Wednesday, November 17, 2010

In praise of the genuine

Last night I went with my friend Becky (also mom to an Asperger's kid) to hear author Jesse Saperstein talk about his book "Atypical- Life with Asperger's in 20 1/3 Chapters". Both Becky and I had read the book within the last week and enjoyed it- in places it was hard to read, but other passages were laugh-out-loud funny. Jesse speaks much like he writes- with honesty and lots of humor. Besides the obvious inspirational quality hearing him talk about his life, failures and successes brought me, I was deeply impressed by his genuineness. After the talk, Becky and I stood in line to get our books signed, and it was a long wait. Jesse took the time to speak to each person, learn their name, and sign their book with a personalized message. If there's one thing that many of us in the ASD community like to do, it's commiserate and share our experiences with others who are in a similar situation. To be able to converse with someone who has lived 28 years with Asperger's in the neurotypical world (1/2 of that time undiagnosed), who has experienced both the best and worst that life so far has had to offer, and who appears to be on the road to a successful life is a rare opportunity. My impressions of Jesse were mainly that here was a real person, someone who tells it like it is, is often brutally honest, but with whom you would always know where you stood. I wonder when it occurs in a person's life that they have to be on guard for people not being real. I won't say I'm especially suspicious or even wary of people I meet, usually someone has to prove themselves unworthy for me to sense they are being fake, but my question is, why is this the way things are? Jesse mentions in the book that things would be so much easier if neurotypicals would just say what they mean instead of playing games like avoidance or ignoring.
I'm not exactly innocent of practicing what I preach, but I have to admit I find it refreshing to be around people whom others might find blunt, or even tactless. Jesse says he had to learn compromise to have a degree of success in the real world. If the art of compromise means game playing, the use of it is probably questionable. I'm all for sparing people's feelings, but how often have we all had thoughts of things we wish we could express, things that might even be viewed as constructive and useful critcism? If there was a way to meld the two concepts together- tact and honesty, probably most of the world's problems could be solved.
In the meantime, I'm glad the Jesses of the world exist. I hope I am working on guiding Sam down a path where he can be both genuine and successful. Some days are harder than others, and it seems like we'll never get there, but hearing stories like Jesse's give me hope that things can work out.

Sunday, November 14, 2010

I'm not going to let myself get dragged down!

This has been my latest affirmation for the last couple of weeks, and it's becoming a mantra as the tsunami threatens to pull me under......

Sam's level of anxiety seems to be steadily climbing. Of course 24/7 he's not completely anxious, but the periods of anxiety are now daily instead of weekly. His sleep pattern has taken a good hit, and after the 5th time of visiting his room in any one evening, the rest of us are getting pretty anxious too. Anyone who knows us remembers that sleep is one thing that we have not had many issues with over the years. We would hear the horror stories of other parents of spectrum kids who tore their hair out getting their kid to sleep in their own bed, getting them to sleep PERIOD, and we considered ourselves lucky. In the last month, we've had to deal with Sam crying, complaining his room is too hot, clock watching and having it stress him out so much that we had to remove the clock from his room, experimenting with different bedding and blankets, staying up later, taking a small dose of melatonin, etc. The bottom line to all this is that he is stressed out over who knows what, doesn't know how to explain it or deal with it, and so the long trip down the mine shaft of darkness continues.

This trip is not unfamiliar to us. We've been here before- pretty cyclicly for the last few years. What is different this time is that I know it's been coming for a while, and so far I'm refusing to give in. My desire in this go-round is to attain some level of understanding into how Sam is experiencing this anxiety, to get him to some form of understanding, and to develop a "tool box" of strategies to use when anxiety come knocking.

In crisis situations like this, Tom tends to look outwardly for blame. What bad things are the kids in school teaching him? Who is picking on him? What are they making him do that he doesn't like? I know better than to think things are that simple. There is no quick band-aid that will make this disappear. What it means is more hard work for all of us. We didn't get an instruction manual with Sam. (not that we'd have read it anyway) I feel like my parenting journey has been one science experiment after another- the very same strategy I accused Sam's kindergarten team of employing 4 years ago. I can't say all the experiments have been failures- in fact I think my instincts are pretty good as far as knowing what interventions might work.

Times like these make my own anxiety so intense that I sometimes get swept up in the storm momentarily, then feel like shit after it's over for giving in and being human. I try not to beat myself up. I'm picking myself up tonight and dusting myself off, determined to re-entrench and not get swept away by the next tidal wave that will inevitably arrive in the near future.