Karate

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.

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.

Soccer

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.

Training Camp

Time for another training camp!

When: May 14-16 (Friday swim, Saturday Ride, Sunday run)
Where: Ironman Lake Placid course
Who: Run by my coach, Matt Giunta, and open to anyone

Training camps are one of the best places to push yourself outside your comfort zone and make major strides in training. Every chance that I have to join a training camp, I jump at it. In February, I pushed myself to do two 80 mile rides, early in the season, which not only improved my endurance but gave me a lot of confidence. I also learned a tremendous amount from training in person with my coach. Over the years, I have made friends at training camps who have remained friends ever since. If you are a triathlete, join us.

To sign up for the training camp:
http://blueshiftmultisport.ning.com/events/lake-placid-training-camp

Vibram Five Fingers

Since reading Born to Run by Christopher McDougall, Erik and I have become devotees of the running barefoot movement. We are slowly training our feet and legs to adapt to running without running shoes. We don't run with naked feet, of course. We run wearing a pair of the Vibram Five Fingers. With tough rubber soles and little cuffs for each of your toes, these shoes protect your feet from rocks and glass, while giving your feet the freedom of running without padding. The transition to barefoot running does not happen overnight. There are all kinds of muscles in your feet and calves that need to be retrained. But running barefoot allows your foot to naturally find the ground, land and maneuver to provide your body support, and forces you to take shorter steps which land you toward the front of your foot (rather than striking hard on the heal). This whole process of natural running is much better for your body. Since running barefoot, the pain I had in my hips has completely disappeared from the left one and lessened significantly from the right. I am told that for people who suffer from heal spurs, running barefoot will solve their problem. If you have no idea what I'm talking about, read the book, Born to Run. If there are two books you need to read in your entire life, Born to Run is number one. I grew up running trails, and went several years without running on roads for more than a quick trail connection. I have sought out trails all over the world, from the remote forests of Tunisia to the well groomed track along the Cinque Terra coast. In recent years, the lack of trails where we live has necessitated road running. We read Born to Run this winter and have begun a new search for trails in our area, which means driving an hour or more for the best runs. We bring power bars, a diluted sports drink and wear lots of bug spray. You feel so light in your Vibrams, and so far from the rest of the world in the middle of the woods, it is a good chance to reconnect with the earth and your partner. We are even tempted at times to run naked.

Oh, and the second book on your life's must read list: Jack Canfield's The Success Principles: How to Get from Where You Are to Where You Want to Be.

Running with Alex

Today was a monumental day. Alex and I went for our first run together. Alex has been talking for weeks about how Mommy runs on a team and Matt is the coach and how he wants to run on a team when he is a big boy. And then this morning, the sun finally came out after days of relentless rain, and so Alex accompanied me on my morning walk with the dog, Teds. Alex was wearing his little crocs. He held my hand and begged me repeatedly to go for a run with him. So, we dropped Teds off at the house, and went back out. The sun was breaking through morning clouds over the ocean where we live, and the birds were singing, and it was truly a beautiful morning to be out. And so, we ran. Alex held my hand because he trips frequently and needs the support. I jogged and he moved his little feet as fast as he could. We went two blocks, stopped to catch our breath and then turned around (reluctantly, because he wanted to run on and on), and ran the two blocks home. Alex kept a running monologue of everything going on around us, telling me about the birds singing and the occasional car driving by and the presence of grass and trees. He was breathing hard at the end and I carried him up the deck stairs to the house. His face was flushed and he was all smiles. He was so proud of himself for going for a run with Mommy. We will make this our new morning ritual. This isn't my only workout for the day, but it was by far, the best run I have ever had.

The Oatmeal Mountain

Alex invented a nice game this morning, which we call The Oatmeal Mountain. Since he loves to cook, and wants to feel and taste every ingredient, I let him place handfuls of oatmeal into a pan this morning for breakfast. Then I gave him about a 1/2 cup into a plastic bowl. He sat on the floor for about thirty minutes, dumping the oatmeal out of the bowl, then gathering it up into a little mountain and then picking up handfuls to put back into the bowl. This is a great exercise for any child with a hand disability. To use his disabled lefty, he had to reach across his body (good for balance and reach), grab with is fingers (good for strength of his hand and fingers), then reach again to put his left hand over the bowl, and then open his hand (good for flexibility, strength, coordination) to drop the oatmeal into the bowl.

He loved this game for many reasons. First, the feeling of oatmeal in his hands was a new feeling. It undoubtedly stimulated his tactile sensations and fired some new synapses in the brain. Second, he was successful at the game, which is important to keep him interested. Alex gets frustrated when he can't accomplish a task with his left hand, and this task was foolproof. Oatmeal naturally stuck to the moisture on his hand, so it was easy to pick up and when he opened his hand, some of it naturally dropped off into the bowl. He loved his accomplishment. Finally, Alex loves to "clean up", an important habit to teach a two year old. When he can be helpful, he feels good about himself, and he learns to take responsibility for his own toys and games. The act of grabbing the oatmeal and dumping it back into the bowl was an act of "cleaning up". When we were finished, we cleaned it all up. I swept and he held the dustpan and then walked the dustpan carefully over to the trash to dump it. This was a good morning activity on a rainy day.

And as for my oatmeal mountain...today is an easy spin day. My weekend workouts are getting progressively longer and harder, so an easy Tuesday spin is a welcome rest for my legs.