June 16, 2017

An Open Letter to the Parent of a Covertly Special Needs Child

By Stephanie Morrill

The mom of a 6-year-old with epilepsy who doesn’t “look like” he has special needs shares her wisdom for other parents in a similar situation.

The first time I noticed this unique parenting situation—having a child with special needs who doesn’t look like they have special needs—I was 22 and married, but had no kids of my own.

I was traveling with an older colleague, and she told me about her 12-year-old grandson who had Down syndrome. When she proudly showed me a picture of all three of her grandkids, I observed that he looked like a regular 12-year-old boy. She laughed wryly and said, “Sometimes we wish he looked like he had Down’s, because it can get awkward in social situations.”

Years later, when I started my journey as a parent of a child with epilepsy, I finally knew what she meant. So many times in the last few years, I’ve wished that I could stick a label to my 6-year-old’s forehead that says, “I have epilepsy.” Sometimes to protect him, but many more times out of desperation to protect my own parental pride.

I’m only hovering beneath my son on the playground because I’m afraid he’s going to have a seizure, I’ve wanted to say to complete strangers at the park. It’s not because I’m overprotective.

Maybe your child has food allergies and you’re the parent who’s reading every cracker box at a party to make sure no tree nuts have found their way onto the buffet table. Or maybe your child is on medication that makes him or her act angry, moody, or flighty. How do you discipline a child for acting out when you know it may not really be within her control?

I’ve been parenting a covertly special needs child for almost four years now, and here are a few words of encouragement that I wish someone had whispered to me when my journey started:

1. Don’t hesitate to ask for what your child needs. Most people are happy to accommodate.

Some parents have no trouble embracing that they are the No. 1 advocate for their child, but others, like me, struggle.

Expressing needs can be an uncomfortable thing, whether it’s telling the preschool director, “This is what my child needs so that he is safe at school,” or talking to the manager of your favorite restaurant to explain why the kitchen needs to prepare your child’s meal separately. But it’s so important.

While I don’t need to explain my son’s specific situation to everyone, it’s important that those in his community know what’s up. Connor is in kindergarten now, and every time he gets invited to a birthday party, I have to have a conversation with the parents about how he can come, but I’ll be staying at the party, and I need to bring his food because he’s on the Ketogenic diet to control his epilepsy.

I’ve had so many sweet parents offer to plan party food that Connor can eat, not understanding how specific his medical diet is to him. Most people are really thoughtful about it and will take it upon themselves to pack him a special food-free favor bag.

2. As much as your child is able, empower him to take responsibility for his health.

When Connor was 3 and on a variety of anti-seizure meds, it was of course up to my husband and me to make sure he was getting the medicine he needed.

But when he started the Ketogenic diet, and I knew he was going to be on it for at least two years (and likely longer), I realized he needed to know how to voice his own needs.

At his preschool, the classes were small enough that the teachers could obsessively watch him and be sure he was safe. Soon, however, he would go to a large elementary school. He needed to know that he couldn’t touch Play-Doh without gloves, use hand sanitizer (too many carbs), or accept even sugarless candy.

I cannot be with Connor all the time, just like you can’t be with your child all the time. While you must consider your child’s age and abilities, teach him as much as possible about the unique care his body needs.

3. Your child’s need is an opportunity to beautify and diversify your community.

The most common response I get when I explain Connor’s high-fat, low-carb, minimal protein diet is, “A diet that’s high-fat? Sounds like the kind of diet I want to be on!”

I know people are just trying to be encouraging, but this comment minimizes the work that Connor does every day to stay healthy. I don’t know a single person who would really enjoy drinking heavy cream with every meal, never getting to order off a menu at a restaurant, and having to miss out on every dessert.

Every. Dessert.

People probably said stupid stuff to my friend about her grandson who had Down’s Syndrome but didn’t look like it. Heck, I know that I’ve said stupid stuff to people that belittles their struggle.

The many people whom I’ve said stupid stuff to showed kindness to me with gentle correction, or no correction at all, and I try to offer the same thing to those who unintentionally hurt me with their misunderstanding.

I also try to use everyday conversations, social media, and the novels I write to educate those around me about the struggles and successes of Connor’s journey with epilepsy. Connor’s special need is teaching my family to be kinder, more loving, and more inclusive of those who have bodies with different needs and abilities than our own. And we could all use more of that in our communities.

Stephanie Morrill lives in Overland Park, Kansas, with her husband and three kids. She is the author of The Lost Girl of Astor Street, The Reinvention of Skylar Hoyt series, Go Teen Writers: How to Turn Your First Draft Into a Published Book, and the Ellie Sweet series.