Because the world is round...

Written April 30th...

​Hello friends,
​I haven't posted for a while due to an incredible amount of travel that started in January. Unfortunately the end is not in sight yet - things won't calm down until mid-June as far as constant travel. It seems this happens every year when meetings, workshops and family trips all converge during a period of a few months, but this year has been the worst year ever. Here is a list of some of the places I've been since January: Italy, Houston, Santa Fe, Chicago, Newport RI, Boston, Montana, Nashville. I am on the plane to Nashville right now for a meeting which I am very excited about - it's the start of a research network investigating the role of the autonomic system in autism. This is something I've been interested in for several years, ever since the studies I did with Bill Hirstein and Ramachadran a few years back where we saw incredibly unusual autonomic activity in children with ASD.

​So rather than let any more time pass, I've decided to write a series of blogs to try to get caught up. Just so you know, I read every new forum post on the site and I am always thinking of everyone here. I am so impressed with all of you as I read your posts about how your children are progressing and share your ideas and successes. I am especially happy when I see people on the site asking for help and getting help from each other - the whole community benefits from these exchanges. I admire all of you very much and I am so happy that this community exists - which without all of you it wouldn't. I am especially grateful for those who have uploaded videos on the site and all of you who have contributed helpful and supportive comments. These videos will become a historical archive of children and people with autism who can communicate and it will live on as a testimonial to the intelligence of our children.

​In February I took Dov to Baylor in Houston to get an extensive genetic workup at the lab of Dr. Art Beaudet (a wonderful scientist and friend whom I have known a number of years). Genetics technology is advancing so rapidly that we canÍt assume we have ruled everything out even though we may have had previous testing. The ability to see the genes at an ever-finer resolution means itÍs probably a good idea to get an extensive genetic workup every few years now. Dov also saw Dr Brendan Lee, a pediatric bone geneticist who was very helpful and gave Dov an infusion (in the hospital) of a new bone medicine. (FYI, Dov has very severe osteoporosis which we only discovered this about 4 years ago - if anyone else has a child with this problem I'd like to hear from you, as I am involved in a project to track down other kids like this for further research). Besides slowing bone loss, one of the great effects of this new medication is that it lessens the bone pain which Dov experiences daily. Dov was SO good in the hospital, he had to get a blood draw and then he stayed completely still for 10 minutes during a full skeleton bone scan where if you move a single muscle it ruins the image. I did not think he would be able to do this, but he did it! After that he had an hour-long infusion of the bone medicine in the hospital and had to stay in that room the rest of the day.

​I was so proud of him I said he deserved a prize, a special present, which always brings up the tough challenge of what would Dov actually enjoy getting, what would be fun or meaningful to him? I know many of you have this same problem at holidays and birthdays. When your kid has little ability to inhibit impulsive, sensory-driven behavior and also has very poor motor-skills like Dov, it means he can't initiate, can't do much on his own, doesn't have enough organized voluntary behavior to for example read a book by himself, or play with a toy or play music on an I-pod. I know not everyone's child is like this, but many nonverbal children with ASD are. So what does Dov enjoy? Dov has been obsessed with a number of things for quite a while: coffee, tea, water (he is incessantly thirsty) and also beads (of course!), stones, pebbles, marbles, etc. So I grabbed a bunch of images off the web and created some slide shows for him featuring his 'objects of desire' accompanied by some of his favorite music. I must admit searching for these images satisfied my own 'foraging' tendencies and I was secretly amused when I used the Beatles song 'Because the world is round' to accompany the slide show that featured round items! You can take a look at the slide below. More soon...

​Bye for now, -Portia

Posted on 05/03/2008 at 23:50:37

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