Please forgive me for being away from the community for more than a month. I’ve been checking in daily but unable to keep up on my blog. The reason is that I have been traveling like crazy. Partly for my book and partly for other reasons. As many of you know, the CAN/Autism Speaks merger became final in February. Since then I have been scrambling to insert myself into heart of the new hybrid organization to ensure that the passion and urgency of parents is just as much of a driving force as it was at CAN.
Here is where I have been in the past couple months: Cleveland, Philadelphia (3 times!), Houston, Chicago (for a week!), Seattle, and San Francisco. As I am writing this I am in Cold Spring Harbor, New York. I am attending a workshop on autism research and also giving one of the talks here. It is a beautiful place out in the woods, quiet and peaceful – I can use some of that right now.
While on planes, trains and buses and in between, I have been finishing the beginning “how-to get started pointing” document and I am finally done! I have the manuscript out right now to a number of people for feedback - some who already know how to use the method and some who do not; a small group of parents, therapists and teachers.
Meanwhile Stephan, our web master, has been working away to create a feature that will allow us to upload video directly on to the community site. Please start taping your baseline videos as soon as possible. I will be posting an announcement calling for baseline videos but feel free to start taping any time. I am really looking forward to posting the “how-to” in the next few weeks, as soon as I’ve gotten the feedback I have requested and incorporated it. Also by then the video feature should be up and running.
I am going to attempt to catch up now and will add more in the coming days.
Yesterday there was a review of Strange Son in the Montreal Gazette: Click Here
There was also recently a review on the Metapsychology website: Click Here
What happened in Cleveland!
Even though it was a little while back I have to say something about Cleveland. So much happened in Cleveland in so few days, it was like a time warp. I was hosted by Lev and Barb Gonick. To see my Cleveland photos: Click Here
The night I arrived I came straight from the airport to their house where they’d brought together a group of wonderful parents and friends for a reading of Strange Son in their home. Walking into a large group of people that I do not know, no matter how wonderful, is not my best subject and I could have used some sensory integration therapy myself when I walked through the front door! But I took a few deep breaths, smiled and started shaking hands and listening to people’s stories and as always I eventually forgot my anxiety and found myself having a good time.
Lev Gonick is the Chief information Officer at Case Western Reserve University. To learn more about Lev: Click Here
Lev and Barb have two daughters one of whom has autism. Lev is involved with CAN’s Innovative Technology for Autism group. To learn more about ITA, (it’s a really neat program!) Click Here
The ITA group was established about five years ago with the idea that bringing people interested in technology together with those interested in autism could bring about a wave of new applications for emerging technologies aimed at helping people with autism communicate better and get a better education.
Connected to my Cleveland visit, Lev and Monarch arranged for a radio interview. To listen: Click
Whenever I can during my travels, I try to visit schools and programs to see what’s out there. While I was in Cleveland I visited a very inspiring school, the Monarch school where I observed classes and met with staff. Click Here
Recently I have had the opportunity to observe at a number of these small, labor-intensive, costly, nonpublic schools that are providing a real education in a caring, empathetic environment. I have been impressed. I was very impressed with the level of individual adaptation that was provided for each student at the Monarch school. The staff and administration were continuously searching for and integrating new methods and approaches to help their students. I was especially impressed by the kindness and committed demonstrated by the staff; I felt they would never give up on any student. I admire everyone who created the Monarch school in Cleveland. These are the kinds of schools we need for our children everywhere and it truly takes a village to make it happen. It is astounding how much energy, resources and commitment it takes to serve each child’s physical, cognitive, educational, emotional and social needs optimally and every single child deserves nothing less than the optimal chance to fulfill his or her full potential. I gave a talk to the Monarch staff and later to the Monarch parents.
There was a book-signing event for Strange Son at Joseph Beth bookstore and there I met some wonderful parents. While in Cleveland, I enjoyed a fireside reading of Strange Son at the home of Shari Goldberg Cleveland CAN chapter leader. BTW, their recent event ‘Cleveland Rocks’ raised an awesome almost $200,000 for research to treat and support families facing autism! Sheri lives in a unique older home built in the 1930s and it was a beautiful evening filled with parents, some new to autism and others who have been involved for years, as well as many professionals and community leaders. The evening had a very cozy feel and it was the most relaxed reading I have ever given, in part because I felt surrounded by friends and in part because of the wine. I have to tell you about the wine. Wines are given names and the Grand River Cellars of Madison Ohio named two of their wines: ‘Austin’ and ‘Susanna’ after two beautiful children affected by ASD. And a portion of the proceeds from these two exquisite wines goes to, you guessed it: autism research!
While I was in Cleveland I also had the privilege of visiting Seth Chwast, a young man with autism who is a remarkable artist. I spent a little time at Seth’s home and was graciously given a guided tour of Seth’s amazing artwork, by his mother Debra. Each room was full of paintings and I had to tear myself away from one set of paintings to move on to the next room. I was entranced. To see Seth’s art: Click Here
I have recently begun to encounter more and more young people on the spectrum who are exceptionally talented the visual artists. This talent is often discovered unexpectedly during the teen years or even in young adulthood and I am wondering if there aren’t many more people with ASD who have potential in the visual arts but are never “discovered”? In a few months our community web site will be introducing a ‘group’ feature and perhaps the parents of these artists and/or the artists themselves, will form a group and get to know each other, perhaps even form a network to help promote their art work.
More catching up in the coming daysĂ˘â‚¬Â¦
Best wishes, from Portia
PS Here's a short TV interview I did in Cleveland thanks to Lev.