"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.

DME Equipment

We've tried countless pieces of equipment over the past 12 years to not only transport Andrew, but also increase his ambulation, muscle strength and flexibility, access to the out of doors, and overall postural support. Today, our DME representative is visiting to talk with us about beds, since Andrew is getting too tall for the twin-from-a-bunkbed-set he's currently using.

It's cumbersome to research, pay for, recoup insurance and the like; however, in our case, the benefits have always been worth it. Except for the Rifton Pacer walker, which was simply too difficult for Andrew to propel, given his limited lower range, each of the following things has been helpful at some extended period of Andrew's development.

Hart Walker (pictured above with Mr. Christmas), Rifton Prone Stander, Permobil power wheelchair, Quickie push chair, Convaid travel chair, ceiling list from Patient Lifts of New England (now runs from Andrew's bed/where we change him) into toilet and shower, Rifton shower chair (we no longer need this now that we use the lift), Rifton tub chair (we later used this in a canoe even!), Freedom Concepts bicycle, Cascade DAFOs, Tumbleforms wedge (gives Andrew "tummy time" while watching TV so he can develop upper body strength and head control), "Special Needs" Baby Jogger, Tumbleforms seat (we use this on our motor boat), and probably more I'm forgetting. I'm also currently investigating a new stander and bed, as I said, so let me know if you have any suggestions, please.

Happy shopping!

Moms Matter

For all those moms and caregivers out there: you are special, too! Check out this wonderful clip. Happy holidays!

Taking Care

I'm home today with a sick Andrew. Thankfully, it's nothing more than an upset stomach. I just thought he deserved a day of rest. As the primary caregiver for our family, I need these every now and then, too. Additionally, we've grown to rely on the myriad of "helpers" at our home who help lighten the load of caring for a child with such extreme physical limitations. Solving the caregiving puzzle is a very personal thing. Some families can rely on grandparents or other relatives to help out. Others require more skilled nursing care than we do and work through home health care agencies. At various points in Andrew's life, we've hired OT and PT students, au pairs and just kind and loving "babysitters." Now that he is older, our needs are more focused on activities of daily living vs. childcare. We take part in a CT DSS program called the Katie Beckett Home-Based Medical Waiver program (800-445-5394). In our case, a wonderful woman comes in each weekday morning and night to help Andrew get ready for school and then bed. Katie Beckett helps offset the cost of caring for a child within the home, as well as other home-related expenses. Each state offers something similar under various names. It's definitely worth looking into.

Have Wheelchair...Will Travel

We're planning another family vacation. Just the thought of it stresses me out; however, I'm trying to stay positive. No matter the extra challenges, we continue to have great success exploring the world with Andrew's wheelchair. Our family has traveled to Europe, the American West, Disneyland and Disneyworld, and most major US cities together. Here are a few things we've discovered along the way:

1) Use a travel agent. Ours telephones hotels/resorts in advance of our trip and informs them of Andrew's special needs. I have a Word document that I share with the agent. He then "manages" the accommodations and it's one less thing for us to worry about. We spell out everything from bathroom needs to bed preference, then he takes care of the rest. It's a huge service.  Email or call him and maybe  Tim Hennigan can help you, too.

2) Take a back-up chair. Andrew's powerchair has broken down in Disneyworld, a Colorado ski resort and in the middle of New York City. We now travel with a portable Convaid push-chair that Andrew calls his "travel chair." It's just a back-up in case of an emergency. And when United Airlines broke his powerchair en route from NYC to LA, we were really glad to have the travel chair to use for our entire CA vacation. Note: this chair fit easily into every traditional London cab we used several years ago in England. All were equipped with a ramp and we just rolled Andrew into the the "back seat" area, which easily fit all five of us. Wonderful!

3) Call the airlines repeatedly. When we book plane tickets, I always get the name of a customer service representative at the airport. I call at least 5-6 times to make sure they have all the information they need about Andrew and his chair. I specifically request an escort for our family from baggage claim through boarding. They never mind providing this, since it makes their lives easier, too. Personally, our best experience ever with Andrew and as a family was when we flew to London on Virgin Atlantic Airways. They even installed a special plane seat for Andrew, which is designed to provide better postural support and positioning to children with special needs. Whoa!

4) Wheelchair Getaways has been a great van rental resource for us. We've used them in a number of states and are about to rent from them in Chicago this coming Winter. They'll meet you at the airport with your van and our experience has been nothing but good. Rates average about $125/day for a converted minivan.

5) Consider renting a condo. We're renting a 2BR condo this February in downtown Chicago. More space and less money than than two hotel rooms, and the entire building is completely accessible to persons with mobility limitations. We can't wait!