Thursday, November 20, 2014
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.
Thursday, November 13, 2014
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.
Tuesday, October 14, 2014
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.
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.
Monday, September 29, 2014
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!
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.
Monday, September 15, 2014
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.
Saturday, August 30, 2014
The Baby Alex Foundation was fortunate to have been chosen to be the 2014 recipient of the fundraising efforts of Team Making a Difference (Team MAD). This team of runners races the Hartford Marathon each year and raises money for a worthy non-profit that is doing something to change the lives of individuals in CT. The donation will go directly toward funding our first Alex's Library project at the CT Children's Medical Center NICU in Hartford. If you are a runner, help us raise money by joining Team MAD this year. To join, go to www.goteammad.org. The team provides fun training runs, a t-shirt and pre-race party. We hope to see you there!
If you live outside the Fairfield County vicinity and have any interest in learning more about my publications, The Value Tree series, tune in on September 2nd at 1:30pm or 10pm to www.soundviewtv.org, and click on the top left icon "on air", to hear my most recent interview with Herbie Bagwell. We take a brief look at the lessons and discuss the importance of teaching values to our children. For those in Fairfield County, the interview will air on local access TV on the 2nd, at 1:30pm and 10pm. Thanks for watching!
The inaugural Run Baby Run Baby Ultra was awesome! The race took place on August 9th in the beautiful lakes region of New Hampshire. We had 25 enthusiastic runners, including a team of kids, and loads of supporters. A huge thank you goes out to The Poor People's Pub in Sanbornville, NH, where the race started and ended. The Pub provided us with an indoor space for registration, lots of prizes for our raffle, pizza and sodas for our post-race party and a cheering squad. Thank you, thank you, thank you Poor People's Pub! We packed about 50 people into the back party room for an hour of eating, drinking and prize-giving. Our sponsors donated loads of gift certificates for our first place winners and fundraisers. This was our second highest fundraiser of the year, and we hope to grow it next year to be the biggest.
Thursday, August 28, 2014
Alex had a good summer, a complete 180 from last summer when we were still trying to figure out his nutritional needs. Over the last 12 months, we have figured out his diet (at least we think we have) and have gotten much better at following it. If he gets off the diet, as he often does while traveling, we are usually able to get him back up to his normal energy level after a day or two. One of our miracle foods is coconut oil. For the past year, I have been cooking everything in it: french fries, popcorn, pancakes, everything. I also add it to everything I can think of: pie crust, pizza dough, bread, cookies, muffins, smoothies, etc. It's nutty and sweet and is easy to get used to. There is a new product on the market I haven't yet tried, but which looks very promising. It's called Fuel for Thought. It's a small drink, made of coconut oil and some sweeteners (and probably some other stuff, because try as I might, I can not replicate it at home). My only problem with it is that it is too high in sugar for Alex to safely consume at school, when I am not around to monitor his sugar intake. I have written to the company and am hoping they come out with a version fit for epileptics, and everyone else who suffers a disorder that worsens with an increased sugar intake.
Tuesday, July 29, 2014
I've had loads of inquiries about summer school this year, so I'm setting out our schedule here. We have had a lot of camp this summer, first with 3 weeks of cerebral palsy camp for Alex and day camp for Izzy and then another week of lacrosse camp for both kids. During camp weeks, I don't worry about teaching anything. I just try to read with them at night. Now that camp is over and we have 4 straight weeks to be together, we have our summer school schedule worked out. This summer our theme is Greek Gods and Mythology. I purchased the student copy of Greek Gods through Calvert Education. Calvert is a private school in Baltimore that has a homeschool division. I find that my kids are ahead of their grade level by at least a year with the Calvert products, but you can give your kids an online test to see where they are. I jumped ahead to the 4th grade supplemental materials and purchased the Greek God curriculum. It's simple, clear and comes with fun pictures to color. During the first part of the summer, I read 2-3 stories aloud each day while the kids colored the gods from the stories. We discussed the stories and reviewed what we had read, talked about where we often see Greek Mythology (Harry Potter), and related some of the stories to our lives. Once we finished the book, we went back to review them and create our own gods. So, our Monday-Thursday goes: I. Greek Gods (our Greek Gods curriculum from Calvert supplemented with free videos, mostly from YouTube, about specific gods - on Mondays they design a poster about a favorite god, on Tuesdays they create a poster of a new god from their imagination, on Wednesday they are doing clay art where they make the gods out of clay and on Thursday, they finish up their projects and practice their presentations which they give on the weekend to their dad), II. Language Arts (various early reader books, rhyming books, poetry, etc--the kids read, write and draw about what they read, write in their journals, write down words they know or don't know, create their own poetry, etc), III. Math (from Singapore math, purchased online, mostly workbooks, or IXL online math with Kahn Academy to supplement) - then we take a big break to run, swim, etc. In the afternoon, we have a babysitter who is also a preschool teacher, who is teaching the last two lessons: IV. Values (straight from The Value Tree Summer School Series Volume I, which means they will cover 10 values this month, draw pictures and keep journals on their efforts to live a value-based life) and V. Art (mostly watercolors this summer). Fridays are called Science Fridays and they are all about math and science. I bought several science kits and we will work our way through these. Plus, we are listening to Brain On!, a free podcast for kids, about topics related to our science kits. I've adopted podcasts this summer and am in love with them! There are so many amazing podcasts out there. If your kids are older, and they love science, Science Fridays is awesome. I love listening to podcasts while running too! Great for entertaining kids in the car too, if you have long holiday drives. I love sharing Mommy School, so if you have questions, shoot me an email rather than a blog comment at: email@example.com.
The Value Tree Summer School Series Volume I, which includes a textbook and journal, are now available on Amazon. Each of the 4-volume set teaches ten values, with easy lesson plans, fun activities and illustrative short stories to accompany each value. This series is appropriate for ages preschool through middle school. This series is designed for summer camp, summer school and homeschool parents--a must for summer education! Volume I is now available. As the other 3 volumes become available, I'll announce them here and on our website: www.currierbooks.com.
Wednesday, July 2, 2014
I ran yesterday in a blazing sun for about two hours. My shirt was drenched, in that only in the summer kind of sweaty mess that you just can't replicate in cold weather, no matter how many layers you wear. I had recently spoken to my old manager, and we reminisced about our days in Tunisia, running with the Hash House Harriers over sand dunes, along the Sea with its dozen hues of blue, through gnarly woods and down footpaths I would never have traveled alone. We used to sweat there too. I reminded him of a time he was so drenched in sweat that I commented that if we all got thirsty we could just suck on his shirt. His teenage daughter, running with us, was disgusted. In those days, I ran for the pure feel of movement. I ran as a tourist, with an interest in the people and places you just couldn't reach by car. I ran to engage my colleagues, to stay in shape in case of an emergency (and there were plenty of those), and I ran because I couldn't live if I didn't run. Yesterday, I ran to wipe Saturday clean from my psyche. After about two hours, I felt I could stop. I finished up in time for lunch and to check on Alex who was back to camp, still blistered, but better. He was so hot and tired he could hardly answer my questions, and so I asked that he spend the rest of the day in an air conditioned room where he might focus on fine motor skills. I spent the afternoon working on my next book, an adaptation for our YMCA which is using The Value Tree in their summer camp. I glanced out the open window to see Izzy returning from her afternoon tennis lesson at camp. Her face was scarlet. When I rounded everyone up to go home, I knew there was only one solution to the heat, a swim. As soon as we pulled into our driveway, we changed into bathing suits, and raced out to the beach. The sand was on fire, but the water was icy cold. It was high tide, my favorite tide, because we can wade out for yards on sand without ever going in over our heads. We all went under as fast as we could, our lips stinging in the salt, but smiling. "I love your suit," Izzy commented on a skimpy black bikini I didn't often wear. "You look skinny." "Lookin' hot Mom!" Alex yelled from the waves. Alex, still wearing his sunglasses but no goggles, practiced freestyle for an hour. Izzy, having bounced and splashed until she was dizzy, rolled onto her side on a towel and shut her eyes. I stood apart and watched my children, blissfully content in the summer heat, perfectly happy at being 5 and 6, no older, no younger. There could not have been a more perfect Tuesday afternoon.
Monday, June 30, 2014
There is nothing like walking by the shore, listening to the sound of waves hugging sand, that soothes a weary mind. As Alex and Izzy splashed in the water and skipped oyster shells this afternoon, I walked the shoreline, collecting sea glass. We have an enormous wine glass that sits in our kitchen, nearly filled to the top with wave beaten glass of all shapes and sizes, collected over the past six years. The frosted colors look like sugar candy. The sight of them brings back memories. Each one has a story. Although I hide in the mountains, as far from civilization as I can, when I am out running on trails, I always return to the sea. I empty my soul in the woods, but I am filled again with peace by the ocean. On Saturday, Alex spiked a fever of 104, the cause of which was a most insidious virus that has left him with blisters and discomfort. The seizure brought on by the fever attacked his little brain with a fury. It swooped in, halted all control he had over his body, and seized his ability to breathe. Erik had only just turned one last moment to lay eyes on him, bundled up in our bed while Izzy watched cartoons downstairs, as he started to shut the door and find some Tylenol. Alex's seizures are silent. Had Erik just left the room and shut the door, we would not have heard Alex upstairs. When Erik yelled for me, I expected to find Alex shaking a bit. I expected to rub his pressure points and help him fall asleep to sleep it off. Instead, I found him blue, his eyes rolled into his head, his arms shaking wildly. We did everything in our power to help him breathe again. We pounded his back and chest, massaged his body and yelled into his face, "Breathe Alex!" His body turned from blue to gray, his lips from blue to black. Life, with all its problems and irritations, seems so permanent, until it nearly slips away in a few moments. I knew Alex might never take another breath unless we stopped the seizure, and I happened to have one old Valium tube nearby. For all I knew, it was expired, but to locate the other Valium, downstairs in my purse, would have meant seconds we didn't have. I grabbed the old tube and administered it, and we waited. He started to breathe. His color immediately returned, his shaking stopped, and he drifted into a deep, heavy breathing sleep. It takes Alex days to recover from his seizures, especially if we have to give him Valium. So, today, he is finally out of bed and able to walk across the street to the beach. I soaked him in the ocean for an hour, hoping to dry up his blisters. I watched dig holes in the sand with Izzy, his best friend. I collected sea glass.
Wednesday, June 25, 2014
We are mid way through the first of three weeks of Lefty Righty Camp. I'm exhausted and Alex looks like he is running a marathon every day, which when you add up the work he is doing, is probably the equivalent. This amazing camp uses constraint therapy to work the weak side of kids with cerebral palsy. Alex has a brace on his weak left leg and a full cast on his strong right arm. For 6 hours a day, the P/Ts and O/Ts work the kids' weak sides, working their gross and fine motor skills. Because it is a long drive for us, and due to Alex's tenuous seizure stability, I have to stay on campus. The camp, run by a private therapy office, takes place at a very nice private school, the same school, in fact, that rejected Alex 2 years ago because they did not think they could "satisfy his needs". That bitter pill has mostly dissolved and I am enjoying running around their playing fields. Izzy, who needed something to do while Alex was in camp, is attending the private school's summer camp. This constraint camp is the first time in our lives that we are interacting consistently with families of children with brain damage. It is both inspiring and depressing. What strikes me most is the love and dedication of all of the family members who send their kids here. Families drive 2-3 hours in some cases, every morning and evening, to allow their kids to attend. Siblings join their parents on the long drives and are there to encourage and support. Yesterday, I watched as an older brother whispered into the ear of his little brother, blind and wheelchair assisted. The disabled brother listened intently and sat contentedly, madly in love with his older brother. Or was he the older brother? Maybe not. Maybe he was younger, like Izzy, who took over the older sibling's role. These healthy siblings carry concerns that most kids do not. Worry, fear, anger, love, pity, patience, guilt, sadness. It isn't easy for anyone. One incredibly brave mom flew in from Iowa, checked into the Ronald McDonald house, and overcame the many annoyances of traveling alone, with a child with disabilities, to a new part of the world, to stay in one of our state's armpits, after arranging for the care of her other three kids back home, so that her 3 year old would have this opportunity to improve her physical and cognitive abilities. She and her daughter are now staying with us. Many of the moms, like me, stick around all day, knitting, reading, or setting up small offices in the dormant kindergarten rooms, squishing into tiny chairs and hoping that no one asks us to find someplace else to work. Our hounds come along too. I take them running after drop off and take them out for periodic water breaks throughout the day. The campus grounds are about a mile circumference, so I can run, around and around, and always be near should Alex need me. It's all worth it. From day one, we have seen major improvemens in Alex's weak hand. He comments on it every day and shows me all the things lefty can do that he couldn't do last week. A new pediatric orthopedic surgeon whom we saw last month told me twice during our visit that "the literature shows that on average there is no long term benefit to constraint therapy...". I responded that it was constraint therapy that finally unwrapped Alex's arm from his chest at age 2, and that we have seen nothing but long term benefit from this therapy. She said, "oh, well, if it works for you...". Uh, ya, right. I wonder how many patients she has discouraged from taking advantage of this life-changing therapy. Fortunately for all of us at Lefty Righty Camp this week, we turn a deaf ear to the discouragement, and lead with our gut, and our eyes, and our hearts, as chipped and cracked as they sometimes feel.
Sunday, June 1, 2014
The website for my two books, The Value Tree and The Value Tree Journal is up and running this weekend. Check it out at www.thevaluetree.com or www.currierbooks.com. I am beginning to populate the calendar with demos of the book, which is appropriate for classroom settings of any kind (home schools, traditional schools), and will advertise these events on the website. Although the books are available on Amazon, they may also be purchased through me at any of the public speaking events. Thanks for reading!
Thursday, May 8, 2014
The Value Tree: Cultivating Values for Happiness and Success and its companion book, The Value Tree Journal, is finally published and available on Amazon. Finally. These books grew out of the value-based curriculum I developed over the years while homeschooling Alex and Izzy. My kids love Mommy School, and most sessions begin with a lesson on values. There are art projects, roleplaying exercises, and brainstorming scenarios to reinforce the value. The Journal follows the textbook, with writing exercises which allow the children to reflect and record how they are living their values in daily life. If you are homeschooling your kids, or want to supplement their study of values, you might consider including these books in your lessons.
Wednesday, May 7, 2014
A couple weeks ago, I ran an ultra with a friend of ours. He ran to raise money for The Baby Alex Foundation, and completed what would be his longest run to date, a 50K, 31 miles. He sent me an email before the race which read, "By the way, mile 31 is for Alex." At the start of the race, he pulled out a card with 31 miles and 31 names. He ran each mile for someone else. "There he is," he said, pointing to mile 31. Another friend of mine ran across the USA a few years ago, entirely alone. He spent his solitude praying for those in need, praying for himself, and meditating on life. People think I am a little nuts when my answer to so many of life's challenges is running. "You need to run," I tell people who come to me with problems. And if they are already running, I revise my statement, "You need to run farther." Running not only lowers the stress hormone in the brain, burns unwanted fat and calories, brings fresh air and new sights and sounds to our senses, but it also provides us with the time and mental space to meditate on our lives, the people we love, the mistakes we have made, and the future we hope to create. And running a few miles for someone else is a form of love. I suffer for you, because I love you, a sentiment repeated countless times in our world religions. Running is my religion, and while there is some suffering sometimes, it is mostly joyful and offers a time of reflection. I was running 50 miles that day a few weeks ago, and it meant running loops around a lake. It was a brutal day, cold and windy, like the rest of the year. I dedicated my loops to a few of the people in my life. One of those loops was for Izzy, who had broken into tears a few days earlier. "I wish I never had a brother with brain damage. I wish I didn't have to pry his lefty fist open to hold his hand. Why do I have to have a brother with brain damage?" She was so angry. I knew Izzy held intense emotions about Alex, but she had not yet expressed them to me in this way. We talked it out, and when she went back downstairs to play I went into my closet and cried. I ran about 8 miles for her at the ultra. I ran the next to last loop for Alex, and I imagined him and Izzy running with me. I tried to picture him running an even stride and his left arm as strong as his right, but that was incredibly difficult. For some reason, I just couldn't make the picture right. His arm was smaller and his limp was still there, but I also saw his smiling face, his mussy, sandy blond curls. He and Izzy and I ran together. I was slow, and they, not quite adults, kept my weary pace on Utah's dusty trails. Pure happiness. There were 3 more loops of the ultra which I dedicated to others in my life, and then the final loop, which I gave to myself. Once my heart rate rises comfortably, and the noise of everyday life dies down in my head, I enter a deeper meditative state when I run. The farther I run, the deeper I meditate. At some point, I am aware only of the rhythm of my feet and the trails around me, and eventually, I am ready to stop, return home and kiss the blondy curls and little toes sleeping soundly in their beds. How do I make the most of my life, whatever it may be, whatever mistakes have been made-how do I make every moment meaningful? It is amazing how clear the answers become after a few miles of solitude.
Thursday, April 17, 2014
Whenever we drive, whether the 5 minutes to school or 5 hours on vacation, we listen to books on CD. This past month, we have been going through the Harry Potter books. I had never read them and I am completely amazed at their brilliance. The kids and I are on the edge of our seats anticipating what will happen next. The books have inspired all kinds of creative play between the kids and we have designed our spring math course into what we call Harry Potter math. We do addition, subtraction, multiplication, division and fractions around crazy potions. For example, if you are making a Love Potion for 7 wizards, and you have 21 cat whiskers, how many cat whiskers go into each potion? Once the kids figure out the math problem, they then must design this witches' brew on paper. The kids have a blast doing the math and artistically demonstrating what cat whiskers and toad toes look like on paper. Now that we are well into our third book, I have noticed a pattern in the stories which prove the author even more brilliant than I had originally thought. She is a good story teller, and an excellent writer. But more importantly, she understands what it means to face your fears, and she demonstrates this understanding repeatedly, whether through the eyes of an adult or child. Today, when Harry Potter was learning how to defeat the mind power of the dementors, he had to think of the happiest thought he could muster while the dementor attempted to scare him unconscious with the horrifying image of his mother and father's death, complete with the sound of their terrified voices. Again and again, Harry attempted to think his happy thought so as to reduce the beast to a wisp of smoke and render it powerless. Again and again, he failed. Until he succeeded. Of course, this is a lesson in perseverance. But it is also a lesson in facing fear. Although Alex has been out of the hospital for years now, horrifying images of his suffering haunt my dreams, take over my peaceful thoughts in the middle of long runs, wake me in the middle of the night and taunt the quiet of our sleeping house by the sea. From our study of the brain, I understand that the more you meditate on a thought, the stronger it grows, and so I have worked to clear my mind of these images, so as to render them powerless. It took me a long time to figure out how to move these images out of my head, but as I have practiced, my control over them has grown stronger. I would assume that most parents face some pretty difficult memories and worries in the middle of the night. Whether waiting for a teenager to return home late at night, or recalling a child crashing while learning to ride a bike, we all wake in the middle of the night, worrying. We don't worry much as kids, so we don't really get the chance to strengthen the skill to face our fears and deal with middle of the night concerns, and I believe that is part of what makes parenting difficult. We aren't really prepared for the worry. I find comfort in the fact that Harry Potter is working to face his own fears. Even though he is a fictional character, he comes alive and teaches us all many lessons. Not only do we discuss the plot of the book every day, Alex and Izzy and I discuss the importance of the complex life lessons that the characters are learning. "Professor Snape is so mean!" huffs Izzy. "Yes, and you will have mean teachers too. Pay attention to how these kids deal with them. You need to learn to deal with them in your own life." "The Dursleys are so unfair!" exclaims Alex. "Yup. Unfair. Cruel. Rotten. Unhappy. Scared to death of Harry. What will you do when you meet people like that?" "Fred and George Wheasley break so many rules! Hermione is such a know-it-all! Scabbers is such a sad rat without any powers!" And most important are our discussions around facing fear. Whenever the kids have a new task that scares them, I remind them of Harry Potter. "I'm afraid to step on the ice, Mommy. What if I fall on my skates?" "I don't even know how to play whiffle ball, Mommy. What if I can't hit the ball and the kids laugh at me?" "I don't have a single friend at this camp. What if no one likes me?" "Yes," I tell them. "That is scary. What would Harry Potter do?" And so, when I wake in the middle of the night to the image of Alex covered in blood after a botched procedure in the NICU-so much blood that he had to have a blood transfusion afterward-with Erik, pathetically sponging his little feet and not a single doctor or nurse to lend a hand, one of the many images I will never quite conquer, I picture Harry, wand in the air, conjuring the image of his first flight on a broomstick while reducing the dementor to smoke. Then I think of the kids' peaceful faces as they dream in their beds, and I fall back to sleep. And in the morning, while cooking bacon, I am able to smile.
Monday, April 14, 2014
The other day I made an accidental purchase. While in the book store, I picked up Gretchen Rubin's The Happiness Project and skimmed through it. At first glance, it seemed self-indulgent (on the author's part) and long. I wasn't really interested in reading about someone's 12 month project to find happiness. I really just wanted a book that might give me a few basic steps to appreciating every day. It has been a hard winter. But somehow the book found its way into my pile of other books, and when I got home and discovered it next to my bed, I figured I might as well read it. For anyone looking to improve a life, take it from fine to good, from seasonally affected to "Bring it on, rain..." I recommend it. For parents, I really, really recommend it. For parents of sick children, it is a must. In fact, it is going to be part of the book list for The Baby Alex Foundation's Alex's Libraries which we are setting up in hospitals in CT this year. The book is filled with some shocking statistics (A 30% increase in one spouse's happiness boosts the other spouse's happiness, while a drop in one spouse's happiness drags the other down.), great insights (when I made the effort to reach out for them, I found that the ruby slippers had been on my feet all along), inspiring quotes (the days are long, but the years are short), and a plan for focusing on one aspect of happiness each month (January: Boost Energy; February: Remember Love...). The author, Gretchen, is looking to make her good life happier, maybe because of middle life malaise, or maybe just as the next challenge to an otherwise incredibly accomplished life. In our household these days, we are all working on happiness. Alex reminds me often to smile more. Sometimes he gives me a hug because I look unhappy at breakfast. Izzy tells me point blank that I do not demonstrate enough happiness when I spend the afternoons with her. They both complain about Erik being tired all the time (the poor guy). I read the book in a few days and immediately set to work to extract what might work for us. Every family is different, and every family has different needs when it comes to focusing on happiness. What stood out for me is the idea that you simply can't afford to wait to be happy. No matter what the circumstances, to truly appreciate every day, you need to work a little, and honestly, life is way too short to wait for the perfect moment to find happiness. Once you work a little, you find the happiness you desire, and realize it was there all the time. After a while, it takes less work. For me, it is simply a matter of smiling more often, so that the kids see what I feel: happiness at being with them. There is no place I would rather be. I didn't used to smile while making bacon at 5:30am, but now I do. We are all happier.
Friday, March 28, 2014
Although I have written many times about the importance of fat in our diets, I am going to write about it again. Today on NPR, I heard a broadcast that lambasted the old recommendation of a high carb, low fat diet which my generation was raised on. According to new studies, this diet is linked to a massive increase in the rate of obesity and diabetes, Alzheimer's and ADHD, and any number of other epidemics. I am in contact with about a dozen people every month who have children with behavior issues, sleep issues, epilepsy, low energy levels, concentration problems, and other issues which, in my opinion, are caused by a poor diet. Too much sugar, too many carbs, and not enough fat are at the root of it all. And yet, when I suggest people make the change to a high fat, low sugar/carb diet, they step back and lower their eyes. I tell them that all it takes is one afternoon. For one afternoon, they need to take the time to throw away all the high sugar and high carb items in their house, and then go shopping for the healthy replacements. I also suggest, as our nutritionist did to me, that they give their children teaspoons of oils at breakfast and dinner. Alex and Izzy get fish oil in the morning and other oils in the evening. Alex simply cannot function without them. If we go a couple of days without our oil supplement, he gets low on his fat intake and he gets irritable, tired, has trouble sleeping and becomes antsy. Fat is the brain's friend, and therefore your friend. So, eat fat, you will sleep better and so will your children. In the seven months since we drastically changed Alex's diet, we have had our lives returned to us. I have been able to train, to work with The Baby Alex Foundation on fundraisers and other development projects. I can think clearly, and my stress level is significantly decreased. My life's focus has shifted away from a sick child and toward a more functional everyday life. The only hitch to all of this is when Alex gets off his diet, we have a few days of scrambling around to make it right...that's hard and it reminds me that we live with a brain injury. But it also reminds me of how far we have come.
Our new Baby Alex Foundation website is up and running. Still at www.babyalexfoundation.com, this site has been modified and updated to reflect our mission to support pediatric brain injury patients and families. We have added two pages on various therapies Alex has used with much success, as well as a sampler of our new initiative called Alex's Library. This summer, we plan to complete three of these libraries outside the CT Children's Medical Center's 2 NICU's and 1 PICU. We have identified the rooms and will need to begin painting and furnishing, as well as stocking these rooms with over 3 dozen books that have supported our efforts as parents of a preemie, a child with brain damage, epilepsy and cerebral palsy, as well as our determination to find meaning and inspiration from our experiences. Decorated in Foundation colors-gray, black and orange-these rooms will be furnished with deliciously comfy sofas, chairs and rocking chairs. The rooms are intended to serve as a quiet place for families to sit and think, read and contemplate, and most importantly, find hope while their child is in the hospital. We hope to have children's hand prints all over the walls with inspirational quotes and photos. Once Alex finishes his own book about his childhood, we plan to make these books available to take home.
Friday, March 7, 2014
The Run Baby Run Baby Ultra is officially on the ultra calendar. Check it out at www.runbabyrunbabyultra.com. And today, we open for registration. Although this is a baby ultra (25+ miles), we may aspire to increase the distance in the coming years. For all the runners out there, please join us on August 9, 2014 for our inaugural race. The course starts and ends at the Sanbornville, NH Poor People's Pub, travels through the quaint town of Sanbornville, then turns up and over Moose Mountain on dirt roads and trails, back down into the bustling town of Wolfboro, joins up with the Cotton Valley Rail Trail, then cuts through some rugged trails and dirt roads to return back to Sanbornville. I've run the course so many times I can't count, and I love it. I hope our runners will feel the same. This is a fully self-supported race, and all runners must carry their own water/food. There will be just one resupply stop at the half way point in Wolfboro. In addition to a $50 entry, there is a $250 fundraising minimum. Finishers awards to all, and the top three fundraisers will win a grand prize, plus race t-shirts, hats and giveaways from Poor People's Pub. All funds raised will go toward funding our research grants and patient and family support projects.
Monday, February 3, 2014
Whether you have a child with neurological complications or not, you should read Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar-Your Brain's Silent Killers by David Perlmutter, MD. I might not be such a devoted believer in the evil of sugar and carbs if I didn't see the immediate effect they have on Alex. We know Alex has had too much sugar, even natural sugar, when within 20 minutes of consuming it, he has a behavior change. Sometimes that behavior change is hard to reverse. A year ago, before we understood that sugar and carbs are the triggers to his epilepsy, that behavior change triggered by sugar would be the start of a 24-72 hour spiral into a seizure. With the exception of a possible minor seizure while violently vomiting with the stomach bug, Alex has been seizure free for 5 1/2 months. Now that we understand what is going on, when we notice a behavior change, usually set off by diet or illness or lack of sleep, we have been able to course correct through high fats (fish oils, olive oils, avocado oils, coconut oils, butter, eggs) and then sleep. So, we are believers in the benefits of a low sugar, low carb diet. But, I never realized the extent to which sugar and carbs damage the brain. The root of much of our most debilitating diseases is inflammation. Although inflammation is the body's natural response to injury, chronic inflammation leads to problems ranging from cancer to Alzheimer's. In Grain Brain, Dr. Perlmutter walks us through the process whereby sugars and grains (with gluten at the center of it all) contribute to chronic inflammation and ultimately to brain diseases, diabetes, and other neurological problems. According to Dr. Perlmutter, many of our modern day ailments--ADHD, chronic headaches, epilepsy, diabetes, cancer, Alzheimer's, gluten sensitivities, obesity--can be prevented or severely reduced by a change in diet with a decrease in sugars and carbs and an increase in fats. I went on my first long run of the training season yesterday, and I truly believe that my energy level remained strong and constant throughout the run on account of my change in diet. I'm sure by now my body has retrained itself to quickly access fat stores, since I'm not feeding it with carbs and sugars the way I used to. So I was able to cruise along for 3 hours without feeling tired or depleted. I used to bring along all kinds of fuel for my runs, but now I travel lightly. I have all the fuel I need stored in my fat. We have seen a dramatic increase in Alex's endurance as well. Until we changed his diet, Alex's day ended around 1pm. He could not stay until the end of the school day or even dream of an activity in the afternoon. But in the course of a few months, he has extended his day while remaining in good spirits and with lots of energy and focus. He has a full day of school, then goes off to a sport practice everyday after school, and two days a week he has karate before school even begins. Diet...it's amazing, the key to almost everything.