The Angelman Syndrome community is one I feel fast ties to. My first foray into the world of listservs and parent groups was the Angelman list. I have had 8 students with AS, some I have become very close to as well as their families. Most people with AS have amazing personalities. There has been a study that shows that people with AS actually keep eye contact with others longer than the average person, and you can guarantee that usually there is a smile on that charming face.
Unfortunately, with the this syndrome also comes a seizure disorder. This can be a veritable monster, pulling down families, stopping progress and sometimes even making kids lose skills they have already accomplished. Some people end up with nonconvulsive continuous seizures, I have witnessed these quite a few times myself. Sometimes children have to be put into comas in order to let their brains "rest and reboot".
Right now there is a little girl named Kelce who has been in a coma and her parents are getting ready to take her off of life support. I can't imagine what these parents are going through or what the other parents on the list are thinking. After all, this could easily be their child in this situation. Having had a child almost die myself, I remember a little of how that feels, but at least that was a one time incident, not something that could happen at any time.
As special education teacher it behooves us to remember that the parents of our students may be going through these types of life altering events at any time. When we wonder why the child doesn't come to school with their afo's, more diapers or and of those things that make our lifes in the classroom just a tad more difficult, we need to remember what really counts.
I am saying my prayer for Kelce.