Coping with Chaos

One of the greatest challenges kids with brain injuries face is coping with noise and chaos. We noticed this when Alex was an infant. Early on, we realized that we simply could not take part in play dates. The noise and chaos of children playing together was too much for him to manage. He cried, covered his ears, found a quiet place in the corner of the room to hide, and became cranky and exhausted for the rest of the day and sometimes into the next day. Now that he is 7, and we have equipped him with coping tools, such as a high fat and low sugar diet and plenty of sleep, added to the fact that his brain continues to heal, he does much better. I can take him into Costco without him melting down. We can attend small birthday parties. Bounce houses and amusement parks will forever be outside our abilities, but those places give me headaches too. So, the question now is how do we deal with the classroom? In general, public school elementary classrooms are not quiet. One might argue that the chaos is necessary to free expression. One might argue that teachers with no classroom management skills end up reacting to disruptive behavior rather than teacher. Whatever the situation, the fact is, Alex's classroom is noisy, and he is so exhausted every day that adding the many therapeutic activities to his day which we have followed for the past two years has become impossible. His classroom last year, in kindergarten, was very, very quiet. He complained all the time that his teacher was too strict. But we all know that her quiet classroom allowed Alex to manage school, after school activities and to go the entire school year without a seizure. Alex has had 2 seizures in the past month, both of them occurring at school. His poor little brain and body are dragging to get through every day. By bedtime at 6:30pm, he looks horrible. His face is white, with black circles under his eyes, which are, literally, crossed. His weekends are tough, because he is pooped. His appetite isn't good, which makes controlling his seizures through diet very difficult, and his ability to learn has been greatly diminished. One of the most telling moments in Alex's understanding and expression of his neurological condition occurred at the end of last year. I rode the noisy schoolbus with him to the library for a field trip. As we sat in a silent classroom, listening to the librarian talk about the library, Alex looked at me and said, "Mommy, I know it's quiet in here, because I see that no one is talking but the librarian. But all I hear is ringing in my ears from the noise of the schoolbus." We listen to Alex. We take his comments seriously. He is earnest. He is honest. And he wants to be like everyone else. So, when he tells me that something isn't working, I believe him and we work to find a solution. And so, how do we manage the classroom? This week we experimented with a possible solution. I home schooled him for the day on Wednesday rather than send him to school. We had an amazing day. Alex woke up exhausted and cranky. But after an entire day of quiet, concentrated work, coupled with periodic exercise and plenty of healthy food and high fat, he was a new kids by the time we had to pick up Izzy from school. He completed high level math work, science reading on theory, hypothesis and laws, a science experiment using vinegar and baking soda, a social studies reading on J. J. Audubon with an art project, a reading assignment on Edison with Q/A, watched two episodes of Magic Schools bus (digestion and the solar system), created a poster about Mercury from the library book he read, practiced his piano and did a full 30 minutes of lefty exercises. He then had a piano lesson. You would have thought he would be exhausted from all the reading and thinking and writing. But he wasn't. He ate a huge lunch and dinner, went to bed peacefully, and slept for nearly 11 hours. He went to school completely rested. So, I guess my point for parents with children suffering brain injuries is that your child is not just being "bad" (as we were often told) or "difficult" when he cries at bounce house birthday parties or melts down at the movie theater. His brain can't cope. It would be like you going out clubbing after being awake for 24 hours. Not fun. So, redesign your life so that you set him up for success. And if school is giving him trouble, try something new. Help him find quiet space to think and learn. It's your right and your responsibility.

New Blog

Because Alex's neurological challenges have pushed me to develop a home school curriculum for my kids, I have shared that work on this blog over the years. But with the release of my textbooks last spring and the expansion of my work into educational consulting, I have set up a blog devoted to my educational endeavors. The new blog, which accompanies my business and website, can be found at www.thevaluetree.blogspot.com. Please visit www.thevaluetree.com or www.currierbooks.com (which go to the same website) to view my work as an author and educational consultant. This blog will continue to discuss issues related to brain injuries, therapies that have worked for Alex and our work with The Baby Alex Foundation. Thanks for reading.

Pizza, the Perfect Food

This week, the food issue of the New York Times Magazine did a photo journey through breakfasts for children in various parts of the world. There is Saki, from Japan, whose favorite breakfast foods are fermented soybean, salmon and miso soup, and Nathanael from Paris, who not surprisingly prefers crepes and hot chocolate (me too!), and Emily from Malawi who eats a soy porridge, boiled sweet potato and a dark juice made from hibiscus flowers. I read the article with Alex and Izzy at bedtime tonight and we talked about what they eat for breakfast. Izzy is French through and through, much preferring crepes and hot chocolate to her oatmeal and eggs. Alex is happy with bacon and eggs. My kids were incredible eaters as babies. I mashed up whatever I was eating and turned it into baby food (so much for the special sterilized bottles and organic veggies). They loved everything from salmon to peas. They are becoming pickier in their older age, which has led me to find creative solutions. I also have to take into consideration Alex's need for low sugar, high fat, and low carb and gluten food. So, I created the super pizza. The recipe is like this: mix 1 1/2 cups of whatever flour you have into a bowl (you need SOME white flour, so don't leave this out completely, although you can buy the gluten free kind these days), with a teaspoon of salt and stevia, about 1/4 cup of oil (olive, melted coconut, avocado, etc) and enough water so that you can mix it up to dough consistency. Then roll it out into some form, very flat, with a rolling pin on some flour. Once it is flat, you place it on a greased cookie sheet. (Don't forget to grease the cookie sheet or you will be having hotdogs for dinner after you smash the entire pan over the dog bed when the pizza refuses to come off.) Then you can add anything in your kitchen for topping, then cheese, then bake for 20 minutes or so at 350 degrees. For toppings, I often saute veggies of all kinds, add some red sauce and use my immersion blender to blend it all together. My kids have no idea they are eating 12 different veggies in their sauce. Tonight I fried up eggplant and sausage. Be sure to peal the eggplant, or your daughter will pick it off her pizza, one tiny skin at a time. I also use a lot of pesto. Buy it at Costco. It's cheap and really good. I layer the pizza with a smear of pesto, then the veggie laden sauce, then cheese. We add fresh tomatoes to the top or sometimes prosciutto. Whatever is in your fridge, just saute it, puree it and add. Pizza takes me about 15 minutes to prepare. I make it in the afternoon and then cook it when we are all finally home from our afternoon activities. Pizza. It's the perfect food. High fat, low sugar, low carb, loaded with veggies, some calcium and proteins. Your kids think they are just having pizza for dinner.

Running in the Rain

On Saturday, I ran the Hartford Half Marathon. I ran beside my cousin's husband, Artie, who was running for Team MAD (Team Making a Difference) to raise money for The Baby Alex Foundation. The morning started out like any other pre-race morning, except that I wasn't all that pumped to be running. It was cold and rainy, and we would be running in a huge crowd on pavement through one of the cities that I dislike the most--the city where Alex was born and where I spent three of the worst months of my life. I don't really run marathons anymore, unless they take place on trails. But I was running for our cause, with a team, and next to Artie. The energy of the race was incredible, and when the gun went off, I was feeling good about the event and our effort as part of a team. As we rounded the first turn and ran up the same street I had driven dozens of times to and from Alex's NICU space, I suddenly burst into tears, and that one small act of taking one step after another, making contact with pavement in the cold drizzling day, changed everything. Alex was almost 3 weeks old during the 2007 running of the Hartford Marathon. I remember that morning clearly. It was a beautiful fall day. Erik and I drove in silence to the NICU, and as I glanced out the car window that morning, I noticed some signs, some runners...oh, yes, a marathon. It hardly registered in my mind, except for a brief memory of the life I had before Alex was born, when I was most defined by my running and career, and not as the mommy of a child with brain damage. On this day in 2007, I was just barely hanging on. If I could only have had a glimpse 7 years into the future, one tiny peek at what our life would become in 2014, I would have been spared significant pain. (Life did get better, much better.) But, such is not life. In my speech to the team Friday night, I spoke about Alex's Library, funded by Team MAD's efforts. I spoke about the importance of embracing pain, cleansing yourself of fear and dread and trusting that you are capable of meeting life's challenges. With those challenges come life's pleasures, and happiness. Without those challenges, you will never know profound love and deep appreciation. So, I ran and embraced the pain, and tried to tearfully tell Artie what was going through my mind. For many miles I pondered over the last 7 years, and then we hit mile 9. I looked up. There was a sign for Elizabeth Park and a long line of runners entering into it. I nearly choked. I have been avoiding this park since the day Alex was born, the day Erik and I wandered into the park many hours after Alex was born, when Alex was too sick for visitors, too fragile for more than a short glance through his incubator from his parents. Erik and I had to pass some time that morning, the first of 100's of hours that we would wish away. We walked through the rose gardens and lay down in the grass and watched the clouds pass by. I lay there 7 years ago wishing somehow I would be swallowed up by the earth. I have never been able to go back to Elizabeth Park. I don't even drive down that road into Hartford. In preparation for the race, I guess I should have looked at the race course map or at least assumed the race might run through the only beautiful part of the city, but I had not. I had simply showed up at the start of the race and started running when the gun went off and here I was, running through hell. Tears streamed down my face again and that's how I spent a few miles, running on tears. Artie was in enough cramping pain by then that I didn't bother him with explanations. The rain continued to pour down and I thought about how cleansing the whole process of running is for me, and in the cold rain, well, all the better. As a kid, I used to pretend I was a horse. I ran for countless miles every day through trails and fields with my horse legs growing stronger, and when the weather was miserable, I loved it all the more. As Artie and I finally arrived to mile 12, and headed downhill for the final mile, I began to feel that something had brought me to the race that day, something more than my connection with Team MAD and the Foundation. Perhaps it was fate or some spiritual guide. Or maybe, it was just running, my beloved salve for all things. I felt exhausted at the finish line. It isn't easy to run and cry and relive terrifying events at the same time. We will build a library of hope and inspiration with the money we raised on Saturday. In the process, I conquered some personal demons. All in all, it was a good run in the rain.

On Education

This week's Sunday Times had an awesome article by Frank Bruni titled The Wilds of Education. It makes the point that education should be dangerous. It should excite the mind. It should inspire thought. It should challenge norms. It should be uncomfortable at times. We're speaking academically, of course, as the physical building and the culture of the school should be nothing but comforting and safe. Students should be encouraged to try new things, embrace failure as a learning experience, and worry more about the process of learning rather than the actual grade. Yes, we need grades. We need ways to measure growth. But we need to embrace academic risk. Last week was Banned Books Week. I love that week. I love to learn about what people are scared of reading. Who are these scared people? I have no idea. But there are enough of them to create an actual week where their fear of books takes on national attention. While checking out books on the Civil War today, which will fill the next month of Mommy School, there were three jars in the kids' library with the shredded text of books that were on the banned books list. You could enter the names of the books, if you could figure them out, and win a prize. Hint: one of them deals with wizards with names like Harry and Professor McGonagall. I burst out laughing. Harry Potter is one of the most brilliant books of our time. It deals with issues of class and race, abandonment and trust, coming of age and facing fears for the good of society. Good vs. evil. Rich vs. poor. Better to learn about those things in a fictional tale when you are 7, 8 or 9 than face the real life equivalent at that stage, like World Wars, 9/11, ISIS...the big stuff about which I hope my kids can remain innocent until at least they enter upper elementary school. There have been so many movements by college students and colleges to shelter their precious brains from difficult issues that they might face or have faced in life, like poverty, slavery (well, their ancestors I guess), violence, that I wonder sometimes if anyone is interested in learning anything about life that will actually help them cope with the real world. Neither of my kids likes to fail. They cry. They scream. They throw temper tantrums. Alex hates to beaten at chess. Izzy explodes into a tizzy when Alex beats her at anything. I often wonder what the neighbors must think. But I let them scream and cry and slam doors and throw fits and declare that they will "never again play x,y,z..." and then I invite them to calm down and try again. First I give them a pep talk. "Oh, good, you failed for once," I tell them. "Your brain is growing again. You must feel yourself getting smarter and stronger. See if you can apply what you learned from your mistakes this time to win." Occasionally, like when Izzy has a milk drinking contest at dinner or a teeth brushing contest at night, I find myself yelling, "It's not a contest! Teeth need to be brushed slowly!" And both kids grow very serious when we talk about tough issues, like alex's premature birth or child homelessness. We shake things up in Mommy School. We read Harry Potter, every volume. We re-enact the Revolutionary War. This year, we even discussed 9/11, something with which I was intimately involved in dealing. Yes, it's painful sometimes to talk about, but I won't put that on my banned list. Banning the discussion will mean that my kids might never learn about 9/11, and as some very famous and knowledgable people have said, "History repeats itself." Let's not be unprepared. Academic risk? Bring it!

Like Peanut Butter and Chocolate

We would be lost at this point without IXL.com and Khanacademy.org. When we started using them both several years ago, I thought we were just having fun. I never realized I would rely on them for Alex's education. Alex has pretty much given up on school. He promised himself throughout kindergarten that first grade would be more challenging and that he would find it interesting. But here he is, into his fifth week of school, and his disappointment at the lack of educational challenges has left him deflated. Every morning I have to hear his complaints about what a waste of time it is to go to school. I'm not entirely sure what the answer is to our dilemma in the long term (private school?), but thanks to IXL and Khan Academy, I have the tools to teach math to Alex in ways I could never do on my own (he is actually surpassing me in math at this point...), challenge him to work on his own in very rewarding programs (you earn stars and banners flash at you with words of praise), and allow him to soar. "Yes," I tell him. "School is boring right now, because you aren't yet in your place. You haven't found your people. Why don't you help the other kids catch up with you. And when you get home, we'll do the real learning." He sighs. "We'll work on converting fractions to percentages," I promise. He cheers up slightly. "Well, at least I have music today," he concedes. "Maybe I'll win another participation award." Thank goodness for music class.

Run 7 for 7! with Alex

Alex will be turning 7 next week. I remember on his first birthday how I breathed a sigh of relief because we had gotten through that first, hard year. Now that he is older, he is able to articulate how his body feels, whether he is sick or has a headache, if his limbs or back hurt from the pull of cerebral palsy, and he can share his frustrations and triumphs. As a baby, we just had to guess if his crying meant serious problems and pain. We had one trip to the ER that was completely unnecessary, and one horrible night when we realized we should have taken him to the ER days before. This year, as we celebrate all that Alex has overcome, we are doing what Alex loves most, running. Join us during the week of September 23-28th, for our Baby Alex Foundation event, Run 7 for 7! to help us raise money for pediatric brain injury research and support. Alex will be out there every morning running before school and participating in this event. He will also be having sugarfree cake and sugarfree ice cream and doing what 7 years olds do on their birthday, opening gifts with friends. For more info, visit our donation page: . Thanks for running with us.