We recently returned from the National Prader-Willi Syndrome Association conference in Niagara Falls, NY. It was a LONG drive, but the kids held up well. I finally broke down and got a portable DVD player, which was very helpful in the car and the hotel room. This was my second conference, and the first with the whole family. It was great to meet in person so many families I have corresponded with online over the past few years.
Nolan will soon join the ranks of glasses-wearers (many of whom are members of his own family!) A recent visit to the eye doctor revealed what I suspected: his right eye crosses in when he is focusing close-up, and when he is tired or excited. It is a muscle spasm partly due to low tone. He also is becoming increasingly far-sighted. We will wait for about 6 months to see if he "matures" a bit more to tolerate glasses. His sensory issues have really flared up lately, resulting in increased biting, gouging and head-banging. I am re-starting his Wilbarger brushing protocol program, and including more proprioreceptive input and massage techniques into his daily schedule in hopes of easing some of his sensory defensiveness.
Nolan recently rode a bike for the very first time during a session with his wonderful physical therapist. He received his Amtryke therapeutic tricycle through the AMBUCS program, an organization dedicated to providing therapeutic bicycles for children with disabilities. There normally is a very long waiting list to receive a tryke. Although Wisconsin does not have an AMBUCS chapter, we were fortunate to be sponsored by a chapter in Texas who raised funds to sponsor trykes for everyone on the list waiting for a toddler sized tryke, and ours arrived within six months of our application.
We were pleased that Nolan did not protest too much about having to wear a helmet, considering his sensory processing disorder and subsequent dislike of hats and hair washing. To view the video clips, click on the links below. Amanda did her best to offer lots of big sister support (and advice!)
