I spent the weekend about 90 miles from my house at a conference on autism. I go to a lot of trainings and conferences for my job, but this is one that I chose to go to, one that I wanted to go to. The whole weekend was all about autism and there were lots of different speakers and I was PUMPED. I wanted knowledge, knowledge, knowledge. I wanted someone "in the know" to tell me ways to help my child, ways to better communicate with him, techniques to use that will be beneficial to him. I'll show you why I was so excited now. Listen to this lineup of speakers:
Claude Ashley, M.D., Ph.D. - co-founder of Spectrum Center for Autism and Related Disorders and also the father of a son with asperger's.Vincent Carbone, Ed.D., BCBA-D - Board Certified Behavior Analyst and founder of the Carbone Clinic in New York with over 30 years experience in ABA. (He had a picture of B.F. Skinner holding his first born son, y'all.)Martha Burns, Ph.D., CCC-SLP - Speech Langauge Pathologist in the Chicago area for the past 35 yearsJohn Pagano, Ph.D., OTR/L - Board Certified Occupational Therapist who specializes in intervention for children with severe behavioral and ASD challengesTamara Kasper, MS, CCC-SLP, BCBA - Speech Langauge Pathologist who has specialized in treatment of children with ASD for over 10 years; also a Board Certified Behavior Analyst Cynthia Norall, Ph.D., BCBA - Licensed Educational Psychologist, national certified Cognitive-Behavior Therapist, and Board Certified Behavior Analyst; author of the book "Quirky, Yes - Hopeless, No" - a book dedicated to the treatment of children with Asperger's SyndromeElizabeth Mumper, M.D., FAAP - President and CEO of Rimland Center for Integrative Medicine in Lynchburg, VA which specializes in treatment for children with autism and other related disabilitiesI didn't write all that to bore you but to show you that as a mom of an ASD child, these are the people you want to listen to. These are the people with the information that could be helpful to me. And it was.... It was all really good information and I felt like I was in a room with people that got it. People that understood where me and my family are right now. I have such great friends and they love on my son so well and they are there for my family in ways that is so wonderful, but there are just some things that they can't understand b/c they don't live with us day in and day out. But these people said things that made sense to me. They knew my struggles and understood exactly where I was. There were lots of professionals there who work with ASD kids but also lots of parents who just want as much information as they can get about how to help their kids.
My mother went with me. I think she was the only grandparent in the room which was a really cool thing. One of the greatest things about the weekend was how encouraging everything was. This isn't some disease that means my child can't have a very happy, healthy and productive life, but instead is a part of what makes him who he is and there are ways to help him become the happy, healthy, productive person God created him to be. It was nice to hear all this encouragement and get so much good information.
But these people listed above weren't the real draw for me. The big draw for me was the keynote speaker, John Elder Robison. He's the author of the illuminating memoir, "Look Me in the Eye" and his latest book, "Be Different." He is also the brother to Augustus Burroughs, author of "Running with Scissors." John is described in a very memorable chapter of that memoir. John was diagnosed with Asperger's Syndrome at the age of forty. He writes about overcoming his limitations to lead a successful life. Reading his book, there are so many things that make me think "That's Jack." I wanted to sit in the same room with this guy (a successful businessman, father and husband) and hear what he had to say about his life. That was the draw for me.
And he didn't disappoint. It was great to hear him talk and to hear all the similarites between himself and my son. He spoke on Saturday morning for about an hour and it just wasn't enough time. Then, he offered to meet with any parents at his hotel Saturday night to answer any questions we may have for him. I wasn't too excited b/c there were lots of people at the conference and I thought it would be crowded and hard to really talk to him and ask him the things I wanted to really ask like, "What characteristics did you look for in friends and mate?" "What kind of diet are you on personally?" "What specific things did your parents or grandparents do when you were young that helped you?" "What did they do that wasn't helpful?" etc. etc. etc. I did not expect to get that opportunity, but I was still excited to just hear him talk about his life and accomplishments more regardless of the circumstances.
When I got to the hotel, I was shocked to find only about 15 parents and John Elder Robison. We sat with him and just talked to him for two hours. I was able to ask him everything I wanted to ask him and more... It was such an illuminating experience for me. He talked specifically about our kids and and their issues and ways he thought would help us deal with specific challenges our kids were facing. I wish I could explain how I felt in that room of people, but the only way I know to say it is that they were people like me. I just felt that and it was such a great feeling.
I'm not going to tell you everything I learned at the conference or everything I learned from talking with John. I will spare you all that even though I haven't afforded my friends the same courtesy. I have talked about it to all my friends that would listen since I got home LATE Saturday night:) Instead, I just thought I would share some of the statements that encouraged me most throughout the weekend.
"Autistic children have all the parts they need. It's a connection problem or a rewiring problem. They aren't missing any crucial part. That's what is so encouraging. We can rewire the brain. There is lots of time to develop these skills in children." Martha Burns"Visually, neuro-typical children love to watch movement. ASD children don't perceive movement although they can be taught this skill. That's why ASD children love Thomas the Train - it's a simple face with little movement." Martha Burns (This statement didn't really encourage me. I just thought it was funny since we were such Thomas groupies for so long:)
"It's up to the child to figure out a way to adapt to the world, but they CAN figure it out. It's just a matter of teaching them HOW to figure it out." John Pagano"In isolation, Asperger's doesn't exsist. Only when you add social interaction does Asperger's become a problem. The good news is you can teach someone better social skills. They will always have Asperger's, but they don't always have to be disabled because of it." Cynthia Norall
"ASD kids are not by nature manipulative children but instead are trying to protect their territory. It is important to understand the difference between the two." Cynthia Norall
"I'm still an Aspergian. I'll always be an Aspergian, but I am no longer disabled by it. I have learned how to go from being weird to being eccentric. Eccentric is better." John Elder Robison
"I have learned that I don't choose my friends. I have to wait and let friends choose me." John Elder Robison (I'm now praying for friends that will choose Jack).
"I have the same feelings everyone does: sad, happy, glad. I just perceive the world differently than others. It doesn't make me a monster, it just means I saw something different in a situation than you did." John Elder Robison
"Look Me in the Eye is an immensely affecting account of a life lived according to his gifts rather than his limitations." Daniel Tammet
Some of these may not be exact quotes but paraphrased as I wrote them during the conference. What they all definiately are is music to my ears, water for my thirsty soul and manna from heaven - for this mother at least. I just needed to be with people like me for a few days to hear them.
