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.