The Road to Kona

The Road to Recovery

2012-02-18T06:20:00.000-08:00

Alex is on the mend. Strangely, the seizures, or perhaps the medicines he took while in the hospital, have relaxed his left leg and allowed him to run with a smoother gait. I don't think I'm dreaming this, because Erik noticed it independently of me. We don't know if it will last, but it is allowing him to build some muscle strength in his lefty leg. His left hand is weaker than it was before the seizures, or maybe it's also just very relaxed. CP by definition is where the muscles are constantly engaged, and can't relax. So, with some relaxation, Alex's CP has decreased.

Rather than cast his right arm this spring (which is inconvenient, because we still have ski season and lots of swimming we like to do, and we are keep into our hand writing exercises in Mommy School), we using a glove for an hour at time, several times a day. I don't necessarily try to do therapy during that hour, just let Alex go through the normal activities of his day. The minute we glove rightly, lefty comes to life. He is definitely making a left brain to right brain switch, kind of like when you go from thinking in your native language to thinking in a foreign language--your brain does a shift. Alex is finally at an age where he understands he must wear the glove, and an hour is just short enough that he tolerates it. Anything longer would not work. Half hours work better when he's tired.

He is slowly regaining his strength and building stamina after the trauma of his seizures. And so am I. Adrenaline must actually do cell damage because my muscles continue to ache, and I have been knocked back about 2 months in my training. I don't think this is all mental. So, as Alex must do, so must I...be patient and slowly rebuild, physically and mentally. The weather is improving and on warm days we head to the trails, our favorite place to run. We also went back to the pool yesterday for our first swim session. Baby steps. That's what I always tell the kids, and now it applies to all of us. Baby steps, small incremental progress toward a larger goal.

Inspiration

2012-02-16T07:16:00.000-08:00

So, this is an ad, but it is inspiring. I often ask myself the question it poses, which is, "How strong am I?" Just strong enough? Or strong without measure...

http://m.youtube.com/watch?desktop_uri=%2Fwatch%3Fv%3D_7I7iasuIdw%26feature%3Dpyv&feature=pyv&v=_7I7iasuIdw&gl=US

Seizures

2012-02-13T13:07:00.001-08:00

Premature babies run a higher risk than term babies for all kinds of medical issues, from autism to ADHD. Last week, we discovered that Alex's prematurity, or perhaps the brain damage that resulted from that prematurity, has put him at risk for seizures. I suppose we should have assumed he was risk, but as he has been a relatively healthy boy for 4 years, we had never even considered the possibility.

Since Alex started going to preschool in June, he has been sick. Like all children who start school, the first year is a doozy with illnesses. I think this winter is worse than ever-I blame the unusually warm weather. Alex catches everything and recovers very slowly. His immune system is not as strong as his sister's and when he is sick, he won't eat, loses weight, and in general gets completely worn down. Apparently, the cumulative effect on his little body was to create the perfect opportunity for a seizure.

I won't go into the horror of finding Alex in his bed, post-seizure, looking as though he were taking his last breaths of life, or the terror of not knowing what had happened, so quietly, in the early hours of the morning when I was downstairs enjoying a cup of coffee. He seized for over 90 minutes, and we spent a lovely overnight in the Yale ICU. Five days have passed, and I still can't run. I was training about 12-15 hours/week for my upcoming ultra season, which begins in Utah on April 21. But when I try to take a step, everything hurts, especially my psyche. There is no pain like the pain you feel for your children.

It took Alex a long time to recover too. Fortunately, he remembers nothing of the event. It took him days to be able to sit up on his own, walk, talk...he's better today.

And poor Izzy, who witnessed her brother seizing, watched the medics take him away on a stretcher, then observed him plugged into machines and sucking on oxygen, and then had to stay alone at her Grandma's overnight, which she had previously made me promise I would not do to her--not because she doesn't love her Grandma, but because she gets so homesick to be anywhere without Alex. When we were all reunited, Izzy was shocked at the state Alex was in, and asked us repeatedly when he was going to be better.

When you are the family of a preemie, you wrap your arms around each other and face each new obstacle as it comes. Preemies don't just get better and move on. We can't live our every day in fear, but I'm sure there is an underlying sadness in Erik and my psyche that wasn't there when we got married. A friend of Erik's, whose wife and daughter have faced some serious health issues, commented to me the other day, "I know why you run so far. Like you, I need to see the sunrise every day."

40 on 40

2012-01-25T13:12:00.000-08:00

This week, Erik turned 40. After much discussion about how to celebrate this achievement, Erik decided he wanted to run 40 miles. So on Saturday, we ran. Our course took us through the back roads and hills of Litchfield County, CT, which is notoriously hilly, and in January, it's cold. In fact, it was blizzarding.

For the first 20 miles, which covered about 1200 of elevation gain, we met less than a dozen cars, not a single snowplow and it was the morning was magical. We shuffled our way through inches of fresh snow, which made everyone stay inside, except us, spending a romantic day together doing what we love, running. By the second 20 miles, a flatter double loop around the Farmington River, every snowplow in the county was out, and what had been fluffy snow, with a decent grip and soft landing on the feet, because a slushy, slipper mess. Our shoes were soaked, blisters formed, and our quads aches as we slipped backward with every step. Amazingly, we kept it together emotionally, and enjoyed each other's company right up to the last minutes of the 10 hour day. I guess we were both in need of a long, quiet run. I was sore on Sunday, but ready to get back out there for another long workout, which was a good sign in terms of my ultra training. I think Erik took Sunday off, but he seemed in much better shape than I have seen him after any long run before.

Normally, I dislike the cold. I have recently been reading about Badwater, where temps reach over 120 degrees, and it is tempting me to train harder to be invited to this race someday. I remember running in Iraq in August, when evening temps went above 120 degrees. Back then I worried about kidney damage, but had no way of monitoring that, really. I just ran, and tried to monitor whether I was feeling faint. I never did. When training and racing in Louisville, KY last year, in a record hot summer, I never felt like I was overheating. I love running in hot, hot temps. But, I have learned to dress for the weather, so last weekend, running for 10 hours in 15 degree weather, I dressed well, covered all skin, and carried all of my food and water, and actually, it wasn't that bad. Freezing camelpak tubes required frequent drinking, and that probably aided in my hydration. I have also recently discovered that wearing your hair in braids at your ears helps keep them warm. Still next year, our 41 on 41 will probably take place someplace warm.

2012: The Year of Adventure

2012-01-18T12:34:00.000-08:00

Every January our family chooses a moto for the year. 2012 is our year of adventure! Whether planning more trips to the Y to swim, or heading out west for spring ultra training, we are making more of an effort than ever to enjoy travel and adventure together as a family.

Travel is an education. We started traveling at a young age with our children and they still talk about what they have learned from trips we have taken as a family. I am amazed at how the kids grow when they have hands-on, real world, new life experiences. Not only do they learn about regional animals, cultures and cuisines, geography and languages, they have become more curious about the world around them. Since much of our travel so far has been based around my ultra training and racing, they also have fallen in love with trail running (where most of the training and racing takes place). This year, we head to Utah and Colorado, which will include two major ultras, a 50K and a 50 miler. Alex is already talking about how he can't wait to do some awesome trail running as a family.

Running is one of the best therapies we have done with Alex. He has strengthened his left leg, improved his balance, worked out his frustrations, and has fallen in love with the feeling of movement through space. And always, Izzy is by his side. Trail running is tougher for both kids, because the terrain is more uneven. I may try to have Alex wear light gloves this year, so that when he falls, he will have some protection on his hands, which often take the brunt of the fall. Many athletes in the X-Terra races wear half gloves to protect their hands--that's where I got the idea. We'll give it a try.

Yellow Belt-The Rising Sun

2011-12-22T16:40:00.001-08:00

On Tuesday this week Alex earned his yellow belt. As his Sensei explained, he is now a rising sun. The whole family attended the test to watch Alex earn his belt. It was an emotional morning, and a day we will never forget. Alex is such a performer and so in love with the stoplight that he was totally focused and performed the best we have ever seen him. He recited the belts backwards, and performed his moves with ease. At one point he lost focus, and later told me that he was trying to get his dad's attention because a big FedEx truck was passing by the karate school. He is, after all, only 4.

Martial arts, taught by the right Sensei, has been one of the most beneficial therapies and self-confidence builders of anything we have tried. If your child has CP, get him or her into martial arts. But don't just go with any teacher. The teacher needs to know his (or her) marital arts, but also give a nice mix of praise and challenge, discipline and understanding. Alex was 2 when he started karate at the Y. It was a chaotic mess, but the kids loved it and Alex fell in love with the sport. By 3, we found a school we liked and soon realized that a group lesson was too distracting, so he started twice weekly private lessons, first thing in the morning when he was freshest and most cooperative. Children with CP spend up to 5 times as much energy getting through their day, which means anything after lunch time should be easy, fun, and low pressure, because they won't have the energy for focus and self-control. So, you set your child up for success, as we did, and get him into his most challenging part of the day right after an early breakfast.

In the last two weeks, we have seen Alex blossom in other ways. Taking him out of his preschool was our first step. He was so stressed out about going to school every day that we had begun to think he had a learning disability. We were in consultation with a behavioral therapists, who was very supportive, which is important when making big decisions for your children. But once we took him out of school for a few days for a trial run, he returned to our normal little boy, and we realized things were not going well at school. He had such an antagonistic relationship with several of the boys who had bullied him on the playground, that he had begun to have terrible nightmares and meltdowns before and after school. There was no option in this particular school than to pull him out. But, we needed to put him into another social environment quickly because he feared he had failed. So, we started him at another preschool, where he is completely content. Dealing with schools is one of the most stressful issues when you have a child with any special needs. But as a special needs parent, you have to toughen up, let negative people and comments roll off your back, and hug your children because they and only they (well, and your spouse!) need your positive energy.

Our two days a week in Mommy School has been amazing. We consulted a homeschool professional who advised us on some curriculum. Right now we are using Singapore Math and Institute for Excellence for reading and writing. Both are excellent. They require some study on the teacher's part, but Alex is excelling academically. He loves the challenge, the one-on-one, and is building tremendous self-confidence. It is amazing how making a few changes in a child's life will change his state of mind, and yours. Special kids require special attention and creative thinking to find the best possible set-up for success. Really, that could be true for all of us. Having the courage to make the change may be all that is required. The value for this week, incidentally, is courage.

Last Week's Value: Abundance

2011-12-12T15:48:00.001-08:00

I love the value of abundance. It is by far one of my favorites, and one that gets overlooked in our lives. Alex loves this one too, because it is so rewarding. Abundance is the idea that the more of something you give out, the more of it you get back. Or as I really like to think, love multiplies the more it is used so you should not hesitate to give it to everyone--it will all come back to you in multiples. We use the example of love, but also of smiles, hugs, kisses, kindness...and of course the opposite. If you give out a frown, you will most likely get one back. The kids love to experiment with abundance. We smile at people and see what happens. We say good morning to people frowning in the grocery store and see what happens. There is no way that two toddlers smiling and saying good morning is going to get anything back but friendliness, so this value works every time!

Last week we purchased gifts for the family we have adopted this Christmas at a the New Haven Home Recovery, a home for homeless women with children. I love this organization because their point is to temporarily support these families while they get back on their feet--and it seems many (most even?) do get back on their feet. I like to support something where I can see that my effort sustained a family, just long enough to get them to safety, where they can go off again on their own.

So, we bought some things that the family needed--basics like a warm coat, hat and mittens for the child, a few toys, a stocking full of small toys and clothes, and some things for the Mom. Both of my kids completely understood what we were doing. They were having so much fun picking out clothes for the family, that they wanted to buy everything. At one point, Alex fell in love with a toy we picked up for the child and wanted to keep it. I reminded him that Christmas was coming and that we needed to think with abundance, so if we give and give to this family, most likely Santa will give to us too. Fortunately, we had been studying abundance. Abundance is one of those selfish values--you do good to get good.

The kids were so good about picking out these gifts that I could not resist letting them pick out something very small for themselves. It was fun. Giving is truly more beneficial to the giver than the receiver. If you are studying values with your kids, don't forget abundance!

Sensory Issues and the Preemie Brain

2011-12-07T15:21:00.001-08:00

From the time Alex was a baby, it was clear that he had sensory issues that we needed to be attentive to. He used to cry when there were loud noises (such as a truck driving by the house or if our family sang Happy Birthday at the dinner table). He didn't like large groups of people in our house and would go to find a peaceful and quiet place in the house when things got loud.

As he is aging, now well past his 4th birthday, he has outgrown much of that, but still, some of his sensory issues remain. This fall when his classroom grew as children returned from summer vacations, he told me that he didn't want to go to school anymore because there were too many kids. I tried to tell him to find a quiet place in the room when things got overwhelming, but that is a large task for a small kid. He comes home from school completely exhausted emotionally and physically. And he quickly started acting out at school and at home. We hoped in time he would adjust, but his brain has just not matured, and that is something that can't really be speeded up.

I have done some research on the preemie brain and it seems that this kind of reaction to loud, chaotic environments can be common. Some of the preemies end up with non-verbal learning disabilities, where they have trouble reading non-verbal cues, come across as socially awkward and have trouble navigating their social space. Uncertain times, such as transitions from one activity to another, are particularly difficult, and are times when a child may act out. We can't say yet if Alex falls into this range, but we can say for sure that the typical school environment is difficult for him, and not a set-up for success.

After consultation with several doctors and our family, we have arrived at a solution. We will try him in his school 2 days a week rather than 5, and spend three days homeschooling him. I have consulted with a homeschooling professional and identified some excellent math, reading and writing textbooks which will serve as our guide. One of the days he may spend on Grandma's farm, where he spends most of his time outside, learning about the natural world with one of the four people he loves most in the world. Homeschooling Alex is an incredible journey. He loves it and can't get enough of it. He can literally sit for hours and focus on the projects and work, and doesn't ever want to take a break. He learns quickly, and answers intellectually. He is happy, relaxed and well-behaved. And so, we will homeschool while trying to give him some social life a couple days each week at school.

Every few weeks, we will assess Alex's progress and next fall, we will decide if entering into the private school we plan to send him to is in his best interest. It may be that Alex attends only a few days a week, and that the following year, we will be asking ourselves the same question, and assessing once again if he can handle a 5 day a week schedule.

Alex is so smart. He is reading at a 1/2 grade level, doing simple addition, subtraction and multiplication, and he is only 4 years old (and not even gestationally 4 yet). He also has an incredibly kind and good heart. But observing him in his classroom, you would not know he could read nor that he is a super kind and caring kid--he just seems lost and confused and a bit of a troublemaker.

As with all of our decisions, we are guided by what Alex's actions are telling us. This is a time to act, because we will never have his 4th year to relive. So, although I have signed up for another Ironman and several ultra races for our Foundation, and am in the process of ramping up the Foundation to become a million dollar charity, I again must scale back and refocus on what is most important--my children, and their happiness.

If you are a parent of a preemie, you have a life-long road, and just when you think things are getting straightened out, you find another twist in your life. But that is parenting for anyone, I suppose.

A few weeks ago, Alex's old babysitter was lamenting about her job, and Alex said to her, "Yes, your job is difficult, but have perseverance." And when he saw her the following week, he asked about her job. And he added, "You need perseverance, and determination too." Yes, Alex, we will persevere.

Cookies for Charity Day

2011-11-20T14:17:00.001-08:00

Today we held our annual Cookies for Charity Day. Each year, Alex, Izzy and I bake cookies and sell them at the end of our driveway to help pay for the six Thanksgiving dinners we prepare and donate to the most needy in our town. We give the boxes of turkeys and all the fixin's to our town human services department and the minute we drop them off, they get delivered to families who are struggling.

The value of the week this week was charity. We talked about the value, then went as a family to purchase all the goodies for the dinners, then baked our cookies, packaged them and set up at the end of the driveway. We covered almost half of our costs this year. We are amazed every year at the generosity of our neighbors and random people coming through our neighborhood, when they hear that we are donating turkey dinners and that our children are involved. Kids from all over the neighborhood come over and help us market and sell the cookies, which makes it truly a community event. Who could turn down cookies for a few bucks when there are a dozen smiling faces on children waving the goodies in the air?

Charity is one of our most important values. We stress charity and generosity every chance we get, and both children understand what they mean. Basically, it all comes down to giving a very small part of yourself to make a very large difference in the life of someone else. This is how we approach The Baby Alex Foundation, and in our role as parents, although both take more than a small part of ourselves. But both give back immeasurable rewards.

Thankfulness

2011-11-11T13:19:00.000-08:00

Although we should always be thankful for what we have, we often get caught up in the many irritants of daily life. The past few weeks were tough on us, between illness, power outages and Alex's frustrations with school, we have all been a bit short-tempered. I forget at times to be thankful. I also forget to be generous, kind and loving at times because I am tired and cranky.

So, last night, when I viewed a video my sister-in-law sent me, I was again reminded to be thankful for a long list of blessings, to be generous, kind and loving, no matter how tired I may feel. The older brother in this video has shown a depth of generosity, kindness and love toward his younger brother that is hard to imagine, especially given his young age. He has taken his brother's disability and turned it into a vehicle for sharing time, love and responsibility. What an amazing, inspiring story.

I highly recommend taking the time to view this video-it will add meaning to your life.

http://espn.go.com/video/clip?id=7208128&categoryid=3060647

Teaching Values: The Key to Ending Bullying

2011-11-04T08:36:00.000-07:00

We recently had an incident at Alex's school where according to Alex, a number of boys pulled him into a location he was unable to escape from and hit him on all sides. When I arrived to pick up Alex from school, the boys had just been put into time out and Alex was receiving a cold pack on his scrapes and red eye. I won't go into any more details about this incident, partly because we respect the school and generally support their method for dealing with misbehavior, partly because the details are blurry and no one seems to have seen the incident and partly because this blog is never about venting our anger, but all about finding solutions and supporting the overall health of our children and our society.

After much discussion with respected mentors, Erik and I decided we would try to approach the incident from the perspective of how everyone might learn from this, how such an incident might be prevented in the future and how we might become proactive in case we face bullying later in Alex and Izzy's lives. So, we have suggested to the director to work out a plan to introduce a system of values, which many schools have adopted over the last few years. One important issue in introducing values to the school system, is the constant reinforcement of those values in every class, by every teacher, and by parents at home. The director has already incorporated values into the curriculum. The biggest problem with doing so, however, is the that if the parents don't reinforce the values at home, their lessons become diluted. Not lost, I don't think, but diluted.

I am deep into my next book, which happens to be about teaching values to children. We started a year ago and have come a long way in teaching values at home. Our children are not perfect, and they do spend time in Time Out at school. Alex is dealing with issues of self-control. He has been in Time Out for pushing, hugging too hard, hitting, pinching. There is plenty we have been working on, some of which may be caused by sensory issues and others by frustration. Whatever the cause, the problems must be addressed, at school and at home. So, we take Alex swimming after school, which helps with the sensory overload of school. We also reinforce values like a broken record. The kids understand what it means to be respectful, to show generosity, to display good sportsmanship, to be charitable, entrepreneurial, and kind. Our family motto is "work hard, be nice." Not an easy motto to follow, even for the adults in the family, but the point is that we try. We try to be kind and honest, and we try to teach our children through discussions, scenarios, etc. on how to be good people too. I will be including small parts of the book in future blogs.

Four year olds seem not yet capable of fully synthesizing the lessons, unless you walk them through the process. For example, we talk about charity, then we bake cookies to sell, then we use the proceeds to buy turkeys, then we deliver the turkeys to the needy=charity. They get it when done to this degree. Still, they test the waters and when in bad moods, act out against the most important values they can think of. They are toddlers. These are extremely difficult years!

After reading an excellent work by Rabbi Shmuley Boteach, titled Ten conversations You Need to Have with Your Children, we have started asking our children, "What kind of person do you want to become?" (As in, "The nice person who makes people happy, or the mean person who makes people sad?"). This kind of approach has started to have some meaning to our toddlers. I wonder if any of the parents of the children involved in the incident this week bother to approach their children's actions with this kind of understanding. Perhaps they do. Parenting is hard and never perfect.

With this recent incident, our sensitivity to bullying has certainly been raised, not only about how other kids treat ours, but about our own children's behaviors. Is Alex's pushing in school really bullying? Does he try to intimidate other kids? We have asked the teachers to keep us closely involved in any behavior issues so that we may address them at home immediately.

We posted on our Facebook page and I will mention here again, to invite readers to an Anti-Bullyig event at the Kenneth Cole store in NYC, through Divalysscious Moms. For more information, visit www.divamoms.com.

Memorable Moments

2011-10-19T13:28:00.001-07:00

As parents, our lives are filled with many memorable moments of the first time our children walk, talk, smile, and countless other accomplishments that make us wonder at the incredible journey we take together as a family. As the parent of a child whose early life history has been so marked with difficulties and obstacles, our memorable moments at times appear almost like miracles. We have had two of them this month, neither of them marked as a memorable moment when the moment began. Only after they happened did Erik and I look at each other, with tears in our eyes and say, wow.

Because of Alex's disabilities, he has trouble getting up and down stairs, onto beds, chairs and couches, in and out of car seats. His ability to balance and move the needed muscles for these activities is limited. He improves every year, and thanks to his sister, Izzy, he sees what he could do with some courage and practice. Izzy says, "C'mon Alex! I'll show you how." Alex has long accepted that his sister is a phenomenal athlete and gifted climber and so doesn't take it personally that she is younger but more agile.

So, a couple weeks ago at our summer place in New Hampshire, we met up with Relf, the gentleman who built our stone walls and steps that lead down an incredibly steep hill from our deck to the waterfront. He had just finished this project, which had taken all summer and which we put off starting for years. In other words, years have gone by when we were unable to use our waterfront and, if we ventured down there for some reason, had to carry Alex while Izzy slowly made her way down. Relf, who built the stairs, had become a part of our family since he pretty much lived at the site all summer, working away with enormous rocks and stone steps, trying to finish before the season was completely over. It was our last weekend in NH for the year, and Alex had just turned 4.

We stood at the top of the deck and looked down at the water, and I suggested that Alex take his inaugural walk down all of the steps to the waterfront, without being held or supported in any way. Relf stood by collecting the last of his things. Alex started his journey. Scared at the height and the new steps he had to navigate, Alex gave some protest, but continued working his way slowly down a few dozen stairs, over the stone pathways between steps. Meanwhile, Izzy popped up and down the steps, like a gazelle, to the water and back to Alex, then back to the water. After a painfully slow journey, Alex finally put his feet on the dock at the water, and we all cheered. I hugged Alex and realized that one of my dreams had come true. When we learned early on that Alex might spend his life in a wheelchair, we immediate thought of our beloved lake and cried over how he would make it down to the water and enjoy being in one of the most peaceful places on earth. We knew we would make his path accessible, whatever that meant. This summer, thanks to Relf, we finally fulfilled that promise, and Alex did his part to work his body to make it down. We will never forget his first journey to the water.

Another moment happened last week. Alex's karate instructor, Sensei Bagwell, asked Alex to visit one of his classes, where he teaches high level belts. He wanted Alex to recite the names of the belts in Korean, forward and backward, to provide a lesson to his students that with some work, they might learn the belts. When we arrived, we thought we would just pop in, let Alex do his thing (his memory is phenomenal, and we think possibly photographic). But then Sensei started introducing Alex, and talked about when he first met Alex, and how far Alex has come with his karate and balance and use of his left side. He then asked his students who could recite the belts. A few raised their hands. Then he asked who could recite them backwards. Hands went down. Then he grabbed Alex, who giggled and grinned from ear to ear, in love with being in the spotlight. Loud and clear, Alex recited the belts forward and backward, quickly and accurately. Alex's natural charm and mastery of language shone in his spotlight. He chatted up Sensei and made a few comments to the class. He was adorable and amazing at the same time. We were all in tears. Sensei let me speak to the class about Alex's tough early start. As always, I emphasized the importance of exercise to the development of the brain and the body's ability to overcome physical limitations and I reminded the students that through hard work they would achieve anything they set their minds to do. Then we got into the car and came home.

"Wow, Alex," I said in the car. "Do you realize what a charmed life you live? You bring us these incredible moments, out of the blue, that Daddy and I will never forget."

Alex just fussed that he wanted to go back and join the karate class, completely oblivious that he had just knocked the socks off of everyone in the room. Then he fell asleep. It was nap time.

Value of the Week: Courage

2011-10-06T11:36:00.000-07:00

The value of the week this week is courage. It is one of the children's favorites. They love to hear stories of how they find the courage to do this and that, and really can't get enough of it. But this week, we are talking about courage in terms of honesty, which was last week's value. Really, we are talking about character, and how it takes courage to build it.

Milk gets spilled, toys get broken and modeling clay gets embedded into the rugs. We are a house of children. There are times when I find myself getting angry about these issues. I say things like, "Who spilled the milk on the rug?" to which the guilty party honestly answers, "me", and then I lecture about not bringing milk into the living room. At three and four, you still tell the truth most of the time, because you haven't really learned to lie yet...but dishonesty is right around the corner, especially if you know you will be in trouble for telling the truth. So, I've had to work hard at staying calm. The new conversation goes, "Who spilled the milk on the rug?" and when someone says "me", I hug him or her and say "Thank you for telling the truth." Sometimes I even call Daddy, and let him praise the honest child for being honest. You really can rarely go too far in instilling values.

The Gift of Giving

2011-09-28T11:56:00.000-07:00

A few weeks ago I read in the NY Times an article about a woman who decided to give $100 to a charity every single day for a year. That's a lot of money. Her story is inspiring because of what she describes as receiving from her donations. She learned about hundreds of non-profits she had never heard about, and got involved in changing lives, which in turn has changed hers.

We have always been a family that believes in giving, but still, we don't give enough, whether it be money or time or help or smiles. I don't have the time to investigate a new non-profit on a daily basis, but over the course of a week, I can find it. So, I'm trying to donate every week this year to a charity that will use the money wisely. Of course, our biggest donation goes to The Baby Alex Foundation. But, we can spare a few hundred bucks here and there for others.

We involve our kids in our charity work, in hopes of instilling in them both the value of generosity and an appreciation for what they have. We clean out toys and clothes together to donate, bake and sell cookies for our Thanksgiving turkey dinners, and now, we use birthdays as a chance to choose the charity and the amount to give. So, Alex turned 4 last week, and we discussed how important it is to give to people in need. One of my favorite charities is Heifer International, which uses the money donated to buy animals for families all over the world. Over the years, we have made an occasional donation to Heifer.

This year, we have instituted a birthday gift giving. Rather than get a present for your birthday, you get to give a gift to someone less fortunate. On Alex's birthday, we read through Heifer's website and after much discussion and thought, he decided he wanted to donate $50 to help buy a water buffalo. I upped the amount to $100, which bought half of one. He was extremely proud of himself, and talked about it all week. He didn't seem the least bit concerned that he would not get any gifts on his birthday (of course, we had chocolate cake and a dinner celebration), but more excited about what he had given. Izzy turns 3 this winter. We will do the same with her.

Myelination and Acquiring Skill

2011-09-16T02:04:00.000-07:00

When Alex was born, doctors talked to us about a substance called myelin. We learned that it acts like insulation on nerve fibers. We asked some questions but remained confused, and then moved on to other topics of more pressing need at the time, like whether Alex was able to swallow and poop. That was 2007.

What we didn't realize was that breakthroughs in understanding myelin had only been around for a few years, and that the doctors probably didn't yet have answers to the questions we were asking. We also didn't realize that an understanding of myelin would be crucial to our approach to Alex's therapy. Fortunately, research we had done on the brain indicated that children can build new pathways (nerve fibers) in the brain for physical function. For example, if the area of the brain that controls the hand has been damaged, with repetitive use, hand control nerve fibers will form a new path around the area of the damaged brain.

With that in mind, we engaged Alex in repetitive motion, hoping that he might build new pathways around the damaged part of his brain. Even motions that Alex was unable to perform independently at first, such as lift his left foot, we practiced with him by simply using our hands to maneuver the foot. The same was true with swimming and the use of his left arm. In the early days, he was physically incapable of making a free-style stroke with the left arm, so we did it for him, lifting and stretching the arm in our hands. Now, he can do both actions alone. We thought that by feeling the movement, Alex would learn the action, which he did, but we couldn't exactly explain how this happened. We understood that new pathways had been established, but we didn't understand the importance of repetition in strengthening those skills.

The Talent Code by Daniel Coyle, explains elements of why Alex's repetitive motion, even when assisted, has grown into actual use. I have only recently stumbled upon this book, published in 2009, which is one of the best reads I have had so far on the brain. Coyle expertly explains the importance of myelin in acquiring skill. Myelin is a substance that wraps and insulates nerves, like electrical tape around an electric wire. What we thought we understood when Alex was born was that myelin wrapped nerve cells naturally, once, in childhood, and once wrapped they were protected, and if the nerve didn't exist at birth (because, for example, the brain cells had been damaged), then you lost out on your opportunity to form myelin. In reality, myelin continues to form throughout your entire life. As you practice a skill, myelin wraps the nerve cell, again and again, and the more myelin, the greater the skill. Myelin enables the nerve impulse to travel more quickly, and with greater strength and accuracy. Which is why, the more you practice a skill correctly, the more skilled you become. (And the more you practice bad habits, the harder they are to break.)

In Coyle's book, one of the important elements of practice is to focus that practice on fixing mistakes. He gives the example of a little girl learning to play an instrument. During one 6 minute session, she focuses intently on studying and slowly practicing the difficult parts of the music. Eventually she acquires the skill to play through it. He states that she made a month's worth of progress in just 6 minutes with focused practice that targeted the trouble spots.

Another interesting aspect of practice is that it doesn't always have to be original. Coyle uses Emily Bronte as an example. People once thought she was born a brilliant writer. In reality, she and her siblings began writing at an early age as a form of play. They wrote terribly, and often copied from other texts. But, because they worked so hard at their writing, and because they copied from texts with established literary discipline, they were acquiring skill.

And so with Alex, we have a greater understanding of why our physical manipulation of his body helped him learn the movement. We were assisting the myelination process. Until last week, we had been working with his left foot, trying to get him to pull his toe back toward his knee. Until last week, he was unable to even give it a twitch. But, we have been working it. This week, he did it. And then he did it again, and again and again. Then he did it 100 times. Now that we understand myelination, we will refocus our therapy and attack the disabilities with more patience, and hope.

This Week's Value: Optimism

2011-09-07T01:53:00.000-07:00

For about a year, our family has been trying hard to hold Sunday night family meetings. We sit around the dinner table and talk about the past week, our accomplishments and disappointments, and discuss the upcoming week. Every month or so we think of a new value to add to our value board, which is a white erase board hanging on the kitchen wall. When we started, we couldn't get our daughter to sit for more than 30 seconds, so we allowed her to wander off or snuggle in our laps. This year, she has turned a corner and is able to engage. Family meetings, which were once chaotic, are more enjoyable.

We re-organized how we discuss the values because it seemed that there was a lot of talk about them, but not a lot of internalizing how to use them. So, now we write on the white erase "Value of the Week: (value)". I let the kids choose which value they want to focus on. This week Alex chose "Optimism" and rationalized that because it was going to rain all week we would need to be optimistic that we can still have fun. At breakfast each morning we talk about the value and how we are going to incorporate it into our lives. By focusing on one each week, we hope the kids will gain a better understanding of the values and then use them.

Discussion around values (a word we stretch to include any action that makes our lives better, such as "participation", which may not be a value at all) lends itself to talks that are instructive, but not personally directed toward the kids. We play a game where we illustrate what a value means, usually by taking examples from our lives. For example, I will ask the kids which value I am describing when giving the following scenario: You go to the store and give the cashier $10 for some bread and she gives you $20 in return. What do you do? (they answer, and if they say they take the money and run, we remind them of what would happen to the cashier when her boss discovers the missing money, and ask them to answer again). When they answer, we ask them what value they just illustrated. The answer here would be "honesty".

As Alex works to overcome his limitations, and to find his natural talents, these values have become really important. When we started the value game, we didn't realize we were building a foundation that would influence his emotional state--we thought we were just encouraging our kids to be good people. Recently the value game has taken on greater meaning, because words like optimism don't only mean finding fun when it rains, but believing in something you can not yet see, like your future ability to hold a baseball bat, or wear a catcher's mitt. As Alex grows up, he has begun to lose some of his innocence and to make very adult statements like, "I'll never be a good runner. I fall all the time." Now I am able to remind him that just like when it rains, he needs to remain optimistic, because even if he falls he can still have fun, and still become a great runner. The value game has taken on real meaning, and not only for the kids. We can all use a healthy dose of optimism now and then.

Honest Discussions

2011-08-23T07:10:00.000-07:00

Last week, as Alex was winding down before bed, I overheard him telling himself all about his brain injury. I came in on the middle of the conversation he was having with himself.

"...and that is called a brain injury. I got it when I was born. It means that my brain sometimes doesn't work the way I want it to. That's why I have to work lefty..."

I didn't interrupt. I left him to himself to talk it out.

A year ago, when Alex was 2 1/2, on our way into Boston for his annual MRI, we explained to him the details of his injury, how it happened and how it was affecting his balance and left side. Since that time, he has had many questions and has overheard us discussing his brain with doctors, teachers, relatives and parents. Because we try to keep a positive spin at all times on our situation, to help keep us all encouraged and moving forward in a positive direction, and because we know that Alex internalizes every word we say about him, our conversations about his injury are all about working hard to overcome an obstacle that can be surmounted. Alex believes that with hard work, lefty will become as strong as righty, and his balance will eventually normalize. Occasionally, when he gets upset with himself for tripping or not being as coordinated as Izzy, we honestly tell him that he has to work harder than his sister because of his injury, but that he should not be afraid of hard work.

I have at times observed surprise in people who overhear how honestly we talk to Alex about his injury. Not every child is the same, and so perhaps this approach would not work with all children, but for one who can understand, talking about the injury seems to ease Alex's anxiety, and provide him with a greater sense of determination, especially when he observes the ease with which other children accomplish daily tasks. Putting on his crocs, for example, was a major, major hurtle. He was so frustrated when he realized that his younger sister could quickly put hers on without assistance, while he couldn't even get his toes inside without help. We kept telling Alex that when he was ready to start trying to put them on himself, he should tell us. For a while, he refused. We encouraged him to act independently, but did not push the issue. And of course, at some point, he decided he was ready to try. He can now put one shoe on no problem and he can get the other one started without assistance. Getting out the door used to be an incredible battle, mostly because Alex didn't want to sit for his shoes to be put on because his inability to put them on himself was a daily downer. Now that he can do part of the job himself, he loves to sit and get put them on. He leaves every day with a sense of accomplishment.

We spent a lot of the summer in NH this year, surrounded by cousins, aunts and uncles, great aunts and uncles, and grand parents. The kids play together, no matter their age differences. They run and swim together, go blueberry picking, hiking, share their toys and books, tell each other stories, go fishing. It is amazing how just being kids together, without schedules or planned activities, encourages them to grow. Alex keeps up, and all the cousins encourage him at every turn. When he falls running, they pick him up. When he is nervous about jumping into the water, they cheer and clap. When he has trouble holding a tennis racquet or fish rod, they guide his grip. No one is afraid to talk about his "lefty", or to encourage him to use his left side.

And so for Alex, his weakness in his left side has become a simple fact of life that must be dominated and overcome. This attitude should help him in the coming years, when playing sports in school will likely bring on another round of realizations and possible frustrations. We hope that building his self-esteem and outlook on life early will prepare him for the many stages of the emotional evolution that develops in children with health challenges. This early emotional strength is quite possibly the single greatest gift parents can give to their children, whether they face injuries or not, but especially for children who may find themselves in last place in physical activities. Yesterday, Alex told me that he wins every race he enters (in our track club summer series), even though he usually comes in last place. "Really?" I asked. "Yes, I won because I participated." Participation has become our summer concept, and our mantra.

A Sport All To One's Own

2011-08-01T18:44:00.000-07:00

Alex had a very bad day at school last week, and I was surprised because he adores his new school and has been thriving. He was angry and uncooperative, a sign that something wasn't right. Thinking over the day, I realized his mood swing had begun that morning, at his before school karate lesson.

Alex has been taking karate for over a year, and the lessons have helped his balance and strength considerably. I can not rave enough about the martial arts to help children with brain injuries. At this last lesson, Izzy joined Alex for the first time. She has not been interested in karate, but has hit a stage of life where she is ready to begin. She is incredibly agile, has excellent balance and is an all around amazing athlete. She was the star of the lesson. Alex's heart was broken. He acted out in the lesson and I had to have him sit twice, to calm down. He acted out on the way to school, and I made him sit again to calm down. So, it was no wonder he continued to act out in school.

Alex napped after school and I never mentioned his poor behavior in school that day. I let him play and have quiet time at home, while I tried to figure out how to approach this new problem. Alex's self esteem was devastated when he witnessed the ease with which his sister mastered karate, when he has been working at it for over a year. I finally decided to talk about it with both children at bedtime. When I brought up the karate class, Alex said,"Mommy, I'm not good at anything. Izzy is good at everything." He was finally able to articulate the problem, which is pretty incredible for a 3 year old.

We then played a game, where each child told the other what the other was good at. Izzy went first. I asked Izzy what she thought Alex was good at. She was so thrilled to tell him: karate, running, drawing, being a nice brother. Alex put his head in his pillow. He was proud and sad at the same time, because he still felt he wasn't as good at these things as Izzy. Then it was Alex's turn. There is something about praising another person that truly inflates the speaker's self-esteem. He told Izzy that she is a fish in the water, that she is a very fast runner, that she is also a nice sister. It was an amazing evening. I snuggled with both of them as they fell asleep. When it was Alex's turn, we talked more about what he is good at. He wanted to hear it repeated that he was good at things. I explain to the kids all the time that one may be fast, but the other can run long distances; one may be good in the water, but the other is good on the tricycle. We all have our strengths and weaknesses.

The next day, we talked about whether Alex could handle having Izzy in his karate class. It was, after all, his sport, and if he wanted to keep it that way, I would have to find another time of day for Izzy to have a lesson. At first Alex said he did not want Izzy in his class, but Izzy piped up that she wanted to join him. I explained that since they are best friends, they should find it fun to be together in a class. Finally, Alex agreed to let Izzy try it one more time and to then decide if he wanted her in class or not.

The next day at class, I cheated slightly. I kept Izzy in my lap for the first part of class while Alex got settled in and was the center of attention. Then, I let Izzy joined. She did well for about 10 minutes and then lost interest. I also joined the class, to participate with the kids. Alex maintained his poise, and was completely happy at the end of the class. We had one major success. Not sure if it will last, it may need to be readdressed, but for now, we had a success and the more successes in the bank, the better we will be prepared for the downturns.

The Daily Biathlon

2011-06-08T17:07:00.001-07:00

Thank goodness it is finally summer. We are not a family of winter athletes, and every year when warm mornings mean running in shorts at 6am, I take a huge breath and relax.

This summer, we have instituted the family morning run. Alex, Izzy and I have been working on our morning runs for weeks now, and we finally have begun to make some progress. They both, thankfully, love to run. The whole concept began when I started making them get out of the babyjogger during my morning runs when they were hitting each other, and making them run alongside me until they were tired and in theory, too tired to hit anymore. They did stop hitting, but only because they spend most of the run running rather than riding, and when they are resting in the jogger, they are pooped.

We start with everyone running, and then as each of the kids gets tired, he or she crawls into the jogger to rest and then gets out again when rested. They can run about 1.5 miles during a 5 mile run. I bring lots of snacks and drinks, because they really need them to get through so much exercise. At every street corner, I yell "Stop, look and listen" and after weeks of practice, they get that they are supposed to stop, look and listen for cars, and wait for Mommy to give the "go" before running again.

Recently, because of the heat and the biting insects, I brought their tricycles into the living room. Neither of them can ride their tricycles, but they are trying hard. So, while I spin on my bike, they ride around in front of me. And then we go off for our run. We call this our biathlon, and kids now know that "bi" means two and "tri" means three and we do some lessons on other words that begin with those beginnings. A little mommy school thrown in there.

The kids are very proud of their morning accomplishments. Alex thinks we should go the whole way and add swimming so that we can do a triathlon. We will at some point, but since we don't have a pool, the logistics get slightly more complicated. But, as I promised him, we will add the swim leg. He thinks it should come last since you get so hot and tired by the first two.

Anyway, I recommend morning workout to anyone with the time to invest in it. The kids get their synapses firing in time for school, which helps them learn and focus, and of course, it builds good exercise habits we hope they will take with them into adulthood. And for Alex, whose balance and leg strength is poor, these morning exercises have helped to strengthen his legs and core, and we pray will improve his long-term outcome.

A Standing Ovation

2011-04-15T13:46:00.000-07:00

In late March, Alex graduated from his ISR swimming lessons. It was one of the more memorable mornings we have had together. On the way into the Y, we ran into our usual contacts, mostly older ladies and gentlemen who attend the water aerobics classes. They have sort of adopted our kids because we swim 4-5 times a week, and our children are so outgoing that they talk to most of the other swimmers. On this morning, Alex informed everyone that he was graduating from his swim lessons. He was pumped. It was a major day in his early life. One of the ladies told Alex that she would watch him (he asked everyone to watch), and then we changed our clothes and went out to the pool. I wasn't really paying attention to Alex's conversations, but was just trying to keep him and Izzy on track to be on time for the lesson.

As Alex changed into his winter clothes, with boots and mittens, he got nervous about his last lesson. He would be flipped over repeatedly and have to swim and float in his ski clothes to graduate. It would hard on an adult, let alone a 30 pound kid. When Alex finally jumped into the water (or maybe I handed him to his instructor because he was so nervous), the entire other end of the pool erupted in applause. I looked up to see that about 30 men and women had stopped their exercise to clap for Alex. They had all been following his month of lessons, and the word had spread that this would be Alex's graduation day. Alex didn't even notice. He just focused on his task. After about 6-7 minutes, he had accomplished his mission, and his instructor stripped him on his clothes and let him float in his bathing suit to reballance. And then, it was over. She handed an exhausted little booby to me for hugs and a warm towel.

And then, the whole place started clapping. I looked up again to see the entire pool clapping for Alex. Alex looked around in complete disbelief. For me? he seemed to say. I couldn't help but burst into tears. How could any of them have known what an amazing day it was to see Alex swim. He can only use one arm/hand and has terrible balance with one leg, which means he is really swimming with one side of his body. But, he swims, he floats, he manages to keep an airway above water, AND, he even loves it.

There are major milestones in the lives of a preemie, and a preemie's parents. We never really know if what we think and hope and pray and dream of will ever really and truly come true for our children. We dream our kids will finally learn to roll over, and then someday take a few steps on their own. While other two year olds are running around and kicking balls, we look at ours and try to be thankful that they can sit up or stand. Although Alex can finally run, he falls every day, trips over his bad foot. As the mother of a preemie, your love is deep, but your heart is hard. It melts at the sight of your child completing anything. As Alex struggles to stay on his tricycle without falling off, I am often reminded of days like his swimming graduation, and my hard heart is made a bit softer.

And then I am reminded, though Alex and his many supporters, that while the world may be a very difficult place for any of us, there are people like the men and women of the water aerobics class whose simple applause made a lifetime of difference in the lives of our family.

ISR Swimming

2011-03-07T03:34:00.000-08:00

One day at our YMCA, I noticed a woman teaching ISR (Infant Swim Resource) swim lessons and at first glance, the lesson seemed a bit rough. The child was crying as he was being thrown backwards in his clothes into the water. He would pop up to the surface and float, then turn onto his tummy and swim, then roll over and float and then turn over again, swim to the edge and get ready to pull himself out of the water. What I didn't realize was that this child was at the end of his ISR swim lesson training and was wearing his winter clothes while his instructor threw him in the water, to simulate falling into the water by accident. This child was going to survive an accidental fall.

Then one day, after several months of daily swimming with my own children, I threw Alex up into the air. I thought he had been learning to swim with me over the winter, but when he landed in the water that day, he sank to the very bottom and stayed there. I pulled him out by his foot and realized that if he were to fall into the many bodies of water that surround our house and daily lives, he would not survive. So, I enrolled Izzy and Alex in ISR swim lessons. We were very worried about how Alex would adapt to these challenging, 10-minute daily lessons, and so we let Izzy start for two weeks so that Alex could witness her success and want to join her. Starting Alex after Izzy turned out to be a good decision and by the time his turn came to take lessons, he was jumping out of his skin for "his turn".

Our swim instructor is very attune to the children she teaches. Each child is taught according to his ability and to how he is adapting to the lessons. She has slightly modified the lessons she gives Izzy to accommodate Alex's different learning style. Izzy jumps into everything and just goes. Alex, more cerebral and deliberate, needs to understand what he is being asked to do. He needs to take very small steps and do them repeatedly, even when it appears he may have mastered that particular step, before he is ready to move on to the next step. Our instructor listens to us and to Alex and has adapted in a way that makes Alex feel comfortable. He is being challenged, but it isn't scary. Although he still cries sometimes during a lessons, it is only briefly and not out of fear, but is his way of showing his emotion.

The incredible result is that after just two lessons, Alex is floating on his back very relaxed, and then she he turns over to swim to the wall (head under water), he does so, with eyes open, very bravely. The instructor provides only the most necessary physical support to allow Alex to feel that he is doing all this swimming on his own. In another few lessons, he will be doing it entirely on his own. When I was instructing him, if I even let go of him with one hand, he had a small meltdown. Now, he is swimming without support and believes he can do it.

I recommend ISR to every parent I meet. Many parents are afraid of the lessons because they see children cry sometimes. I see children cry sometimes in the Y lessons, which aren't even the least bit challenging to the children. And by the end of the ISR sessions (4-6 weeks, depending on the child, of daily 10 minute lessons), the children are water safe. Some can swim with strokes the full length of the pool and the younger ones (6 months) may only float. But none of them will sink to the bottom of the pool when they are thrown in. For children like Alex with physical disabilities, the swim lessons are even more important.

For more info on ISR swimming, visit their website at www.infantswim.com.

Karate, Karate, Karate

2011-03-01T04:00:00.000-08:00

I can not say enough good things about the benefits of martial arts for children. In recent weeks, we have seen some major breakthroughs for Alex, most notable in his balance. All children would benefit from pursuing a martial art, but children with balance issues (and I have read, also children with ADHD and other attention issues) benefit considerably. Until a couple weeks ago, Alex was unable to bend both knees forward to pick up something or do a frog jump. His left leg always bent in, which made his balance poor and did nothing to strengthen the leg. Alex's karate instructor realized Alex's posture when bending would prevent him from moving forward in his karate. So, he began a series of isolated drills and stretches and repeated practice to get the bent leg to stay straight. Once Alex felt the correct posture a few times, he understood what he had been doing wrong and began to self-correct. He now bends correctly all the time. He is so proud of himself for this major accomplishment that he practices it frequently, further strengthening the leg and the synapses of the brain.

I don't know if there has been any research on the frequency and timing of therapy in disabled children, but our observation is that when we do therapy (like karate and swimming) in the morning, Alex is in good spirits. He then naps, and during his sleeping period, he synthesizes the morning's lessons (research HAS been done on the benefits of sleep for children to process what they learn). When we try therapies in the afternoon, Alex is cranky, even if he has napped. He has a small morning window in which he is well-rested and able to happily participate in lessons. For children with physical limitations, their caloric expenditure is many times a child without these limitations, and so they are exhausted by early afternoon (or lunch time, even, in Alex's case). Knowing this, we take extra care and attention to scheduling Alex's daily activities so that we have success.

The Pemberton 50K

2011-02-21T05:36:00.001-08:00

The Pemberton 50K in Scottsdale, AZ kicked off Team Baby Alex Foundation's 2011 season. The race was awesome. Such an incredible group of people who race ultras--very low key. Ultra running legend Pam Reed raced, and several of the top ultra runners either ran or manned the aid stations. Since I had just finished reading Pam Reed's book, it was a thrill to see her in person. She is tiny, and I believe one of the ways to save your joints if you are an ultra runner is to avoid carrying any extra weight!

Alex and Izzy came out to see me off and met me half way through. Alex loves a race. He was chanting "Go Mommy Go" at the start. Izzy was angry that I wasn't running with her in tow. The race started at 5pm and around 6:30 I turned on my headlamp. Running at night is a bit surreal and lots of fun. I finished in 5:58, and had a great time. We then spent the a week in AZ training in the McDowell Mountains, in hot, dry weather. Returned a bit achy and tired, but strong. It's snowing today in the northeast and I can't remember why we live here.

The best part of the week was seeing the kids blossom on the trails. Izzy is turning out to be an exceptional runner. We took the kids to the trails every day and let them dictate our speed and length. On the first day, we had to drag Izzy off the trail because we were all starving for breakfast. She would have kept going. Alex loves to say now that we are going for a "trail run". We took them to a nature hike that had pictures and samples of the flora and fauna and they learned a little about the AZ environment. Education trip.

School Comparison

2011-02-02T13:40:00.000-08:00

Choosing the right school for a child is difficult, especially when they are little and have trouble expressing what they like and don't like about a teacher or environment. Alex is such an agreeable child that he does his best to get along with everyone and be happy no matter the situation. It took a horrible experience with his montessori school this fall for us to realize that we needed to pay closer attention to Alex and Izzy's verbal and non-verbal cues in regard to their school setting, babysitters, playdates, etc. We left them in that school too long, hoping things would get better and suffered a very difficult few months following their withdrawal as we tried to make up for the damage done. Although I still support montessori methods in theory, I see how those methods could be used as a blanket to cover for poor teachers. When I found Izzy crying on a bench at her montessori school, and was told that she was crying because she was being forced to sit on the bench and would not be allowed to play with the other children until she put her shoes on by herself (at 21 months), and was told that montessori supports children doing things for themselves, I realized this school had completely misinterpreted Maria Montessori's message.

Last week we visited another school. I had to drag Izzy into the car because when I mentioned "school" she completely melted down, terrified of another bad experience. But, when I finally got both children in the door of this new school, they immediately relaxed. Izzy spent a few minutes apart from everyone as she assessed the situation. Alex jumped right in. By the end, they were totally unconcerned about whether I might leave them there for the day. They were happy. On the ride home, they both said they loved the school and wanted to attend. This was a huge change from the fall, when Izzy cried every day when I dropped her off and every day when I picked her up.

One thing I like about our new school is that the classes are small, no more than about 10 students per class. Additionally, it combines montessori methods with traditional play and teaching. It seems many private schools are adopting this method, of using the best of montessori with other more traditional teacher-centered instruction, to make the environment more comfortable for the children, especially the youngest ones. Although I am a former teacher with an Masters in Education, I am not an expert. I look at education through the eyes of my children now. They are bright, motivated children who crave knowledge. So, we are working as a team this time, evaluating schools (babysitters, friends, etc) together, to make the best decisions we can.

Run Across America

2011-01-14T02:33:00.000-08:00

Jeff Grabosky is about to head off on his run across American. He will be wearing a Baby Alex Foundation t-shirt for part of his run, and saying prayers for people in need. We have asked Jeff to say prayers for all premature babies and their families.

Although Erik and I are not religious people, we believe in the power of faith and collective human strength. When Alex was in the hospital, thanks to the efforts of our friends and friends of friends, hundreds of people we never met said prayers for Alex. We can never thank all of those people, and we will never even know their names. We can only pass on the strength they gave us to others who are suffering. If you know someone in need of prayers, please contact Jeff. He will be running with a rosary, and will have many, many hours over hundreds and hundreds of miles to say prayers.

And if you can help Jeff along his run, please contact him as well. He will be staying in his tent on nights when he doesn't have a friend to stay with along the route. And if you are a runner, join him for a few miles.

His website:

www.jeffrunsamerica.com

Thank you.

Values and Rules

2010-12-20T09:53:00.000-08:00

Through Success Magazine, Erik and I have been introduced to two incredible parents. They are not new to the parenting scene, but we have only just discovered them. Linda and Richard Eyre are best selling authors, have an incredible website, give lectures around the world on parenting and are just the people we were looking for when we decided it was time to gain some order around teaching our children values. You hope as a parent you model what you want your kids to learn, but there is so much more that can be done to actually teach them about values and healthy living. I am currently reading Three Steps to a Strong Family and Teaching Your Children Values. You have to be ready to do some work, prepared to accept teeny tiny baby steps forward as progress, and then just have fun with it.

Taking the Eyre's advice, we have involved the kids in coming up with "family rules". When I have one of them alone, I do this work, because usually when they are together, the exercise quickly deteriorates. They have come up with so many great rules for our family and I have written them all down. At some point, I am going to stick them into 5 categories, and then post them on the wall. Things like, "when you are speaking no one else should speak and then they should say excuse me when they want to speak" from Izzy (say scuse me to speak and Ales no speak when Izzy speak) and "no spilling coffee or juice on purpose, only by accident" from Alex. Great rules.

We are also slowly working through the values section. After explaining what the value means, you give the kids examples and let them come up with some of their own so that they really get the concept. You can then role play. Izzy doesn't quite follow it all, but she tunes in every once in a while and it will surely sink in as she approaches her third birthday. A 3 year old is totally ready for these exercises! We have so far worked through honesty, courage and peacefulness. Alex loves hearing scenarios of what it means to be each of those, and how one can act to reinforce these values. We role play and he loves it.

The punishment for breaking the rules (or the peace of the house) are as follows, thank you Eyres: If you hurt someone else, you sit on the repenting bench (we aren't religious, but we kept the name) until you can explain exactly what it is you did wrong, apologize and then hug. We force the hug. Izzy only hugs on her own terms, so she ends up on the repenting bench at times when she won't let Alex hug her. Once she repents, they hug nicely. Forced hugs, like forcing a smile-feelings often follow actions, and it seems to be working so we will keep at it. If you are loud, you sit in the quiet chair until you quiet down. Unlike time out, which wasn't working very well for us, these two places for punishment really seem to be working.

We have also been sticking with the weekly family meetings where we discuss our week, our goals for the week, our activities and any problems, concerns, etc. The kids love these meetings. They also get their salary at these meetings from Daddy's piggy bank into theirs--one quarter for every star on their weekly start chart. You get a star for cleaning up your toys, your room, for being polite and nice, and using your left hand (even Izzy!).

Sounds like a lot of work, and it is, sort of. Once you get the hang of it, you can often do much of the work while doing something else. We tend to travel a lot with our kids, so we hold family discussions in the car, which is usually a very quiet place to talk. We run scenarios and explain values. My weekly star chart is usually the back of an envelop or other stationary which I quickly scribble the days of the week on, and I usually only remember to write a star onto the chart 2 or 3 times a week--you do the best you can. Taking the time in the beginning to get yourself organized will save lots of time later on.

Part of our reason for establishing these rules and values are obvious, to create a system of order and punishment that is fair, consistent and effective. But the second part of our effort has to do with how the rules and values engender self-esteem. Alex and Izzy feel part of the process, as integral people in the family, with responsibilities to uphold and jobs to do. They see the fruits of their labors, whether it is a happy parent or a quarter, and in the process they learn very adult concepts. Through this process, they are building self-esteem.

Ski Bums

2010-12-20T09:34:00.001-08:00

This weekend, we got Alex and Izzy on skis for the first time. We had no idea how we were going to approach teaching them how to ski, something our parents never did for us but which we figured out how to do later in life. We just happened to be going by a ski store on our way to the farm this weekend, and we stopped in to see about buying skis, which are very expensive to rent. You hate to actually buy skis, kind of like buying ice skates, which you know your kids are going to use a few times and grow out of by the next season. Alex and Izzy are the same size now, so no chance of passing anything down to Iz next season.

We happened to be served by a very experienced snow instructor who explained the process of teaching 2-3 year olds how to ski. He recommended these skis called "Lucky Bums", which look like skis but attach gently to the child's snow boot. The most frustrating thing about skiing for most people is the ski boot, its awkwardness, the difficulty one finds when standing up in them, etc. Kids hate them. I witnessed my nephew have countless meltdowns within minutes of putting them during his first two seasons learning to ski. This instructor said that once the kids get used to wearing the Lucky Bums, and become comfortable walking and gliding around on almost flat surfaces, we could move on to the ski boot, next season. He said we should then let the kids use the actual ski boot like a snow boot and walk around in it all winter in the snow to get used to it. Once they like it, you can then finally get them on real skis.

I was worried about how the kids would react to being on skis, or maybe just worried about how I was going to feel if they had full blown temper tantrums and refused to try skiing. Erik and I recently started listening to Darren Hardy's Compound Effect (awesome book!). He explains how every goal you want to reach in life, whether to become a multi-millionaire or an elite athlete, takes baby steps, done consistently over time. And so, Erik and I reminded ourselves that our 2 and 3 year olds were not going to zip down the slopes this season, and we needed to do nothing but praise even their small efforts.

Izzy got on her skis first, and took off down the steep driveway with me holding onto her ski jacket. She loved it. She, like her mom, is an adrenaline junkie. We did that a few times and then I tried to interest her in a flat surface and she kicked off both skis and announced she was finished. She lasted about 5 minutes. So, when Alex got into his skis, I expected the same. His first ski session lasted about 15 minutes, and he seemed just fine with the fact that he was unstable on his feet and that we held both of his hands and gripped his waste and kind of pushed him on the flats. We then went sledding. After some indoor playtime, I tried to get Izzy to try again, but she wanted nothing to do with the skis. Alex said he would try. After an hour, without holding my hand or being held, but just walking and gliding around on the driveway, I had to switch off with Grandma because I needed lunch. We simply could not get him to come in. Eventually we bribed him with dessert. But, as soon as he had eaten, he was back out there, shuffling along like an old man, talking and singing and having a grand time. We seem to have found another sport he loves, which makes me very, very happy.

Botox Treatment

2010-11-24T02:53:00.001-08:00

Yesterday, Alex received his first botox injection into the two most problematic muscles in his arm. The injections were painful, although he held his breath and only whimpered a little, and then the pain went away and he recovered. He was incredibly brave. We talked all morning about the process and when we arrived at the hospital, he was nervous but trying very hard to accept his fate. Alex's pediatric orthopedic surgeon is amazing and he is madly in love with her. She takes her time and explains everything she is doing to Alex so that there are no surprises. Alex's physical therapist was also there to examine the arm and agree with the surgeon on which muscles should be targeted.

They did a physical assessment of the arm before the treatments and then again about an hour later as he had a new cast made for his right arm. To our complete amazement, the botox had an almost immediate effect. By the time his new cast was made (which will restrict his right arm while the muscles in the left arm work and get stronger), his left arm demonstrated measurable changes. Alex has never been able to do a karate chop with lefty. But after the botox, which deadens the nerve endings of the muscles that were causing problems, he was able to do repeated karate chops. He was also able to cover his face with his hand and reach for things with less rigidity. I am excited to see what today brings, as it takes about 3 days for the nerves to completely die. Over the next three months, they will regenerate, and hopefully do so in a manner that will allow the hand and arm to function more properly. Even Alex noticed a difference last night when we were doing demos for Daddy.

Alex knows that he needs to work that left hand. He told me yesterday that it was so much work to make lefty do things. We have been talking a lot about work, and how important work is for getting where you want to go in life. The physical therapist touched on this as well. We'll see how working with the cast strengthens that left arm.

Building Self-Esteem

2010-11-23T06:44:00.000-08:00

We had a pretty large setback with Alex when he attended school this fall. Whatever had been going on there, and then happened on that one day he didn't get his snack, it did some serious emotional damage. For weeks now we have been dealing with the repercussions. He repeated what he says his teacher told him, that he is a "bad boy", and still acts out every time he says it. He still talks about not getting his snack that day, and he often asks me if I will feed him even if he is "bad". Grrrrr. Apart from being furious at the school, not to mention the director's insensitive and extremely unprofessional response to our withdrawing the kids, I am really saddened. We have done everything we know how to build Alex's self-esteem, to tell him that even if he can't do something right now by himself, like putting on his shoes when his younger sister zips through putting on hers, that he will get it. We talk in very adult terms about the weakness in his left hand, how proud we are of him for working so hard to make it stronger, and how one day, it will be just as strong as righty.

After listening to an excellent CD from Success Magazine's November 2010 issue, I have been inspired to add to my repertoire of exercises in self-esteem building. Part of the discussion centered around having families and children write down goals, for the family, for the year, academically, in extra curricular events, and in character building. It goes on to discuss how introducing children to the idea of earning money for things they want helps build their sense of self-worth. I listened to some of the ideas on how to implement both parts and came up with our version for children age 2-3. This morning, in Mommy School, we practiced what will become our evening ritual: picking up our toys and straightening up our rooms to earn one quarter which the kids get to put into their piggy banks. I let the kids help me come up with the chores, and which toys they would like to pick up. Then we practiced. Izzy picks up blocks. Alex takes care of little toys and trucks. Even on the first try, they did it and were thrilled to plop their quarters into their piggy banks.

Recently, Alex has been writing to Santa because he really wants some Thomas the Train toys, specifically two he saw in a magazine that came in the mail. I told him that Santa usually bring one big toy, but rarely two. He just can't fit it all on the sleigh. After our exercise in cleaning up toys, Alex said to me, "Mom, I think Santa won't bring my toys this year." I asked him why, FEARFUL he was going to relive his school experience and say that he is a "bad boy", and to my astonishment, he said, "Because Santa wants me to earn the money to buy them myself." Wow. Mommy School was pretty much over after that. There was no better lesson I could teach today.

But Mommy School really never ends...so then I made Alex and Izzy police officers to police the problems we have in our house. Small children, small problems, I know, and this is a good lesson in healthy habit-building for when we have larger children and larger problems, I hope. Alex uses bad words on occasion when he is angry. So, Alex is now the Word Police. His job is to be sure no one says bad words in the house, and to also encourage good words. I help him think of good words we can substitute for bad words, and for compliments we can make to one another in the family to make the other members feel good. Izzy is the Potty Police. She is responsible for helping everyone go pee-pee in the potty. The kids take their jobs very seriously. Erik is actually the one who gave me this idea. He had a problem kid when he volunteered during business school with at-risk kids. This kid would eat and steal the snacks that the whole group was supposed to share. So, he made this teenager the Snack Police (maybe he called it something else, Snack Manager? I don't know.), and this kid took his job very seriously. He made sure no one, not even himself, took the snacks.

Food and Music Therapy

2010-11-22T02:38:00.001-08:00

For children with physical disabilities, incorporating food and music into their therapy makes therapy a lot more fun, even something for them to look forward to. Alex does not like most therapy that we use to strengthen his arm and hand. But when we add food or music, or both, he forgets that he's in therapy. Creating hand turkeys last week was a lot of fun and good exercise for lefty. I mixed up the sugar cookie dough and allowed him to first knead it, then help me pat and roll it (all activities that use both hands) and of course, he got to eat some. We then placed lefty on the dough, which was tough. When he is excited or nervous, Alex makes a fist of lefty and it is hard to get him to relax to open it up. We were not able to trace over lefty, because he couldn't open it all the way and got frustrated when I encouraged him, so we just let lefty play feel and play with the dough. Any new texture on that left hand stimulates the hand. We traced righty. The next day, we used frosting and candy to decorate the turkeys while we sang a turkey song and continued to discuss Thanksgiving. Izzy had a blast and was very focused when I traced both of her hands.

This weekend, we discovered another therapeutic musical exercise. Alex has been working at the piano, guitar and drums for months, two activities that he naturally will use his left hand to perform. I don't know why lefty follows what righty is doing when it comes to music. Maybe that is something that could be studied more seriously--is it just because music is fun to do with both hands, because new areas of the brain are activated when it hears music, because the music relaxed the brain and muscles and allows the functioning muscles to overpower the tense muscles? I have no idea. When Alex is doing almost anything else, he can find a way not to use his left hand, but when it comes to music, his left hand is immediately involved. He could easily play the piano with one hand, because he is not yet reading music, but he never does, he always puts lefty up there and pounds away with lefty too. The same is true of the drums and the guitar (mostly air guitar which he sings along with, imitating his uncle who is an exceptional banjo player). Alex has asked Santa for a drum set, which Santa will surely bring (Costco, $19).

So, the exercise we discovered this weekend is the harmonica. His grandparents pulled an old one out of a drawer and Daddy showed Alex how to use it, and he immediately started playing it. He loves it. The unique point about the harmonica is that when you hold it to your mouth, both hands are turned toward your face. This is the exact movement that Alex has so much trouble with. His CP causes his hand to turn outward which makes it almost impossible to feed himself, draw, put on shoes, etc. Gripping the harmonica, with support from the strength of the right hand, helped the necessary muscles in the left hand take over so that he could turn his hand toward his face. It was amazing. Because he didn't realize he was doing "therapy", he was relaxed, enjoying his music, and therefore, his left hand was relaxed. His misbehaved left arm muscles relaxed and stopped fighting the muscles that make his hand turn inward.

Incidentally, cookie sales on Friday were excellent. Alex and Izzy had a blast selling their cookies, and soon a handful of the neighborhood kids were helping us too. We took the red wagon down the street with our sign and cookies on top and sold them to the road crew working on our road. In an hour we had sold out. We raised enough money to buy 3 large turkeys. We talked about the activity all weekend, further reinforcing the point of the exercise to the kids. An awesome activity!

Cookies for Charity

2010-11-18T05:04:00.000-08:00

Every year, Erik and I donate turkey dinners through Human Services and other avenues to families who can't afford them for Thanksgiving. This year, we have enlisted the help of our children. Alex is just at the age where he understands the idea of giving, and through this process we hope to begin instilling a life-long sense of charity. A recent Success Magazine article discussed the fact that it is never to early to teach children about money, saving and charity. I agree. Both children have piggy banks, which periodically will be converted into cash in their saving accounts. They understand it takes money to buy things, and that not everyone has the money they need to buy the things they want.

As part of the educational process, Alex, Izzy and I have been baking cookies to sell this weekend to raise money for our turkey dinners. Today at Grandma school we will bake more cookies, in the shape of our hands which we will then decorate like turkeys, all part of their schooling experience. As with every exercise, Alex will have to open his left hand completely while his right hand (with my guidance) helps him trace his left hand on the sugar cookie dough. This is a good lesson for anyone who has a child with CP that affects the hand. It's fun, not too taxing, and rewarding to watch the hand turn into a turkey.

I read a lesson plan online which we used this week to reinforce our idea of thankfulness and giving. We cut out shapes of leaves we found during our outdoor hikes, and then wrote on them what we are thankful for. We put up a thankful tree on our kitchen wall and as we think of thinks we are thankful for, we add them to the leaves on our tree. The children love this exercise and it has sparked many positive discussions. I think they will be prepared at Thanksgiving this year as our family goes around and talks about what each of us is thankful for.

Team Baby Alex Foundation Heads to the Jerusalem Marathon

2010-11-15T12:19:00.000-08:00

Thanks to the generosity of one of The Baby Alex Foundation donors, the Foundation is offering an all-expense paid trip (entry, airfare and hotel) to the Jerusalem Marathon for three of its top fundraisers who will run the race on March 25, 2011. For more information about this exciting racing opportunity, visit the website www.babyalexfoundation.com. Every runner who raises at least $2500 will get a free charity slot in the race, and anyone who raises $5000 will be entered to win one of the all-expense paid trips. The winners will be chosen this winter at a fundraising event in NYC. Stay tuned for more info on that event.

If you are a runner reading this blog, join Team Baby Alex Foundation at the inaugural Jerusalem Marathon. Help us raise funds for and awareness about the Foundation and its support of pediatric brain injury research. Anyone racing for the Team will fall under our Adidas sponsorship and receive lots of cool Adidas gear. You might even land in the documentary being made about the event.

It's fun. It's for good. Join the cause!

Mommy School

2010-11-14T03:06:00.001-08:00

Mommy School started on Monday, and I have never seen our kids more happy, cooperative and excited about every day as they have been this week. I do my best to create short (10 mins), interesting lesson plans and to incorporate a lot of body movement, for a couple of hours each morning. After the lessons, we go outside, no matter what the weather, and get wet and dirty and tired. We come inside for lunch, bath and naps. That is Mommy School. It is taught in English, Italian and sign language. This week, we read books, learned another handful of Italian words, reinforced the alphabet in our three languages, sang many Christmas songs and thanks to Alex's suggestion we clapped out the syllables, studied our globe, learned the difference between a dolphin (mammal that breathes through a whole) and a shark (fish that breathes through gills), an herbavore and carnivore. We potty trained on a schedule. We put our napkins in our lap and pretended we were at a restaurant when eating. We had music class, art class and on Thursday we went to Grandma's farm for science and art. Thursday is Grandma School.

Basically, I am teaching the kids what I had hoped they would get out of school this fall, with the addition of a healthy dose of love. Although I have lessons planned, I move according to their rhythm, and when it appears it is time to get up and dance, we do. We study words of the week, and this week, our word was happy (Izzy's) ecstatic (Alex's) and felice (happy in Italian for Mommy). We ended the week with the word cooperation, to prep for the weekend when cooperation is required for our activities. Homeschooling takes a lot of work and patience. It also takes us much of my day. I work on the Foundation in the afternoon and evenings. I am completely exhausted by the end of the day, but seeing my children so happy, using lessons they learned during the week in their everyday conversations, and being so excited for more, I feel for the first time since I had children, like a good parent. Parenting can be so unrewarding sometimes, especially if your measure of success for most of your life involved your career and adult relationships. But, watching the kids go from incredibly unhappy just a few weeks ago, to the happiest I have ever seen them, makes me feel I have made a difference in the world, because I have made their world a place they want to be in every day. Positively influence the world on a micro level, that is what we do as parents.

People may think the kids' lessons too advanced for this age group, but I say, if they get it and the info is useful to their lives today, then teach them. I take things down a notch for Izzy, so that each lesson reinforces numbers and colors and other knowledge she should be learning at 2. Why is it important to understand what a mammal is when you are 3? Well, mammals live in the water but breath through a hole, like our nose, and must hold their breath under water, like us, and now when I take Alex to the pool, he wants to swim like a dolphin and I hope this helps him stop choking when he puts his head in the water. Why is it important to know where the continents are, that koala's live in Australia and Ni Hao Ki-Lan (a cartoon) is from China and that Italy is the small country shaped like a boot? Being able to locate these places on a map helps to give the kids a sense of place, an understanding that there are places different from home where people speak and live differently than we do. They love maps, a foundation for navigating mental and physical space. Why learn different languages? Because it develops the brain, and should build their ability to learn languages in the future. Both kids have learned the languages they speak as easily as they have learned English and I believe that all schools should start their language programs at this age. Both kids want a challenge, and the school we had them in this fall wasn't cutting it. Hopefully Mommy School will do it, for now. At least Mommy is satisfied that the kids are taught with love, and challenged intellectually.

Sleep as a Measure of Happiness

2010-11-10T03:02:00.000-08:00

As Alex grew more stressed out at his montessori school, his sleep patterns started to change. As we look back on the time period, we realize Izzy's sleep patterns were changing too. Izzy is incredibly self-confident and not the emotional sponge that Alex is, and so we usually feel no matter what happens, she will bounce back. Which is to say, we should be more attentive to stresses in her life, because we missed this one. For about a month, neither child was sleeping well, and both had stopped napping. Although many 2 and 3 year olds stop napping in a completely normal way, it was not normal for ours. Rather than nap, our kids dragged themselves unhappily through the day and had fitful nights of half sleep. We tried everything we could think of to get them to nap, including driving them in the car, taking them in the baby jogger, etc., but both were agitated. I thought they were growing out of their naps. I now realize they were stressed out. During our vacation, they started napping for brief periods. And now, they are back to their normal routine, napping at least 2 hours every after lunch. They wake up happy, they sleep well at night.

Last night Erik commented that it had been weeks since he had seen our children as happy as they were when he came home from work. We picked Erik up at the train station and Alex couldn't wait for his dad to hear him clap out the words of Frosty the Snowman. This is not something we taught him, but something he picked up on himself from reading the Frosty story from a book that plays the tune (and which he has not heard in about a year because the battery died, but which probably came to mind on Monday when it snowed--he can't wait for real snow). Everyone had to be quiet in the car while he clapped, one clap for each syllable of the song. Izzy joined in, not quite on cue, but she tries to be part of everything Alex does. Incredibly, Alex clapped out the song exactly as it would have been sung. We then listened to Frosty on a CD I purchased that afternoon, and Alex complained that it did not go the way the book did--the lyrics were different. Incredible that he recognized it. The rest of the night proceeded in this vein, two happy children.

Our experiment in school has been a painful lesson for all of us. I knew Alex would be stressed out by a large class size, but when I visited the class last year, there were only a handful of children in the class. This year, the director allowed 19 toddlers into the class. I was nervous about this situation, but thought we should give it a try, and there was one wonderful teacher both kids immediately attached themselves to. Although we were never crazy about this school, we thought it would be a good introduction for our kids, and how could 3 hours a day be so that detrimental? Well, we found out. The kids' favorite teacher quit after 5 weeks because she didn't like the way the school was run, and our kids never quite found an emotional replacement. If the school and teachers are not right, any amount of time can be detrimental. But, we are adapting and because the kids are showing obvious signs of better health, we know we have done the right thing. Their nap patterns alone tell a detailed story.

Changing Course

2010-11-07T10:13:00.000-08:00

Last week, we took the kids on vacation. It was not a particularly fun vacation, because we were doing work on one house and then on another house. It rained a lot and was cold and we were without many of our toys, no TV, etc. But, the kids got to see their grandparents and cousins a few times and just have time to be themselves.

At the start of the week, Alex was incredibly angry. He had reached an all-time high in his anger. He was completely impossible. "No" to everything, bad words, lots of hitting. We were really concerned, and bewildered. There was an incident at the school the week before, where he had either been told or made to feel that he was "bad", and which he repeated at least a dozen times. "Mrs. So-and-so says I'm a bad boy." And he was definitely acting what he felt others were seeing in him. During that same incident, he had not gotten his snack and when I arrived to pick him up, he was crazed with hunger, begging me to give him something to eat and drink. He says his teacher told him if he used good manners he would get his snack, but he didn't and so did not get a snack. The teacher denies this. Either way, Alex believes he was denied snack for bad behavior and this belief has sunk deep into his psyche. I spent the week reading on CP and anger, and we used the vacation week as a time away from the school environment and to practice new approaches to help Alex deal with anger. I can't tell if anything we did actually helped curb Alex's anger. He just seemed to wake up calmer every morning. By Thursday, his behavior had taken a noticeably better turn. By Sunday, we had gone 4 days without significant behavior issues. More importantly, he had been happy for four days, smiling and laughing and relaxed.

Was it school that was stressing him out? Undoubtedly. Was he frustrated seeing other kids perform basic tasks with ease which he couldn't do? Was it the teacher who made him feel "bad"? Was it the biting and hitting he received from other kids in the class? Was it the chaos of the large class size? All of it, none of it? Whatever the stressors, Alex was not thriving in school. I recently read John Maxwell's Failing Forward, which advises that if you find yourself on a failing path, get off it. And so we did. When we mentioned on Sunday that he was returning to school, he got upset and said he would not be given him snack because Mrs. So-and-so thinks he is a bad boy and won't give him his snack. That was all I needed to hear to pull both kids out of the school.

For now, we will return to home schooling. The kids have been accepted into a phenomenal private school, but before embarking on that path, we want to be sure Alex is ready for school. Maybe we will start in the spring, or wait until the fall. Maybe we need to wait another year. We will progress slowly and evaluate. The single most important thing we can do for Alex right now (and I might argue, for any child) is to build his self esteem, through love, trust and positive experiences. That is our mission, and our responsibility.

It Only Takes One Good Teacher

2010-10-29T11:25:00.001-07:00

It only takes one good (or bad) teacher to truly affect a child's development. Fortunately, Alex has connected with one of the teachers in his class. Today she told me that she and Alex have a secret hand shake, which she calls a hand hug. They lay their palms flat and (hers against his left hand) and curl their fingers around. Alex uses it when he needs to communicate something to her that he can't verbalize. She uses it when she needs to get his attention and address a behavior. I will try it, or something like it, at home. I was so impressed with this simple idea. She said was very effective this morning. We'll try it. Thank goodness for great teachers.

Charting New Waters: School and Emotional Health

2010-10-27T01:22:00.001-07:00

Alex started school this year, and over the past month his behavior changed drastically. Our happy-go-lucky child slowly started pushing, hugging too tightly, taking toys from others and more recently, using two bad words, repeatedly. At first, we treated his behavior as a 3 year old change, but soon realized we needed to reexamine his actions and more importantly, our reaction to those actions and our efforts at boosting his self-esteem. When Alex went to school, he began to realize that he can't do what other children can do, and it was the first time he started to process this difficult realization. He is very frustrated. He is also 3. We have a tough combination. Over the past week, rather than put him in time out when he misbehaves, I ask him if he is angry. He says he is, but doesn't know why. I give him a big hug and tell him what a good boy he is, and his poor behavior stops immediately. He is good for several more hours, and then he trips up and we go through this loving routine again. His behavior has improved overnight and continues to get better. We also realize that he needs extra sleep, extra calories and extra time alone with his parents to help this sensitive and intelligent child process this change in his life.

We were initially disappointed with his school on many levels. That said, we have increased our communication with the director and teachers and believe we can all work together to address Alex's physical needs within the context of school and help him pursue more challenging work. A school that does not regularly teach children with disabilities needs help from the parents of the disabled children so that they are able to address each individual child's needs. No one wants to be guessing as to how they should treat a child with special needs. The school also needs excellent teachers, a solid director, and a philosophy of love and patience. When looking for a school for a special needs child, some of the questions that might be helpful to ask are whether the school has ever had a special needs child, how they have addressed the disabilities, how they push children intellectually, how they attempt to build self-esteem. If there is or has been a child with special needs at the school, it might be helpful for the families to communicate with each other as well.

And as with sending any child to school for the first time, parents truly need to be attentive to changes in the child's behavior, sympathetic on both sides, to the child and the school, and courageous to work through problems while showing their child extra love and support. If the school really doesn't seem right, then maybe a different school would be more suitable--but that decision must be made after a serious trial period, because transitions are extremely stressful on toddler. The fall, I have been completely consumed with the kids. All of the time and emotional energy I spent training last year is now spent with the kids, helping them adapt to all the changes they are facing. It is a very difficult job, and has challenged me to read even more literature on toddlers, emotional issues faced by children with CP, toddler school transitions, extraordinary memory in children with brain damage...a whole range of topics.

Base training starts Saturday. Ironman St. George, one of the (if not THE) hilliest Ironman in the series is the first weekend in May. Right now, I'm exhausted, have a terrible cold, and am completely out of shape. I always say there should be a special division for Ironman Mommies with toddlers. I wear my Life is good t-shirts frequently, and am reminded of our blessings. Alex may not be able to put on his shoes by himself at age 3, but I'm sure by the time he goes to college, he will have figured it out.

Jeff Runs America

2010-10-13T03:17:00.000-07:00

There is no euphoria like that which you feel from a long run. Your mind is at peace, your creativity is sparked and you are prepared for whatever kind of day is thrown at you, and you get to eat a couple of chocolate chip cookies without feeling guilty. You might even have had the simple pleasure of watching the sun rise. People often ask me if I ever have a bad run. I have slower than I would like runs, races that don't go as planned runs, but any run that you finish is a good run, and the longer the run, the better.

I was recently introduced to Jeff Grabosky, who will be doing some very long runs in the near future, traveling across country in running shoes, from CA to NY. Although I have never met Jeff in person, we connect, like most runners do, over the long run. I have always wanted to run across the country, and hope to do so some day. In the meantime, I will keep track of Jeff's progress and keep him present on our blog. I know Alex would be all for joining Jeff on this long run, so maybe we will track him down as he approaches the east coast to keep him company for a few miles and deliver pizza. Jeff will be wearing a Baby Alex Foundation t-shirt during parts of his run as an honorary member of our team. Thank you, Jeff. We'll post any pictures he sends to our website.

To view Jeff's progress, go to www.jeffrunsamerica.com.

Karate Therapy

2010-10-08T07:16:00.000-07:00

I have written several entries about Alex's experiences in karate, but as it continues to amaze me how therapeutic this sport has been to his left (disabled) side, I need to keep writing. This week, there were three instructors for three children in karate. So, the instructors were able to work individually to help the children improve the precision of their karate moves. In particular, they worked on punches and kicks (all done against a kick pad).

The punch is one of the best movements we have found to strengthen, lengthen and turn Alex's left arm. He has trouble extending this arm, which due to his CP is chronically bent. He also is virtually incapable of punching his arm out straight. Instead of going straight, it turns inward, forcing his hand into a twist. Because of this awkward movement, Alex can not feed himself with his left hand. He can't use it to pick things up off the floor or use crayons. This is a serious disability. The repeated movement of punching forward, against a target (the pad) which adds a level of focus to the movement, has helped Alex to begin to gain some control over that arm. He fights against the tendency to turn inward, but he succeeds to some degree to keep it straight. The instructors did fast punches last week, which meant that the children had to punch their right arm against the right pad when it was held up, and the left arm against the left pad when it was held up. The pads were held up at random, and the children had to react. It required great concentration and focus. After about 10 punches, the children had to take breaks, then regroup and go again. I was amazed at how much better Alex's left punch became over the course of the 7-8 minutes of this exercise.

Alex's balance is still poor. Two of the main objectives of this class are coordination and balance. One way to work on balance is to balance on one leg. The instructors allow the children to hold onto the instructors' shoulders to help the children gain a sense of the balance needed to perform a one legged stand. They work on raising knees. These knee raises and balance help with their kicks. Alex's grandma, Gigi, gave Alex a punching bad last week, which we hung from the ceiling. Over the course of the first part of the week, Alex tried to raise both legs up high enough to kick the bottom of the bag. He practice was noticeable in class on Wed. The instructors all commented that his kicks were much higher and more controlled. His left kick is finally turning into a real kick, as opposed to a slight movement of foot off the ground.

More importantly, Alex is gaining a sense of self-confidence over his body. The instructors are truly awesome and they praise when they see hard work and improvement. They emphasize "doing your best". For the rest of this week, Alex has been repeating what his beloved instructor, Ryan, said about his work in class, that he was improving through hard work. Alex is so proud of himself and for this reason, he loves karate and continues to practice and slowly push beyond his physical limitations.

Morning Track Sessions

2010-09-29T10:37:00.000-07:00

There are 19,000 students in Naperville District 203 (west of Chicago). In 1999, the eighth grade class of Naperville, along with over 200,000 students from around the world, took the TIMSS (Trends in International Mathematics and Science Study exam). They finished 6th in math and 1st in the WORLD in SCIENCE. The average American high school scored 18th in science and 19th in math that year. Why did Naperville score so high? Why does Naperville consistently rank high in its test scores and graduation rates? According to Dr. John Ratey, in Spark: The Revolutionary New Science of Exercise and the Brain, it is primarily due to Naperville's revolutionary approach to PE. Here is a snipit of info from the book.

At 7:10am, Naperville begins its day with Zero Hour. The kids run. They wear heart rate monitors. They are graded on how long they keep their heart rate above a target. The kids don't have to be fast, but they have to put in a good effort. They run every day. Then they go to their most important classes, like math and reading and science. In essence, they flood their brain's with Miracle Grow for the brain, a protein called brain-derived neurotropic factor (BDNF), which is produced during strenuous exercise. The role of BDNF is to strengthen synaptic pathways, so that information learned may be retained. In essence, the students at Naperville are smarter because they exercise before school.

I run every week on the track of a local high school, alongside high school PE students who truly depress me. Two weeks ago I spoke with the PE teachers and suggested they read the book Spark. They both acknowledged the research, the data on the positive benefits of exercise and the brain that has flooded neuroscience in the last few years. They say their school administration knows of this research as do their staff and board. And yet, this year, they cut PE from 3 times per week to 2. The students running on the track are truly pathetic. There are only a handful who can complete a mile, let alone run it under 10 minutes. Most of them, in my opinion, are overweight. Maybe I'm a bit too critical. They certainly are not fit.

These days, Alex runs a 1/4 mile as his warmup. I take him and Izzy to the track before school, mostly because if I don't, they turn my house upside down doing laps around the kitchen island. I prefer to have them run freely in the open space of the track. Alex loves to yell out as he finishes his first lap, "I'm running so well, Mamma!" If there are any spectators, and especially if one of them makes a comment, like "nice running", Alex turns up the juice and picks up the pace, clapping for himself the whole way. Izzy prances like a foal, effortlessly moving through space. They inspire me, and their smiles make us all happy. Hopefully, when they go to school and work on reading and block building and colors, their BDNF will be working its magic. Running is clearly working its own magic on their self esteem.

I wonder how hard it would be for a school to open its doors an hour earlier, to offer the locker rooms for showers, breakfast in the cafeteria, and a volunteer staff person or two to monitor the exercise. The program might begin voluntarily. Kids who want to run sign up. They might be graded for PE. Or, they might be recognized at the annual awards banquet. Maybe as their classmates witness changes in the runners' appearances, their increased self-confidence, their higher test scores, and their bonds of friendship that only form over hard labor, the inactive ones would sign up and the attendance rate would grow. It seems like it would be worth trying. Isn't that the single responsibility of a school system, to give their students the best opportunity possible to grow, physically and cognitively--in essence to create the opportunity to run? It almost seems negligent to do anything less.

Thank You Perez Hilton

2010-09-21T07:43:00.000-07:00

For those of you who follow Perez Hilton, The Baby Alex Foundation is his featured Cause of the Day at www.perezhilton.com. When you get to his website, just search for The Baby Alex Foundation, and you will find information on us! Thank you, Perez Hilton, for some very much needed and appreciated marketing.

The Baby Alex Foundation launched its newly designed website last week. We will email our donor newsletter tomorrow (on Alex's 3rd birthday), so if you haven't signed up for our newsletter yet, please visit the site and sign up. The newsletter is also posted on the site.

The Foundation is well into its fall fundraising drive, which includes a reception in NYC on November 11th. To donate, get more information on the fundraiser or how you might help us market the Foundation and raise money for our 2011 pediatric brain injury grants, please visit our website: www.babyalexfoundation.com.

Thank you, thank you Perez!

Karate

2010-09-17T03:09:00.000-07:00

For reasons entirely of convenience, we signed Izzy up for karate, along with Alex, who is now taking his second session. The sign-up says the class is for children 2 1/2-5 years old. Izzy is only 20 months old. I did not have high expectations for her participation, but I thought she could at least watch, and that would be more beneficial than trying to find a babysitter for her for the class or forcing her into the child care across the hall. To my great surprise and relief, she jumped right in and loves it. She needs me to stand next to her, and to run with her through the obstacle course, but that is only to provide moral support.

And Alex...he has completely come out of his shell. He was timid and shy during the spring session, but is now the first one to raise his hand for anything. He is completely focused on the instructor and the tasks at hand and no longer needs me to help him through the obstacle course. What impresses me the most is how his balance is improving. He was barely able to raise either of his feet off the ground to kick during the first session, but now can raise both of them equally well. This is partly due to his age, I'm sure, but also due to the fact that he has been practicing for his karate class. He is also challenged to kick higher and balance longer in class than he would have been at home.

Before we read about the benefits of karate to children with neurological issues, it never crossed my mind to practice punches, sticky palms, blocks and kicks to front, side and back. These movements really help Alex's balance. He is also learning when it is okay to punch and kick (in class, in self-defense) and when it isn't (at your sister or the dog). It helps to have a children-savvy instructor. Alex's instructor is excellent. He allows the children to be children to a point, and then reigns them in and asks them to focus so they may perform. He compliments them on their natural abilities and occasionally shows off his skills, which are impressive and demand respect.

Pacticing Finishes

2010-09-12T12:21:00.000-07:00

Although I have thought and talked about goals I achieved while training for this latest Ironman, I didn't think about how my racing might affect the kids, except to worry over whether I was spending enough time with them and giving them enough energy when I was exhausted. I didn't really see other positive effects of my racing until we got home from Louisville.

I was standing in the kitchen contemplating my missed spot in Kona, wondering if I should enter IM Florida a few weeks away to give my race another shot, while Alex and Izzy were playing around me. Then Alex said, "Mommy, hey Mommy, watch me. I'm crossing the finish line." He then ran around the kitchen island with Izzy trailing behind and he threw up his hands as he crashed into the couch yelling, "Go, Alex. Way to go, Alex. You finished!! Yay!!!" He jumped up and down and waved his hands. "I finished my race, Mommy, did you see?"

I read in the NY Times this week that child obesity is on the rise in NYC, despite efforts to lower it. I have no idea the percentage of unhealthy children who have unhealthy parents, but I would bet it was pretty high. If Alex and Izzy are active because their parents are active, then we aren't only doing something for ourselves by being athletes, we are influencing the long-term health of our children.

On Sleep

2010-09-07T12:33:00.000-07:00

Sleep seems to be the cure for much suffering. It heals the body and mind, physiologically and chemically. It can also be a marker as to how much you are stressing your mind and body. If you need more sleep, you are working harder than your previous normal.

Over a week now after the Ironman, and I hardly need to sleep at all. For 4-5 days, all I could think of was sleeping, but once my body recovered, it became an energized shell of my former self. Training has pushed me into another zone of productivity, and now that I am not training with the same intensity, I am able to be more productive in my office, with my kids, in my writing, etc, on less sleep. I am back to my old routine, up at 4:30am, in my office to write until the kids wake up, then working on The Baby Alex Foundation during nap times (I used to nap with them when I was training), and then again in the evenings I back in the office to work or read after the kids have gone to bed. I am still training, gearing up for a 50K in October and a 50 miler next March, but neither of them takes the same effort as a multisport event done well.

I learn much about sleep from watching my children. On Mondays, they nap for a good 3 hours. They are exhausted from new weekend experiences, playing with friends, staying up a little too late. And when they are sick, my children nap and nap and nap. And they recover, quickly usually, unlike I did when I was training and not getting enough sleep. Night time is a bad time to teach them something new--they need a good sleep to process the days' experiences and before they can learn something new.

The one element most new long distance athletes forget to factor into their life is sleep. They can plan their day around work and training, but they forget to plan sleep into their schedule. Often, it just isn't possible, especially if there are children involved. But somehow, the body manages to adapt. I know that my health high will wear off over time and I will be back to needing 8 hours of sleep a night and not being as productive as I want to be during the day. I'll know then it's time to train for another Ironman.

The Day After...

2010-08-31T07:22:00.000-07:00

Today is actually the day after the day after, because we spent the entire day after the race in the car driving back from Louisville. This morning, I woke up more stiff and tired than yesterday, ready to get into the pool to stretch and do a short workout.

I finished 19th in my age group, not fast enough to qualify for Kona. I lost the race on the run, which was brutal. Temps in the mid 90's, high humidity, the times were very slow on this race for everyone. I knew things were really tough when several of the pros walked past me, on what I thought was their second loop of the run, but which turned out to be their first loop. I have never seen so many people walk in a race before, even one this long. Still, I trained all summer in the heat of the day and was very disappointed in my legs for giving out. I walked through the aid stations, but ran the whole race, hoping to find some hidden strength that just wasn't there. It was an awesome race, despite the disappointments, and I accomplished many goals along the way. And now I am ready for 2011!

Ultra distance races are so amazing on so many levels, one of them being that no matter your performance, you can't help but smile and feel so proud and honored to be crossing the finish line, fortunate to have a body that will physically take you to the end. The day before the race, we took Alex on a trolley ride around the city, which was a thrill for him. We discovered the trolley the previous evening when we hopped on it to get to dinner. That evening there was another rider, like Alex, who just wanted to ride for the fun of seeing new sights, the thrill of the hum of the engine and to hear the bell go ding-ding. He was a young kid, in a wheel chair, with severe brain damage, obviously unable to walk or function on his own. He was with his two caretakers. My heart hurt, for the little boy, for all children with CP and for the parents who do their best to care for them. It also reminded me that no matter what, I needed to have a safe race. Alex could care less if Mommy qualified for Kona. He just wanted his mom to snuggle safe and sound in his bed when it was all over.

The crowds and the volunteers are amazing at these races. They are so dedicated to the racers, giving their energy all day to helping the athletes find the courage to keep going, even when mind and body say stop. Louisville was particularly friendly and volunteers traveled across the country to help out. Thank you, thank you volunteers! You have inspired me to do something good for someone today.

Alex and Izzy had a blast on this latest adventure. They logged miles in the hotel hallways, swam in the pool, waddled around the city of horses with great enthusiasm. They seem to have grown up a little bit over the weekend. And Erik, such a trooper to help drive, care for the kids, support my training for 9 months, and be there to hug my disappointment away at the finish line...he realizes it is a lot more fun to be the athlete than the spectator, and he is already signed up for Ironman Canada in 2011. Thank you Erik and I look forward to being on the other side of the finish line.

15 Hours to Race Morning...

2010-08-28T12:46:00.001-07:00

We arrived, after 13 hours of driving and a trip to Hersey World. Bike is checked, so are bike and run bags. I swam the course this morning with all 3000 of the other atheltes in the race this weekend. The Ohio River is a great place to swim, tastes like mud, but a nice 85 degrees for those who like it hot!

Weather looks to be in the mid 90's on race day, but the humidity is much less than it was 5 weeks ago when I trained on the course. Should be a beautiful day for the race. My general observation is that Ironman athletes are in better shape than they used to be 4 years ago when I did Florida. As the sport heats up, the competition is tougher and everyone is in better shape.

Louisville is lots of fun for the kids: free trolley rides up and down 4th Street, a great pool at the hotel to swim, tons of running space along the river.

I'm exhausted. My Ironman will be done when I finally line up to enter the water on race morning. Sunday should be a lovely day of doing what I love to do, without anyone calling my name ("Mommy") to tell me their poopy diapers need changing. There should be a separate race for Mommy's!!!!!

The Countdown

2010-08-24T03:34:00.000-07:00

So, with exactly 6 days until the race, the countdown has begun. Six days from now at this time in the morning, I will be marked with black ink on my arm and leg, and will be watching with amazement as the pros start their powerful swim. The Ohio River is immense and intimidating, with a strong current and murky, dirty water, and watching the pros clobber it as though it were a monster sneaking out of the closet gives us mortals confidence that we can stand our own.

Alex, whose maturity level at times seems to match my own, is beside himself with excitement about the upcoming adventure to Louisville. He understand we are taking a major trip, that Mommy is going to be racing a triathlon (and that he wants to race too!), and that we will be making stops at some exciting places. We are stopping at Hersey Park, at a hotdog stand featured in Diners, Drive-Ins and Dives on the Food Network, at a horse breeding park in Lexington, and staying always in hotels with pools. Izzy, who understand less about the actual details of the adventure, nevertheless does not want to be excluded, and when we talk about it, she heads to the door to put on her Crocks, ready to go. "Ready," she says. "Not yet", I say. "We still have a couple more days." "Ready," she repeats, feeling as I do, that we might as well get this show on the road.

Short run and swim yesterday, short spin and run today, short run and swim tomorrow. The legs have completely stopped aching, my body is no longer tired, and yet, I think to myself, am I really ready, can I really cover 140 miles in a few days, shouldn't I keep training for a few more months or maybe just get in one last 15 miler or 80 mile ride, just to be sure?

One of the major lessons I have learned through long distance racing is to trust my body. Your body will perform as you have trained it, and often slightly better. If you can shut off the logical side of the brain, which tells you that long distance events are crazy, that you need to rest in case you get chased by a lion tomorrow or run out of food this winter, and race on pure emotion, you not only race well, but you also find yourself at complete peace with yourself.

Taper Time

2010-08-19T04:17:00.001-07:00

One of the hardest parts about training for an Ironman (or any event, really) is the taper period. After 7 months of hard training, you suddenly must slip into easy training 2-3 weeks before the big race, and then nearly no training at all for the last week. It is physically and emotionally painful. This year, I have trained harder than every before, and the taper is particularly difficult.

Four weeks ago, I started to ease off and began to sleep more. Once I started sleeping, all I could do was sleep, but with two toddlers, that wasn't really an option, so I really spent my days in a fog. Then the legs started aching. They ached at night, in the morning, and pretty much all day. I began sleeping with a pillow between them, but that didn't help much. After the sleeping phase, I moved into the anxiety phase, and wasn't able to sleep at all. Every dream was about the race, and I woke up exhausted (wasn't I supposed to be getting extra rest???).

My metabolism was still jacked high, so I got away without changing my diet while easing up on my training...for about two weeks. Now, with less 10 days of tapering to go before the race, I have had to make a major shift in my eating (no more Chinese food!), so as not to put on any (more) weight than I did in the last few days.

But the hardest part is refraining from going out for a long run. I miss the solitude, the effort-induced pains that melt into a comfortable stride, the feeling of relaxation when I return, exhausted, and the deliciousness of the first sips of water. I look forward to race day, to the chance to test my mind and body, four years wiser and older than the last Ironman. Am I better this time, or just older? I know my mental edge is much, much stronger. I also look forward to the day after the race, when I can wake up and do whatever workout I please, not worrying about pace or proper nutrition. I might take that day off. Or maybe, I'll lace up shoes and sneak out at sunrise and hobble a short distance, for the peace, the quiet, the secret I keep with the start of every day. Only a few more days and the taper will be over.

The Annual MRI

2010-08-09T11:53:00.001-07:00

Last week, Alex had his annual MRI. It has actually never been an annual thing, because there have been complications and emergencies and further brain surgeries, but this year, we hope it will be an annual one. No more Christmas Eves spent in the ER. No more canceled birthday parties for brain surgery. We hope.

Alex demonstrated extraordinary strength at the MRI. He will be three years old in September, so right now, we say he is two and a half. He would have been born in January if he had been on time, so his age is sort of true. One of the great traumas of the MRI is the anaesthesia. It is painful to have the needle stuck into the vein, and then to sit there often for hours screaming uncontrollably while waiting for the MRI to be free, and then to fall asleep with medicine, and wake up confused, not knowing what just happened, and to have to sit in the recovery room for over an hour, hungry and unhappy, and then to fall asleep in the car on the ride home and be cranky until the next day-the whole ordeal is pretty horrible. But the anaesthesia is usually necessary to keep a child as young as Alex still while the MRI--loud and scary--takes its pictures of the brain.

So, last week, we just happened to have an amazingly astute nurse. I mentioned that it was too bad they wouldn't even consider letting Alex try sitting in the MRI without anaesthesia. She commented that it was too bad, but they don't usually even consider it until children are four, and then you have to make an evening appointment and come back the next day if the child freaked out during the procedure. Then she left the room and returned in 5 minutes, excited and in a hurry. Someone in charge had agreed to let Alex give it a try.

Alex had to sit for at least 15 minutes, lying down on his back, within the tunnel of the MRI, without moving a muscle. He could not turn his head or talk or roll over. The nurse gave him goggles to watch Blue's Clues, his favorite show, and then strapped him in. The MRI started, and he just sat there, mesmerized by the show, despite the extremely loud and grating sounds of the machine. Erik and I held his hand and our breath. In the end, he did it! When they wheeled him back out of the MRI, he asked if he could watch Thomas the Train.

After checking the dial on his shunt, we went home, a full two hours ahead of schedule, minus the trauma, and with a happy child in our back seat. We are so very thankful for good nurses. Her decision to give Alex a chance without anaesthesia made our day, changed our entire vacation (we were on vacation in NH that week) and will likely change the next few years of MRIs.

Inspiration

2010-07-28T12:33:00.000-07:00

We've had a tough emotional week this week, with Mommy being away to train and Alex's next MRI (next week) hanging over our heads, and at times I loose sight of my goals, my reasons for racing and training, and even the things that I love most in the world turn to chores. I picked up a book for my trip last week and highly recommend it to anyone needing some end of season inspiration.

The book, Going Long: Legends, Oddballs, Comebacks & Adventures, The Best Stories from Runner's World has some awesome stories in it. There are two passages that were so beautifully written, I am adding them here.

From Benjamin Cheever (son of my dad's favorite author, John Cheever), about training and completing his first marathon:

"Joy changes the landscape. My old life began to loosen around me like somebody else's shell. I felt naked, exposed. I had flashes of ecstasy, but pain was also more available to me. Not just physical pain either. I was swept with waves of remorse. And, alarmingly, I also felt the stirrings of ambition. I'd stumbled into an arena where I could go all-out, holding nothing back, and nobody--nobody--could be injured or even threatened...Life is a miraculous undertaking if you're paying attention."

And then a quote from Olympic marathoner Don Kardong on running his first 50 miler, Le Grizz. He is about to start the race (which he will win in under 6 hours, incredibly) and he looks around at the other lean bodies around him, shivering in the cold, dark morning. "Above them, the eye of the moon blasted its icy light across the wilderness, promising nothing but indifference of Nature to human dreams."

And then another quote, somewhere around mile 45 as he remembers the advice of a friend, "It never always gets worse. Eventually something will get better."

"Perhaps the attraction of ultrarunning lies in the simple distillation of this: the ability to envision a distant goal--another time and place when things will be better--and to survive the worst until then. This vision embraces both the survival instinct that unites us to other creatures and the imagination and willpower that catapults us above them. 'I will make it,' says the determined mind, and the body grows convinced."

We will get through Alex's MRI. Last year, the annual MRI revealed to us that he had to have another major brain surgery. This year, we hope for better news. But no matter what, we will get through it all. I envision a distant time where things will be better. After the Louisville Ironman (and Hawaii? one can only hope...), there will be a 50k and then a 50 miler...there will be lots of time to ponder upon Nature's indifference to human dreams, and to fulfill those dreams regardless.

Inside the 5 Week Window

2010-07-28T12:24:00.000-07:00

With less than 5 weeks to go until race day, my training has been in full swing. Last week I spent a day riding and running the race course, and found that it is both hilly (who told me it was flat???) and extremely hot (heat index 105 degrees). In this heat the first thing to go is nutrition. It is hard to balance nutrition on race day in any Ironman, but when you add an extreme condition, or extremely difficult course, everything gets turned upside down.

Last week, by the time I hit the run, I was completely unable to consumer solids. In fact, on the bike, I ate only one powerbar, some cookies, some salty peanuts, and began drinking coke at mile 80 (I usually don't start on coke until mid way through the marathon). I drank an entire 2 liters of coke and lots of other fluids. It is going to be a very challenging race.

The great thing about training on the race course is that you mentally prepare for the actual race, rather than the race you thought you would be racing (where did those hills come from???) and you recognize your weakness. My great weakness (here's a gift to the competition...) is going to be the run in this race, which will most likely take place after a hilly hot ride, under a still unrelenting sun. So, I am altering my training to prep for this. I also found that walking through the aide station does give you a little time to get yourself together for the next mile. I may have to incorporate that into the race, which I don't usually do.

If any of this blog's followers are racing in Louisville, you still have a couple more weeks to condition yourself for the heat. I have heard from other racers and it seems the greatest problem this year in these long races has been the heat, and the resulting poor hydration and nutrition that accompanies it.

Casting Alex's Arm--Contraint Induced Therapy

2010-07-19T06:40:00.000-07:00

Last week, Alex had his right arm casted. Since his right arm is strong and very capable, it does all the work for the left side, disabled by cerebral palsy. Despite therapy and all the work we do to every day to work that left side, we have reached a plateau. Erik and I knew it was time to take more drastic measures, and we researched constraint-induced therapy. The idea is that constraint is placed on the part of the body that is capable, therefore requiring the disabled area to work.

From the moment Alex sat in the doctor's office getting his cast, his left arm started to work. The doctor handed him object to hold to help entertain him during the casting, and "lefty" took them willingly. In the past, "righty" would have jumped in and not allowed lefty to play. After one week, we see tremendous progress. The hardest thing for Alex right now is eating with a spoon or fork, because lefty turns outward and has a very hard time grabbing anything as small as a utensil stem. But, with work, he is making great progress. He is also eating with his left fingers and reaching in all directions for his toys. The cast is removable, so we take it off during bath time, in the pool, etc. Everyone we know is signing the cast and although he occasionally complains that he wants to take it off, he is proud of his cool cast that has gotten him lost of attention.

I understand many parents would fear their child might completely reject the idea of wearing a cast, but children really do get used to things, even when they are uncomfortable. Seeing the progress Alex is making is all the encouragement we need to work with this therapy until we feel he can stop wearing it. I expect he will have it for many weeks. We had hoped to also use another form of treatment using botox injection in the muscles of the disabled arm, which deadens the nerve endings for about 3 months, to allow Alex to better use that left arm, but have read FDA warnings against using it. We will speak in depth with his doctor about this.

Taking it to the Track

2010-07-13T02:57:00.000-07:00

If you have lost your motivation to exercise, spend a few minutes watching someone's kids (they don't have to be your own) run. Children run for the pure, unadulterated joy of the feeling of movement. Alex and Izzy run constantly. They only stop when hungry, thirsty or distracted by something they need to bend down, pick up and analyze. With hot summer nights lasting well beyond usual bedtimes, we often take our kids to the track to run. They need an after dinner activity that will wear them down before bed, and the track, fenced and wide open, is safe, it's open expanse inviting to all to just start moving.

At their first track meet of the season, Alex and Izzy ran their 60 meter races (Izzy in the 2 and unders, Alex in the 2-3's) and then ran some more. Alex jumped into the 6 and under 400 meter race and finished the entire 400 meters on his own! The more they run, the better their balance becomes, and the more they seem to love running. Not only are they feeding their brains with BDNF and other cell and synapse stimulating chemicals, they are forming good exercise habits that should follow them into adulthood. They also inspire their parents, and anyone who watches them run on a hot track with huge smiles on their faces.

I had a miserable high school track experience. I was kicked off my track team twice (the first for running the Boston Marathon during our spring break, which angered my coach, and the second for not showing up for a state qualifying race which I blew off during a moment of bad adolescent judgment when I justified my actions that I had already qualified for the state meet, which I never ran after being removed from the team). I also broke our school records for the mile and two mile during our first track meet. My coach was a complete jerk. Not surprisingly, he still coaches my high school team and continues to make otherwise promising athletes miserable.

If you had a similar high school experience, or simply looked at the track as a hot, painful place to run, you might try returning to it as an adult. Life's painful lessons may have knocked the track into its rightful place, as your friend and no longer a fearful beast. And if you need any extra motivation to get to the track, bring a toddler with you. The pure happiness they exhibit, running freely within the immense, open space of a track and football field might just get you jogging. And if you "forgot" your running shoes, go at it in bare feet, your aging aches will ache less.

It's Hot!

2010-07-07T06:02:00.000-07:00

You either love training and racing in the heat, or you don't. I am convinced we can improve our tolerance for the heat, but we are born programed either to perform well or not in the heat. In Arizona last month, running trails in 95 degree dry heat, Erik overheated and I barely broke a sweat. This week, with the heat index above 108 degrees yesterday, even my heat tolerant body faced a challenge. Training for my Ironman in this weather is challenging but hopefully good prep for the actual race which will take place in the hot and humid heat of Kentucky in late August.

Alex and Izzy, like all children, do not do well in the heat. They have their first track meet of the year this week and the temps will be in the 90's, even at 6pm. We will go from the track immediately into the pool to cool off. Lots and lots of fluids all day and frequent dips into their blowup pool will help prep them for the race itself. It will be fun to see how far Alex has progressed from last year, when he was just barely able to walk without assistance, but had to run holding my hand. We raced together. This year, with both kids old enough to participate in the 2 and under category, and neither needing my hand, it will be fun to see how they perform, side by side, running down the 60 meters of track.

The Rev3

2010-06-08T12:39:00.001-07:00

The Rev3 Half Ironman, held last weekend at Quassy Amusement Park in the hills of CT, is by far the most difficult half I have ever raced. You are either going up a hill or down a hill on the bike and run, and both become painful after a few hours. The last mile of the race is uphill, and it was at that point that I decided the race organizers are just mean. It was hot and it was humid, and I loved every minute of it. I have long since ignored the physical pain of training and racing, since it is, after all, self-induced and so should not be fretted over, and try to focus on the fact that the more I work my body, the stronger and leaner it becomes. On Monday morning my scale tipped down a couple pounds and I felt a little more bad-ass than I had on Sunday morning, and so the hours of hill climbing was all worth it.

It was also the first race I have ever run where I had no family there to cheer me on. I thought about this a few times during the bike, and realized how fortunate I have been in my life to have people to care enough to come watch these long races where you get to glimpse your athlete for a few minutes at transition and then spend hours in the hot sun (or rain!). Thanks Mom, Dad, Erik and Molly (my sister-in-law who cheered me on at the Ironman for nearly 12 hours). I hope Alex and Izzy will find themselves one day, long into their middle age, where they are racing alone and realize it is the first time to be without a cheering squad and be thankful for the love.

Karate

2010-05-20T12:46:00.001-07:00

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

2010-05-19T12:16:00.000-07:00

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

2010-05-03T06:05:00.000-07:00

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

2010-04-28T09:35:00.000-07:00

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

2010-04-06T05:33:00.000-07:00

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

2010-04-01T06:06:00.000-07:00

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

2010-03-23T03:29:00.000-07:00

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

2010-03-09T10:10:00.000-08:00

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

2010-03-04T11:00:00.000-08:00

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

2010-03-03T10:24:00.000-08:00

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.