Susan's Blog

Sunday, October 1, 2006

What’s Your Story?

Yes, another blog post! Can you handle it?

Okay, let’s just say I’m working on a book that is about living well with autism. I need a sample chapter PDQ, so I am asking all of you autism parents to think about the worst thing that ever happened, the worst crisis ever concerning your autistic child — this could be how others treated him/her; a school system idiocy; a total meltdown; an embarrassing episode; a really annoying behavior. Now don’t worry, this is not a book that will denigrate autistics; it will be a book that illustrates the entire gorgeous and horrifying, boring and mundane, the spectrum of life, the panoply of being, whether autistic or neurotypical, and how to figure out happiness moment-by-moment living with an autismtinted family life. After you have described said crisis, briefly tell me, what did you do about it that resolved the problem? And, what did you do to make yourself feel better while it was happening?

Email me a little summary or leave a comment with contact info (email or phone). Then when I’m ready I may contact you for an interview and you will be one of the Voices of Experience in my new book.

And thank you very much.


The worst thing I’ve ever experienced was the social worker in town who told me that I can’t give her up for adoption (not that I wanted to, I was asking for access to services!!!) because retards don’t get adopted!
The backstory? I’d been told that our CPS office had access to all kinds of services, I just had to call and ask. After explaining that Alena never slept, barely ate, and was impossible to take out of the house because she rus away, I got that gem. When I hung up, I started crying, only to have the phone ring back. CPS was coming to do an investigation because I was obviously unfit if I wasn’t able to handle a “little problem like a behaviour disorder”…

— added by Anonymous on Monday, October 2, 2006 at 8:17 am

I will send you a story, but it is so painful to even relive some of these horrible experiences in my mind, nevermind write them down!!

It gives me some sense of the courage you had to write A WHOLE BOOK about Nat.

It is going to take a few days.

— added by Susan on Monday, October 2, 2006 at 9:01 am

I have a story about the night Sam put his head through the sheet rock with his head banging, this was before the headbanging…What did we do? We padded the entire room, got him a helmet and cried like babies watching him from a video monitor. This was by far I think the worse part of the autism for me..Watching my child injure himself.

— added by Kristen on Monday, October 2, 2006 at 11:49 pm

I have a thing that I have written that I call Charlie 101, but none of it is in short story form, it is about 60 pages long and is in MS word format. I keep adding to it as each year goes by.

I give it as a primer of sorts to all of the people who interact with Charlie as teachers/wrap around workers, etc., but there are lots of ups and downs in there from his beginning on to the present.

If you would like to read it, let me know, I can email it. Additionally, if any other readers would like to read Charlie’s story, drop me a line. I have emailed it to other parents of kids with autism and those interested in working with families like mine.

— added by Mom on Tuesday, October 3, 2006 at 8:18 am

I’m going to give you one that was just plain wierd and scary/frustrating in a wierd way.

Back in March we took our son to Charleston, SC to see a new behavioral and development specialist. That’s a six hour drive from where we live. We were down there for two nights, then drove half the way back home on day three and spent the night in another hotel. Wes loves hotels and the indoor pools, so he seemed to be having “fun”.

On the last day, we set out for the last three hours of the trip home. Wes started nervous laughter, within minutes of getting on I-95. He simply couldn’t (or woulnd’t) stop. After about two and a half hours of this, I played music that will consistently make him cry (big aligator tears but not hysterical or anything) to see if it would stop him. The result: Big alligator tears and continued giggling. I was getting frantic(and I should confess, I have a substantial issue with incessant noises so I was going nuts too). I thought: “My God, has he snapped?” I even asked my husband if he thought we should get him to an emergency room. He was nonchalant about it and just shook his head.

In the end, as soon as we arrived at home, the laughing stopped. Instantly. He was just back to his usual self. I can only assume that by that day he had gotten so out of his routine that he sort of folded. Who knows? Note: I have to take him back to Charleston on Oct. 20th. I wonder if I’m in for the same “treat” this time around.

I wasn’t sure of your email address to send this via email. It didn’t auto-fill when I went to that form. I’ll be happy to provide contact information if you want.

Good luck with the new book. MPWA was most excellent!

— added by Lisa Lockhart on Tuesday, October 3, 2006 at 7:14 pm

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