Thursday, December 22, 2011

Yellow Belt-The Rising Sun

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.

Monday, December 12, 2011

Last Week's Value: Abundance

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!

Wednesday, December 7, 2011

Sensory Issues and the Preemie Brain

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.

Sunday, November 20, 2011

Cookies for Charity Day

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.

Friday, November 11, 2011


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.

Friday, November 4, 2011

Teaching Values: The Key to Ending Bullying

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

Wednesday, October 19, 2011

Memorable Moments

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.

Thursday, October 6, 2011

Value of the Week: Courage

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.

Wednesday, September 28, 2011

The Gift of Giving

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.

Friday, September 16, 2011

Myelination and Acquiring Skill

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.

Wednesday, September 7, 2011

This Week's Value: Optimism

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.

Tuesday, August 23, 2011

Honest Discussions

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.

Monday, August 1, 2011

A Sport All To One's Own

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.

Wednesday, June 8, 2011

The Daily Biathlon

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.

Friday, April 15, 2011

A Standing Ovation

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.

Monday, March 7, 2011

ISR Swimming

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

Tuesday, March 1, 2011

Karate, Karate, Karate

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.

Monday, February 21, 2011

The Pemberton 50K

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.

Wednesday, February 2, 2011

School Comparison

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.

Friday, January 14, 2011

Run Across America

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:

Thank you.