Loosening the Ties that Bind: Growing Up with Autism

April 2 is the seventh annual World Autism Awareness Day.  Organizations around the globe will raise funds and awareness for the condition that now affects 1 in 68 children and 1 in 42 boys.  This is a cause near to our hearts and Grown and Flown asked two mothers of grown children with autism to share their stories this week.

We have read Liane Kupferberg Carter for years and hope that her writing, below, will touch you, as it has both of us:

Liane Carter, autism, Autism Awareness Day

I don’t know how to do this.

There’s no book for taking the next step. No Fiske Guide to Colleges. No Barron’s. When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family.

There’s no book for our autistic son Mickey, who is turning twenty. No U.S. News and World Report ranking best vocational opportunities; no handbook rating residential programs for developmentally disabled young adults. We’re making it up as we go.

Graduation fever is spreading through Mickey’s class. Parents and students are itching to leave the security – and the restriction — of our public high school’s self-contained life skills class. Most are opting to send their children to residential programs far away. I’m feeling coerced into making decisions I’m not ready to make; I roil with fear and uncertainty.

Petitioning the state for legal guardianship of our own child before he turned 18 was heartbreaking. Getting him Supplemental Security Income and entering the labyrinth of federal bureaucracy was nightmarish. But this step – preparing to leave high school, and the world of what the government promises every disabled child, a “free and appropriate public education,” isn’t just unnerving. It’s terrifying.

Mickey too has caught the fever. He has been a twelfth grader for three years, and he is asking to leave. Loud and clear. “I’m not going back to high school next year. I don’t want another yearbook. I’m graduating.”

He has always loved his yearbooks, memorizing the name and face of every person in the building so that when he walks down the hall he can greet everyone by name. I have secretly ordered a yearbook for him. Just in case he changes his mind.

“Everyone is ready to go to college at a different time,” my husband Marc and I tell him.

“I’m going to college!” he insists.

Does he even know what college means? He knows his brother and cousins have gone; he sees classmates leaving. He understands college is the step that comes after high school. “What do you think you do at college?” I ask him.

“I don’t know.”

“Do you go to class?” I persist.

“I. Don’t. Know.”

Does he think it consists of eating out, hanging with friends and watching televised sports in the student union, as we did when we visited Jonathan? Or perhaps he views it as extended sleep-away camp?

“Can we look at colleges this week, Dad?” he persists.

“Sure, Mick,” Marc says. Later he tells me, “What do you think he’s expecting to see?”

“I don’t know that it’s anything specific,” I say. “I think this is his way of telling us he wants more freedom.”

We say, “College.” But it won’t be. He’s too cognitively challenged for that. “College” will be what we call whatever he does next.

Mickey is legally entitled to one more year. Parents of older children with disabilities advise us to keep him in school as long as we can. “Take whatever the public school system can still give you and hold them accountable,” one advises us. Another warns us that once a child turns 21 and exits school, services for disabled adults are abysmal. “In school you’re used to having people with master’s degrees working with your kid,” cautions another parent. “Once you leave school, you’re getting people making $10 an hour.”

“But they have high school degrees, right?” I ask.

She laughs ruefully. “If you’re lucky.”

Marc and I aren’t ready to take off the training wheels yet. “Residential placement seems so permanent,” Marc says. “Camp is one thing. Kids get really grubby there, but we always know we’re going to pick him up and clean him up again. His voice cracks as he asks, “Would you pack a six-year-old off to boarding school?”

But Day Hab sounds like a dismal option. The programs are funded by Medicaid. I’ve heard parents describe it as “glorified babysitting.” I think about the first special needs preschool class we ever visited. Seventeen years ago, and I can still see that impassive teacher who never left her chair or looked at us. How bored she’d looked. Is that what day hab offers? I picture a warehouse. Indifferent, untrained staff. Keep-busy activities. Coloring. Stringing beads. A room full of disabled adults, parked in front of a TV for hours.

Adolescence and the onset of epilepsy have made him emotionally labile. He can be belligerent when thwarted. Are these normal adolescent mood swings, or the harbinger of a seizure? We’re never sure. Anger and irritability can occur hours or even days before one strikes, like the hissing whistle of a sky-rocket before it explodes. We’ve learned how to manage him, knowing how quickly he can flare up and spin out to that angry place, and how difficult it is to reel him back. But the world isn’t going to tiptoe around Mickey. It is he who must learn to control his temper.

To this end, we enlist the aid of the school psychologist. “Mickey is intelligent,” he says. “He really has some insight into his behavior.” It makes me teary. No one else at our public high school has ever said my child is intelligent.

Intelligent despite the terrible standardized test scores; despite profound language deficits that even now cause him to mix up his verb tenses or use scripted speech; despite three sedating anti-epileptic drugs that dull him down. We no longer question whether he is innately intelligent. We know he is. We hear it in the observations he makes, in the questions he asks, in the way he cuts to the emotional core of things. After the death of a great-aunt, he tells us, “I feel so sad. All our people are disappearing.” When his class throws a party for him, he tells the teacher, “I feel loved.”

And he is. Even when he isn’t easy to be with, he is still lovable.

We have felt cushioned and cocooned by school the past sixteen years. We haven’t always been happy – in fact we’ve been profoundly angry at times. But being in school has meant that we’ve known where he is every day, and that he is safe.

And that’s the crux of our fears. We can’t keep him safe anymore. We know our son needs to be stretched and challenged. But the world isn’t safe. How will we protect him, when we are no longer there to absorb the blows?

Does Mickey realize that he will never be able to go out into the world unattended? Never ride a bus or train alone? He will never drive a car; epilepsy has seen to that. Living with seizures is like living with the threat of terrorism. You have to stay vigilant, because you could be struck anywhere, any time. A seizure leaves him so profoundly disoriented that he will walk into oncoming traffic. More than once I’ve cradled him in my arms after one of those episodes, only to have him ask me, “When are my parents coming to pick me up?”

Other parents look forward to their empty nests, to reconnecting as a couple. We have micro managed every hour of Mickey’s life for nearly 20 years. How do we ever shut off our dependency on his dependency?

Will we feel free? Or unmoored?

Then we get lucky. A space suddenly opens at an autism school half an hour from home that has a transition program. They will take him for his last year of formal schooling. They want him immediately. They will work on cooking. Laundry. Emailing. Office skills. Money management. Travel training. Our school district will bus him there. We describe it to Jonathan.

“Is this a marriage of convenience?” Jonathan asks.

“This is a good place,” Marc assures him. “And it buys us breathing room.”

We cross our collective fingers. Mickey glows when we tell him he has done so well at high school that he is graduating into a program that helps kids get ready for college. We make the switch.

After his first week in the new program, Mickey writes Marc an email.

Dear dad

Yesterday I went to gym and do volleyball. Then I went for a walk.

Then I worked on the computer. I feel great about my new class

Love

Mickey

When a baby is born, someone cuts the umbilical cord for you. How can we possibly loosen the thousands of threads that bind him to us? It’s an endless unraveling, this process of letting go.

But we must. And we will figure out what comes next. We will do this just as we have done everything else these past twenty years. Pulling together as a family.

 

Liane Kupferberg Carter, autism

Liane Kupferberg Carter is the mother of two adult sons, one of whom has autism. She is a journalist whose articles and essays have appeared in many publications, including the New York Times parenting blog Motherlode, the Chicago Tribune, the Huffington PostParentsSkirt!BabbleLiterary Mama and Better After 50. She writes a monthly column for Autism After 16.

Follow Liane on Twitter.

 



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Comments

  1. Touching and beautiful. A close friend’s son has schizophrenia and I learned up close and personal how difficult it is for bright young men to understand their limitations. Ah. So sorry.
    Carol Cassara recently posted..Respect living thingsMy Profile

    • Liane says:

      Carol, thank you for commenting. I try to think of those “limitations” as “challenges.”

  2. Carpool Goddess says:

    I’m so glad you found a wonderful program for Micky. It sounds like the perfect transition place for him. Thank you for sharing your moving story.
    Carpool Goddess recently posted..My New Year’s Resolution? Talk on the phoneMy Profile

    • Liane says:

      Thanks, Carpool Goddess. I’m happy to report that the transition program was the right choice for us.

  3. Beautiful and Touching.
    Connie McLeod recently posted..Sunrise, SunsetMy Profile

  4. Mickey is so lucky to have you as parents. You are doing a magnificent job raising him. He is so loved by all.

    • Liane says:

      Beverly, as you know well, he returns that love a thousandfold to all of us :-)

  5. “There’s no book for our autistic son Mickey, who is turning twenty. No U.S. News and World Report ranking best vocational opportunities; no handbook rating residential programs for developmentally disabled young adults. ”
    So Liane, in your spare time, would you do the rest of us a great service and create a rating system for adult programs? Yes? Wow, thanks!

    • Liane says:

      Marjorie, I’ll do it if you’ll co-author it with me :-)

  6. Katie says:

    Wow, exactly how I feel.

    One point to clarify- by Federal law – IEP’s ( individual education plans) go through age 21 not to age 21. That extra year can mean a lot.

    You are lucky you can make decisions as a family , as a divorced single mom I have to make these decisions alone. And worry when I die who will take over my son’ s care.

    • Liane says:

      Katie, thanks for bringing up that point. In our case, it only goes to age 21 because our son has a summer birthday. If his birthday had fallen in September, he would have been eligible to remain in school until his 22nd birthday.

  7. Ellen Cohen says:

    Touching and elegant. Your writing never fails to make me smile or bring tears to my eyes… Thank you for sharing such a personal experience with us!

    • Diane Burns says:

      Hi Liane – a friend in Tulsa just forwarded your post. Amazing how similar our paths have been. My Jonathan, 20 sounds much like your son. I will tell you that we let him graduate from high school with his class (he didn’t really have friends so there was no attachement) and after a quick drive around the community college near home (we didn’t get out) he said he would go there. He enrolled for 2 classes. He has taken a class every semester since then. Now one at a time. He dropped out of one, almost failed another, and I have no idea what he’s making in this accoutning class but I really don’t care. He wants to try. A small job at a near by dance studio (6 hours/wk) are all he really wants. Like you, I have no idea what the future holds, but I’m always surprised when Jonathan has already thot about it and has a plan. Best of luck to you as we grow up together with our sons. Diane

      • Liane says:

        Diane, it sounds as if your son is well on his way. It’s so important that he wants to try. I think success is ultimately about resilience. Best of luck to you too.

    • Liane says:

      Ellen, thanks for such kind words!

  8. Beautiful piece, Liane. Ryan is still in kindergarten, but I know the years will fly by and I’ll be where you are now with Mickey. I hope you can find a good vocational program for him. There should be more out there for our kids.

    • Liane says:

      Janet, chances are that by the time Ryan is ready to graduate, there will be more vocational programs available, because the need is just so great.

  9. Thank you for this. From the outside looking in what you’ve done for Mickey appears heroic and completely selfless. I can only imagine how tightly all those threads must pull you and your husband to your son. What luck he has you for parents.
    Sharon Greenthal recently posted..What it’s Like to Be in an EarthquakeMy Profile

    • Liane says:

      Sharon, thank you for such kind words. I don’t think of it is as heroic. We’re just parenting, doing what needs to be done.

  10. Rita Kreisberg says:

    Beautifully written and so very real. Eveery parent with a special child should read this. Good luck on whatever is your choice. Rita K.

  11. What a moving story. I wish this family the best.
    Korinthia Klein recently posted..No Foolin’My Profile

    • Liane says:

      Thanks for your good wishes, Korinthia.

  12. Leslie G. says:

    Thoughtful, moving & sometimes painful piece. Liane conveys the difficult choices she & her husband face. Having read many of her essays over the years, I feel they’re deserving of a book.

    • Liane says:

      Thanks so much, Leslie. I’m working on it!

Trackbacks

  1. […] autism to share their stories this week. On Monday  we featured Liane Kupferberg Carter’s writing and today, we are honored that Susan Berger, author of the blog, Berger’s Blather offers […]