Mac & Cheese & Special Needs

"Sometimes society's limitations on my daughter include my own."

Crystal Kupper is the Grand Prize winner in the first annual Let Grow Independence Challenge Parent Essay Contest. We asked parents to send us short essays about how they got themselves to let go and give their kids the chance to do something new, on their own — and what happened when they did. Crystal’s prize was $100 (and a new chef in the kitchen). We will be featuring more parent essays on Thursdays to come!

BY CRYSTAL KUPPER

“Mom, can I make my own mac and cheese?” my daughter asked me.

I looked down at her eyes shining with anticipation. All the practical reasons jumped out at me why I should say no. But then I remembered how far Guyana has come since she took our last name, and I reconsidered.

Six years ago, we adopted Guyana from an Armenian orphanage where she had spent the first five years of her life. It was an institution for those with extreme special needs. Most of the kids there could not talk or walk. With her spina bifida and half-dozen other high-needs diagnoses, Guyana certainly fit in. Believe it or not, she’d never actually seen a child walk before. She though people didn’t start walking till they were adults!

10 surgeries later…

But within the first year of family life, we realized Guyana was special in other ways, too. She had a will of steel, an intense drive to learn, and a heart filled with an endless capacity for love and growth. She soon learned English, got hearing aids, had 10 surgeries all over her body, began using a wheelchair, and started going to school.

She blossomed. Even so, she was miles behind other neighborhood kids, including how much help she needed with very basic tasks.

My husband and I resolved to catch her up as much as possible. We made her crawl up the stairs and into bed on her own, strap herself into her car seat, get herself dressed and feed herself. It paid off. But now ― what about more dangerous things, like cooking?

She could get a burn and not feel it.

Using a stove while in a pediatric wheelchair isn’t the easiest thing, for starters. She could burn herself and not even know it, if one of her paralyzed limbs got stuck — her legs have no feeling. The milk was too heavy for her to grab by herself from the fridge. And on and on…

But then, prompted by Let Grow, I said yes.

To my minor shock, Guyana figured out all the issues I was worried about. She parked her wheelchair and angled two cupboard doors to keep her in place. Then she stood up on her wheelchair (she uses her braces to lock into a standing position), and grabbed the wooden spoon. Her service dog helped her when she dropped the box of mac. She enlisted a sibling to fill up the pot with water and bring it over to the stovetop.

Maybe I was the one who needed to grow.

From there, she expertly flicked on the burner, poured the elbow noodles in, set the microwave timer, stirred occasionally, measured the butter, and added the cheese powder at the right time.

Another sibling helped her drain the noodles, since she couldn’t wheel over to the sink with a hot pot in her lap. But other than that, it was all her. All. Her.

Kids in wheelchairs can learn and grow, too. I just needed the reminder that society’s limitations on my daughter sometimes include my own.

By the way — mac and cheese never tasted as good as it did when Guyana made it.

Read more about Let Grow & special needs here and here and here and here.