I want a narrative of hope to prevail in my son's life, and in all conversations about autism. Here's why—and how—I keep hoping, even in dark times.
Hope may be "the thing with feathers," as Emily Dickinson writes in one of my favorite poems, but I know it's not always easy to feel optimistic when raising a child with special needs. As a mom to a non-speaking 7-year-old with autism whom I refuse to label as low/high functioning, I sometimes get comments from readers like, "She wouldn't be so positive if she really knew the challenges of raising a child with autism..."
But I do get it. My son has a lot of behaviors that are dangerous, troubling, and downright scary. I don't write about them in detail, because that doesn't seem fair to him and because I'm trying to preserve some parts of our privacy.
It's not that I'm trying to silence the suffering of other parents; it's not that I haven't bandaged my own wounds while sobbing; it's not that I don't lie awake some nights, my stomach twisted into knots of worry. It's just that I want a narrative of hope to prevail in this conversation about autism.
Easier said than done on some days, I know—but here's why I hope:
My son is young; his potential is limitless.
John Elder Robinson, writer, father, and Aspergian, wrote something on his Psychology Today blog recently that keeps coming back to me. It's a good reminder of my son's potential, and I return to it on days when hope needs a little boost: "Unfortunately the gift side [of autism] often does not show up till the teen years, and sometimes not till adulthood. That's how it was for me and many other autistics I know. So parents who say their little kids "have no gifts" are in my opinion making a rather premature and dangerous judgment."
Problem behaviors—biting, hitting, self-injury, screaming— are often expressions of frustration over lack of communication, and addressing that frustration makes life better for everyone.
These sorts of violent, troubling behaviors don't come from nowhere. For my son and many kids like him, they reflect struggles to communicate. When I shifted my attitude towards trying to understand the root of my son's frustration and addressing that, rather than just extinguishing the problem behavior, I saw great changes that made me hope. Fostering communication is the answer to so, so many of autism's challenges.
Non-speaking children and adults with autism are finding their voices.
My spirits are always lifted when I see non-speaking kids, teens, and adults finding their voices using communication methods like RPM. Watching videos like these or reading blogs like "Emma's Hope Book" remind me that these children's struggle with silence is like my son's, and in their triumph, I see echoes of his future success. And that makes me want to work all the harder to help him find his own voice.
Autism acceptance is growing.
Although there seems like a lot of negativity surrounding autism, acceptance is growing. As people learn more about neurodiversity, listen to people on the spectrum, and communities do more to support kids and adults with autism, I feel hope for my son's future.
Hoping feels better than despairing, and I choose joy as often as I can.
"Hope takes practice," as my friend Lyn Jones, says. Like all exercise, however, it gets easier the more you do it.
We don't know the future.
Kids with autism surprise their parents, peers, and professionals all the time. My son's doing things at age 7 that seemed impossible four years ago when he got his diagnosis. When I worry to too much about my son's future, I revisit the stories and writings of kids with autism whose futures are brighter than anyone anticipated, like Ido Kedar's Ido in Autismland, or Tito Mukhopadhyay's poetry.
And sometimes, when all that fails me, I recite the first stanza of Emily Dickinson's poem, like a mantra, until the storm has passed.
"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
Never stop hoping, my friends. Never. Stop. Hoping. There is always light beyond the darkness.
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton.