ECHOage and Charity

One of the values we find most important to teach our kids is the value of charity. Obviously, we run The Baby Alex Foundation and donations to our charity are the means by which we give out grants. But we don't talk about the Foundation much with our kids. Mostly, we talk about our community and how important it is to help others near where we live. Our family's 2013 value of the year is abundance. Our lessons to the kids on abundance is that the more you give out of anything kind and nice, the more good you create in the world. Give out love (or any kind deed) and you will create a ripple that will grow and expand and one day come back to you. My kids have a sticker chart that reads, "Alex's/Izzy's Good Deed Chart". We give out stickers simply for doing good deeds. This week, the Foundation was approved as a charitable recipient on the ECHOage website (www.echoage.com). This website makes it fast and easy for parents to create online invitations to their child's birthday party. In leu of gifts, the parent asks for a donation. Half of the donation goes toward buying a nice gift for the birthday boy or girl, and half serves as a tax exempt donation to the charity of the party holder's choice. The idea of ECHOage is brilliant. If your child has a birthday party coming up, consider giving ECHOage a try. Choose a charity, talk about the importance of giving to others, and watch your children's perspective on life deepen. They won't miss the small, plastic gifts, because they will be getting one big, nice gift instead. Plus they will be helping ease the burdens of the world. On our kids' birthdays each year, we donate to a cause. This year, through ECHOage, we'll not only donate, we will involve the families of all the kids invited to their birthday parties to get involved in charity.

Homeschooling Resources

Whether you homeschool your kids full time, or simply like to give them fun, educational activities to keep them busy on the weekends, there are some amazing materials to try. The kids and I recently discovered IXL math (www.ixl.com). This program costs $79/year plus $20/year for any additional child--believe me, it's worth it. It's amazing! Starting with preK-4, this program builds upon your child's skills at the state standard. So, if you are homeschooling, you can track your child's progress against the state standard to be sure you are keeping up (or getting far ahead). To supplement this math, try Khan Academy (www.khanacademy.org). The guy is a genius. He has videos for every level, and he teaches with such simple clarity. Especially if you find your kids are excelling beyond your own knowledge, Khan Academy covers everything from PreK number lines to Physics. For reading and vocabulary building, if you want to do more than simply read with your kids, work on phonics and maybe give them sight words each week, you might try Sadlier Vocabulary Workshop, which is sold according to grade level. There are online audio programs which go with this. Again, you keep track of their progress and measure them against the state standard. And if you want to teach your kids values, within a context of extensive thinking, journal and essay writing (plus drawing if they are young), come back this summer for my book!

Mommy School Schedule

Mommy School is in full swing this winter. We started Mommy School two years ago out of pure necessity. I couldn't find a preschool that taught my kids what I want them to learn, both socially and academically, so I created Mommy School. My kids love it! Although the kids still go to preschool, primarily for their social development and to keep up with state measurements of achievement, I teach Mommy School in the morning before school, on the days one of them is home with me, and after dinner. After much research on The Responsive Classroom (www.responsiveclassroom.org) and in line with our Mommy School study of values (about which I am writing a book for the public school system), Mommy School looks like this. (By the way, my children naturally wake up by 5:30am. I am up at 4, when I run with the dog, shower, make lunches and prep for the day, and then make breakfast, which is loaded with healthy fats. Our studies on the brain have shown that healthy fats and low carbs/sugars are key to a healthy body and brain development, especially since we have a child with brain damage and a seizure disorder.) So, here is the schedule: 6am breakfast, 6:30 Mommy School begins with Morning Circle (based on The Responsive Classroom), 6:45 Station One Assisted Activity, 7:00 Station Two Independent Activity, 7:15 Station Three Group Activity, 7:30 Final Circle, 7:45 Brush Teeth and out the door for exercise (karate class, trail running, etc). I have a chart with five stations on it: Math, Reading/Writing, Art, Music and Physical Design. The kids mark which station they want to do for each of the three activities. By the end of the week, they have to have a mark in each of the stations, although they can repeat stations as often as they like. The kids love this setup. They get to choose what they study every day. They get stickers for good effort. They get to work with help, independently and as a group. Our mornings used to be hectic and sometimes involved cartoons and then by the time we tried to get out the door, everyone was complaining and uncooperative. With the cooperative nature of Mommy School in the morning, which the kids love and look forward to, they brush teeth and get out the door with total cooperation. I give out tons of stickers on their sticker chart for good behavior, cooperation, effort, etc. which also motivates them. On the days I have one child home with me, we continue Mommy School, mostly by playing board games or working on a longer project. Our board games are Candy Land, Monopoly, Scrabble and Chess. Although they needs tons of help playing these games, they love them and are learning a lot about math, reading, spelling, colors and how to follow the rules. At dinner every night, we review our values. We study one value each week from my book. We give examples of the value and talk about how the kids might have practiced the value that day. Then after dinner, they have some time to write in their values workbook and then its time for bed (brush teeth, reading, etc). There is a lot of structure to Mommy School, and yet the kids have a lot of choice, which gives them a feeling of empowerment and improves their overall interest and cooperation. During the afternoons, we often do a sport (swimming, gymnastics, etc) before coming home for a few hours of completely unstructured free play, which is as important as anything I might teach them in school. We have almost entirely eliminated TV. I love Homeschooling, because I get to teach my children the skills that I feel will allow them to be happy and successful adults. I let them fail, a lot. I encourage them to be resilient, curious, self-motivated and independent. They also must learn to be patient and to work in a group. I don't believe Homeschooling needs to be exclusive to school, but rather can be an awesome supplement for a parent who can schedule it into whatever lifestyle the family pursues. Our number one rule for Mommy School, as chosen by my kids when we created the Mommy School rules, is HAVE FUN! And we do. Try some homeschooling with your kids. You may be amazed at the results.

In Memory of Christina

Today, one of my closest friends, Christina, passed away. When Christina was about 34 weeks pregnant, she was hit by a car driven by a colleague as she crossed the entrance to the parking garage of our place of employment. As she was struck by the car, she put both hands on her stomach to protect her son, and fell backward onto her head which bled severely. She spent months in the hospital and then in rehab. Through pure determination, she made significant progress in her recovery, although she always suffered the effects of her brain damage. A few years ago, Christina was diagnosed with cancer, very likely fueled by the stress she suffered during this tremendous trauma. She battled cancer the same way she battled her brain injury, with hope and belief in a better future. Her husband, Jon, was by her side unlike anyone I have ever witnessed. He took care of her, encouraged her, protected her. At the same time, he and Christina raised their beautiful and sweet son, Connor. The year before Alex was born, I raced my first Ironman in honor of Christina and my friend and Dartmouth classmate, Lisa, who was hit by a truck while biking, an injury that caused extensive brain damage. As I ran into the water of Ironman Florida, determined to finish for my two good friends, I had no idea that a year later, I would be standing in the neonatal intensive care unit holding the tiny hand of my own son, whose brain damage would threaten his early life and change our lives forever. Not only is brain damage the leading cause of death and disability to anyone under the age of 25, it can cause a domino effect on the entire body over a lifetime. We miss Christina. Both of my children were mad about her. I took Izzy to see Christina during her last weeks, because Izzy feels such a strong connection with her. Izzy stood outside Christina's bedroom and took a long look at Christina that day, and shook her head and said, "Poor Christina." Then she gave her a big hug before we left. Christina's life, and death, will remind us to live a little bit more thankfully for every day we have together.

Managing Seizures

After Alex's fourth seizure, and an EEG that showed constant spikes in electrical activity around the area of his brain damage, we decided to put Alex on Trileptol, an anti-seizure medication. Brain damage often causes seizures, due to the scar tissue that remains, the existence of a shunt, and possibly other reasons we don't even understand. Although Alex's seizures have been diminishing in their severity, as we get ready to send him to full time kindergarten next year, we really need to be sure he is safe. We want to minimize the risk of falling should he have a seizure in school, at a friend's house, in the pool, etc. We also hope that the medicine will calm the abnormal electrical activity which I have suspected (and is the reason I insisted on an EEG last month) has been the source of Alex's daily exhaustion, his meltdowns and his poor sleep patterns. Alex sometimes tells me that he feels a meltdown coming on, and doesn't know what to do. He also tells me that he feels like his brain is out of control. Most people who have seizures can tell when they are about to have one. Although his seizures were often not outwardly manifested, they were happening. So, we'll see. He started the medicine yesterday. He slept through the night last night, an extremely rare occurrence.

Blood Clots and Ultrarunners

I never thought I was a candidate for a blood clot. I am an ultrarunner. We ultrarunners don't sit still. We are not overweight. We don't smoke. In my case, I rarely travel by plane anymore. How could my blood possibly hang around long enough to stick together and become a life-threatening problem? Well, there are lots of reasons why blood clots excessively and it doesn't seem too picky about your previous athletic performance. If you are sitting still right now, post-injury, you are at risk. Even if only a few hours ago (before your injury) you finished a kick-boxing class, and only 6 days ago completed your third Ironman and only a few weeks ago failed to finish your second gruesome 50 miler after training all summer for a 100 miler, you are still at risk. Five days after ripping my calf to pieces (playing tennis...what a dangerous sport!), the deep vein clot in my lower leg had become so painful, I was unable to get off the couch. My daughter was put in charge of climbing up on a chair to reach the cereal and milk-dinner that night-and then find a mixing bowl in the lower closet from which to eat it in. My son was on teeth and bedtime story duty. When Erik came home, he had to literally carry me under the armpits to help me lower myself down on the toilet. And yet, I thought I had simply re-injured my broken calf from racing around with my kids and swimming, and all the not sitting still I had been doing. So, nearly two weeks passed before I dragged myself to the ER. Major, major clot, with 4-6 months of blood thinner. So, my injury, which put me off training for 6 weeks or so, had now put me off training for 4-6 months, because you can't train when your body can no longer clot. In case anyone is wondering what a clot feels like, it is a pretty sudden pain (in my case, directly behind and below the knee), which gets worse every day. The real clue that I had a clot in my leg was that my leg had turned cold, my foot had turned purple, and whenever I stood in an upright position (with crutches and my lovely walker), all the blood that was supposed to rush to my foot got clogged at the clot and set my lower leg into truly blackout-causing excruciating muscle-spasm pain. Once on blood thinners, the pain decreased overnight, and now, after two weeks of medicine, is pretty much gone.

Diet and Neurology Management

Last week I ripped my calf muscle and will be incapacitated all winter. I have a wrapped leg, boot and a walker to get around. Some days the muscle is in such spasm, I can barely move. As a result, our schedule has changed completely. I now do rehab in the pool very day for 60-90 mins, always with one of the kids while the other is in school. That is a very long time for a little body (theirs) to be in the pool. Yesterday, we unintentionally did an interesting experiment with food, partially due to our new schedule. I have always suspected that what Alex eats affects his neurological function, far beyond the sugar highs that parents recognize in their children when they eat sweets. Since Alex's first seizures, we have tried to keep him on a higher fat, lower carb diet. It is hard to attribute behavior changes to food intake, but observationally, the change in diet seems to work. Yesterday, we proved it further, this time with such certainty that I am now the world's greatest proponent of high fat diets in kids with brain injuries. Although I packed a healthy high fat diet for Alex's lunch, I also included popped chips and other high carb options. Throughout the day, he consumed mostly high carbs, low fat foods, and had spent over an hour swimming hard in the pool. Around 2pm, the minute we walked into the house, he started to melt down. The meltdown lasted a good 30 minutes and he was totally out of control. It was one of those meltdowns that appear neurological, as though Alex has lost all control of his brain. I thought about what he had eaten that day, and decided I better feed him some fat. I cooked two eggs in 2 tbs of butter, and added half an avocado with olive oil and salt. Still sniffling and fussing, he devoured the meal, along with a glass of whole milk. Within minutes, he returned to normal. Our sweet, peaceful Alex came back and he went on with his play. We didn't have a single other issue all day. I recently learned of a grant application with the NIH to examine the effect of exercise and nutrition in children with traumatic brain injuries. I hope the NIH funds this one, even though I feel any parent who has tried diet and exercise to improve physical and neurological function in their child with TBI needs no study to prove their positive discoveries. It would be nice to have a study to document the benefits of non-pharmaceutical therapies in children with neurological challenges. I wonder how that might change school lunch programs and PE, for all children.