Being so busy right now, I decided to take a break and sign off from the Angelman Syndrome listserv.
What an awesome resource and what a supportive bunch of ladies I’ve gotten to know through the list.
I’m proud that sharing Maddie’s experiences have encouraged other parents to see the possibility in their child, and happy that some people have chosen inclusion for their children with Angelman Syndrome.
This blog will continue and I feel close to many of these kids, so please keep in touch!
And an update: Maddie’s medication (Concertta) isn’t doing much of anything. I am going to request the Clonodine when we have our next visit in a week or so. What has helped? Being extremely consistent and firm with a behavior management plan at home and at school.
Basically, zero tolerance. At school and at home, at the first instance of misbehavior (grabbing, spitting, yelling, refusing, etc) she is removed from the situation, given five minutes to regain her composure, then she must do a couple of compliance tasks to prove that she is ready to listen. Compliance tasks might be “take this book to the bookshelf” or “unfold this paper without ripping it”. Something non-challenging, but non-essential.
(note: Maddie has the cognitive skills to clearly understand all of this, it was really a matter of her testing us so much that it was pretty much non-stop. Obviously if she wasn’t capable of understanding or wasn’t misbehaving on purpose, the method would have to be adapted.)
