Unexpected Blessings: Voices from the edge

My son is in a hurry to get the marketing done because I have promised him Wendy's for supper. He races around Save a Lot, gathering the things we get every week: pizza, chips, soda. I take a more leisurely approach, pushing my cart up and down every aisle as I peruse my list.

"Do you know where the baking powder is?" asks an elderly woman in the baking aisle.

"Right here," I say and reach up on the top shelf to get the item. I hand it to her.

"Don't know why they keep changing things around," she grumbles and I just smile. Just then, I see Allen barreling towards us, his arms full of the microwave sandwiches he likes. He dumps them unceremoniously into the cart and rushes on past. My shopping companion holds her hand to her chest.

"Mercy!" she says. "What's wrong with him?"

I turn to look at my son's retreating form, trying to see what she sees. To me he is just my youngest child, an adult on the autism spectrum. But I know the wild hair--getting Allen to comb it is an issue most days--and the brusque attitude is often seen as others to be strange. Add to that Allen's tall stature--all 6 feet 6 inches of him--and some people do feel threatened by him.

But I know Allen. I know him to be gentle and kind and often confused by the world. I turn and face the woman next to me. "That's my son," I say gently. "He has autism."

"Mercy!" she declares again. "You poor thing!" she pats my arm. "To have a mental child like that!"

I take a deep breath. I could smile and walk on. But even though it might fall on deaf ears, I make a decision to educate. I am, after all, a teacher as well as a mother. "His brain works differently than some," I tell the woman. "There is nothing wrong with his brain. It just takes him longer to understand things. And right now," I lean in towards her conspiratorially, "his mind is focused on getting a burger at Wendy's for supper."

"Still," says the woman, her voice a bit unsure now," must be a burden on you."

"Not at all," I say. "Allen and I understand each other. We have a routine. He gets the things we need every week." Just then Allen roars past us again, adding a container of cat litter and a box of trash bags to the cart. He barely pauses as he rounds the corner.

The woman pats my arm again. "Bless your heart," she says.

"You know" I tell her as I begin to move my cart away from hers, " many people are autistic. You might even know some. One in 54 people has some form."

"Really?" She seems surprised. "Are they all like..." she points, "your son?"

I shake my head. "No. Some cannot talk. Some function so well you might not even know they were autistic." I move down the aisle. "Have a nice day," I say.

What's wrong with him? I am sorry to say that I hear that question a lot. Allen doesn't always look like others, or act like others. It takes an intense amount of effort on his part to behave the way society expects him to. His father's funeral a few months ago, for example, required Allen to expend enormous effort to stand by my side and shake hands. And helping Allen process his grief at his father's loss is an ongoing journey. "Autism grief is not neurotypical grief" is a phrase that is now engraved into my brain.

When Allen was born, he seemed to be a healthy baby boy. As the youngest of our three, he was content with very little; he seldom cried or fussed. His older brother and sister made up games with him in the starring role. It wasn't until Allen was 3 that we learned he had some developmental delays. Ron and I needed to help Allen in different ways than we had helped Dennis and Bonnie. He needed different methods of educations. And long with the developmental delays were some physical problems: A blood condition that produces too much ammonia, and an inability to produce salt. he gets dizzy spells sometimes. The diagnosis of autism did not come until adulthood.


Did we ask why? I know Ron did. I know that the thought of a disabled child was troubling. Me? I was his mother. No matter what.

But the woman in the market is not unlike the people in John 9 who asked of Jesus, "Who sinned, Rabbi, his man or his parents that he was born blind?" (vs 2). Jesus responded, "Neither this man nor his parents sinned but this happened so that the works of God might be displayed in him."

Allen, and others who reside somewhere on the spectrum of autism or are differently abled, is a work of God. Others may not see it, but I know the gentleness that resides within my giant son. Each afternoon, he makes me a cup of tea so I can relax before dinner. Each night, he carefully double-checks the locks on the doors to keep us safe.

I am halfway up the frozen food aisle when I see Allen again. He grins at me and places a package of Tastykakes into the cart. "Almost done?" he asks. Now that the task is almost accomplished, he can slow down. Many who are on the spectrum, like him, can only handle one thing at a time.

"Almost," I say and put a few bags of vegetables into the cart. Just then I spy the woman from the baking aisle coming towards me.

"Don't know why they put the bread up so high," she grumbles.

Allen strides over to her. "Which one do you want?" he asks. "White or wheat?"

"What?" She is clearly startled. She steps back and eyes him warily. His hair is still wild, but he is smiling now. "Oh, wheat," she says.

Allen grabs the bag and hands it to her. "That's what my mom always gets," he tells her and moves back towards me. The woman is still standing there, holding the bag in her hand, looking at Allen as we walk towards the cash registers.

Works of God come in many forms. Some of them are unexpected. Some of them are a tall young man with wild hair and a kind smile.

Scenes from the Hero's Life: Unique

I’d finished the book and now sat in the waiting room, at least 1 ½ hours of forced inactivity looming ahead of me. And me without my journal or my knitting, the mainstays of my personal “go bag.” I hadn't expected that the first appointment with the psychologist from Occupational Vocational Rehabilitation would be so long. I’d come with Allen toting only my Kindle and my I-phone and now I waited for my son, who sat with Dr. Puelo on the other side of the door.

Sigh.

I am not good at sitting still. There are always a million things that draw on my time, and today was no different. I thought about driving back home—30 minutes—and back again—another 30 minutes—but it seemed nonsensical. And I didn't know Broomall well enough to go exploring.

So I sat. The room—a sea foam green, softly lit, with deep green coaches—pulled me in. I closed my eyes; I prayed. I prayed for my son Allen and for his future, for the years of struggling at school and being bullied, for the car accident that had stolen his father. I prayed for him and his quirks and his ideas and his spirit. It had taken four months for us to get to this appointment, jumping over various government hoops. I hoped that OVR would be able to help Allen with job training and mentoring.

I must have drifted off, for there was no one else in the room to see me, just the soft strains of classical music piped through an old black radio—of all things—and the faint hum of traffic on Lancaster Road. Despite my hectic life and Ron’s ongoing illnesses, I felt at peace. This appointment today would hold an important key to Allen’s life.

I picked up my Kindle, searching for a good “read.” Lately, my tastes have run to historical fiction, particularly when past and present intertwine. Susanna Kearlsey’s A Desperate Fortune could be just the ticket. I downloaded a sample and began to read about a slightly quirky protagonist who was socially awkward, liked to solve puzzles, and was unsettled by crowds and loud noises. Someone, I thought, just like my Allen who claims the noises from a turned off television bother his ears and who draws intricate mazes on kitchen napkins. I read further. Even before I got to the word, even before I saw it spelled out and let it sink into my brain, I knew. 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. It made sense.

I don’t care much for labels, but they can be useful. I used my I=phone to find some famous people who had Asperger’s: Daryll Hannah, Bill Gates, Abraham Lincoln. Bright and creative people. Allen was in good company.

Allen looked tired when he came into the waiting room, Dr. P behind him. “I made him work his brain pretty well,” the good doctor said and smiled. I already liked him. He was going to make a difference in Allen’s life. We set the date for the next appointment.

On the way up 476 three hours ago, I had tried to prepare Allen a bit and encouraged him to keep an open mind. He comes from stubborn German and Powhatan people. I had also told him that he didn’t need to talk about what he had discussed with Dr. P. But we had not sooner gotten in the car when Allen turned to me. “I like him,” said my son. “But there’s one thing I don’t get. He says I have autism. I’m not even sure what that is. He says it’s probably mild, like asp…” he struggled with the word.

“Asperger’s,” I supplied. I breathed.

“Yeah. That. Just what is it?”

Ah, another characteristic of AS, Allen’s unshakable belief that I and his siblings could always supply the answers. I explained that AS was a neurological condition, just the way his brain worked, and that very bright and creative people had it. I named a few.

“Okay,” he said. “Doesn’t sound too bad. It’s not like I’m gonna die from it.”

I smiled. It was more like my son would find a way to live. As we turned onto I-476, I realized that I could finally drop the guilt I’d carried about my youngest child. Ron’s car accident had not destroyed him. As a neurological condition, Allen’s AS—like many things in life—had always been out of my control. In fact, I’d done a pretty good job of helping him cope with a brain that functioned differently. No alcohol, no drugs, no risky behavior. Sometimes wrapping aluminum foil around his windows to keep out “sound waves” was not risky, merely his way of dealing.

“I don’t like labels,” he said to me, something he’d heard me say often enough.

“I know,” I said. “Me neither. But sometimes the label helps you get what you need.”

He nodded. “Okay.” There was a pause. “I always just thought I was unique.”

I smiled. “You are.”

“So whatever Dr. P says, or whenever anyone says I have Asperger’s, I'm just gonna think ‘unique’”.

Of course. He always has been. And he always will be.