Thursday, May 20, 2010


Finding a sport that Alex enjoys has been challenging. His balance is so poor that he is intimidated by other kids running at him and balls coming at him, and with his weak left hand, it is hard to hold a bat or tennis racquet. Soccer is tough for Alex, but we recently discovered that if he holds my hand and I run with him around the field, providing him with balance, he has no problem running, kicking and shooting the ball. He and the other kids are young enough that having mommy hold his hand is not embarrassing. I hope that by the time he reaches the age where he would be mortified to have his mom holding his hand during soccer practice, that he will have more balance.

We were very happy to recently discover that karate is not only a sport he can excel at, but which works all of his disabilities. At this age at least, no one touches you in karate. You use flat open hands and kicks and blocks and chops all against a soft pad, at your own pace. Again, I have had to hold Alex's hands through many of the lessons, especially the obstacle course they run through each day. He can not walk on the "ninja rocks" (mats) by himself and needs a hand to hop through the hoops, and needed much encouragement to enter the tunnels. But, the exercises, coupled with the time the instructor spends on discussing important topics like honesty, integrity, respect, patience, and listening are all very worthy of our time. As soon as Alex's sister, Izzy, is old enough, we will enroll her too. I hope they love the sport, and that we can learn karate together.

Wednesday, May 19, 2010

Physical and Occupational Therapy

The question of whether or not to seek professional physical and occupational therapy for a child with a disability is one that his parents often ask themselves, and one that gets asked repeatedly by doctors, neighbors, friends, strangers. Erik and I were all for professional therapy in theory, before Alex came home from the hospital, but began to question its place in his developmental program once we actually experienced it. The type of therapy, duration (how many minutes can a child do therapy at one session? how many months or years should the child continue in the therapy?) and whether it should be conducted by a professional or at home, or some combination of both, depends on the child and the disability, and on the ability of the parents to provide therapy at home.

After several months of Birth to Three, we found the sessions to be somewhat instructive to us as parents, providing us with ideas of new ways to challenge Alex to use his disabled hand and foot, but the 45 minutes sessions once a week were not, in and of themselves, that helpful to Alex. The therapists who met with Alex were very nice, and knew their stuff, but they just didn't do much that we weren't already doing. The sessions often cut into nap time, or meant staying home from the beach, or not going to Grandma's. And when Connecticut presented us with a $50/session fee, we opted out.

A year and a half later, we began to ask ourselves if we should find professional therapists, ones covered by insurance, to be sure we were giving Alex every opportunity to exercise his hand and foot. We asked ourselves this question because we were barraged with the question by pretty much everyone who met Alex, and we got that same disapproving look by many when we said, "Uh, well, we do our therapy at home." To many, I realize it sounds like, "Uh, well, we can't be bothered with his therapy," which is about as far from the truth as a comment could be.

So, we rationalized that you never get another chance at the age of 2-3, an age when the brain is going crazy to develop, and we should be positive we were not missing something in Alex's therapy. So, we found good therapists and enrolled. But the other day, as Alex worked on Mr. Potato Head with his therapist, I wondered why for the $30/session we were paying for these services, the hour we drove, the $25 we paid for the babysitter for Izzy or the time we spent entertaining her at the therapists' office, I couldn't just pull our own Mr. Potato Head out of the toy box and work with Alex at home. True, I had not looked at Mr. Potato Head as a therapy tool, but as we experienced with Birth to Three, the greatest benefit from our professional sessions was what we took away as parents--new ideas for home play.

There are three good things about professional therapy. First, they provide parents with new ideas for therapeutic play. This is a big benefit, but I wonder why we can't just find descriptions of therapeutic play in a book or on the internet (maybe I haven't searched hard enough). Second, children often respond more positively when challenged by a stranger (therapists) than by their parents. Alex is a very agreeable kid, so we don't usually face this problem. Finally, professionals have all kinds of toys and tools appropriate for the child, depending on the disability. In our case, we have most of those same toys at home, in some form or another. We do not have a ball pit, but we do have swings, balls of all shapes and sizes, pegs and pegboard, blocks and shapes, tunnels for crawling through, and we do own Mr. Potato Head.

And so, with some new ideas in hand, we will again stop professional therapy this summer. I don't advocate at-home-only therapy for everyone. It takes dedicated parents with access to the ideas, patience and a few tools to be effective. It also depends on the disability of the child. There are therapies that simply can not be done at home. But therapy at home works best for us, and it has become a part of our lives. We don't eat, drink, bathe, play, read, walk, run, swim or do pretty much anything, without working Alex's left hand, foot and balance, encouraging his independence and self-esteem. Our lives are one long therapy session, much more effective than 20-30 minutes with a professional. But on the other hand, in another year, maybe we will need to refresh our ideas with the pros.

Monday, May 3, 2010


When I was pregnant with Alex, before the kick, before his premature birth, before months of his hospitalization and doctors telling us he might never walk, Erik and I used to talk about coaching Alex's 3 year old soccer team. We assumed he would love sports as much as we do and would want to play soccer as soon as he could. So, this spring, we signed him up, even though he is only 2 1/2 and his balance is so poor. We figured, why not.

Last weekend, he had his first practice. All week he talked about soccer and meeting his soccer coach and the fact that he and Daddy were a team and he was excited to meet the other kids, especially since he doesn't have much interaction with kids his own age. His first practice came on a sunny day, and he could not wait to get there. Once on the field, he did his best to follow the coaches instructions and try to balance well enough to dribble the ball, and stop it with his foot (holding Daddy's hand for balance) and to be part of the little scrimmage the team had. It was hysterical, watching all the little kids scurry around after the ball, get distracted by butterflies and sippy cups, then wander back into the game. For Alex, it was a blast. For us, it was a dream fulfilled.

This past weekend, it was hot and Alex wanted to swim, not play soccer. Several other kids felt the same way and the whole team kind of drifted off the field in many directions. But it was so much fun, just to be out there again, with all these little characters.

My training is taking off. With less than four months to the race, we are building distance. Three hours on the bike Saturday morning before soccer practice. A long run on Sunday. It is extremely hard to fit it all in. I'm up at 4:30 to have coffee and some calories before jumping into my workouts. I know I'm not alone, whether it's someone's dedication to a sport, to a career, to an art, there are sacrifices to make, but they are worth it.