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Guest Blog: Clothes Make the Man

January 6th, 2015

Liane Kupferberg CarterOur guest blogger this week is Liane Kupferberg Carter, Writer, Journalist, and Autism Advocate.

(Originally published on Autism After 16)

It’s 51 degrees out. Which means my 21-year-old son Mickey is wearing shorts and sandals.

“It’s too cold!” I protest.

“But it’s May.” Well, yes.

I get it. He hates socks. Loathes sneakers. Long sleeves drive him crazy. If we let him, he’d leave the house wearing shorts and sandals in January, and probably without a coat. Winter weather doesn’t deter him. Which has turned me into the kind of mother who says, “I’m cold so you have to wear a sweater.”

I remember battling my own mother, who forced me to wear skirts with scratchy crinolines (yes, I’m that old.) Is that what it’s like for Mickey when we ask him to wear clothes that itch or cling or rub, or bother him in ways we don’t even know, because he can’t parse the particulars of his discomfort? “Because I hate it,” he says.

I know how miserable I feel wearing Spanx. Is that how he feels about dress pants with a belt? Loafers? A blazer? Worst of all—a dreaded tie? “I want regular clothes,” he says.

I respect his sensory issues. I want to honor his right to choose what he wears. Unfortunately, there are just some circumstances where you can’t wear what you want, and it’s not only due to weather. Sometimes respecting his right to choose smacks up against the need to dress appropriately, whether it’s a volunteer job, visiting a house of worship, going on an interview, or hiking with his day hab group. It’s dangerous to climb a mountain in sandals, and disrespectful to go to synagogue in a t-shirt and shorts.

“Just for today,” he pleads. “I’ll be careful.”

Why am I making a big deal about shorts and sandals? Am I worried someone will say, “How can you let him go out that way?” and judge me as a bad parent? Yes, it’s chilly, but he’s not going to die of exposure if he goes out underdressed for this weather. Maybe if he does realize it’s cold or wet and he’s not as comfortable as he thought he’d be, he will learn from it, and next time wear something more suitable.

Or not.

I try not to intervene with his choices unless health or safety is at stake. I may say, “What do you think your friends will be wearing today?” or “I don’t think those colors match,” but I won’t stop him if he’s really set on the combination. It’s a fine line between encouraging self-expression, and letting him leave the house wearing clothes that may make him an object of teasing or ridicule.

Haven’t I made similarly inappropriate choices? Worn high heels out of vanity, when I should have opted for more comfortable or practical footwear? Shivered in a thin summer dress I wanted to show off, instead of wearing something more sensible?

Mickey is a young adult now. He is chafing against our restraints. His struggle to pull away from us is developmentally appropriate. The business of adolescence and young adulthood is to separate from your parents, to find your own way in the world. Part of growing up for anyone is learning to make—and live with—one’s own choices.

He starts out the door in shorts and sandals, then goes back to his room. When he emerges, I see he has added a baseball cap and sunglasses. “I’m going to sunbathe today,” he says.

“Pack a sweatshirt,” I say. He doesn’t.

“I look handsome,” he says.

“Very cool,” I agree. And resolve to say nothing more.

Because it’s his choice to make. This isn’t about autism.

It’s about autonomy.


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Guest Blog: Notes From a Not-So-Empty Nester

November 6th, 2014

Liane Kupferberg CarterOur guest blogger this week is Liane Kupferberg Carter, Writer, Journalist, and Autism Advocate.

(Originally published by The Chicago Tribune)


Maybe it’s just this time of year making me pensive. Summer is ending. Kids are leaving for college. Social media are crammed with articles and advice on how to weather the seismic family shift: “Get Your Heart and Mind Ready.” “Loosen the Times That Bind.” “How to Navigate What Comes Next.”

My autistic son, Mickey, has finished high school. In our state, a developmentally disabled child “exits” the school system at 21. They call it “exiting” — not “graduating.” He has “transitioned” — to a Byzantine, chronically underfunded system of government services for disabled adults. Mickey hasn’t graduated, exactly. Neither have I.

This point was recently driven home when a woman in our neighborhood emailed us an invitation to a barbecue for a club she was starting for “empty nesters.” I get it. When our older son, Jonathan, left for college, it felt like a rift in the family fabric. Mickey, then 14, summed it up when he asked, “My brother doesn’t live here anymore? Are we divorced?”

My husband, Marc, and I inhabit a peculiar no man’s land. Our children are grown, but we are not empty nesters. The realization that we will in all likelihood never be empty nesters is a sadness all its own.

For the past two years I’ve been a member of an invitation-only Facebook group of middle-aged female writers. My fellow midlifers are prolific bloggers. They lament their empty nests, but mostly they write with excitement and joy about rediscovering themselves. They celebrate their newfound freedom to travel, return to the workplace, new hobbies or new passions. Initially the group was called Generation Fabulous: The Women of Midlife.
I don’t feel fabulous.

Maybe it was the woman who last week posted a picture of herself poolside in Hawaii. It wasn’t a self-portrait. It was a photo of her manicured toes. Next to a glass of red wine. Beside a bowl of chocolate-covered cherries. Yes, she styled that self-satisfied photo herself. Yes, I’ve read the study that says Facebook makes people discontented because everyone else seems to live a perfect life. And, yes, I know that people curate what they post. They share their highlight reels. Those chocolate-covered cherries did me in anyway.

I’m embarrassed to admit how much I envy these women. I’m not scaling Machu Picchu, sailing the Galapagos or climbing Kilimanjaro. I’m not “finding” myself. I’m right here. Where I have always been.

I can stand far enough back to hear how whiny I sound. Which makes me feel ashamed. Especially when I know how much ease and comfort I still manage to enjoy. My marriage is strong. Jonathan is thriving. I get paid to blog. I’ve just finished writing a memoir. To complain about something I imagine I’m missing in my life is, as Jonathan would put it, a “first-world problem.”

This past spring I got an invitation from the high school to a workshop on “helping your child survive freshman year at college away from the safe nest of home.” I realized how little I have in common anymore with most of the parents in our community. I miss the easy connections I made with other mothers when all of us were knee-deep in raising children. In the months since Mickey “exited,” I’ve come to realize how much of our social life was based on shared school activities or milestones. Sports. Religious school. Sleep-away camp. Most of those situational friendships have drifted away. Maybe they were never true friendships, but I still miss them. Occasionally empty-nest friends call us last minute for dinner and a movie. They forget that for us, any activity first and foremost involves finding a sitter for our 21-year-old son.

Parents like me buck the baby boomer’s empty-nest trend. What will our “reinvention,” our second acts, look like? According to a 2013 study in the journal Autism, young adults with a diagnosis of Autism Spectrum Disorder are more likely to live with their parents compared with those with other types of disabilities. They are the group least likely to live independently after high school. Lisa Goring, vice president of family services at Autism Speaks, confirms this, telling me, “Approximately 80 percent of adults with autism up to 30 years old live at home.”

Mickey isn’t ready to live somewhere else. Neither are we. Will we ever be? At some point I know that moving out will be in his best interest. I’ve heard too many horror stories about disabled adults who live with aging parents until a health crisis — often the death of the last parent — catapults the grieving, grown child into the state system. A state that must then scramble to place him anywhere it can find, whether the fit is good or not.

Marc and I know we will need to make hard choices. Just not yet. Mickey is going to live with us for a long, long time, until the day we can’t do this any longer. Then we will have to find a safe group home for him. A thought so painful I cannot breathe.

My friend Elaine calls. She has a developmentally disabled son too. We met in a speech therapist’s office nearly 20 years ago. We speak a special shorthand. I tell her I’ve been feeling blue. I confess my mean and ugly thoughts. “I get it,” she says, over and over. It feels like lancing a boil. Painful relief to let out the poison.

“No one who hasn’t lived this really knows what it’s like,” she says.
“That’s true about everything,” I say. “When you had cancer, I was sympathetic and scared for you. But did I really, truly know how you felt? Of course not.”

Of course not.

You can’t completely understand what you haven’t experienced firsthand. That, I suddenly realize, is the point. Everyone has something. A parent with dementia. A child with mental health problems. A sick spouse. In the end, grief finds us all.

“If you put everyone’s worries in a pile in the middle of the room and said, ‘Choose,’ each of us would probably take back our own bundle,” Elaine points out.

“True,” I concede. “Who was it who said, ‘Comparison is the thief of joy?'”
Probably someone with a special needs child.


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