Sensory Issues and the Preemie Brain

From the time Alex was a baby, it was clear that he had sensory issues that we needed to be attentive to. He used to cry when there were loud noises (such as a truck driving by the house or if our family sang Happy Birthday at the dinner table). He didn't like large groups of people in our house and would go to find a peaceful and quiet place in the house when things got loud.

As he is aging, now well past his 4th birthday, he has outgrown much of that, but still, some of his sensory issues remain. This fall when his classroom grew as children returned from summer vacations, he told me that he didn't want to go to school anymore because there were too many kids. I tried to tell him to find a quiet place in the room when things got overwhelming, but that is a large task for a small kid. He comes home from school completely exhausted emotionally and physically. And he quickly started acting out at school and at home. We hoped in time he would adjust, but his brain has just not matured, and that is something that can't really be speeded up.

I have done some research on the preemie brain and it seems that this kind of reaction to loud, chaotic environments can be common. Some of the preemies end up with non-verbal learning disabilities, where they have trouble reading non-verbal cues, come across as socially awkward and have trouble navigating their social space. Uncertain times, such as transitions from one activity to another, are particularly difficult, and are times when a child may act out. We can't say yet if Alex falls into this range, but we can say for sure that the typical school environment is difficult for him, and not a set-up for success.

After consultation with several doctors and our family, we have arrived at a solution. We will try him in his school 2 days a week rather than 5, and spend three days homeschooling him. I have consulted with a homeschooling professional and identified some excellent math, reading and writing textbooks which will serve as our guide. One of the days he may spend on Grandma's farm, where he spends most of his time outside, learning about the natural world with one of the four people he loves most in the world. Homeschooling Alex is an incredible journey. He loves it and can't get enough of it. He can literally sit for hours and focus on the projects and work, and doesn't ever want to take a break. He learns quickly, and answers intellectually. He is happy, relaxed and well-behaved. And so, we will homeschool while trying to give him some social life a couple days each week at school.

Every few weeks, we will assess Alex's progress and next fall, we will decide if entering into the private school we plan to send him to is in his best interest. It may be that Alex attends only a few days a week, and that the following year, we will be asking ourselves the same question, and assessing once again if he can handle a 5 day a week schedule.

Alex is so smart. He is reading at a 1/2 grade level, doing simple addition, subtraction and multiplication, and he is only 4 years old (and not even gestationally 4 yet). He also has an incredibly kind and good heart. But observing him in his classroom, you would not know he could read nor that he is a super kind and caring kid--he just seems lost and confused and a bit of a troublemaker.

As with all of our decisions, we are guided by what Alex's actions are telling us. This is a time to act, because we will never have his 4th year to relive. So, although I have signed up for another Ironman and several ultra races for our Foundation, and am in the process of ramping up the Foundation to become a million dollar charity, I again must scale back and refocus on what is most important--my children, and their happiness.

If you are a parent of a preemie, you have a life-long road, and just when you think things are getting straightened out, you find another twist in your life. But that is parenting for anyone, I suppose.

A few weeks ago, Alex's old babysitter was lamenting about her job, and Alex said to her, "Yes, your job is difficult, but have perseverance." And when he saw her the following week, he asked about her job. And he added, "You need perseverance, and determination too." Yes, Alex, we will persevere.