Angelique Bedwell, a single mom, used to have an SUV that she used to transport her 13-year-old, Jason, who has cerebral palsy. Then it got stolen from their apartment complex in Grand Prairie, Texas. When police found it a day later, it had been stripped.
At first, writer Judy McFarlane didn’t know what to make of a friend’s request to help a young woman who wanted to write. “Her name is Grace, she’s 23, and she has Down syndrome,” her friend said. “Would you meet her for an hour or so and help her get started?”
This was in 2005 and, recalls Judy, “My immediate reaction was negative. I’d never met anyone with an intellectual disability. How could someone with Down syndrome think about writing? How would we talk about writing? Or talk at all? What if she became frustrated, upset, even agitated? But Grace had said out loud, I want to write. The words I hadn’t been able to say when I was her age. She’s braver than you were, I told myself. And so, with much hesitation and fear, I went to meet Grace.”
The result of their collaboration: Cinderella-Grace, Vancouver Princess, a modern-day fairytale in which Grace cast herself as a feisty princess who marries her prince, honeymoons on the Titanic, has three daughters and becomes a famous spy. Judy helped Grace edit and revise her writing. “Her parents published her book, her church held a book launch, and Grace displayed her book at the World Down Syndrome Congress held in Vancouver, Canada,” she says. “Delegates from over 30 countries took Grace’s book home with them.”
Now, Judy has written a book about her experience, Writing With Grace. Reviewers describe it as “beautiful” and “absorbing and moving” and “brimming with insight that inspires us to re-examine our attitudes towards both ourselves and those we deem to be different.” Here, some key things Judy learned on her journey with Grace:
A person with Down syndrome is a person, with Down syndrome
Before getting to know Grace, I saw her as Someone With Down Syndrome. It was as if the real Grace was hidden by a dark cloak called Down syndrome, making it impossible for me to see her. But as I got to know Grace, I began to see her for who she is – someone who loves to read, likes learning a new language, someone with a good memory. Someone who is not cheerful all the time, who can get annoyed or angry or frustrated like anyone else. Someone who has dreams. And loves going to Starbucks!
People don’t know how to interact with disabled people
One day, as Grace and I read a speech given by a young Japanese woman about what it meant to her to have Down syndrome, Grace blurted out, “My truth is too scary. I like to hide my real truth.” When I’ve been out with Grace, I’ve seen a variety of looks directed at her—unease, discomfort, and even, once or twice, outright hostility. Others appeared not to see her at all. It’s rare for someone to smile at Grace and say, “Hi, how are you?” Grace always seemed to take these reactions in stride. But after she blurted out her words, I realized she had noticed and concluded that having a disability is a scary thing. And she’s right. It takes courage to go out every day into a world that does not always welcome you, that sometimes gives you the message that it wishes you were not there.
There’s no one-size-fits-all with Down syndrome
There’s a tremendous range of abilities for people with Down syndrome. Some are non-verbal, some are able to hold down a job and live independently, some can drive a car, act on TV, or even graduate from university. All of which tells me how ignorant I was before I met Grace, when I made assumptions about what she couldn’t do.
Inclusion is a nice word, but….
There’s no question we’ve made enormous progress in the treatment of those with disabilities over the last fifty years. Laws now provide for inclusion in many areas, such as education and employment. But real inclusion, I’ve come to see, is not just about legal rights. It’s about whether someone feels welcome, that he or she belongs. And that happens on an individual level. Do we look someone in the eye? Do we smile at them? Do we include them in the conversation? In his wonderful book, The Body Silent, Robert Murphy (a former Columbia University professor forced to use a wheelchair because of a spinal tumor) wrote that those with disabilities often stand outside the formal social system, as if they’re in a strange darkness, like an eclipse of the sun or the moon. When I read that, it struck a chord with me. Before I met Grace, to me it was as if those with intellectual disabilities were shadowy, almost invisible.
Fear is a powerful force of exclusion
Jean Vanier, who founded L’Arche, an international organization that provides support and homes for people with intellectual disabilities, has written that we are frightened of those who are different, that fear is at the root of all forms of exclusion. I recently experienced this close to home. Almost every day, I walk through my neighborhood park. I often pass a man who lives there, camped out beside the park caretaker’s building. In all the times I’ve passed him, he’s never once looked up at me. And I’ve never once said hello to him, although I’ve often wanted to. He always seemed so alone, so unreachable. And I was afraid of him, afraid of how he’d react to me.
Yesterday, he was standing right beside the path. I don’t know why, but as I passed, I said good morning. He looked up at me, and for the first time, I saw his blue eyes. A half-smile crossed his face before he looked down again. I walked on, and then I cried. For his loneliness, and for all the lost times when I could have spoken up, when I could have looked him in the eye and smiled.
There are unexpected moments of delight
One day, after Grace and I had been interviewed by a local magazine about her book, we were driving home. Grace asked me to sit in the back seat with her, while her mother drove. As we drove along, Grace turned to me. “I’m a famous writer now,” she said. I agreed that she was, in a way. We drove along for a few more moments, then Grace said, “So where’s the black limousine?”
I laughed and broke the news that most writers never get a black limousine. And then we carried on. Grace would always have her book and nothing could take that away from her. And I knew I would find a way to tell both her story and the story of how she changed me.
On Sunday, November 2 at 2 AM, we turn back the clock an hour. Although moms and dads everywhere may wish they could sleep during that extra hour, the reality is most kids will be up and at ‘em. For parents of children with special needs who already have sleep challenges, this can be an especially tricky time of year. A few key strategies to make things go more smoothly for everyone:
• Ease into it. For the next several days, move up your child’s nap and bedtime by 15 minutes. Come Sunday morning, your darlings may just sleep in for most of that extra hour. This worked well for our family when our kids were little.
• Find the time. If your child is learning how to tell time, or has never had her own clock, this is a good moment to get her one. I let my daughter pick out an inexpensive digital clock online. On Saturday night, I plan to explain the whole “Spring ahead, fall back” thing, turn the clock back and—perhaps most importantly—show her the time when she is allowed to knock on our bedroom door in the morning.
• Make coming home in the dark welcoming. Returning to a pitch-black house after a family dinner out tends to make all of us hate Sunday nights even more, but we’ve found a new solution. Our family got a Piper to try, a chic mini home security and video monitoring system you control through an app. It’s been great to watch and listen in on the kids while I’m at work (there’s a 180-degree lens, so you can view an entire room) and talk to them through the two-way audio. We also got a door/window sensor, for extra security. Our favorite feature is the Smart Switch sensor, which plugs into an outlet; we connected a living room lamp to it, and now before we get home I turn it on from the Piper app so there’s a nice warm glow in the house when we drive up to it. When we’re out I change the setting to “Away” so the motion detector can alert us if anyone tries to break in and steal the Halloween candy.
• Actually use the shades. Pull them down at bedtime; you don’t want sunlight waking your children up any earlier than they might be inclined to because of the time change.
• Create a sleep chart. If the time shift has thrown off your tot, make a chart with columns for Bedtime/Wake-up Time/How I Feel. Fill them out with her daily, and talk through any grumpiness issues.
• Have a time-switch treat. At our house, we make chocolate-chip banana pancakes the morning after we switch back to standard time and, in the spring, the morning after we go to Daylight Saving Time. No matter how early we rise and shine, it makes getting up totally worth it.
Wings for Autism, an airport “rehearsal” that helps kids with autism feel calmer about flying, held a program at Piedmont Triad International Airport in Greensboro, North Carolina this weekend. Run by The Arc of the United States, and using a Delta plane, it allowed kids with autism to experience what it’s like to go through the hustle and bustle of an airport and security, and to sit on a plane with their families. Here’s a video of the program in action at another airport:
If you have a child with autism (or sensory issues, as I do), you know how stressful plane travel can be. Max went through a phase in which he repeatedly kicked the back of the seat in front of him; it helped calm him down, though it did anything but for the nearby passengers. We had to cushion his knees with our winter jackets and, once, switch seats so that I was the one in front of him. Thankfully, he grew out of it.
What’s doubly awesome about Wings for Autism is that it gives airport, airline and security staffers the chance to observe and interact with kids with autism, and better understand them. Unfortunately, you’re on your own for dealing with the glares you occasionally get from fellow passengers. Once, we sat near a woman who remarked to her kids about the “annoying noises” Max was making (basically, his form of speech). I leaned over and said, “That’s his way of talking.” And she still gave me a look. Nice!
There are five more Wings for Autism program dates coming up, in Boston, Washington and Anchorage (here’s the schedule, with a link to registration information).
“While I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.” Those are the shocking words I read this morning, in a Daily Mail article, said by Gillian Relf, 69, mom to Stephen, 47. The piece has gotten a lot of attention, as did another recent one by the same publication in which other parents of a child with disability also said they would have terminated their pregnancy.
Let’s set aside the fact that this is a newspaper that thrives on shocking people into reading it. These are still real sentiments coming from real people. I read them with both sadness and heavy disappointment about the message they were implicitly conveying to the masses: That kids and adults with disability are damaged, lesser human beings who can ruin people’s lives.
As the parent of a kid with cerebral palsy, I completely understand the struggle with accepting a child’s special needs. Many of us contend with that. Just this week, I was musing about the ghost of that other child—the one I expected to have. In general, though, I’ve come to a place where Max’s disability is a part of who he is. Not every parent of a kid with special needs feels that way, of course, or needs to. Mom Gillian Relf is from a different generation; I wonder if she’d think otherwise if she had the resources and social media support that parents of kids with special needs have these days.
Still, making a public proclamation that you wish you’d aborted your child with Down syndrome is unfortunate. It’s downright painful to those of us who are out there doing our best to get the world to accept and include our children, which is often an uphill battle. It’s a free world and of course, any parent has a right to speak her mind—but I can’t but help but feel disturbed when people set back progress the rest of us have made for helping the world welcome children with special needs.