Wednesday, April 6, 2011

Yesterday I Met A Hero

Last night I went to Ivymount School in Rockville, MD to hear John Elder Robison speak. His new book Be Different was recently released, 4 years ago he released Look Me In The Eye. Both books rank highly on my favorite books of all time list (and I haven't even finished Be Different yet!) and I cannot tell you how excited I was to meet John and hear him speak.

First I hope that you noticed that I said in the title 'yesterday I met A hero' not, 'yesterday I met MY hero'. I learned quickly in his books and in his speaking that I am not the target audience of John Robison. It is my sons who will benefit the most by John sharing his stories. My benefit comes in the form of hope, hearing about his triumphs, his obstacles and his perseverance is like being handed a crystal ball that shows not just one future prediction but an entire film stip of possibilities. What I want to share with you are the things John spoke about that really stood out to me, I also want to highly recommend his books. His writing is fun, informative, interesting and really made me understand Autism more and thus, understand my children more.

The first thing he said that struck me was that he felt he did us all a great disservice in his first book. Now, I LOVED his first book, so... what the heck? He talks in his first book about when he found electronics he found a sort of launching pad. He spends about 2 pages talking about getting an electronics kit, studying it and then he took off to start doing amps and guitars for famous bands like Kiss. That is where he said he did us a disservice. In actuality it took more than two pages to learn everything he needed about electronics.  He mentioned that it was because he was a "failure" at school and had no friends he had nothing else to do but tinker with what interested him. So thats what he did. As he put it, "if you spend 3,000 to 4,000 hours working on something you're going to get good at it. If you spend 3,000 to 4,000 hours working on something and you don't get good at it, THEN something is wrong with you."

The next thing that stuck with me was his explanation of why a young guy who loves rock and roll working in the rock and roll industry for huge bands like KISS and creating really cool stage tools like light up guitars and unique sounds would then leave his job. How about explaining why a slightly older guy who sweet talked his way into Milton Bradley right at the time when toys were becoming electronic, creating patents that allowed for interchangeable cartridge games and making $100,000 per year in the mid-80s would then leave his job to become a mechanic? I use the word mechanic in this instance very loosely, he is a mechanic but owns his own shop and specializes in extremely high end automobiles. The kind that I can't even afford to look at too long as they fly by me on I-95. He said he quit these jobs because he was a failure. He was a high school drop out who never went to college (other than to take apart their electronics), he talked his way into his jobs and then was afraid of "being found out". He said he started feeling like a failure young, like 4 or 5. He was a straight F student and was labeled a bad kid. He didn't find out until he was 40 that he has Aspergers, he looked like all the other kids but just wasn't like the other kids. He didn't have any speech delays or other symptoms for Autism and at that time no one was looking at the troubled kids and wondering if there were underlying issues.  I hate to think that he carried that "failure" label with him for so long even while he was creating ground breaking technology that changed the look of stage performances and electronic gaming.  I mean, really, I couldn't make it though one of Cam's doctor appointment waiting room sessions without his beloved Nintendo DS. It is through patents created by John but owned by Milton Bradley that is the basis for all the games we know and love today.

Aside from his education and career, John did something else that really struck me. He got married and had a son, Cubby. You will learn in Look Me In The Eye that John will call people by names that he feels fits the person well. In this instance, he called his son (who's real name I don't recall) Cubby. There are many days when I think of my sons' conditions and I get really pissed off because I was told that they wouldn't get married and have a family. I want that as an option for them, I want them to feel that they can look for and possibly find someone special who brings them peace and contentment. Because John Robison was diagnosed so late, no one ever put that limitation on him and he not only married once but he even remarried after his divorce from Cubby's mom.  He does say that the relationship is very hard and there is a likelihood of divorce but he has maintained long and continual friendships with his ex-wives. Thats a lot more than I can say for most divorced couples I know! He is writing another book about raising Cubby (I think it is called Raising Cubby) and it is expected to be released end of next year. Cubby also has Aspergers and I cannot even begin to tell you how excited I am about this next book!

I seriously wish I had tape recorded his talk. There was so much he said that hit me between the eyes like an arrow and some things that I felt like a punch to the gut. I hung on every single syllable that he shared with us and felt the frustration, sadness and sometimes excitement in the stories. Yes, even stoic and steadfast me actually found tears in my eyes when he talked about a new treatment that allowed him to see other's emotions for the first time in his life after the age of 50. Unfortunately that treatment didn't allow for that specific breakthrough to be long term but it does add to the big pile of hope that I was amassing.

After a very short 1.5 hours of listening to his stories and watching his beautiful pictures on slides, I took away what I felt was the 2 most important lessons:

  • Emotions. He made it very very clear that when someone tells me that my child doesn't FEEL emotions, then they are full of crap. He said he feels emotions very deeply, deep affection, deep pain, deep sorrow but it doesn't manifest itself the same way it does someone else. The emotional response is also not triggered in the same way. Perceiving and feeling emotions are not the same thing.
  • Failure. I want to quote him here but I didn't take the time to write it down word for word so this is very loosely quoted, "it is not the popular kids with lots of friends who commit suicide." He felt like a failure, he felt like an outcast, he didn't have friends, sounds like the suicide trifecta to me. With this he talked about the program at Ivymount where they have a program for high functioning kids, where they have a place for those "outside" kids to be on the inside. How different would his story be if there was a place like that for him? 
Here's the thing, read his books. Look Me In The Eye is stories about his life with Aspergers, a life he lived not even knowing that there was a reason he was different. The stories are so fabulous that the learning is accidental. His new book Be Different (which I haven't finished yet!) is written in a different way. He used questions he was asked in his public speaking to provide a foundation. What foundation he was missing he found in the DSM manual. He explained that he took all the symptoms listed combined with personal experience to allow for a greater understanding of all the parts that make up Autism Spectrum Disorders. I, for one, can't wait to keep reading and learning. I can't wait for his next book to be published and I truly hope that he will speak again locally. 

Now I am going to bring back out the Lunatic Autism Mom to share with you my insanity. I have truly adored John Elder Robison since he was first published. I read his brother's book first (Augusten Burrough's Running With Scissors) and then read Look Me In The Eye and together they created such an amazing snapshot of a life I cannot even begin to comprehend. I've since been a frequent reader of John's blog, I follow him on Twitter, I've friended him on Facebook and I put a "never delete" on my Tivo'd Ingenious Minds episode that features him.  I truly think he is remarkable. Totally looney right? Well it is going to get worse because I am going to email him and send him my blog in the hopes that he will someday have time to read this post and answer these questions:

  1. When you participated in the study at Harvard that helped you to understand other people's emotions better for a short time, do you feel that being able to see the end result was key to the progress you've made in that arena since? Do you think that it is possible without that insight? I ask because of the way kids are now going through treatment to try and train them to recognize emotions, will recognizing lead to understanding? If those neural connections aren't present in the onset of treatment, are the expectations of treatment too high and thus setting the kids up for yet another failure? 
  2. I have always believed, and stated here in this blog that the high functioning special needs population is the most underserved of the special needs community as exemplified in the statewide programs which have exempted ASD kids for not being "Autistic enough" or by the public school system who have extremely few options, usually inclusion or a classroom that doesn't match their academic abilities. Programs like Ivymount are rare and, even if you are close enough to enroll, prohibitively expensive outside of hiring a lawyer to fight for non-public placement. When you are a parent caught between two impossibilities, what do you do? How do we get people to see that these kids are extraordinary, their potential limitless and that what is available to them is not acceptable? 
Dear Mr. Robison-
Thank you so very much for coming to Ivymount to speak. What you say and write makes a difference. The stories you share give hope and understanding. I am very proud of my 2 sons with Autism and lately things have been really sucky. I really needed some hope and understanding, thank you for sharing. You signed my book To Cameron and Adam and I said thank you. Thank you doesn't even come close but I'll say it again, Thank You.
Maggie Harris

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