Fall 2007 - Autism goes on vacation (not)

Dear Friends-
​My last post was just before we went on our family summer vacation in early August. We had a great vacation (​click here​). But somehow relaxing for the last three weeks of summer makes the fall and real life seem all the more formidable and anxiety producing than ever. I truly dread the fall every year with all the kids going back to different schools, (having a home school demands a lot of attention too), the Jewish High Holidays (​click here​) being upon us and also just resuming my regular projects, i.e. Autism Speaks grant reviews and continuing to develop this website, finishing laying out the ‘how to’ manual and now preparing for the release of the paperback version of my book 'Strange Son' November 6th.

​Dov had a really busy summer going to three camps. I posted some pictures from Dov's camp experience, including his time at the Syracuse FC Institute (​click here​), the Extreme Sports camp in Aspen (​click here​) and Chris's camp in Idyllwild. This was much more traveling than Dov has ever done before in one summer.

​When he wasn't at camp Dov attended Cogwheels, our home school. During the summer Cogwheels starts later in the morning and the kids discuss current events and do self-reporting; sometimes they play trivia or word games or do other fun activities and they discuss their plans for the afternoon. By the start of summer each year, the students have already planned out everything they want to do in the afternoons during Cogwheels summer 'camp'. They've lined up all the movies they what to see and which days they will go to the pool or the beach or a museum or restaurant, etc.

​Just before we went on vacation we had a very special visitor. Gideon Greenfeld is 24 years old and nonverbal and he communicates beautifully by typing on his keyboard. Gideon and his mom Toby and dad Joshua were visiting from New Jersey and they stopped by to see us. It was very inspiring to meet Gideon and his family. To see a video of Gideon visiting us, ​click here​.

​Update on the community website and pointing manual: Over the summer our web master Stephan did a lot of work to get the new video blog up and running. (the video blog appears on the right side of your home page). We still need to improve the look of the site and the user-friendliness of many of the features - there is still a lot of work to be done. In September Stephan went to France for three weeks to visit his mother but he's about to return so I am hoping we'll make a lot of progress over the next couple months. Meesh has been working on one reality show after the other all summer and into the fall and so I've only been able to get her help laying out the pointing manual on the weekends and we are all a bit burned out from doing that. But it's getting there! I don't want to promise any dates since it has proven to be so much more time intensive than any of us realized. But it is coming along very well and we are getting closer to the finish now. I promise to send an e-mail to everyone as soon as it is posted on the site. I am hoping members will take this time to upload “baseline" videos of their kids on the new video blog. We've also been busy editing clips of our own videos for the video blog and we've uploaded a few already (​click here​ to check out the new video blog).

​This fall I've had the exciting opportunity to be a part of a special Autism Speaks research project called 'High Risk/High Yield. I am a member of the core group and we had our first meeting a couple weeks ago. I initiated a special project aimed at finding ways to demonstrate cognitive function through recording specific kinds of brain activity in nonverbal kids with autism. I am so tired of all the skepticism and I wanted to find a way using technology to show brain activity that correlates with cognition and use this with nonverbal kids like ours to dispel the assumptions of mental retardation and the low expectations that go along with that fallacy. More updates as this project takes shape!

​Best wishes to all, -Portia

Posted on 10/11/2007 at 09:16:50

The Descartes Community is an online social networking site for sharing information about helping non-verbal and "low-communicating" individuals with autism to communicate better.

Create a profile of yourself and your child, Share videos on the 'Video Pointing Forum', Exchange information on the 'Community Forum', Learn more from the 'Media & Resources Library', Get started with the 'Informative Pointing Method' manual (download-able)

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