Monday, February 18, 2013

Swimming, Biking and Running Best Therapy for CP

We've had one of those winters which incites us to say things in the summer like, "I really hate winter." The truth is, I don't hate winter because it's winter, but because we get extremely sick and our activities, training, nutrition, and positive mental attitude are just off, no matter how hard we try to maintain our normal lives. My calf rip and subsequent blood clot meant we decreased our workouts. Then I suffered a very serious bleed, which finally couched me for many days. Then bronchitis and colds, and then a second round of bronchitis which became pneumonia, for all of us, meant a lot of sleepless nights and inactivity. After about 2 months where the kids missed their morning runs, 4-5 days/week of swimming and daily biking (indoors around the kitchen island), I noticed Alex has started to walk on his toes on his weak side, and to crumple his left arm up into a ball. In short, the lack of our therapeutic activities meant that Alex's tight side has become seriously tighter, at a time when he has been growing quickly. I have always said that the best therapy for him is not the 20 minutes expensive sessions with a professional therapist, but the daily physical triathlon activities we do: swimming, biking and running. Unfortunately, this winter proved my theory correct. Now we are facing an uphill battle to get those muscles back in use. With temps in the teens and ice covering our trails, we are faced with all indoor activities. Wearing shoes and a brace on his weak foot, we are now running 30 minutes every morning around the island. I have Alex in the pool, almost every day. I have also encouraged him to get back on his bike as well. We do much of this exercise to music and I try to make it fun. It is going to continue to be a long winter, despite what the groundhog said, and I need to find a way to return a bit of lightheartedness to our workouts. If you have a child with cerebral palsy, or even if you have a child with no injuries, to the best of your child's abilities, spend some time each week engaged in three activities: swimming, biking and running. You will be building important muscles groups and brain synapses.


I have been debating whether to include philanthropy in my values book, since we already have charity. The two are closely aligned these days since the meaning of philanthropy (love of people) has shifted to accommodate modern society. But, I tried it out on the kids. In my introduction, I have pointed out that the distinction between philanthropy and charity is that philanthropy uses private money to solve problems at their roots, while charity uses public and government money to help alleviate pain. Both important, but different. I try out my classroom projects on the kids, before I include them in my book. So, this weekend, when there was nothing to do because Alex and I had pneumonia and Izzy had bronchitis, we spent a nice morning working on our philanthropy projects. After a brief discussion about how philanthropy solves problems at their roots, I asked the kids to draw/paint/color a picture of a philanthropic organization which solves a problem in the world. I threw out a few suggestions: animals, children, water, and environmental cleanup. After some thought, and building upon a previous conversation I had had with Alex, he decided he would draw a picture of a "poop water cleanup house that also grows watermelons because you can eat watermelons to stay hydrated if you have no water to drink" and he guessed he would place this philanthropy in Africa. So, he drew a lovely picture of poop water (sewage) with nice big brown blobs in it, going into the house and clean water coming out. Then he drew his watermelon patch. He actually made 7 different attempts and decided in the end that none of them was perfect, so he crumpled them all up and drew a picture of punctuality (the other value we have been studying this week) with a picture of him arriving to school on time, and fireworks going off in the distance. He mentioned that the fireworks start at 8am and school starts at 9am, so if you get there early you get to see the fireworks because "the early bird gets the worm", which was our quote of the week. Izzy, building upon her brother's comments, decided she would place her philanthropy in Mexico (which we had been studying this month) and would create a watermelon company that also made ice cream, because both would keep you hydrated if you were thirsty. She decided that she would serve ice cream with watermelon on top. Her artwork is amazing. She has grandma's talent for sure. In the end, she also added a cotton candy cart that could be pushed all around selling beautifully colored cotton candy, because everyone loves cotton candy. She drew a picture of a little girl eating her ice cream with watermelon on top and as I spelled them, she wrote Watermelon and Ice Cream Philanthropy. As often happens when we study a value, we tend to hear it everywhere. Last night while watching The Wizard of Oz, the wizard described philanthropy to the Tinman and was having trouble saying it. Both kids knew it and shouted it out. I think in the end I will include philanthropy. It's President's Weekend. If you looking for projects to do with your kids today, a short project on philanthropy, as described above would be fun. Write the word, define it, explain it, give examples, then allow your children to create their own philanthropy through drawing and writing. Be their guide and cheerleader.

Saturday, February 2, 2013

Bringing Courage to PreK

Last week, I taught a values workshop on courage to Alex's preschool class. Now that my book is nearly finished, I have started testing it out on children other than my own, to work out some kinks. Alex's teachers were kind enough to welcome me into the classroom last week, and it was a blast. I taught from my PreK/K textbook. Alex's favorite value is courage, so I decided to start with that one. The lesson lasted about 20 minutes and the kids were totally engaged. Each lesson has a method. I introduce the value, "test" the kids to see if they know what it means, help them give examples to understand the meaning of the value, connect the examples to themselves, reinforce the value through an in-class exercise, and then assign a homework project that involves their caretakers which is then reviewed the next day in class. For courage, the in-class exercise involved little skits about scary activities a typical preschooler would find himself in. Their homework assignment was to draw a picture of themselves doing something courageous. On Friday, the assignment was due. The class parent sent an email reminder to the parents about the homework assignment and most of the kids managed to get it done and bring it in. As I had been up most of Thursday night with Alex on account of his seizure, I was exhausted on Friday morning. I completely forgot about the assignment I had assigned. After dropping Alex off at school, Izzy and I turned to leave and a little girl came up to me with her homework. Her mom helped her explain the picture she had drawn, about last summer when she learned to swim in a lake that had fish in it. I gave her a high five and praised her profusely for her effort. Then another little girl showed me her homework, with a picture of her reading a book. On the back her mom wrote that she had been scared of this one princess story because it had a scary witch in it, but that she found her courage inside (my catch phrase) and now she can read it and not be scared. I high fived her too and told her mom good job on working with her daughter on the homework. As the children filed past, homework in hand, I realized I had forgotten Alex's. I raced home to get it and bring it back in. At my suggestion, the teachers spent some time that day allowing the children to stand up in front of the class and explain the pictures they had drawn about themselves doing something courageous. When I picked Alex up that afternoon, the teachers said the whole exercise had been excellent, and that they planned to put the drawings together in some kind of book. Then another parent stopped me and told me that her daughter had learned so much from the workshop and she really appreciated my efforts. Having been up all night, I was a bit emotional, and was close to tears by the time I left the classroom. Teaching values is important. Not a single child (except Alex) was able to explain courage to me before the workshop. Each and every one of them was able to explain it after the workshop. The exercise not only taught an important value to little minds heading off to kindergarten next year, but connected the entire class as they shared scary events in their lives, and parents who were involved in the homework assignment. And, it was fun. Alex asked me if I would come teach in his classroom every day. I would love to found a charter school, but given our needs at home, will spend any spare time I have to bring values into the public school.

Friday, February 1, 2013

On Happiness

Alex had yet another seizure last night, which would make four in just one month. We are working with the dosing of his medicine to try to control these horrible episodes, but still, there is no guarantee he will ever stop having seizures. We have no idea if the problem is scar tissue, his shunt, or something else. We have become accustomed to waiting and seeing. Being madly in love with someone who has an uncertain future can be tremendously stressful, and in fact, causes biological premature aging. Of course, everyone's future is unpredictable, and as parents, we always worry about our kids no matter how healthy they might be. Parents of sick children exist on another level of worry. This worry can cause myriad problems, from depression to divorce. When Erik and I were imagining our family, we dreamed, like most, of having smart, healthy children who would run and play and enjoy childhoods filled with friends and endless sunlight. The sudden shock that our lives would be anything but normal and the yearly developments of complications caused from Alex's premature birth, have been accompanied by a degree of post traumatic stress. I am a huge advocate of running to reduce stress--running keeps me on an even emotional keel every day. But reduced stress is not a measure of happiness. So how do we find happiness when someone we love lives in a fragile balance? I'm sure there are many answers to this question, and to the general question about finding happiness. For me, and for Erik, the key to our happiness is to live as best we can in the moment, and in this moment, we are parents and friends. So, we spend as much time as we can enjoying our children. Sometimes enjoying them means splitting them up, so that we can share good one-on-one time. Sometimes, it means turning on loud music and dancing like crazy people, because the kids are full of beans that day. Sometimes, it means snuggling them to sleep because they have had a bad day or are scared or simply want to feel us close to them. It means saying no to anything that takes us away from family time. It means slowing down the pace of our lives and our commitments until we walk at our children's pace. We try to see our lives through their eyes. They want hugs. They want us home, together. They want Friday family movie night. They want Saturday family trail run. They want summers at our place on the lake. They want to bake cookies and then eat them all at once. They want to snuggle in our beds at 3am. They truly just want love and to be loved. They don't care what kind of mark we leave on the world when we leave it, they just want us in it. They don't care what kind of education we received, they just want us to read with them. They don't care if they get into the best colleges in the country, they just want to pursue their strengths and what makes them happy. We no longer concern ourselves with what our kids get from the world, we focus only on what we can give them as their base and primary teachers. I am completely unconcerned about what the school teaches our children in terms of academics. I will teach them anything they lack. All I care about is that they are happy. I don't think our society is designed for happiness. But, fortunately, we can design our family however we choose. When Alex was born and we were given the brutal facts about his brain damage and his prognosis, I said to Erik, "We'll love him as best we can for as long as we have him." To this day, we live by this belief. Then again, the same would be true for any child, regardless of his health. Choosing happiness is a more difficult choice than it appears. Sometimes it takes work to stay in the moment, to appreciate today, to hug our children even when they've just launched one of Mommy's heels at the TV. But choosing happiness brings meaning to every day, and at the same time, may just slow down premature cell death (and that means fewer wrinkles!). If you struggle with happiness, try writing down three things you appreciate from your day, every day, before you go to bed. You will be amazed at the improvement in your outlook on everything, from your kids to your dog.