information overload

Mom and I went to a fantastic conference on autism on Thursday called ‘Restoring Hope’. The first speaker was Dr. Bryan King. He was very articulate in his description of where the definition of autism was derived, where it is now, and where it is going in the future. Being new to this all, I so appreciated this even though it may have seemed like taking a few steps backwards for those of us that have been here for years. There were 4 different tracks of speakers…Mom and I separated and covered the ones that were most interesting. Somehow the speakers that she went to were more engaging and had more practical information.

For the first, I chose ‘Effective Behavioral Interventions’. I was hoping to walk away with some concrete information on how to effectively intervene when I am encountering a behavioral meltdown. It was more of a history of how the ideas have changed over the years. Some good information, but the photograph of a young boy getting a lobotomy with what looked like chopsticks is now ever indelible in my mind. WTH?!! So, was I supposed to feel grateful that we weren’t dealing with this 30 years ago?

The next class I chose was a parent panel. There were some truly inspiring parents that shared their stories with us. Their tremendous courage emitted an enormous amount of spirit, love, and bravery. It gave me a different perspective on the difficult choices that they have all had to make on whether to keep their autistic children at home or commit them to a group home. It was heartbreaking and my heart hurt for these parents. I feel fortunate that we aren’t in that situation and won’t be. It wasn’t practical information but I definitely gained some knowledge of the other end of the spectrum and also of the trials that are put upon us. These families were blessed by these children. These moms have literally been through hell yet still possess a beautiful peacefulness about them. They aren’t afraid to cry in front of a crowded room of people. I will hold them in my heart for a long, long time.

The third class was ‘Assessing and Changing Challenging Behaviors’. Now this dude was seriously demented. He was laughing at his own crass jokes. Apparently he is a doctor at an institution. The manner in which he spoke of his ‘clients’ was baffling. There were a great deal of parents of fairly low functioning, non-verbal autistic children in attendance. I can imagine that they were either completely appalled with this character or this has become their world and are immune to it. He told us of ridiculous tactics that they would use to reduce the amount of hours that the kids had to be restrained per day. WTH? That is so what I didn’t need to hear! Though, looking back on his powerpoint slides, I see that the objectives that he laid out made sense. Proactive approaches to behavior are better than reactive ones; avoid using punishment. The avoidance of using punishment is an interesting notion. One I hadn’t actively considered but I seemingly am finding that punishing O is completely ineffective. Something that I would never, ever have considered before I stepped into these shoes. So, Dr. Crazy states that:

1. punishment has no teaching component   2. punishment models the use of coercion  3. punishment creates anger and provokes aggression  4. punishment is often reinforcing to the person using it  5. people adapt to a punisher, requiring an increase in intensity over time  6. punishment is a reactive strategy. What to do instead? Crisis management, followed by instruction in appropriate behavior, re-creating the scene.

After I get the yuckiness of his impression upon me out of my head, I will be able to think more clearly about his message. Unfortunately I’m still stuck on that hideous laugh he emitted. That should be omitted indefinitely. The last thing that people in the position of having to admit their child into a group home should have to endure is THAT stupid chuckle. Have I exhausted my point yet?

I saved the best for last. Dr. Gary Stobbe. Does this man have a facebook fan club yet? If not, I might have to be in charge of such an honorable task. The fact that he is extremely charismatic doesn’t hurt. The fact that he is a trained neurologist means that he brings a great deal more depth to the conversation. The fact that he was talking about biomedical approaches to autism made my heart flutter. He seems to have a broader understanding of this spectrum. There is a quality to his speaking that says, ‘parent, I’m not giving up, neither should you’. He emits hope. Yet, just to be clear, he did say that there is no cure to autism. I still need to believe. I’m going to pretend that he said that there is a cure and that everything is going to be okay. Oooohhh…I feel better already, and hopeful. I need live in the make believe for a little bit. Like when the trolley to The Neighborhood of Makebelieve showed up on Mr. Roger’s Neighborhood. That soothing sound of the trolley that came to whisk you away after you were ever so gently told of whatever mishap in the world by a caring, loving man in a cardigan with indoor sneakers and a soft, gentle voice. Once you arrived in the Neighborhood of Makebelieve, everything was always so hopeful. All of the lessons learned were and beautiful and inspiring. Like you were wearing rose colored, cloudy glasses. The real world didn’t seem as bad any longer. You were then ready to go back. It was always good for a few minutes to escape to that world. I feel like I need that escape right now. Just for a day. Just long enough to gain some perspective.


One thought on “information overload

  1. Mom

    Dear Karen,
    Yes, Mr. Roger’s World of make-believe!! Sometimes I think Ollie lives in that world and is quite happy with it. You can’t tell me he doesn’t have an imagination! We should pull out some old videos of Mr. Rogers and check out his reaction! Looks like I should have gone with you to see Dr. Gary Stobbe – interesting and handsome!! It was a good day to learn more. I do have to get my notes and handouts to you! Thanks so much for including me. Mom

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