I have a set of those cheap paper cocktail napkins that always gets a laugh. Two women are in a 1950s-era kitchen staring at a souffl’ in an open oven. They wear lipstick around their white teeth and they are dressed in skirts and pearls. One of them is wearing an apron. The word bubble over her tight smile says, “Funny : I don’t recall asking for your opinion.”
Apron Girl is my hero. Here’s why. When you live with a child with autism you have to learn to let go of many things. Maybe the most important thing you learn to let go of is other people’s expectations of how you should live your life.
In 2008, my handsome 21-year-old son was all geared up to vote in his first presidential election. David is also autistic. We got to the polls early that cold November morning, excited to see the campaign workers handing out sample ballots and stickers with their candidate’s names on them. David accepted whatever political buckshot was thrust into his hands and it was all I could do to keep my mouth shut not to tell him who to vote for. I like the idea of his participation in a larger community, because it takes all kinds. After all, the ability to vote in America is a right, not a privilege. It’s the individual right that gives meaning to all other rights. And as long as he does not act on this right to vote for whomever he chooses, others will make up his mind for him.
This is when I noticed one of my neighbors staring sideways at David. She tilted her head in his direction and asked, “Is he voting?” “Yep,” said my husband, fixing her with a scowl. “That’s why we’re standing here.” The neighbor turned her back on us and made a little humph noise.
It seems like every new adventure with David offers us a chance to see the best and worst in people, and too many seem to think differently abled folks should accept a lesser life. For example, the elementary teacher who once said he sat in class “like a vegetable” or the high schoolers who called him “Special Ed.” It’s an ongoing battle against subtle slights, but sometimes you have to push back a little on those who think they own the blueprint for what it means to be human.
Otherwise I’d be compelled to walk over there and give my neighbor a good choking. So it was a nice surprise on this election morning when the white-haired gentleman checking voter registration cards called out David’s name. The older man stared hard at the thin fellow across the desk from him. He seemed to be searching David’s wiggly face for something.
“Ah – got it,” he said. “You wouldn’t be Max Finland’s little brother now, would you?” David nodded his head three, then four times. “Yes. Yes, I would.” “Tell Max his old history teacher sends his love, will you?” I watched the tension in David’s shoulders drop like a load of books, and I realized kindheartedness can be just as subtle yet every bit as empowering as prejudice.
As the parent of an autistic child, here’s what I’ve come to believe: too often we allow ourselves to be penned in by other people’s expectations – what sort of therapy is needed, what medicines work, or what form of discipline should be used for a child with autism. The pressure from Outsiders is enough to make you crazy, because if people don’t live and breathe what it’s like to be a special-needs parent, 24-7, year after year, they don’t get it the same way we do. How could they?
I’ve learned to step around those folks or roll right over them, and do whatever it takes to find a way in to the child down the hall who trusts you more than anybody else in the whole wide world. Don’t be afraid to disappoint people, even close friends and family members who tell you how to raise this peculiar child of yours. Don’t let guilt or self-doubt or be your guide. Do the research: talk to doctors, teachers, and other parents, and then go hug your child. Somewhere in all that talk and bureaucratic gobbledygook, you will find the best way to raise your particularly unique snowflake.
Raising an autistic child is a daunting task, no matter how you decide to make it work in your house. It takes a lot of maturity to parent a child with special needs; someone always has to be the adult. Because of my husband’s travel and work schedule, the endless paperwork and medical visits usually fell to me. Still, it felt like teamwork because Bruce did everything he could to support me in my role as David’s primary caretaker – including letting me take a little time off.
Many, many years ago, my husband, Bruce, and I both agreed I needed to take some time away for a refresher course on how it felt to be plain old Me again. I needed a good night’s rest and an uninterrupted meal. I needed to read until I fell asleep and, in the morning, I needed to drink my coffee without having to wipe anyone’s nose with my napkin. So we made a pact: once a year, I would take a separate vacation, by myself. I wouldn’t need to ask permission from anyone. I would simply step outside my box as the mother of an autistic boy and two older sons and go be anonymous Me.
“Just go,” my husband always said.
At first it was a visit to my mother. Then it was a seven-day bike trip from Amsterdam to Paris in the rain, a fundraiser for AIDS research. Another time I borrowed a friend’s cabin deep in the Shenandoah Valley to go fishing. During a particularly crazy-making stretch of our three sons’ teenaged years, I booked an overnight in a hotel room less than two miles from our house. Through all of these respites, I didn’t send postcards. I didn’t tell my closest friend I was leaving town. I don’t recall ever asking for anybody’s opinion.
Selfish, you say? Completely and without reservation. And it’s probably the best thing I ever did for my family. Mired in the sheer eternalness of raising a son with autism, my husband and I have been charged with being the best stewards we can be for all three of our sons. Just knowing I could open the window onto my old self and still – still! – want to return to my crazy, wonderful life helped hold our quirky family together. A happier mom always makes for happier kids.
So don’t be afraid to make the choices that address your own needs – take a breather, figure it out, and don’t feel guilty. Because here you are. Still.
You just go, girl.