Wednesday, November 24, 2010

Botox Treatment

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.

Tuesday, November 23, 2010

Building Self-Esteem

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 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.

Monday, November 22, 2010

Food and Music Therapy

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!

Thursday, November 18, 2010

Cookies for Charity

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.

Monday, November 15, 2010

Team Baby Alex Foundation Heads to the Jerusalem Marathon

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 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!

Sunday, November 14, 2010

Mommy School

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.

Wednesday, November 10, 2010

Sleep as a Measure of Happiness

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.

Sunday, November 7, 2010

Changing Course

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.