Personhood

Annie is really, really cute. And cuddly. She loves Rudolph the Red-Nosed Reindeer, Pokemon, and she sleeps with about two million stuffed animals. Her innocence is charming. Everything about her sweet and unjaded way of looking at the world fills me with joy. Her bubble is a lovely place to live. Sadly, the bubble also makes Annie very easy to infantilize. But the truth is that Annie will be a legal adult in two years. Two years. That thought brings panic and it brings tears to my eyes. Because Annie is, in no way, an adult.

Most parents of special needs kids know this sense of dread. Our kids are going to be adults in a world that is not a gentle place. Couple this with the fact that none of us are immortal, and we are facing a very scary truth: Our kids aren’t ready.

The idea of independence exists on a sliding scale for challenged kids. Some kids will be able to live independently, successfully, with minimal support. Some will require full-time support for their entire lives. Annie falls somewhere in the middle. There are many things she will be able to do for herself, and I am determined that she will have the tools to do them. Because Annie is cute, and Annie needs help, but more important than anything else is this: Annie is a person. Our kids are people. They have wants and needs and dreams. They have preferences, they have dislikes. And they have capabilities.

When I work with parents, we often look at checklists to determine what kids can, and can’t yet, do. Over and over parents will tell me their kids can’t do a thing, but when I ask if they’ve tried, I get blank looks. Here’s the challenge: I bet you they can. It may not look the way you’d like it to, it may not be how you would do it, but I bet you they can do these things given modification, practice, and encouragement.

My mom’s youngest brother, Breen, had Down Syndrome. My grandmother, against all 1960’s wisdom, taught him to read, to write, to keep himself and his living space tidy. He loved baseball, and Star Trek. As an adult, Breen had a job, girlfriend(s), and was active in his church. He couldn’t drive, but he could learn to use a bus pass. There were concerns about Breen using a stove, but he could certainly use a microwave. I wrote him a cookbook. Step by step instructions that allowed him to prepare his own microwaved meals, in his own apartment.

There is no end to the confidence that builds when a person can do something for themselves. Pride in accomplishment and the lack of dependency leads to self-assurance. From there, it’s an upward spiral toward ability.

Independence is achieved one microwave cookbook at a time.

“All your life, other people will try to take your accomplishments away from you. Don’t you take it away from yourself.”

– Michael Crichton

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