Ribbon Cutting: Alex's Library

We have big news at The Baby Alex Foundation! In mid February, we will be hosting a ribbon cutting of the first Alex's Library at the Farmington, CT NICU (extension of CT Children's Medical Center). This has been a 2+ year project, that began with a vision to provide a peaceful and inspiring place for families whose infants were in the neonatal intensive care unit. We spent 5+ month in the NICU when Alex was born. We tried to find success stories for children like Alex, who suffered a grade IV and grade III brain bleed. We really could not find any, and if you look to the March of Dimes for inspiration, you might be disappointed-we were. So, we designed a library, filled with inspirational books, right there inside the NICU. Parents don't need to go searching. They don't need the internet. They only need to walk a few steps and enter a soothing space where books on a variety of topics are there at their fingertips to inspire them to hold on, keep hope alive, and remember that this time in their lives is only temporary. Our grant provided copies of Alex's book, Alex's Start to Life (now in color) as a free handout to all. We had help in this project and are forever grateful to the work done by the runners at Team Making A Difference who ran the Hartford Marathon to raise nearly $10,000 to make this library possible. And a super contribution from Tecton Architects and KBE Building Corporation. It is amazing what can be done by people who dream big. Thanks to all! This ribbon cutting is a private ceremony, due to the sensitivity of its location inside the very busy NICU. We will have pictures up on our website for anyone who is interested. If you live in an area with a NICU that would be interested in adding an Alex's Library, please reach out to us to begin an inquiry process. For more info, see our website: www.babyalexfoundation.com.

Opportunity Knocks: Learning Lessons from Boredom

Are you kids bored? That's good. Don't give them a screen to occupy their time. Give them the gift of boredom. Whether they are bored in their classrooms, at home or when they visit their grandparents, embrace it. There was a time when I tried to protect my children from boredom, but this year, we are using boredom as a lesson in life and an opportunity to grow. Technology has put an end to periods of inactivity in our kids' lives, which means that much of the creative thoughts that go through a child's mind during periods of quiet and inactivity, have disappeared. Those brilliant, Aha moments or I've got it! moments will become dinosaurs if we put a screen in front of our children who complain, I'm bored. Alex complains of boredom a lot, especially in terms of school. He is gifted in many ways, and gifted children find the classroom extremely boring because of its rigidity. With the focus on test scores in public schools and the resulting lack of creative teaching in so many classrooms, your child may feel the same. But rather than run out the door with your child, talk to him or her about using boredom. If you need inspiration, look to some of the greatest minds on earth. Einstein, for example, was bored in school. In fact, he was kicked out because he asked too many questions and upset his teacher who didn't know the answers. But during those long periods of boredom in school, he thought. Alex has a tendency to drift off into deep thought. A good teacher will realize he is bored. She might have the insight to ask him what he is pondering. If she did, she would find some exceptional discoveries. At breakfast the other day, he was deep in thought. I asked him what was on his mind. He said he was trying to devise an instrument that could do a blood test by simply reading blood from outside the skin. In other words, an instrument that would prevent the need for a painful needle and blood draw. He was inspired by a recent article we read in the New Yorker about $1 paper microscopes that are changing science, particularly in the third world. And he was inspired because he needs to have his blood drawn again this month, a painful and dreaded trip to the doctor. So, let your kids be bored. Explain to them how they might embrace that time. Ask them what they are dreaming up when they are drifting off in thought. Don't be surprised if they lose interest in screens.

Beyond BookSmart: An Incredible Resource for Students and Families

I stumbled upon Beyond BookSmart this summer (www.beyondbooksmart.com), and found it to have been one of the greatest accidental discoveries I've made since we discovered eggs to be Alex's epilepsy control magic food. Beyond BookSmart is amazing and the tools they use to teach kids to manage their emotions, anxieties and academic tasks are effective, innovative and based on educational and neurological research. I loved their approach to learning so much, that I joined the team and am now an Executive Function Coach. I have begun to use some of their tools with Alex and Izzy and am impressed with the immediate positive results we have, even on small tasks such as studying for a spelling test. If you have a child, regardless of age, who is struggling in school, due to feeling overwhelmed with the workload and homework assignments, reading, essay writing, anxiety over test taking or any aspect of school, you would be wise to check out Beyond BookSmart. Coaches usually have an educational background, understand kids of all abilities and go through rigorous training before they ever meet a client. Coaches work with parents and students to gain insight into the issues at hand, and slowly introduce tools for better time management, emotional regulation, anxiety and academic progress. www.BeyondBookSmart.com.

Tennis

As our theme this summer is gross motor skills, Alex is playing as many sports as he can - tennis, running, swimming, biking (iCan Bike program), lacrosse and gymnastics (not all in the same week). Yesterday, in tennis camp, the kids learned to serve. I was really nervous that Alex was going to get frustrated because serving means launching the ball with his lefty hand. I didn't think he could do it. But that is the beauty of having someone else teach your child--there are no preconceived instructor doubts about your child's ability, and it has been my experience that most kids will rise pretty close to expectation. I typically run during camp time, but try to catch the beginning and end. I was amazed yesterday when I sat down to watch. There was Alex, launching the tennis ball over his head using his lefty hand, and hitting the ball with his racquet for a lovely little serve. If your child has weakness in either side, try playing tennis. There are so many opportunities to strengthen both sides, and there is something about whacking a ball around that is incredibly therapeutic, for the parents too.

iCan Shine Program

If you have a child with disabilities, check out iCan Shine. This is an amazing organization. This week Alex has been learning to ride a 2-wheeled bike with iCan Shine, in their iCan Bike program. It has been amazing to watch. They use a roller system on the back tire that they taper as the kids gain balance. By Friday, most of the kids are riding their own bikes! Wow, this is awesome. We have been struggling to teach Alex to ride a bike for years, with horrible results. He was at the point where he simply refused to even get on the bike. But now he rides with ease. For kids who can't quite master 2 wheels, the program offers a cool bike handle for the back of the bike for parents to grab in need. We are adding that to Alex's bike today, because he has trouble getting on and off and needs that support. Grabbing a handle is a lot easier that trying to support his bike or body-the handle will save your back. Watch a demo from this week. http://www.wfsb.com/clip/11755809/students-in-milford-learn-how-to-ride-bikes

Summer Skills

It's summer again, our family's favorite time of year. We are back from our incredible trip across the country and looking forward to summer fun. For children with disabilities, summer is an excellent time to focus on one or two weaknesses (needs, challenges...). Creating daily rituals and summer camp classes to strengthen those weak areas is a great way to focus the summer activities. For example, although Alex's left hand is stronger and more capable, it is still significantly weaker than his right arm, which is now noticeably longer and bigger. Last summer we put him through a camp designed to strengthen that left arm and hand, while casting his right one to keep it immobile. This summer, we have chosen not to do the summer camp, but to focus on strengthening that left arm. So, our activities are all about strengthening left. Gymnastics camp, swimming, lacrosse camp and pushups are some of the activities we will use to work that left side. Of course Alex still needs work on his fine motor skills, but there is only so much advice to "work lefty" that Alex can tolerate in a day, and so we have made a choice to focus on the large muscles. Alex's personal goal is to run the 3 miler in our annual race, The Run Baby Run Baby Ultra in August. He has started a daily running log, and is slowing working up to running 3 miles without walking. This is a huge goal for him, as the heat and intensity of the exercise cause him headaches and exhaustion, but we let him work at his own pace, set his own goals, and write down his daily progress toward them. Finally, Alex is finally tall enough to participate in the iCanBike program, which teaches children with disabilities how to ride a bike (something we have been unable to do), using a weighted fishtail. And so, in the middle of August, we take one week to focus on one goal, learning to ride a bike. And while Alex is in camp, I'll be outside with Izzy to get her on 2 wheels as well. And of course, every day includes Alex's sugar free ice cream, homemade, creamy and delicious. We love summer.

Izzy's Bog: All About Horses

At Zion, I went horseback riding through Zion and I liked crossing the stream on horseback. We also went horseback riding in Palo Duro, Texas and in Colorado. In Colorado, wild horses came up to us while we were riding. It was so fun!