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Interview with Sam (Part 2) PDF Print E-mail
Written by Gayle Nobel   
Wednesday, 27 May 2009 01:00

 Here's where we left off in Part 1 of my interview with Sam, a young man who has Aspergers. You can read Part 1 in the archives by scrolling down to the bottom of this blog section.

Me: What’s the best part of having Aspergers?

Sam: You get to be different, I wouldn’t consider myself boring.

Erin: There are very few times when the three of us are together that we don’t laugh ourselves silly.

Sam: There have been a lot of very intelligent people that are on the spectrum. Albert Einstein, Thomas Edison and Benjamin Franklin all qualify now. We could throw around names all day. We could throw Bill Gates in there. It’s really just a different way of looking at things, I guess you could say. Tony Atwood said it’s the Aspies who keep humanity interesting. We’re the ones that add flavor to humanity. Being sensitive to noise isn’t necessarily a bad thing.

Me: We all are to some degree.

Sam: I don’t know if you’ve ever read anything by Tony Atwood. In his book called "The Complete Guide to Aspergers Syndrome,” he tells this story about a little boy who had to get on a train on a regular basis and he managed to tell his family twenty minutes before the train got there. When he was asked how he knew, he said could hear the sound and could feel the vibrations in his tummy. So it’s not necessarily a bad sense.

Me: Do you think Tony Atwood is pretty on target about what he says about Aspergers?

Sam: I haven’t read a lot by him but what I have has been very eye opening. I have one of his books at home. It was very helpful to me as far as understanding who I am and why I am the way I am.

Me: What are your quirks?

Sam: I do stim a little bit in case you haven’t noticed. My legs shake, I do various things with my hands and I love the smell of paper and the feel of rubbing it between my fingers. Somebody was saying it’s not a matter of whether or not the activity itself is so strange; it’s a matter of degree. As far as strange interests, I like collecting old radio programs and shows. I enjoy listening to them and collecting them. I like to read and classic movies.

Me: So do you like to talk about the movies.

Sam: Yes , I love to.

Me (to Erin): Do you find it interesting?

Erin: Yes, I like the fact that they’re not anything I have experience with.

Me: You sound like you’re in a really good place about yourself? Is there anything you are working on that you would want to change about you?

Sam: The only thing I would want to change is the living situation. That’s really it, to be honest. I’m not the type who would cry about being on the autism spectrum. If people can’t accept somebody for who they are, it’s their own fault. Especially in this day and age where there’s a lot of information out there about Aspergers. I’ve run into my share of people who saw how I was and wouldn’t really accept that. The reason I don’t go out is that one night the group I was with didn’t know how to read my face or thought I was lying. People with Aspergers, even when they’re honest, all have a liar’s face. We’re known to be brutally honest to the point of being a fault.

Me: What do you think when you hear about the movement to cure autism or “fix” people with autism?

Sam: People that really try will actually pass themselves off as non-autistic and that’s actually to their own emotional detriment.  That’s why I think the suicide rate is so high.  These people are being inundated with cure autism, cure autism, cure autism. Nobody is really approaching them with the idea that we accept these children as they are.

Erin: Do you think these kids know that they have autism or is it just they know that they’re different, they know something’s difficult and they know that they can’t connect, and that is why they want to kill themselves?

Sam: Yes, that’s very true. I wanted to kill myself when I was 10, and it popped up again at 12 and 14. It’s just that there was really nothing out there for me. There were no friends and nothing to help me get plugged in without having to pass off as normal. When we talk about cure we can end up producing an atmosphere where people on the spectrum are pressured to be something  they’re not. I think it’s to everybody’s best interest to learn how to embrace each other and not try to cure each other and make room for everybody.

Me: Do you think a lot of people with Aspergers feel the same way?

Sam: Yes. Alex Plank started a website for people on the autism spectrum called wrongplanet.net. He got tired of not having anything out there for people on the spectrum so he created his own internet community, and now it’s got 3000 members. There’s also the autistic self advocacy network and it’s definitely not pro-cure. Its attitude is “nothing about us, without us.” The videos the president puts out say “anti-cure, doesn’t have to mean, anti-progress.”  I don’t want it to sound like anybody’s rejecting the idea of treatment.

Me: For my son, my goal is to help him be the best he can be, and we keep going toward that.

Sam: Have you ever watched the movie “Autism, The Musical.” It’s a documentary of five people putting on a musical about autism.  The father comes out and talks about the different stages he had to go through with his child, and they are actually similar to the stages of losing a loved one. First you want to fix it; it’s a natural fist stage, but you have to move on. As the years went on, it wasn’t happening, and he became depressed. As he moved through his depression, he learned to accept his child. Once he learned how to accept his child and how to love the child. I sometimes suspect when I see parents of autistic children on TV, they might be fixated on the first stage.

Me: What would you advise parents?

Sam: Encourage them to love their child for who they are and allow themselves to actually grieve the loss of their dreams.

Me: Where do you see yourself in the future?

Sam: I would like to be living on my own. I don’t want to get married. I want to keep my job, work my way up and get better schooling. I might go back to school, but only if it’s a good school for accommodating special needs. I may get help from SARRC for assisted housing.

A final thought : Sam wishes his parents would learn more about autism.



Last Updated on Thursday, 28 May 2009 11:08
 
Get Fascinated! PDF Print E-mail
Written by Gayle Nobel   
Thursday, 14 May 2009 11:20

Here are two places to Get Fascinated!

Fascinating Authors Interview

Fascinating Authors Audio Interview

Last Updated on Thursday, 14 May 2009 11:27
 
Attitude Is Everything PDF Print E-mail

 Listen to some musical inspiration.

My daughter, Leah sings and plays "Attitude Is Everything" which she wrote for performance with her ukelele.

{enclose Attitude_Is_Everything.mp3}     

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Leah

In case you missed the first Attitude Is Everything post, I am pasting below so you don't have to scroll through previous posts.

AAAAttitude is everything… la la la. The lyrics bounce around in my head- one of those songs that gets stuck and can’t seem to escape from the mental chatter of my mind. I guess this is a good sign. And, probably a healthy mantra to get trapped within my neural synapses for awhile. I can always benefit from the reminder.

I was watching the video of my daughter Leah singing and playing at a local club. Much to my surprise, she had written an “attitude” song for performance with her newly acquired ukulele. As usual, I was dazzled by her stage presence and talent as I watched and listened.  It doesn’t seem that long ago she was draped in layered costumes and beads singing Somewhere Over the Rainbow on our brick fireplace.   I was  definitely feeling a bit nostalgic.

February is almost over and has been a month of milestone birthdays in our house. Time is flying by faster than ever. Leah just turned twenty and her costume and beads have been replaced by a classy hat and guitar. When Leah was born, my plate was already full and overflowing. I was caring for Kyle, who at that time, was besieged by seizures. I was trying to figure out the autism thing and had just begun an intense home program for him which required ongoing recruiting and training of a support team. I was also mom to my daughter Rachel who was a typical, active two year old. So maybe from a practical sense, it wasn’t the optimal time to add another child to our family.

Thank goodness we decided not to be practical. As it turned out, this was absolutely the best time for Leah, our precious blonde bundle, to come into our lives.    Leah added that extra dose of healthy balance on the other side of living with autism. I’m reminded once again; siblings are such a gift, offering a different experience of mother hood. Like her sister, Leah was a flower who with care and nurturing, bloomed on her own. There was no way autism was going to swallow me up now that there were two amazing little girls to love and care for. Somehow it always comes back to balance. Isn't this something we are all striving for in one form or another?

I don’t know if I ever got the balance thing just right. I’m still working on it. But what a joy it has been to be mom to Leah. She amazes me with her depth and creativity.  I admire her confidence and have goose bumps as I watch her bloom into a wonderful young woman. Her talents are many but more importantly, she is extremely thoughtful, kind, and very wise for her age.

Another kid to gush about? You bet.

Gayle

PS. Sometime very soon, you will be able to click here to listen to Leah's song “Attitude is Everything”. Stay tuned.



 
Stop, Drop & Read PDF Print E-mail
Written by Gayle Nobel   
Friday, 17 April 2009 17:35

I'm branching out these days :-) and it's fun!

Stop, Drop and Read

Last Updated on Saturday, 18 April 2009 21:33
 
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