Susan Senator: Excerpt: Moving Beyond “You and Me Against the World”

Excerpt: Moving Beyond “You and Me Against the World”

…Unfortunately, it’s a common experience for most autism parents, at one time or another, to feel humiliated by strangers. Or, if it is not humiliation, then we might experience just plain lack of understanding. Paulette, who calls herself my twin sister in Alabama, told me of the challenges she faces going into public with her daughter Punkin. “Punkin and I have had some good experiences and some bad experiences. I really understand other autism parents when they say how proud they are just to be able to go places and it’s normal.

I am invited to go and see The Nutcracker ballet for Christmas. I have decided that Punkin will not be going. Everyone wants to know why I am not taking her when my best friend is taking her girls. I find myself getting defensive.” Paulette has a long memory of her experiences out in the world with Punkin, and it makes her think twice about going any- where with her, just like I still do with Nat. “This summer,” she said, “when it was just the two of us and the meltdowns were happening on a regular basis, I couldn’t get anybody to help me—but they are still quick to criticize my decision not to take her to the ballet.”

Paulette continues, “They just don’t know how much I would love to take her, but this is going to be a trip that I take just for me. Most of the time when we go places, I say, ‘This is for Punkin,’ and if I have to spend a little time in the restroom calming her down, it’s OK because I am doing it for her. But when we get up because she needs to go somewhere else to calm down, nobody gets up and says, ‘Do you need any help?’ Yet they still want to criticize.”

…Probably the most helpful happiness strategy for an autism parent is finding lifelines. Lifelines are the people in our lives, outside of our spouses or partners, who truly understand our children. Lifelines are the people who “get it,” as many autism parents say. You can leave your kid with a lifeline for a period of time—an hour, a weekend, it can vary—and you don’t have to worry about it. These are the folks who let us escape and rejuvenate. Lifelines help our children, too, because they provide them with bonding experiences beyond Mom and Dad and help them to develop more independence…