Autism Grandparents: Rising to the Occasion

Shannon Johnson is the proud mom to 14-year-old Wynn, who has autism, and Haley, his amazing 12-year-old sister. Shannon and her husband, Steve, co-founded an online social network for the autism community called Foggyrock.com, of which Shannon is the editor. They also created a free web-based communication tool for parents and providers called iAbida.com.  Shannon loves meeting autism pioneers, advocates, and experts during her stints as a co-host for Autismpodcast.org. Wynn’s Nana, Nancy Cale, co-founded Unlockingautism.org and reaches out to help others in honor of her grandson every day.

I’ll never forget that night, that bookstore. It was late, the kids were sleeping, and my husband had begged me to get out of the house. Near the café in the back of Bookland, I sat alone and opened a book to the chapter on the signs and symptoms of autism. Of the 16 listed descriptions, my three-year-old son nailed 14 to the wall. His photo – buzzed haircut and baby teeth – should have been on the cover of the book. Nausea overcame me and I rushed, dizzy and dazed, to the parking lot, to my husband, to my bed. If my son, Wynn, had disappeared that night, the veil that shrouded me could not have been darker. I sensed that life had taken an unwanted turn and would never be the same.

Steve, brave and strong, pulled me close as I cried, literally, all night long. We were still intertwined when the sun, miraculously, rose the next day. I found it amazing and cruel how the earth still rotates among the shards of broken dreams and shattered hope. Gravity had shifted, however, and I was heavy in a way that left me short of breath. “I can’t get out of bed – I just can’t begin this day,” I cried to my husband. My babies, ages one and three, needed me, but I couldn’t even lift my head off of my pillow. Sleep seemed like the only remedy. Maybe this was all just a terrible, horrible dream. I pulled the covers over my head and begged the sun to leave me alone, to shine some other day.

When I was finally able to emerge from my cave that day, the house was silent. Steve had called his mother to come pick up the kids while I mourned alone in my bedroom. She would feed them and read to them and rock them for their naps. They would be safe and content while I attempted to wash away my grief with a hot shower.

One phone call to Georgia from our home in Maine, and my mother and sister were on the road. They brought my nephew, baby Tate, who ran with my kids on the beach, ate sandy snacks together on a blanket, and took bubble baths in one big tub. I compared Wynn, for the first time, with his typically developing cousin and went to a sad place in my soul that I didn’t know existed. All those milestones, beautiful and elusive, came so naturally to Tate but were so foreign to my boy. I tried to be glad and grateful for my sister and her son – ordered it from myself. I dug deep to find a love for my boy that was bigger than any disability, any deficit. That alone, it seemed, took all of my strength.

In the following weeks, I buried myself in every book I could find about autism, about hope. I searched the Internet for anything that might give me the tools to teach my son, to reach the part of him that was spending more and more time alone lining up cars in the corner. I made appointments, bought software, learned acronyms like ABA, IEP, and PDD. I spent money we didn’t have and borrowed energy from the desperation that hovered over me. I hardly ate and barely slept. When I finally crashed from worry and exhaustion, my parents and my husband’s parents were there, again, to surround my needy nest.

My daughter, not even two, began to spend weekdays at my mother-in-law’s house. Each morning, Grandma picked her up early so that I could start working with Wynn, across our new wooden table and in primary-colored chairs, on all those skills he had recently lost. I have photos of my little Haley climbing out of Grandma’s dryer and sneaking in Grandma’s pantry dressed only in silk scarves and a diaper. While I chased my fading son, my daughter played dolls and sucked her thumb, fully immersed in her childhood at Grandma’s house.

My phone rang and rang. Mostly, I couldn’t answer it, couldn’t muster the strength to hide my worry and exhaustion. So, instead, I listened to the voice messages from family and friends who promised to pray, to help out, to call again soon. In the mail, I opened packages from my dad and stepmom, each containing something thoughtful for Wynn. I showed Wynn the talking bank, the singing books, the lion puppet, and tucked away the sweet notes and sentimental pep talks in my dad’s cursive handwriting.

My loving Gran sent Hallmark cards with crisp ten dollar bills for the kids. When I called to say “thank you,” she told me stories of her own sick babies with fever and asthma, allergies and croup, and about rocking them all night long and being afraid to leave them alone while they slept. She embraced me with her empathy, the poems in her cards, and her tenderhearted phone calls.

Norman, my stepdad, offered to do whatever we needed. Was there somewhere we needed to take Wynn? Was there some piece of equipment, some toy? He was generous and sincere, and he still is all these years later.

I think my mom’s heart broke twice. Her oldest daughter was a wreck and her first grandson was regressing by the day. Living halfway across the U.S. didn’t prevent her from supporting us in any way she could. Once a month, for years, she flew from Atlanta into our tiny airport, standby nonetheless, to help with the kids and give me time for myself and time with my husband. She respected my choices and served Wynn his supplements and gluten-free waffles without question. She tucked Haley under her wing and nurtured the creative pieces of her that loved fabric and glitter and glue sticks. She answered the phone at midnight one Christmas Eve to hear me confess that I hated holidays and that I had just shoved our decorated tree out the front door. Then, there was that little project from her heart called Unlocking Autism that she co-founded with two other determined women that has evolved into an international resource for parents around the world while serving to be a support for me, as well.

Over the past eleven years, I have had many opportunities to meet and talk to many, many grandparents of children on the spectrum. The common denominator in every single conversation is the grandparent’s sincere desire to reach out to their children and be there in any way that they can. Here is what I tell them:

-Listen – without answers or solutions – just be there.

-Provide meals, especially while the parents grieve, process, and plan.

-Take the kids often in order to give the parents a respite and the kids a good dose of only what a grandparent has to share.

-Learn to cook new food if there is a special diet involved, and always have plenty of “legal” food on hand.

-Be supportive. A parent is going to do anything they can to help their child grow and develop. You may not agree, but be patient and let the parents sort it all out. Take pictures at therapeutic horseback riding lessons and join in the Floortime interactions.

-Get online. Join an autism community and get to know other families and other grandparents.

-Put on your sneakers and sign up for that neighborhood walk-a-thon. Raising funds and awareness is just another way to love your family well.

-Keep your opinions to yourself. Autism isn’t caused by too much television or a broccoli deficiency. Children are not disciplined out of autism, and beneficial therapies involve more than “a little tough love” or a spank on the bum. Those kinds of comments will only build walls between you and your children.

-Carry over in your home, as best as possible, the treatments that the parents are using at home. For example, if the parents are ignoring a behavior rather than bringing attention to it, do the same. A consistent environment enhances good teaching.

-Ask what you can do that will help. Sometimes the answer will be “Just give us some space.” Sometimes the answer might be “Please come soon.”

-Be respectful of the parents as they ride the waves of emotion that come with such a diagnosis.

-Be available to accompany the parents on doctor visits and other such meetings. Children are often required to be at these meetings, but their attention span is short and having you there to entertain and interact with them will give the parents the ability and freedom to attend to the professional without distraction.

-Allow yourself to love in a new and bigger way. This journey may shake your family to the core, but there is a rare joy and a rich reward when you love someone with autism with all your heart.

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