Tuesday, September 22, 2009

The Hard Truth: Being Different

I'm a big fan of the web site, AutismSpot. One of my favorite aspects of AutismSpot is the video section. The videos are made by all types of people involved with autism - parents, therapists, educators and people on the spectrum themselves - and they are designed to provide a first-person point of view about all aspects of it.

My favorite contributor is a young man by the name of James Williams. According to his AutismSpot biography, "James is a successful, 21 year old college student studying to become a Special Education Teacher. James shares his experiences and perspective as a young adult living with Asperger's Syndrome."

Since James is 21, he's old enough to understand the subtle implications of his Asperger's Syndrome but young enough to remember what it was like to be a child with Asperger's (even though he was diagnosed when he was eleven). For me, he's the voice of Robbie thirteen years from now telling me, "This is what you should do!"

His most recent contribution is titled, "Being Different". He cuts through to the very heart of the primary issue I've had with Robbie's autism; accepting the fact that his is different. It's not because of how I feel about him but because I'm terrified about what it's like for a kid to be different.

Unfortunately, AutismSpot doesn't provide the ability to embed videos. Here's the link to James's video.

James opens the discussion by reminding us that "kids are cruel". They are. That's just part of life. We've all been through it and, whether we want to admit it or not, we were likely a victim or a perpetrator at sometime during our childhood. For kids in elementary school and junior high school, it's hard to be different. We know this as adults. We have pretty good memories.

He tells about how hard it was to be different and how taunts such as "loser" had an impact on him. Since he could tell he was different, he started to believe them. It wasn't until he received his diagnosis that he could identify why he was different and began to be freed from some of the negative aspects of it. It was in junior high school that he learned, "By telling people, I was actually improving things." When the other kids understood there was a reason for his being different, they became much more accepting. In fact, some even began to help him. Not only were the other kids more accepting, James feels that most children who have been diagnosed with autism can accept who they are.

Unfortunately, kids aren't the biggest problem. Recalling what we were all like in junior high school, I find this hard to believe but James is quite blunt about where the biggest issues lie.

"One of the biggest problems I see is that parents have a hard time accepting that their child is different."

And there it is.

I winced the first time I heard him say it. I'm guilty as charged. I've been that guy and, to a degree, I still am. A child who has high functioning autism or Asperger's Syndrome gives very few physical clues as to their condition. They look just like any other kid. When I first heard the diagnosis, I was adamant that this was not a label I was going to hang around my child's neck. Why should I do that to this beautiful child? I thought it was the cruelest thing I could do ('cruel to whom?' I wonder now). But James's message is clear, "Don't be afraid to talk about autism. Don't be afraid to tell people that your son or daughter has it."

This might sound simple enough and even obvious. But for even a guy who blogs about autism and has written a memoir about autism, I still hate telling people about it for the first time. I really do. If I ever get the book published, you'll read that it took me nearly two years to tell someone about it for the first time and it was a person I'd previous only spoken with once the past twenty years. I selected this person because he had two children on the spectrum and I wanted to hear from someone who knew what I was going through.

That's a long time to be silent about the most important thing that's going on in your life.

I find it's much worse in a conversation than in writing via Facebook or something. In a conversation, I need to develop a whole lot of courage first and then I just blurt it out. After that, it's hard to shut up because I've balled it up for so long.

Joy and I were counseled about sharing his diagnosis by Robbie's grade school counselors. They recommended that we explain the situation to his classmates. Their evidence showed that when kids learned about the situation (even as young as kindergarten) they were much more accepting. They've even seen cases where bullies would protect rather than target kids with autism, if they know what was going on. I hated the idea of telling the kids with a passion but I went along with their advice - and it was excellent advice. Fortunately, one of the counselors has been kind enough to do the communicating to the classes. His classmates over the years have been nothing but helpful and accepting of Robbie, even during some of his meltdowns. I'm always touched by the kindness they show him.

I don't know now if this is unique for fathers or if there is some other reason I reacted this way. It's clear I'm not the only one. Like the title says, I went into Autism World "Kicking and Screaming". Now that I'm there, I still have the urge to throw the occasional kick here or there once in awhile.

Wednesday, September 9, 2009

The First Days of School: Charlie Brownish Hope

It only seems like yesterday that I was posting about the last days of school. But here we are again.

After what can only be called a very successful summer (with several bumps in the road), I still found myself extremely nervous about the new school year. Maybe it was the "I hate you!" Robbie shouted repeatedly as I dragged him into the hellish first day of summer school in June. Maybe it was the "I hate her! I'm supposed to be in Ms. Soandso's class!" storm we endured the night before the first day of school. Or maybe I'm just a worrier.

Three weeks into it, school has been a borderline miracle. We have yet to have a morning meltdown (including every step: wake up -> get dressed -> get in the car -> get out of the car). He's doing all his work in school. We've had zero bad reports so far (other than a few minor concerns, like he didn't want to do something in gym or he didn't want to go to speech and be separate from the classroom).

Why the big change? There could be a few reasons:

1) He does not want to go to summer school next year. Joy has done a wonderful job of explaining the cause and effect of his school behavior and summer school. Last year he "qualified" for summer school. He really doesn't want to do it again.

2) He has an excellent teacher. She's certified in special education and seemed to be ready from the start to have Robbie as a student. We met with her a few days before school and exchanged ideas. She met with his teacher from last year to learn what worked for her. She was prepared.

3) He's taking a new medicine. He recently switched from Strattera to Concerta to deal with ADHD issues. I'm glad Joy made this decision with his doctor. The changes were almost immediate and all positive.

4) He wants a Wii for his birthday (which is Monday). We'll see on Tuesday if this is the driver.

We're trying to enjoy this the best we can but it's hard not to wait for the other shoe to drop. Or for Lucy to pull back the football. Or some other cliche. When these parties end, it's a crushing blow. It's hard not to let them erase the good experiences no matter how long their duration.

For now, we're just going to enjoy the hell out of it. If something changes, it changes.