Friday, October 29, 2010

It Only Takes One Good Teacher

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.

Wednesday, October 27, 2010

Charting New Waters: School and Emotional Health

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.

Wednesday, October 13, 2010

Jeff Runs America

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

Friday, October 8, 2010

Karate Therapy

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.