Extra Pulp: Great Expectations

Laura Anders Lee learns to adjust her expectations on the first day of school.

I admit I was a perfect student, the teacher’s dream from kindergarten through college. Then my son with special needs came along, forcing me to look at school in a completely new light.

Anders will start first grade this month, his eighth school in seven years. While our family has moved around a lot, we’ve also struggled to find the right learning environment for him. Anders is brilliant and kind-hearted, but he comes with a unique set of challenges, from a speech delay and anxiety to behavioral issues and sensory processing disorder.

I had never heard of sensory processing disorder until the director of our Montessori school in Celebration brought it to our attention. Merely nine days into the new school year, she requested a parent-teacher conference. When her email came in, my heart sank. Here we go again, I thought. My husband and I had been in countless meetings over the years discussing Anders. No matter what the school or where the town, these meetings were all the same—we were forced awkwardly to sit in kiddie chairs, as if we were the ones in the hot seat, and peppered with questions for which we had no answers. Various administrators and teachers all were baffled; they’d never seen a child quite like our son. Their lack of knowledge and experience further frustrated us. We weren’t experts. We were just loving parents desperately wanting answers.

So there we sat again in those blue plastic miniature chairs, but instead of the director asking us the questions, she enlightened us. She thought Anders might have something called sensory processing disorder. Sensory processing refers to the way a child’s nervous system receives messages about sight, sound, touch, taste and smell and then responds to it. In children with sensory issues, when the brain tries to communicate with the body, the child can’t quite organize all the signals in their surroundings, and they react inappropriately. Anders hates being touched by someone he doesn’t know well. If someone snatches a toy or gets in his personal space, he lashes out. His muscle tone is weak, and he still needs to wear a Pull-Up at night. He can’t stand to smell our dinner or hear our chewing, so he demands to sit in another room for meals. He freaks out at the slightest change of plans or routine. Anders gnaws constantly on his collar, so much that he has holes in his shirt and his buttons pop off. He gets irritated by noisy places, which unfortunately means classrooms. Add this to a quick mind and a severe speech articulation disorder, and he’s overcome with frustration, and even anger, every day.

Our school helped us identify some local resources, like LifeSkills for sensory integration therapy, A Boundless Care for a behavioral coach, and the Osceola school system for occupational therapy and speech—that’s free even to private school students. Scholarships and insurance reimbursements are available for children who qualify. For years, our family struggled blindly, not knowing where to turn, and here we are two years later with progress, hope and an IEP—an individualized education program—we can transfer to any school anywhere.

In comparison to his peers, Anders is still way behind in speech, reading and writing and has far more trouble controlling his emotions. I still cringe when I hear mothers on the playground bragging about their children’s test scores and advanced reading level, but I’m learning to set my own expectations for Anders’ success. I certainly don’t want labels and test scores to dampen his passion for knowledge, because, boy does he want to learn.

When Anders still couldn’t walk at 15 months, my husband reassured me with the obvious fact that he wasn’t going to kindergarten scooting around on his bottom. I know Anders is not going into middle school illiterate. He’s going to read. He’s going to speak clearly and articulately. He’s going to be successful. He’s just going to do it in his own time.

Anders is nervous about starting first grade. It’s a big milestone year for him, and he’ll be entering a new classroom with strange teachers and new friends, which I know will be especially hard on him. In order to cope and to thrive, Anders is just going to need a little more time and a lot more patience and empathy from all of us around him. And according to him, he just needs a $10 fidget spinner from 7-Eleven, and he’ll be good to go.

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