Wednesday, October 24, 2012

Harder Than You Think

This post is about the R word... No, not that one, Regression.

Regression is a normal part of any rehabilitation process. We've all heard the old saying of two steps forward one step back, and in no place is it more apropos. My son hit a major regression this summer that extended dangerously long into his first grade year at school.

When Kindergarten ended, he was a superstar. Our annual IEP happens to be near the end of the school year and leaving the annual last year none of us could have been prouder. I remember a feeling of triumph, accomplishment and pride when the school psychologist announced to us that she felt Jack might not need his aide next year. We had no behavior goals in the new IEP. Let me write that one more time. We had no behavior goals in our new IEP.

We had done it. We had beaten autism. My son was going to be "normal" by first grade. Screw all those people that said it couldn't be done. Screw all those people that had "misdiagnosed" him. My wife, myself, and mostly my son had put in the necessary hard work to overcome this so-called disorder.

And then the regression started.

It was gradual over the summer. He went to summer school. He went on vacation for a week. He went to a day-camp at a special needs school. Behaviors getting progressively worse and worse. Mastered skills slowly slipping away. Stims becoming more and more physical, more and more aggressive, and, quite frankly, more and more alarming.

By the time first grade had started, we were back to where we were at the beginning of Kinder. Jack was removed from his General Ed class daily because of behaviors, or disruptions, or aggression. All the "experts" gave us the usual answers. "It's a tough transition", "First Grade is more demanding", "It's just a phase". But they were the same people he knew in Kinder. They were secretly as confused as we were.

Then rock bottom came. I got called to pick up Jack from school... again. This was becoming commonplace. This time, however, his aggressive outbursts had sent his BIA (one-on-one aide) to the hospital. I'm using hyperbole for effect here. She was fine and it was incidental contact that lead to the injury, but the fact remained the same. I was called to the principals office to take him home... again.

It was in that final meeting I said the words I regret the most. I am embarrassed to admit it, but I looked in my son's eyes and said "Jack. You are embarrassing yourself. I know you are capable of so much more"

I had done it. I had publicly blamed my son for his actions. I was the one who had publicly shamed him. I was the one who forced him to wear that scarlet A on his chest. It was me, his biggest champion, that had expressed my disappointment.

And we went home... silently judging each other.

I feared CDD (Heller's syndrome). I thought we were losing him for good. I thought I may have only had a few weeks left with him here. I remember later that evening, staring into his eyes while he stimmed through flipping the pages of a picture book, thinking he was gone. The sound of David Bowie singing "Can you hear me Major Tom?" playing over and over in my head.

And I cried. For me. For my wife. For his sister. For my sweet, sweet boy.

He came around. School started to get better. He started to spend more time in the class... "accessing the learning environment". The aggression died down. The behavior improved. The skills slowly returned.

My friends, it never ends. Parenting never ends. To quote a favorite movie "you never cross the goal line and get to spike the football".

My wife saved me. She was the one that came in and took over. She decided she was goiong to right the ship and stay the course. Our in-home ABA therapist saved me. She didn't panic. She stuck to the plan, not only for Jack, but for me, too. The school saved him. They didn't give up, when they easily could have. I am eternally grateful to all of them.

If regression is a bitch, then disappointment is her sister. You might flirt with her, but you don't want anyone to know.

Lean on those around you. Take advantage of that friend that is trying to lend a hand. Tell your spouse how you feel. Tell your doctors that you're scared. Allow yourself to be sad. Stay the course with what you've chosen. Admit you are human. Admit you are fallible.

Above all else, don't forget to love and never, ever, give up hope.

None of us are in this alone.

Sometimes parenting is harder than you think.

Wednesday, October 17, 2012

Bicycle Race

First grade has not been easy. We are two months in and we are finally spending quality time in the classroom. We are no longer having aggressive or violent outbursts. My wife and I are trying our hardest at home to keep up the academic skills that he has been missing by spending so much time out of the classroom, and it's very hard.

We are so concerned these days that we may have pushed for bad choices regarding placement. Let's rephrase that to "inappropriate" choices regarding placement. We are beat over the head with phrases like "least restrictive environment", and "access to the learning environment", and "disruptive behavior"... so much so that they have almost become pronouns in our house. But there is good news. We are, at long last, moving forward again. We took about 8 steps back, but we're 3 or 4 steps forward.

That's all I want to say about Jack's recent regression right now.

Here's what I want to say about Jack.

Jack turned six about 2 weeks ago and for his birthday, I bought him a bike. Jack has very poor proprioceptive processing skills and presents as extremely clumsy. Most children can ride a bike with training wheels around 4 years old... some earlier, some later. There are so many moments that we as parents of special needs children will be robbed of.

But not this one. Fatherhood may not be exactly what I expected it to be. I figured I'd have all those great Americana moments that all fathers have.

And here it is. I got to teach my son how to ride his bike.

So, what do we say when Autism comes to take away another memory?

"Not today"

That's my son. Riding the fuck out of his new bike.

Thursday, October 4, 2012


I've been reading all morning about how wonderful it is that President Obama mentioned autism in the debate  with Mr. Romney last night. I agree. Wonderful indeed.

Huge strides have been made in the last four years in autism awareness, research, services, and public perception. The advocacy groups are growing in numbers and funding. We're crashing down School Districts, City Halls, and State Capitols everywhere. We are making progress. Insurance reform for Children with Autism moves forward every day.

But that is on a local or state level.

Mr. President, you mentioned increased services, research, and funding for autism in the debate last night. I "HOPE" you mean it.

Because this is the last time you mentioned special needs.

That was a little less than four years ago...  And you have done nothing to make up for it.

Our community is strong, powerful, empathetic and votes.

I'm glad inspired you included us in the debate (heck, the other guy didn't even mention us), but I "HOPE" you truly are interested in moving "FORWARD", and not just trying to get our votes so you can ridicule our children on late night talk shows again.

We will give you the ball again... let's see if you can medal... Special, Para, Junior, or Olympic-style.

Thank you.

Monday, October 1, 2012

Who Are You?

I am a stay-at-home-dad raising a child with high functioning autism. I am many other things, but that statement has come to define me.

We constantly fight to not have my son labeled by his disability, but forget to fight for ourselves. Autism should not define my son. Autism should not define me.

I think a lot of us forget this for ourselves. I talk about my son and his disability all the fucking time. My wife has to remind me that people care about Jack, but not as much as I do, so keep my answers brief and to the point when asked how he is doing. When someone wants to have a long conversation, you'll know. I apologize to those of you I have cornered.

I write a blog to talk about this. Go back and read some articles if you want to hear about Jack. Check out the Facebook page if you want quick updates, or witty stories, or complaints.

My sister called for my birthday last year and asked how I was doing. I told her that Jack was doing really well in school. "Great, but how are you doing?"

I exist beyond my son.

Today is my 7 year wedding anniversary. Those of you that know me, also know that I married up... way up. I am a damn good husband.

I studied English and Screenwriting in College. I have been published (and paid) numerous times over the years. I am a damn good writer.

I received an email from an old friend responding to one of my posts reaching out to help. "You have helped me through so many dark places in my life in the past", is what she said. I am a damn good friend.

I eagled the 15th at Scholl Canyon Golf Course. I'm not a damn good golfer, but I'm improving.

This blog is about raising a child with autism. This is an appropriate place to discuss it. I am a damn good parent.

I am a stay-at-home-dad raising a child with high functioning autism.

I am.