Thankfulness

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

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

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

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

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

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

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.