Botox for CP

Andrew is scheduled to receive his first botox shots two weeks from today.  We're trying to avoid muscle-lengthening surgery to help loosen hamstrings.  His hips appear to be fine; however, he's grown so much and the muscles aren't keeping pace with the bones.  His legs are so tight he can no longer use his prone stander and is having difficulty standing to help with transfers to the toilet and his wheelchair.  We're hoping to see benefits from the botox.

Andrew is not concerned about the injections; however, I'm still really apprehensive.  There are obviously risks involved with botox.  Although our doctor is not concerned, I still have fears about side effects.  Secondarily, I know the shots are painful and that it will be a lot of work tomanage all the additional stretching that's required in order for this intervention to really be effective.

Do you or someone you know have experience with botox in the leg muscles to help with CP?  We're eager to load up on all the information we can get and gain advice with anyone who has it.    Please pass this post along if you know someone who can share.

Work for Change

Last November, I saw a post-election day poster by a young child, which read:

Rosa sat...

So Martin could walk...

So Barack could run...

So all our kids could fly.

I hope you can celebrate change today and that together we can create change for the better in our communities, in our world and for our children.

"All About Andrew" Information Book

Just told my sister about this blog.  She suggested I share info about a book we made for Andrew several years ago.  A friend had made something similar for her son when he went to camp and suggested we try it.  Great idea which is really very easy to do.  

"All About Andrew" is a binder that describes our son for those who don't know him.  We created it to help ease Andrew's transition from elementary to middle school. Gave copies to his new aide, teachers and even the school principal over the summer.  Updated the book the following summer for people at sleep away camp.  Updated it again this year for folks at an after-school reading program Andrew attends.  

As parents, John and I wrote an introduction to the book that describes our expectations, outlook and attitudes.  We thanked the reader for taking time to review the book and getting to know Andrew better through its contents.  Andrew wrote a short essay about himself, his family, hobbies, likes/dislikes and dreams.  He also selected photos of himself doing special things with friends and family, along with copies of awards that he's proud of.  Finally, we included two letters from former teachers and information on cerebral palsy.  

Unfortunately, many people are afraid to ask questions for fear of appearing ignorant.  But no one knows our kids as well a we do.  We've found that having "All About Andrew" helps to proactively dispel myths and educate people without them really knowing it.  (Thanks for the great idea, Ida!)  

I know we'll have to adapt Andrew's book as he moves towards high school.  Any ideas from you all about what to include?

School Bus Safety

Since kindergarten, Andrew has taken a special lift bus to school everyday.  The first year, his older brother rode with him. Since then, he's gone "alone," and thrives on the independence. While we miss the chance for him to socialize with other children on the neighborhood bus, Andrew has made great friends with some of the kids who ride with him, as well as his bus drivers and aides.  Thankfully, we've had mostly good adults help him each year.  And our driver for middle school is fabulous (just ask Andrew!).  Still, the tragic incident in New York City recently is a dangerous reminder of just how vulnerable students like Andrew are on school and public transportation. We do what we can to make sure the driver and Andrew feel comfortable and confident together, but you can never be too careful.  Still, here are a few things that work for us:  

1) write into the IEP that driver must come to our house BEFORE school begins each fall:  meet Andrew, learn about his power wheelchair; practice securing it onto the bus and loading Andrew on and off; 

2) develop transportation goals,  such as independently boarding the bus and navigating into his "riding position" on his own; 

3) complimenting the driver and/or aide to tranportation management and school district administration when they do something thoughtful, smart or competent (it's a hard job, and everyone deserves some praise); 

4) asking Andrew constantly about his bus ride to and from school to elicit information that we may not be getting from a driver; 

5) asking school personnel to work closely with the driver/aide to ensure everyone is aware if Andrew has had a particularly difficult or terrific day 

6) requesting that any substitute driver be announced to us in advance, even if it's an early morning phone call before school (enables us to prepare Andrew and, if we're not familiar with the driver/vice versa, to arrange alternate transportation for Andrew -- I drive).  

Clearly, this list is not exhaustive and additional input from blog readers would help us a lot.  Do you have any suggestions for making the school bus safer?  

Wii and Special Needs

Santa brought us a Wii for Christmas. All the kids love it, especially Andrew. It's the first video game he's truly been able to play. His favorite game right now is Wii Music, in which he can conduct an orchestra and learn/practice lots of musical skills. A great addition to the family "fun" arsenal. Given his limited hand usage, we didn't really expect Andrew to be able to utilize many of the other Wii games, but we have been proven wrong indeed. He pitches and bats in Wii Baseball, and we're still working on Wii Bowling. We've even asked his occupational therapist to devote next week's therapy session to Wii practice, so we can teach Andrew how to best manipulate the Wii controller given his physical limitations. Best of all, as this video clip shows, Andrew is really motivated by all this and is now an active participant in the activity, rather than just an observer cheering for his friends and family. Do you now of other video games or gaming systems that would be accessible to someone like Andrew? Wii welcome your input -- always.