A view of autism from along the spectrum

I do my best to present a positive and constructive outlook. For those times when I lack the emotional energy to do so, I try hard to avoid being negative. I don’t like listening to complaining, whining, and unfair criticism, so it’s only fair that I avoid doing this myself. Being negative is usually a last resort.

I chose to ‘go negative’ in a recent interaction with the local school district. Our Director of Special Education is retiring this summer and we expect that the favored candidate is a particular employee already in the school system. My wife and I believe (very strongly) that this individual does not have the skills needed to successfully interact with parents of children in special education. Considering that the Special Education Director is generally the last person able to prevent a disagreement with parents from moving to the legal system, I consider those ‘people skills’ very important.

Unfortunately, it’s very hard to present evidence to the personnel department and the school board to support such a position about ’soft skills’ like getting along with others. There’s no way to get this across to someone without being negative, even if you can back it up with lots of examples.

The retirement of our director caught us somewhat by surprise. We’ve been paying more attention to the kids than we have to finding and reading the minutes from the school board meetings. The hiring process started before we even knew the current director was leaving. There was no time to engage other parents to join together in advocating, although we knew a lot that felt the same way. Instead, we briefly spoke at a school board meeting indicating what type of skills we believed were necessary for the role and fired off a quick, and very negative, letter to the superintendent, personnel director and the school board indicating why we felt this potential candidate would not be good for the district.

With more time, and perhaps more savvy people skills on our part, we could have spoken to each school board member personally. We could have established a polite relationship that would help balance the negative message that we had to deliver. We could have worked behind the scenes and potentially had more of an impact than 3 minutes at a school board meeting allowed. Mabye this could have developed into a little more influence in current and future matters that the school board faces concerning special education. All of these things needed more time.

We made a choice. The dozens of hours required to take a softer approach were better spent on our kids and our jobs. I decided to spend only a single hour writing a letter describing our view of this individual’s past job performance, even if it’s looks like I’m a complainer and a trouble maker.

Ultimately I realized that the ability to ‘go negative’ is just one of many tools that we need to use to advocate for our kids. I prefer to keep this particular tool in the toolbox, and use others to do most of my advocating. But I’m not afraid to take it out and use it.

Harriet McBryde Johnson is a lawyer, activist, and writer. She’s been mentioned in several other blogs recently, but when I read them, I failed to dig deep enough to get to know much about her. While I was not able to attend the public speech she gave last week in the area, an article in the Hartford Courant provided some insight to the person she is and the message she delivered last Monday. She is living her life in a way that leads by example.

I won’t repeat Ms. Johnson’s story. It’s available in the article, in her book and elsewhere. Instead, I’ll share the most compelling aspects of the little I’ve learned about her. Ms. Johnson has dealt with what many would call a disability since birth. She describes to the Courant her experience as a student when she moved from a ’self contained’ program to a mainstream setting. During this time, she felt that she had strong ties to a peer group in the self contained setting and lost those relationships when she was moved to the mainstream setting. While the mainstream setting provided ‘typical’ peers, it did not provide the peer support she previously had.

The experience carries a powerful message about peers, and how much is given up in the name of mainstreaming. It’s an example that all parents need to consider when making educational choices for our children. We parents, and others involved in planning their programs, must make sure that the educational setting provides the appropriate peer support our children need.

Johnson has written a memoir and recently published a novel, Accidents of Nature. In the novel a teenager with cerebral palsy has some life changing experiences when she attends a camp and meets other disabled teens for the first time. It sounds as if she has drawn on her own experience to present an aspect of living with a ‘disability’ that is often overlooked. Connecting with others that have common experiences is such a fundamental part of human nature, it’s amazing it’s so often over looked when we seek out what’s best for our children.

We finally bought an easy button this week. In case you’ve missed it, the easy button is part of a marketing campaign by the office supply retail chain Staples. The slogan for the campaign is “That was easy!” To go along with the slogan, Staples sells large read buttons with the word easy in big white letters on the top. When you press the button, an electronic voice says “That was easy!”

A talking button is a pretty silly idea, which is exactly its appeal, at least to me. And the boys absolutely love it. I expected it to be just silly distraction, but after a few days, I see that it is actually a multi-purpose tool in a house with boys on the spectrum. Depending on the situation, pushing the button has been:

• A new form of currency in a token economy.
• An opportunity to share a little public celebration (RDI style) for any feat accompli.
• A simple provoker of giggles and silliness.
• All of the above.

I’ve already seen benefits worth far more than the $5 I paid for the button. I also admit to buying my own button on my desk at work.

Requisite disclosure: I don’t work for Staples or own Staples stock, or know anyone who does. However, I do confess to an almost compulsive need for neatness and organization and can wander the aisles at Staples for long periods of time, in much the same way that I can lose myself in a hardware store.

As soon as I publish this blog post, I’m going to go push the button! That was easy.

As I’ve mentioned in previous posts, the past few months have been particularly challenging for one of my sons. I’m constantly thinking about ways to help him.

I realized today that there is one thing that I want to help him learn: knowing his limits. This may sound contrary to the popular notion that we should tell our kids they can achieve anything they put their mind to. Dreams are great, but on any given day, in a given situation, with a given set of constraints, we all have limits. Tomorrow we can change these limits, but today we still need to deal with them.

I’d like my son to be able to recognize when he’s in an environment that has become too simulating. I want to teach him to recognize the feeling that we all know as anxiety. I’d like him to realize when he’s getting tired. I’d like him to be able to identify situations that begin to cause him stress. I’d like him know when he’s had enough.

He’s actually already learning to recognize all of these limitations. He probably recognizes them as well as anyone his age. The challenge for him is that the environment exceeds his ability to tolerate it more often than it does for peers.

I really don’t care that his limits are ‘different’. I’d just want to help him recognize them so he can adapt / avoid / adjust or whatever works for him. He has helped me learn a great deal about my own limits. This past weekend, my family did some errands and visiting and spent a lot of time in the car. On Saturday’s trip, I found myself listening to a radio station that my wife chose while hearing periodic shouts in the back seat along with music playing from a game boy. We had lots of stop and go traffic mixed in with rain to add further stimulation. We arrived home and I was feeling more than a little agitated. I realized I was at my limit and I told my wife “I need to punch out for a while”. I had some downtime and got back to my ‘happy place’. We did the same routine on Sunday. This time my wife drove and I brought my iPod. It was a much better trip.

I would have never recognized my own limitations in this situation if it hadn’t been for my son. Without realizing it, he taught me to recognize when my environment gets to be too much. He helped me learn that those limits are OK and that I can chose how to adjust.

Its time for me to help him learn the same thing.