ASPIRATIONS: Parenting Newsletter 1

Linda lives with her adult son with ASD in Pennsylvania, USA. She has a blog, is an author, and works with at-risk students in college and in high school. Linda got in touch recently about the possibility of joining our team, and with her experiences and writing skills I leapt at it. In her articles she’ll be offering her ideas on how to support your son or daughter with Asperger’s as an adult.-Dave Angel

ADULTS ON THE SPECTRUM

By Linda Cobourn, EdD

I sat in the sea-foam green waiting room, at least 1 ½ hours of forced inactivity looming ahead of me. I hadn't expected that the first appointment with the psychologist from Occupational Vocational Rehabilitation would be so long. Now I waited for my son, who sat with Dr. Puelo on the other side of the door.

I thought of Allen and the years of struggling at school and being bullied, of his quirks and his ideas and his spirit. It had taken four months for us to get to this appointment.  I hoped that OVR would be able to help Allen, 23 years old, with job training and mentoring. Immersed in my thoughts, I remembered a book I’d read about a slightly quirky protagonist who was socially awkward, liked to solve puzzles, and was unsettled by crowds and loud noises. Someone just like Allen who claims the noises from a turned off television bother his ears and who draws intricate mazes on kitchen napkins. The jigsaw of my son suddenly made sense.  I knew what Dr. Puelo was finding out. I knew what I had always known but had never put a name to.

Asperger’s Syndrome. 

Allen is not alone in  his adult diagnosis. According to Advancing Futures for Adults with Autism (2017), 1.5 million people in the United States are on the spectrum, but only 10% of the resources are given to help for adults. That leaves those of us who parent ASD young adults  to find our own methods and resources.

And we do. Websites like AutismSpeaks.org provide links to helpful research and resources.  The Interactive Autism Community site provides tips from getting a driver’s license to deciding when to disclose a diagnosis to an employer. On-line forums and groups help us deflect the sense of isolation. 

Allen’s diagnosis was four years ago. In that time I have discovered the most important tool in aiding my son to live an adult life: me. In the coming issues of this newsletter, I’ll share with you some of the ways I have helped Allen to find a therapist, graduate college, get and keep a job, and adjust to life as an “Aspie.”

Linda Cobourn is an education specialist in the United States. You can follow her blog and find her  books at Linda.cobourn.com.

http://www.aspirationsnewsletter.com/

One Last Gift

4 ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”
Revelation 21:4

It's been four months. Exactly four months. The memory of that night will, I think, never fade. Bonnie and I walking into the house to see Ron sitting in his chair, sleeping. The call to 911. The house full of EMT's and police. Bonnie's phone call to her husband and her brother. My calls to my Dad, my brother, Ron's brother and mom. My call to my best friend Chris.The breath caught in my throat as the EMT's tried to revive Ron. The tears that choked me when my husband was pronounced dead. Allen, who lives on the upper edges of the autism spectrum, holding an ice cube in each hand to keep himself centered. The older kids gathered on the back deck, arms around each other.

We'd known the moment would come. But not this soon.

Four months. I've moved through 123 days now, taking care of final arrangements, dealing with insurance and medical equipment. I've been beside Allen as he used magical thinking to come to terms with the sudden death of his father. I've been there for the older kids and let them talk when they needed to, cry when they had to. I've tried to be a support to Ron's mother. I've gone back to work as an ESL teacher in an urban high school. I've paid bills and kept house and found a way to manage without Ron's social security income. I've picked out a grave marker. I've stopped waking up at night to check on Ron, who slept downstairs in a hospital bed for the last nine months. I've rearranged the living room, pushed my queen size bed to a corner of my bedroom. I've moved on. A little, anyway.

But the 13th of every month throws me back to that night 123 days ago, that night when I came
home to find Ron had, quietly and without fanfare, slipped away. I keep the tears at bay by keeping busy, teaching my students how to construct a sentence in English, working with the kids at church, playing Rack-o with Allen.

Plain and simple, I miss Ron's presence. Not his illness or the nursing tasks that fell to me. Just,
well, him.

I feel no guilt at his death. I know the truth of what my oldest son, Dennis, said to me the night his father died. "Mom, you sacrificed your life for Dad. No one could have done more than you did." In that truth there is some consolation. Despite the challenges of the last 19 years, Ron knew he was loved.

But still, the 13th of each month--and every month has one--looms. A hard day to get through. So far, there have been four of them, different from the other 119 days in their sharpness, the details of his final day imprinted in my brain.

In the early hours of today, November 13, the fourth of the 13's I've lived without Ron, I was given a gift. In the early morning hours, when I was poised between sleep and wake, huddled beneath my blankets in the knitted shawl I call my Widow's Wrap, the door to my bedroom opened. Ron walked it. Actually, he strode in. Not the Ron who 123 days ago fell asleep in his easy chair and woke up in Heaven. Not the Ron who suffered through 26 surgeries. But the Ron whose pictures sit on the shelf in the dining room, smiling at me as I wrote this blog. The well Ron, The whole Ron.

"Don't wake me up," I told him. "I don't need to get up until the alarm goes off."

He walked over to the bed and gently lowered himself to the mattress. "I didn't come to wake you up," he said. He laid down next to me and put his arms around me, warming me the way my Widow's Wrap had during the cold night. "I just came to tell you that I'm okay. I wanted you to know that."

I think he stayed for a while, until the alarm went off and I found my wrap pulled up around my shoulders.

Maybe I was dreaming. And maybe not. Perhaps it doesn't matter.

What matters is this: Ron, sick for so long, is now okay.

And I guess that means I can be okay, too.

FINDING DAD

1 Corinthians 2:9 But, as it is written, “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him."

The grass is beginning to grow and cover the earth. Beneath it, a few feet down, is my husband's casket. Only a flag and its holder, placed there three weeks ago, marks the spot. It is time, I tell myself, to order the grave marker, another step on my widow's walk.

I've asked the kids their opinions. Dennis had none, just names and dates. Bonnie wants John 3:16, Ron's favorite verse, and an eagle for Ron's favorite team. Allen, whose presence on the autism spectrum has made his father's death a difficult concept to grasp, has refused to respond. 

But that was three weeks ago. Allen and I have had a good--but busy--day. With a school holiday courtesy of All Saints Day, we have managed to make our way through a long list of errands. Allen even got his hair cut, a task that was daunting back in June but which he now takes in stride. He even accepted a different barber, telling Rachel how he wanted his hair cut and politely shaking her hand
and thanking her when she was done. 

We are driving past Long Croft Cemetery, our trunk full of groceries, the last of our errands completed. Allen, who finds social interactions taxing, is already half-asleep in the passenger seat. But it's been a good day--such a good day--and I feel I can push him just a little more.

"I'm going to order Dad's grave marker on Monday," I say and motion to the cemetery.

"I'm not coming," he murmurs. There is a sigh and a pause. "Why do people do that."

"Do what?"

"Put--you know--markers on people's graves. What's the point?"

Those on the ASD spectrum tend to think in terms of absolutes. What would be a concrete reason I can give? "Well," I say, "I think it's so families can find where their loved one is buried. So they can bring flowers. So they know where they are." I push a little more. "So we'll know where Dad is."

"Dad's not there," Allen says quietly. "Just his old, broken body is there."

I feel a lump in my throat. The fine art of magical thinking has convinced Allen that his father would come back if only he found the right formula. For thirteen weeks after Ron's death, Allen and I spent every Saturday hunting for clues, looking for Ron. We visited Linvilla Orchards and found the strongest horse, sprinkling a few hairs from Ron's brush along the path. We located the tallest tree at Rosetree Park, wrapping a ribbon around its trunk. We explored the oldest bridge at Smedley Park, leaving one of his father's shirts behind. Marking spots where Ron might return. We waited at the station for a train that never came and for two weeks used Google Earth to track the route of a ship on the Delaware with a mysterious symbol that, said Allen, "meant something."

Allen didn't find his father, but he found a way to the other side of his grief. Two weeks ago, the magical journeys ceased. Allen said he was transferring his "sad memories" about his father's last, painful year into his newest and strongest sword. He was done, he said, looking for Dad.

And it seems to have worked. In the last two weeks, any conversation about Ron has been happy: the way he loved to play board games but always cheated, his booming laugh and warm hugs, his crazy dance movements known in the family as "doing the Ronnie."

Autism grief is not neuro-typical grief. Allen has needed time to figure it out. I have tried to be wise enough to let him. We seemed to have arrived at a good place. But it's been a good day, a really good day, so I venture one more question.

"If Dad's not at the cemetery and he's not on the boat and he's not on the train, where is he?"

Autism grief is not neuro-typical grief. But with enough time, enough magic, enough faith, and enough love, we can all find what we need.

My son looks at me with tears in his eyes. "Well," he says, "sometimes I like to pretend he's across the street at the firehouse, talking to the guys. Because that helps me. But," and he lets a few tears fall, "I know he's in heaven. And I know he's okay."

And Allen, too, will be okay.