Saturday, December 15, 2007

Today Was Good.

Today I attended my first ever autism event; Understanding Autism: Individual, Sibling and Parental Perspectives.

It was held at Caldwell College in Caldwell, New Jersey. The facilitator was my friend, Nicole Turon-Diaz.

The keynote speaker was a young man with autism. His name is Taylor Cross. Taylor created a film called Normal People Scare Me.

It was a treat to view the film, which is available on YouTube, Taylor gave a speech and he along with Amy Gravino, conducted a question and answer session.

Taylor and Amy are two young people with autism. Two talented, bright, and articulate people with autism. I enjoyed meeting Taylor and hearing about Amy's book project. Amy is a graduate student and she is writing a book called The Naughty Autie. Her book will deal with socio-sexual issues of young people with autism. I think that is awesome and I can't wait until her book is released.

Keri Bowers, the mother of Taylor Cross, also participated in the presentation. She is an advocate and she produced a film called The Sandwich Kid. her film gave perspectives of siblings of people with autism and other disabilities.

The program was informative and I could relate to Keri Bowers, as the mother of a son with autism, our stories had similarities. She believed her son was born with autism. Her son also suffers from hypotonia. She talked about how important advocating for your child is. I agree with her 100%.

Taylor and Amy conducted a question and answer period. They gave their perspective of what "worked" for them. I found it interesting that both of them stated that they did not like someone "getting in their face" to teach them something. I will remember that.

While I enjoyed the presentation, the truth is that both Taylor and Amy are exceptional people. Their autism does not make them exceptional, hell, they would be exceptional in the non-autistic world. They are both uber-smart and charming. Unfortunately, most of "our" kids are not Taylors and Amys. I think few neuro-typical people are at their level of achievement. I know I'm not. I would have liked to see perspectives of parents of children all through the spectrum in diffrent age groups. I know that both Taylor and Amy lived in that autism hell and were able to overcome and they, along with their parents should be applauded for that, but at this point in my experience with autism, I don't know if that will be true for my son and my family. My son is still very young, I have hope, but I am also a realist. I guess I am still hoping for the best, but prepared for the worst.

Taylor is on tour, so google him to see if he is coming to a location near you. I think you will enjoy hearing him speak as I did.

4 comments:

Maddy said...

I have yet to attend a conference of any kind [well on the subject of autism] By the time I ever manage to organise such a baby sitting marathon.......
BEst wishes


This is my calling card or link"Whittereronautism"until blogger comments get themselves sorted out.

Amy said...

I'm glad to hear you had a good time. I will definitely google Taylor. The only autism event I've been to is the Walk for Autism that happened in October.

Stay cool and dry with this lovely weather to come!

Amy

keri said...

Kelly:

Thanks for your kind comments and views. I am most appreciative.

You are right, Amy and Taylor are indeed exceptional people - with or without their "ism". Perhaps they did have a greater potential for independence when they were young as compared to another. I don't know because those days (from birth until he was about 11 or 12) were foggy and filled with fear -- if not actual terror at times. But I never gave up the good fight.

When Taylor was very young - 2 1/2, I worked as a paralegal in entertainment. Motley Crue was a client. One day, Nikki Sixx got a speeding ticket. He called me and said "Keri, go and fix this 'm'f'r'. I told those cops 'Don't you know who I am?' I went and got Nikki traffic school. That night when I went home to my son, he could neither walk, talk, nor hug me for his sensory overload. In fact, I walked in the door and he wasn't even "there".

It was that very day I vowed to somehow change my life from "unreal reality" to something more... It was that day I decided that I would believe anything was possible until proven otherwise.

It would take Taylor time to learn to walk and a couple more years to learn to speak, learn to use the toilet, or a thousand other things we struggled with everyday. And it took me 9 years to get out of law. But it only took that night - that instant when I realized my life was so different from the norm - to find the fight in my soul to do something more, and to believe in more.

There were years through his 16th birthday when he had as many as 5 different therapies each week. Taylor worked so hard each and every day of his life. I never really let him off the hook - and we'd fight and argue. I'd feel I was losing the battle at times with behavioral and other issues - and forget puberty! That was hell. But it all added up to who he is (and who I am) today.

We still struggle quietly at home with so many things - we bleed red at home as I say - we just look great on stage!

Maybe it's just the roll of the dice, maybe it's the itervention, maybe it's fate. I don't know. But what I do know is this:

The future has not been written. It is an empty canvas. In that nothingness - that blank space, anything and everything is possible.

I applaud your courage and those others living with autism everyday. Keep your dreams. You can always change plans later.

Let me know if I can be of help on your book project. I am available if you ever need support.

Keri Bowers, Taylor's proud mom

Kelly Yates-Rice said...

Welcome Keri!

Thank you so much for visiting my blog and for your kindness.

Puberty- Yeah, been there done that with my daughter. I hope I still have enough strength for puberty number 2.

Taylor is wonderful. I enjoy talking with him.

I remember those empty days with my son. He's almost three now and he's come so far during the 13 months following his diagnosis. He fights everyday. I can see it. We fight together. I do believe that anything is possible. I really do. He is walking and he is "with" us most of the time now.

It was good to hear your presentation. I too, believe my son was born with autism. He also has hypotonia. My son didn't walk until he was 26 months old and now, at almost 3 years old, he still needs assistance.

Happy Holidays and all the best in the new year. I hope you come and visit again.

Kelly