued in this spot beneath me, always at my feet with every step I take. I need new shoes, I think.

The new shoes are shiny and clean; there’s no blackness on the soles. They give me blisters, but my toes will adapt. I wiggle them. I go for a run. I try lots of new things in my shoes and they become comfortable and I forget that I ever had anything but these which fit me so well.

Until one day when I’m standing at the stove and feel the words in my head again. Child, wrong, sad, hurt, boy, belief, family, ignorance, CHILD, CHILD, CHILD. It happens all over again and I think, I will never be able to write a post with all this muck.

So, I don’t.

I let the steam leave my head, wipe down the walls and buy new shoes, hoping that someday their comfort will be enough.

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This is going to seem jumbled for a couple of paragraphs. Please bear with me.

Tomorrow morning, after two months of research, paperwork and relentless phone calls to the Ohio Department of Education and our local school district, my 11 year old son will finally get a psych evaluation. If things go according to plan, he will be diagnosed with an autism spectrum disorder for the third time.

Why do we need a third psych evaluation? Because his autism was never added to the Evaluation Team Report (ETR) at his private school. Without that diagnosis made by a psychologist at the local level and typed on his ETR and IEP (in the public school district in which he has never attended), he is not eligible for the state’s autism scholarship.

Without the autism scholarship, we can’t send him to a new school. Given the reports from his last one, returning is not an option.

Confused? Exactly. There have been six providers involved in this one request for reevaluation (for a disorder with which he’s already been diagnosed). Without the assistance of a very patient administrator and the advice of parents and advocates who have traveled this road before me, I don’t know that we would have found our way.

What I want to know, is what happens to the special needs kids whose parents don’t have the time, energy, resources, or resolve?

I have spent 11 years advocating for my son; I thought I knew what I was doing. I didn’t. I was lost in this process and I was trying REALLY HARD not to be. You can’t tell me that kids aren’t falling through these gigantic cracks.

I know there are good people who are trying to fix the system and I thank them for that. Everyone should thank them for that. My kid will someday be mingling about in society with your kid and it would be great if we could ensure everyone’s future by giving them the best individual education and services possible.

So after I accomplish this latest task I am making a promise to pay it forward and advocate on behalf of those who can’t. I am going to use my voice.

And, it WILL be loud.

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