Fostering Independence

Today I read a t-shirt that said: "Give me what I need to do it myself." As parents, this means teaching our children to be self-sufficient. Independence creates self-esteem in all people. People with handicaps need high self-esteem, too. So, as parents, we need to work hard to "give them what they need to do it themselves." In our house, this started with getting Andrew a motorized wheelchair at an early age (4) and working with his therapists to constantly improve his driving. It also means fighting with insurance to get an automatic door opener installed, so Andrew can get himself into and out of the house safely and independently. TV remotes, computer enhancements, closet organizers, special drawer pulls, a telephone headset and even reorganizing my kitchen cabinets so Andrew can access his utencils directly. These are all essential actions our family must constantly undertake to help Andrew help himself. Our educational consultants just told us we can actually have someone come into the home and school and analyze what else can be done to help us make progress in our quest. The list is endless, apparantly. What's on yours?

Oh Canada!

Like many families across the globe, ours tuned into the Olympic Games last night. We anxiously awaited the outcome of the Mens Freestyle Skiing. I was a fan of the cute, rich and mysterious Canadian-turned-Australian, Dale Begg-Smith. But then everything changed. I watched Alexandre Bilodeau move flawlessly through the course and await his score. I watched the camera pan the crowd, and even commented to our son, Andrew, "look, that man seems to have cerebral palsy," referring to someone in the crowd watching the competition. Behold, Bilodeau wins the gold medal and dedicates it to his brother, Frederic, who has struggled with CP for decades and inspired him in countless ways. What a victory for so many people. What a special moment for these brothers.

Dance Therapy for Cerebral Palsy

Our son's CP is much more disabling than this guy's; however, I'm struck by what dance and music might be able to do to improve Andrew's body awareness and interest in physical therapy. Could we use this approach to increase his desire to "work" on his body, rather than just accepting its limitations? Might this actually make therapy fun, after all these years? Interesting food for thought on this post-Thankgiving morning. Thanks to my friend, Caroline, for sharing.

Problem Solving -- One at a Time

Yesterday was a banner day, and more typical than I'd like to admit, actually. I spent the morning celebrating all of our son's cognitive achievements over the past 6-12 months. He's made strides we never could have anticipated and really is proud of his accomplishments. The afternoon arrived, however, and took the wind out of my sails. A very well-intentioned therapist pointed out too many physical issues facing Andrew (and our family)...and threw me into a parental guilt-fest the likes of which I haven't experienced in awhile. My husband and kids tried to put things in perspective for me last night, but alas I continued to sulk until bedtime. Then I saw the light. I just need to tackle things one-problem-at-a-time. Really.

Problem solving is a skill we all need to master, especially me. It's equally important for our children, especially those with "special needs." My approach, though not always perfect (especially according to the therapist I consulted with yesterday!), generally works pretty well for a family that needs balance and time for fun and love of life:

1) Make a list. I have one for each child, as well as for myself. If there's something that needs to be "solved" or addressed, it goes on there. When I have time to deal with it, I do. Otherwise, I don't let it cloud up my day.

2) Gather the troops. I don't believe in reinventing the wheel unless it's absolutely necessary. Sharing information with others, and consulting them for their advice and opinions, lets us learn from people's experiences so we don't have to repeat their mistakes or spend an inordinate amount of time online researching things someone else has already obsessed about. Am going to send an email this morning to friends that addresses therapist's concerns from yesterday. Hopefully, someone can point me in the right direction and help solve some of my current Andrew-related problems.

3) Make others help. Why must I automatically manage all the family's problems? Our kids and my husband are equally if not more capable. I've learned to delegate. My mantra: use your brain first before you ask me to use mine!

4) Look for teachable moments. The walls of our house are filled with ding marks. How else does Andrew learn to drive his powerchair? If we're constantly telling him, "Stop," or "Turn," he'll never figure out how and when to do things himself. This is perhaps the best metaphor I could come up with. We need to let our kids have their drywall dings...everywhere.

5) Denial is a great way to avoid becoming overwhelmed. A wise man once told us that truly good parents will never really neglect the problems of their children. If it helps to stop thinking about a problem for awhile simply because it's taking over your life -- do it. If this causes more stress, then it's obviously not the answer. If it gives you a break, though, and time to refocus and store up strength -- go for it. Probably no harm done, really.

On that note, I'm taking the dog for a walk. My problems won't go away...but maybe I'll figure out how to solve a few while I breathe in the beautiful fall air!

ADA Violations

Ten years ago, my husband and I organized a group of concerned friends and neighbors to call the local school district to task in the town of Terrace Park, Ohio. At that time, none of the five public schools were accessible to people in wheelchairs. The school board contended that it had never had to "deal with this problem." We contended they simply never felt compelled to understand or abide by the federal laws.

Fast forward a decade and imagine my surprise to see this clip from Augusta, Georgia, asserting that public buildings there remain in violation of ADA laws! This is unacceptable, offensive and simply not in the best interest of Augusta.

We all need to work harder to ensure that our communities not only comply with the law but actually welcome persons with disabilities. Only then are we really welcoming these people into our communities. Everyone has something to contribute to the town in which they live. Everyone has the right to equal access under the law. Everyone should advocate for this in their community.

Fantastic Field Trips

I'm the first to criticize when something goes wrong; however, I'm also the first to acknowledge a job well done. So I've decided to share some recognition for a fabulous field trip I took last week with Andrew's 8th grade team. We visited Bear Mountain state park in New York on a beautiful fall day. Although they get no credit for the gorgeous weather, I applaud the team for planning a fantastic day for all the kids -- especially our Andrew. Here are few tips for making the most of such an adventure:

1) Reserve a lift bus. The coach bus service chartered by the school offers a lift bus that enabled Andrew to travel with all the other students -- in his motorized wheelchair. Being included like this is really important to him and other non-ambulatory students. Why isolate them in a "special ed" bus and preclude them from all the fun and comraderie?

2) Divide into ability groups. Many of the students were physically unable to complete the hiking trek to the top of the mountain (besides just Andrew). Teachers divided them into small groups and each hiked a different trail, depending upon their desires and stamina. This enabled Andrew to enjoy the outdoors with other students on a fully-paved path that accommodated his powerchair. The view was breathtaking. He really felt a part of things.

3) Offer various activities, based on interests. We did several water quality checks (led by the science teacher), had a picnic lunch, visited the zoo and even spent time at the historical museum located inside the park. Lots of options for lots of different personalities.

4) Parents welcomed. Teachers encouraged parents like me to join the fun and it was well worth it. Sometimes, we're made to feel like we need to "leave enough alone." Andrew's team actually made me feel like it was good to have me on board. Imagine that!

5) Focus on the possibilities. Rather than obsessing about what Andrew could not do, his team of teachers created a day filled with opportunities and new experiences. Kudos to all.

Disability Mentoring Day

Darn. I missed it! Wednesday was apparently Disability Mentoring Day (DMD), and what a great idea. Our son, Andrew, is now a teenager and employment is not far down the road. Parents like me really need to think about what skills our "children" will need as adults in order to live productive, happy lives contributing to their communities in whatever ways they can. It looks like Duluth, Minnesota, of all places, leads the pack in terms of activities and youth involvement. This inspires me to get more going in Connecticut. What are you inspired to do today?