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.

The Beach

The beach is the single best place for children. They can run and roam and explore and throw things and make messes and get dirty and no one gives them directions or scolds them or asks them to put away their toys. They enter their own world and grow from all they experience around them. For a child with CP, the beach offers even greater benefits. For Alex, the beach has meant a peaceful, quiet setting to think. The sound of the waves has lulled him into long and deep sleeps for countless naps. Alex usually walks barefoot in the sand, which provides natural stimulation to his left foot and uneven landscape to help improve his balance. He throws rocks for hours and hours, and on occasion, will generously pass a small stone from his right hand to his left to allow lefty a toss. Together, as a family, we have watched the sun rise and set, discussing the colors we see in the sky and the shapes of the clouds. We listen for boats and air planes and seagulls. When the water warms up, Alex will wade in as deep as he can safely go and then splash around with my help. Water therapy. Soul therapy, for all of us. Now that Alex's sister, Izzy, is 14 months old, she has begun throwing rocks, too, learning quickly all the skills Alex has laboriously acquired in his 2 1/2 years.

We have been fortunate to have had beautiful spring weather this week, and many adventures at the beach. I used to run on the beach, but it puts stress on my ankles and knees, so I save my running for the road and trails. This weekend, Erik and I tried our new Vibram Five-Finger shoes, which allow you to run basically barefoot while offering thick rubber protection for your feet. We are new converts to the idea of barefoot running. We ran 65 minutes on Sunday on trails with no side effects from kicking off our padded running shoes. The book Born to Run turned us on to the idea, and we may never look back. I may even do my Ironman barefoot.

Team Baby Alex Foundation Florida Training Camp with Blue Shift Multisport

I will be racing this season with our foundation's racing team, Team Baby Alex Foundation, and it was as part of this team that I attended the Florida training camp.

The training in Florida was pretty intense, and I consider it a bonus to my training since we were able to pull it off so early in the season. I sometimes envy my friends who live in warm climates for being able to get out on the road in the winter. We New Englanders have to be patient and learn to train hard indoors during poor weather seasons. We cross country ski and snow shoe in the winter and pretend we enjoy the cross training, but what I really want is an open trail in the dessert on a hot dry day where I wear the bear minimum and lots of sunblock and come home after hours on the trail with a dark tan. It has been a particularly cold winter out here in the east.

Coach Matt founded and operates Blue Shift Multisport. To see his website, visit www.blueshiftmultisport.com. He offers all kinds of services, including one-on-one coaching and has a blog and a radio show. This week in Florida was my first time training with him in person. He is not only a nice guy, he is truly a great coach. My tendency, especially when I am training with athletes better than I, is to push, push, push to the point of exhaustion. Matt's approach is to training smarter. We combined drills, with photos and videos to analyze and then examined the reports from my PowerTap wheel, HR monitor and cadence sensor, and we approached everything with a very precise, focused effort. We did three long rides, to include two 80+, and one followed up with a 4 mile IM pace run. We had many hours to talk about our triathlon experiences and as always when training with someone better than me, I learned from just listening.

Back home now, the weather still stinks. We all have spring fever. We take the kids outside every day, no matter what. I bundle them up and let them get wet or snowy, and then bring them in for a hot bath and warm feety pj's. Izzy, now 14 months old, has mastered walking, running and climbing stairs. She zips up the stairs leaving Alex behind, and already I am worried how he will handle his sister surpassing him as he ages. He will start playing 3 year old soccer in April and we plan to start him in karate this fall. We recently read a tremendous book about exercise and the brain, called Spark: The Revolutionary New Science of Exercise and the Brain, by Dr. John J. Ratey, MD. It should be a on everyone's must read book. It is all about how exercise (meaning, getting your heart rate up!) regulates neurotransmitters (meaning, regulates your mood, ability to handle stress, increases your attention span) and increases a protein called brain derived neurotropic factor (BDNF), which improves and strengthens synapses. In other words, exercise makes you smarter, happier, less moody, less depressed, and physically more capable. It helps children with all kinds of disabilities. Some activities, like karate, are especially helpful to children with disabilities because of the focused movements.

The Road to Kona: Our Beginning

Kona, Hawaii, location of the first and greatest Ironman triathlon in the world, is a dream for me. Getting there, that is, as a qualified Ironwoman. I’m 39, and will be racing in the 40-45 age group this year, racing Ironman Louisville, to qualify, which means to win my age group. When I was 17, I asked my parents if I could hire a coach, because I thought I could be a great runner. I was a good runner then. I wanted to become a great runner. They said no, and had plenty of reasons to support their opposition to the idea. One was that they did not believe I would be a great runner, or that spending money on a coach would help me to become one. Their comments sunk into the subconscious and spent 22 years floating around, allowing me to be a good runner, a good triathlete, a good student, a good mother, and good at pretty much everything. But never great.

So, I have hired a coach. I have restructured my subconscious. I dream in great these days, not just good.

But I did not do this on my own. I had help. I had Alex, and it has been Alex’s personal struggle, which has instilled in me the belief that truly anything is possible, no matter the odds, no matter the prognosis, no matter what anyone else believes. What do you believe? I believe I am a world class age group triathlete. And I believe that Alex will run normally one day, which is to say, he will accomplish his own Ironman. In fact, I believe he will run an Ironman one day. I believe he will make it to Kona, as a qualified athlete.

Alex and I are on our own personal journeys to Kona. This is our story.

Alex is my son. He was born prematurely, at 26 weeks, weighing 1 pound, 15 ounces, as a result of a kick I sustained from a horse. In the early days of his life, due to his low birth weight, blood vessels in his brain burst, causing serious and permanent brain damage (Grade III and grade IV bleeds). He has Cerebral Palsy, which disables his left side. He can walk and run, with difficulty, and he has minimal use of his left arm and hand. Through work, practice and therapy, he has gained significantly more use of his left side than we initially thought possible. In honor of Alex, my husband, Erik, and I founded The Baby Alex Foundation to raise money for pediatric brain injury research. To view our site, visit us at www.babyalexfoundation.com.

But for Alex, every task is complicated. He approaches life right-side oriented, which means his left side is only an afterthought, a compliment to the strength of his right side, a crutch to lift his sippy cup, a post to lean on when his right leg is tired. Climbing stairs is a chore that requires great concentration, and coming down stairs is an even greater challenge. Even picking up a spoon to scoop cereal is work. Alex’s sister, Isabella, only 13 months old, is catching up quickly and will surpass Alex in both fine and large motor skills, within the next few months.

Fortunately, Alex approaches his daily tasks with a cheerful, ever present smile, determination and complete confidence that he will achieve whatever he sets out to do. For Alex, arriving at Kona, which he may do some day when he is old enough to enter the Ironman, means simply acquiring the ability to swim, bike and run on his own, without help, training wheels, flotations. Alex’s Kona is not an island in Hawaii, but his entire world.

And for me, the dream is to see him grow, learn, achieve, and be completely independent. My secondary dream, is to race Kona in his honor this year. And to race it with him, twenty years from now.

And so I will describe our journey, my constant push to become fit and lean, and Alex’s constant push to overcome his disabilities.

January 2010

In January, I started my training. My coach, Matt, has me focused on my spinning. We both believe that winter training is where the Ironman is won or lost. I got professionally fitted on my bike, and ramped up my training significantly, not in time, but in intensity. This week, we added the swim, just a gradual re-introduction to the water, with lots of pulling and kicking. I had built a solid swim base from October-December, but then had to have an ovary removed, which meant a week off from working out and then another week of slow moving. And then in December Alex had another brain surgery, which meant a couple weeks devoted to him. Not much sleep. Lots of worry.

In January, once Alex’s head had recovered to the point where we could introduce him to the water again, we started up with serious water therapy. He has always loved the water, and we encourage long baths and lots of bouncing around in the summer. This winter, we have started doing therapy in the tub. We make things up as we go along, and practice what works and what he enjoys. I cut up sponges for the tub, which he loves. Lefty has to squeeze the sponges, of varying colors, and throw them as far as he can. In the beginning, Alex’s hand was unable to open to release the sponge. He had to have righty grab it and throw it, which we allowed initially. But with practice, Alex began to learn how to let go. He started simply dropping the sponge, and then later, tossing it a few inches, and finally, he got in a few good throws and then a few more. This game has become part of our daily baths. He loves it. We also have cups in the tub, large ones that require two hands to pick up when full. Lefty has to help out. We remind Alex to open his left hand, and not leave it balled up. He gets it, and although sometimes he gets frustrated and doesn’t want to play, he usually comes around and uses both hands. He dumps the water into a wheel that spins.

In the pool, Alex is learning to use his left hand to splash, to hold onto the side of the pool, to balance, and to reach out and grab his little orange ducky. He is also learning to put his head in the water, sideways, backwards, and to blow bubbles. We rock him on his back, back and forth, and we make him kick both legs when on his back or stomach. Some days he just wants to jump off the side repeatedly, or stand on the steps and splash. Some days he feels good about putting his head in, and other days he doesn’t. We move at his own speed.

January 26

My new philosophy is that when my children are sleeping, I need to sleep. No matter how much work there is to do on the foundation or dishes to clean, I need more sleep. Training for an Ironman with any seriousness requires additional sleep. And good nutrition. Since I have been eating better, logging everything I put into my mouth with an effort to cut out sugar and lower my caloric intake (I need to lose 15 pounds!), I have had more energy. But, there are limits to how good nutrition can help. My bottom line is that I need more sleep. My coach believes strongly in the importance of rest days, and so they are worked into my schedule. This is new for me. In the old days, I often went months of training without a day completely off. I don’t sleep well, because Alex doesn’t sleep well, and so we have to implement ways to enable me to get sleep. The best way to do this is first, to get the kids on the same napping schedule, which we have finally been able to do, and then for me to put my head down. I don’t always fall asleep, but I rest and sometimes I do sleep. I hope in time I will actually fall asleep. Today, I might have slept for 45 minutes, which is great for me. I feel better already.

I have also had a talk with Alex about sleeping better at night. I told him that if he wakes up, he needs to think of something nice and go back to sleep, without crying and without calling for mommy. Last night, our first night at this, he woke up twice, started to cry out and then caught himself. He actually understood the discussion and tried to implement it. At 4am, he called for Daddy (a first!) because he wanted water. We also have been teaching him to read the clock and he gets that he needs to stay in bed until 5am. He was up at 5:01 this morning.

Today Alex found a new game, which we use to strengthen lefty. He loves flashcards of any kind, especially the alphabet ones. He has some large ones that go with a book about Courderoy Bear. He loves to dump them and then to clean them all up in a pile, by handing them one by one to Mommy. Today, I asked him to let lefty do all the work. Righty still grasped the cards from the floor, but then passed the cards to lefty, who then reached (!) and handed them to Mommy. The grasp and reach is very important.

In the tub today, we are going to play with colored soap, which squeeze out of crayons. I found these in Stop ‘n Shop. I sometimes take a stroll down the baby aisle, even though the stuff if very expensive, and once in a while I find something fun like these crayons for use in the tub. Alex is way too messy to play with real markers or paints in our house, and we are waiting for summer to take it outside, so we stick to things that can come off our clothes, walls and floors. He loves chalk, wet brushes, food (like chocolate sauce and melted ice cream) and now these soap paints. We will see what he and Izzy do with them in the tub. I am also going to introduce a scarf into our music time. Alex and Izzy love music, and using a scarf, trailing it into the air and around the body, helps work not only both hands, but both hemispheres of the brain. This cross the body motion is super important for his balance and development. It can be hard to find fun, challenging games that make him perform this motion, but I think a scarf and music will do it. I got the idea from a music class I saw advertised. The class, by the way, cost hundreds of dollars per 6 week course, and I thought, wow, why pay all that money when you can do these things at home? Of course, Moms like to meet other Moms, but I prefer to save money where I can do the same things at home. We can add a playdate element to it if we want.

Alex’s new brace cut off the top half, and now looks only like a shoe. The top half seems to have been immobilizing his ankle too much and his ankle was not strengthening as it should. Now there is more movement and I think that is helpful. His big toe still seems to press itself against the food, as he grips the floor with it for stability, to we have a velcrow attachment coming in the mail that will pull his big toe over where it should be and force him to balance without that crutch. We are also now considering when we should cast his right hand, to force his left hand to work.

January 27

The scarves worked well. It is funny how you plan something and then your kids find a new way to use things you had not thought of. As we played with the scarves, both kids started hiding their faces behind them and playing peekaboo, and then Alex pretended like the scarf in my hand was a bridge and his went under it again and again (something we have worked at as he was scared to go through or under anything initially). The colored soap markers worked well in the tub, but proved messy as they do stain things. The tub water turned an unsightly color, but they smeared it all over and had fun with it.

My workout today was a 5 miler on the track, 9 minutes at marathon pace (8mm) and 1 min of walking. Then a 2000m in the pool. I felt good. I have been wearing my down vest and ski mittens and hat to recreate the heat of Louisville. So, I was sweating, but it was nice not to feel cold. I have lost about 4 pounds since taking better care of my diet. As my workouts start to increase, I hope to maintain my eating habits and lose some more weight.

February 11

The hardest part about this training is keeping up with the journal. We have discovered some great new exercises for Alex’s left hand. We purchased some very bright, large leggo like blocks. Alex has medium interest in building with them, but he loves to dump out the bag and then put the blocks back in. The blocks are the perfect size for lefty. He can grab and let go of them without great frustration, and it is a great strength exercise for his left hand.

Another exercise we have been doing is to watch what objects sink and what objects float. We use ice cubes, veggies and piece of fruit. Veggies like broccoli are easy for lefty to grab, pick up and drop back into the bowl of water. Lots of fun. We do it in the sink to minimize the mess.

We are also doing a lot with cups in the tub. It is a great way for kids to learn to “drink” out of cups without the mess of spilling. Big and little, Alex must use lefty to pick them up and manipulate them.

Our greatest success this week is the tennis ball. Grandma found an old racquetball racquet at the dump for $1, and she gave it to Alex, who was thrilled to get such a large and manipulative gift. We hung a tennis ball from a hook in the ceiling and now he hits the ball repeatedly with the racquet. It is a fantastic way to get him to move his arms and hands across his midpoint, helping him establish balance, eye-hand coordination and to instill a love of the sport in him.

We have also set up an indoor soccer goal. We just open up one end of his playpen and it became a goal. Alex has learned not to use his hands, but to kick “dribble” the ball down the rug and shoot the goal. These are all great activities, esp in the afternoon when everyone gets cranky!!

My training this week was derailed with a stomach virus, but I still managed to do a bike test on Sat. that showed significant improvement. I feel stronger and am sweating a lot more than I have ever sweat in training in my life. I did a short swim test and will do another tomorrow. I have lost 5 pounds this month!!

March 2

We returned this past weekend from our first family vacation. It was a disguised triathlon training camp, really, where I spent the majority of each day training one-on-one with my new coach, Matt. Erik and I drove all night to get to our lovely condo and were greeted by amazing weather. The kids were so well behaved in the car, despite the 20 hours of driving. They loved the open space of the condo and the lovely warm weather. They played for hours outside in the cul-de-sac and got to go swimming daily. We hung Alex’s tennis ball and he and Izzy hit it with his racquet. Alex got to spend a whole morning alone with Daddy, seeing the alligator park which was a wonderful treat. He got an alligator named “Gaty” and one for Izzy named “Alli”.

I tested my limits and learned so much about my running style (and how to improve it), my biking style (and how to improve it a lot!) and myself, the new self that exists now after a 4 year break from training, a marriage, two children and all of the ups and downs we have faced with Alex. I am stronger mentally, kinder, more considerate, and definitely tougher all around. I truly believe I can qualify for Kona this year and I truly believe I can go on to have a good race in Kona, despite the fact that it will be held just about 6 weeks after my Louisville IM. I read Born to Run on the way down to FL, and that got me fired up to train. I am reading Jack Canfield’s book on achieving your dreams, and that has me fired up to race, among other things.