Camp, Here We Come!

I awoke at 6AM today to the sound of Andrew was yelling, "Mom! Mom!" Of course, I thought something was really wrong. I entered his room, and he proudly exclaimed, "Today is my last day before camp!" He was so excited he just couldn't sleep. Simply wonderful!

Tomorrow morning, also around 6AM, my husband and I will take Andrew to The Southampton Fresh Air Home. For the sixth year in a row, he'll participate in a fabulous sleepaway camp experience that provides incredible independence and social opportunities for him -- and gives us a chance to rest and relax, in anticipation of the coming school year. Earlier this summer, we feared Andrew might miss camp because of his complicated orthopedic surgery to correct scoliosis. Simply not so. In fact, the camp director instilled great confidence when he said they have lots of experience with kids who are recovering from spinal fusion surgery. How terrific is that? Check out my earlier post about selecting a camp for children with special needs. There are plenty of good ones out there just waiting to be explored.

For now, we're thrilled that Andrew has found a special place that's all his. No parents or siblings required to accompany him. He advocates for himself. Gets his needs met. Makes new friends. Explores his ever-changing world. Just thinking about it makes me excited, too. But I still wish he'd let me sleep in this morning!

More Travel Tips

Just received great info from the Christopher and Dana Reeve Foundation. Very helpful for people planning travel. Our family trip to Paris was outstanding in April, by the way. Lots of good tips to share when I have more time. Meanwhile, enjoy these. This organizaion is really outstanding, I think.

Happy Birthday ADA

Twenty years ago today, the Americans with Disabilities Act (ADA) became the law of the land, ensuring that people living with disabilities are able to be involved in their communities by requiring equal access to employment, education, public transportation and more.

Laws like the ADA can change the lives of people with disabilities and their families. But laws alone aren't enough. As good citizens and active members of our communities, we need to work hard to promote the spirit of these laws in our daily actions. People with disabilities can and should be able to attend school, work and leisure activities alongside their peers. Businesses and civic organizations that aren't complying with ADA requirements should be taken to task and cited for noncompliance. Individuals and groups who go above and beyond should be recognized and rewarded.

The world I want for myself and my family is an interesting and exciting one filled with people of all abilities. Do what you can to make everyone feel welcome in your world...today and every day. It really will make a difference.

Simple Surgical Suggestions

Over the years, I've watched more than a few friends go through difficult surgeries for their children. Now it's our turn. Thankfully, Andrew's operation is not life-threatening and will hopefully improve his quality of life. Still, as I type, Andrew is lying beside me in his hospital bed following a six hour spinal fusion procedure to correct his scoliosis. He was just moved from ICU to a "regular" room and is making progress. Still, it really stinks. He is in extreme pain and truly miserable. Hates the hospital, despite wonderful doctors and nurses, and really just wants to go home. We're doing the best we can to help him heal, but time is really the key element here. The following tips also help and were gleaned from friends and family prior to undertaking this surgery on Tuesday:

1. Second and third opinions are vital. After Andrew's orthopedist recommended surgery, we met with three surgeons at two hospitals and researched extensively online. Each discussion helped us learn something new that ultimately enabled us to make a good decision about how to proceed. Andrew was involved every step of the way, since it's his body and his life.

2. Questions are your friend. A good pediatric specialist, in my opinion, needs to be able to answer the concerns of his patient and that person's parents. Being able to perform the surgery is not enough. Ask questions in the consultation, before surgery, and during recovery. You are your child's advocate throughout this experience and need to be assertive if you don't understand or agree with something.

3. Maintain the status quo at home. We've brought in reinforcements to help with our other two children while Andrew is in the hospital. Friends, family, even paid caretakers. All are involved in an attempt to keep up our "normal" routine for the other kids. This surgery is taking over our life and Andrew's, but it shouldn't highjack that of his sister and brother.

4. Ask for help and accept it willingly. I feel strange saying "yes" to people when they offer to help take care of my family and me. Still, they offer because they want to, and I'm learning to let them. It feels good to lie down and rest instead of sweating over meal prep. Lean on people and let them lighten your load. If I can do this, anyone can.

5. Take pictures. Andrew's surgery is elective, so we're trying to make this a positive experience for him and our family. Documenting key steps in the process seems like a good thing to do and will hopefully help him reflect on this over time. He hasn't smiled post-op, but we're waiting for the big day. That will be one great photo opp.

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.