Morgan Autism Center's 8th Annual Autism Conference

The Morgan Autism Center's Eighth Annual Conference this last weekend of Friday, September 25, Saturday, September 26, and Monday, September 28 was a resounding success. Friday, we were treated to an electrifying presentation by the brilliant Dr. Sophia Colamarino of Autism Speaks. Dr. Colamarino spoke encouragingly of the latest updates in biomedical research to a spellbound audience. Although she is speaking of very complicated and involved information, Dr. Colamarino presents in such a way that even non-scientific listeners can understand.

Saturday, we had the very engaging and informative Dr. Jed Baker talking about 'No More Meltdowns - Managing Challenging Behavior and Social Skills Training". Dr. Baker's presentation was excellent, entertaining and very well received. In the afternoon, we had an energetic and enthusiastic Raun Kaufman of the Autism Treatment Center of America telling his story as a child diagnosed with autism and recovered through his parents very difficult, long and in the end, successful fight against the diagnosis.

On a separate track, we had medical information available, provided by Dr. Pilar Bernal of the Kaiser Foundation, Dr. Lisa Croen, Senior Research Scientist of Kaiser, Dr. Ann Reynolds Professor of Pediatrics, Director of Child Development Unit at Children's Hospital in Denver, and Dr. Glen Elliott, of Children's Health Council.

We had well attended breakout sessions by Dr. Shannon McCord, expert in augmentative and alternative communication, Nick Boldrey, Education Specialist, with expertise on managing the challenges of adolescence with ASD, and an always informative presentation by Mike Gilfix, regarding Special Needs Trusts. Evaluations indicate a very favorable response to the day.

On Monday, Raun Kaufman did a workshop for the entire day to a standing room only audience of parents and professionals. Everyone left feeling energized and excited by his approach, and though his suggestions is not to replace school work, it was clear to all how his ideas could be infused into already existing programs. Much of his focus was on shifting our cognitive paradigm to acceptance and through acceptance achieving the changes or progress we are hoping for.

As one who has worked in the field of autism, I have made many assumptions about 'group homes' and the impact such a move can have on a family. Twenty years ago, there were not many homes that seemed worthy  of being rated as even moderately good, and most were well below. I remember visiting a home of one of my students along with another teacher where the staff so clearly did not like the student, it was painful to watch. They did very little to hide their feelings even as we observed them. As my co-teacher and I, driving in separate cars silently parted ways, our eyes met in my rear view mirror and we both sadly shook our heads, feeling helpless and frustrated. 

Then too often it seemed that difficult persons with autism were over medicated with powerful drugs that they might not have needed had the staff been better trained to understand their behavior and how to manage it. But things have greatly improved over the last two decades, and expectations of group homes and the quality of care is significantly better, though still not perfect. 

But back to making assumptions. Probably the most common assumption I have had about group home placement is that once a parent places a child, after the initial anxiety, it is followed by relief when a good home has been found. I know from long conversations with parents how they agonize over the decision to even think of placing a child. But the pain of actually making the placement is something to which I have not given enough thought, and must keep in mind in helping parents with a very difficult transition. Recently, one of our adult clients turned 50, and his mother came to our program to help celebrate his birthday. Since I knew he was also being moved to a group home that weekend, I casually asked his mom how she was doing, and was completely surprised when she burst into tears. And yet, how thoughtless of me to think that after 50 years as the sole caretaker, she wouldn't be overwhelmed by this tremendous upheaval in both their lives. I remember a passage in Judy and Sean Barron's book There's a Boy in Here when Judy describes Sean's leaving at age 10 to live in a facility: 

I lay awake most of the night. Images flocked through my mind of Sean lying alone in that strange bed, abandoned, surrounded by strangers. He would be cold. I knew, because he always kicked off his covers, and we always went in and covered him.

I know I have been remiss in addressing and acknowledging the true depth of sadness and pain parents must be feeling in making this decision and then the move itself. How do parents deal with the grief, the guilt, and emptiness of the home? Life really is unfair.