I have NO IDEA what normal is anymore

One of the hindrances of my first born having Asperger’s is that my second son by default (and statistics) should have some issues himself. He should fit somewhere on the Spectrum, maybe close or maybe far away from his brother.

At first, we thought he kind of did. His ability to transition was not so great, and his meltdowns were epic. We had him placed in an ESE PRE-K program from 3 years of age until he went into Kindergarten. He struggled at first in Kindergarten, but we had an IEP that carried him through until he was 6 years old.

Then he aged out. They dropped his IEP and he was totally mainstreamed.

He’s done well. He’s in first grade. He’s socializing, and acting like any typical 1st grader. If by typical you mean he’s socializing too much and not following directions.

Those things he does beautifully. Those things he does too well.

Those things his brother does too. The one with the Autism. But in his case, he has accommodations that factor in those issues and modify his work slightly. We can also play with other factors to get the best work out of him depending on the subject. We can make things as visuals to help him get the work done faster, better, easier. Whatever it takes.

The little guy? Has no supports whatsoever. He’s on his own.

So when I go to Spiff’s IEP meetings, I see a wealth of accommodations that would also help his brother. I mentally check off the list in my head of ways, if only, we could help him with his work. To help his self-esteem. To stop the flow of orange and red stars into my son’s agenda.

(Red and Orange stars BAD, Green Stars GOOD.)

But I can’t. there is nothing I can do. I can and DO work with him, one-on-one at home with his homework, but in the classroom, where it counts, I am powerless.

Apparently, so is he.

I’m told this is all normal. What Scamp is doing in class is typical of most first graders. “Just watch him!” and “It will all work out”. “Don’t worry!” is my favorite.

Worrying is what I do. I’m good at it. I have a black belt in worrying.

Honestly? I wouldn’t know what normal was if it came up and introduced itself.

Isn’t that sad?

In my house, EVERY DAY is World Autism Day

I’m not sure if you are aware of this, but I have a child who is Autistic.

You may not know, or even realize it when you meet him. It might take a few minutes. Or an hour. But at some point when you meet my son, you will begin to notice he acts different.

It might be the way he flaps his hands. Or the way he hums to himself. Or the way the conversation he has with you keeps ever-so-slightly going back to the things he likes. It could be because you notice the things he’s interested in are younger than he is; or he talks older than his years. You might notice his anxiety.

But, if you don’t realize it, that’s okay too. That’s okay because we have worked very hard to help him fit into society’s mold. We have embraced Early Intervention, ABA, ESE, Inclusion, and a myriad of other therapies and interventions. (Thank you, Quest Kids and UCFCard!)

In short, we have worked very hard for you not to notice the Autism.

However, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away.

And while it is okay with me, it is clearly not okay with society.

I say that because the media heralds the “Recovery of Autism”; that “Autism is Reversible”. I guess in some cases it could be.

Just not in any cases that I know of. That I personally know of.

Not to mention, the cases that are brought out to the media are the young kids. The ones who benefit from Early Intervention. Many Autistic children will benefit from Early Intervention therapies (my son did!). The articles about older kids are usually how they are coping, how they are adapting to society. How they are dealing. Because it is difficult. Because it is hard.

These young kids grow up. They become adults. And while Early Intervention can and does help Autistic kids, those kids get older; and as they age, the therapies, the interventions, the assistance gets less and less, until there is no more.

Until they are totally on their own.

So today, on World Autism Day, while we should celebrate our successes and appreciate how far we’ve come, we also need to realize how much further we have to go. We need to reevaluate how we help our children grow into and become adults. Interventions and assistance should not and can not stop when they need us the most.

And they do need it. Don’t be fooled.

Starting today, let’s discuss what we can do, how we can do it, and what we need to do to get this ball rolling along.

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Crossposted at Autism Sucks

A Face of Autism

My boy and me, February 2009

April is Autism Awareness Month.

What is Autism? Start Here.

How has Autism affected us? Here’s a good place to start.
All of my posts are not labeled, so feel free to dig around.
(when the new blog goes live I’ll have it all organized and pretty)

Have more questions? Here’s more answers.

Curious about Spiff’s particular form of Autism? Here’s the deets.

Thank You.