Sunday, September 13, 2009
Heck, we've been doing this for 10 years. When your child with cerebral palsy gets big enough to need a wheelchair, wears braces/AFOs and needs help getting changed and dressed, it's a slow process. Our son is now 13 years old and still requires all the help he needed at 3. It takes us at least 30 minutes to get us out the door to get anywhere. It's hard for us to to out rush and accept a spontaneous invitation. This much work takes planning and I'm still always 10 minutes late.
As anyone who's travelled with us knows, we are slow. Slow getting out the door, slow getting a wheelchair in our van, slow travelling across rough terrain and slower eating meals. We don't travel light. We travel with wheelchairs, strollers and trays packed into an adapted minivan with a cargo rack on the roof. We need time and space.
Perhaps I missed Mr. Honore's telephone call when he was researching his book, but I expect we -and other parents of children with special needs- will be living the slow life for a years to come.
Available from Amazon - In Praise of Slowness by Carl Honore (also available for Kindle)
Tuesday, September 8, 2009
In his early school days, we received daily notes as any parent would. But now that's he's in middle school, his day is very full leaving little down time for his teachers to write copius notes. But to parents of non-verbal kids, the notes are as important as ever.
It's important to have open but structured methods of communication with our children's teacher, therapists and school nurses. I try to make it as easy as possible. I send in an easy-to-use single talker or a weekend-news communicator I designed to share news from home. I provide a notebook to share daily news. Below are some links to pre-made forms that teachers can fill out to provide great info for parents. Many were designed for children with autism but they will likely work for all kids with communication challenges.
Examples: Home-school communication forms
Book: My PECS Home School Communicator
Pre-made forms on Mayer-Johnson's Adapted Learning website
Kit: School Nurse Communication Pack
How can we keep lines of communication open and easy? Any ideas?