CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

By Liane Kupferberg Carter
Reprinted with permission 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.

 

 

CURE For questions, please contact the CURE office, 312.255.1801, or email info@cureepilepsy.org.

CURE Epilepsy
Related:     Take Action  
Andrew's Story

Andrew's Story

Read More

Chris's Story

Chris's Story

Read More

Rebecca's Story

Rebecca's Story

Read More

CURE epilepsy
Donate

Every Dollar Counts

Donate

So Many Ways You Can Help

 


Roll Call
See Roll Callís article about the increase in epilepsy in returning troops and the recent Department of Defense Appropriations.
Click Here >

CURE is driven
Grant Recipients