Monday, April 2nd, 2012
April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today we’re hearing from Shannon Des Roches Rosa, who describes herself as “an unabashedly proud mother of three complicated kids.” She writes about parenting, autism, iPads and geekery at Squidalicious.com and BlogHer.com. She is a co-founder and senior editor at Thinking Person’s Guide to Autism, and a driving force behind the new book by the same name. Her writings and interviews can be found at the Bill and Melinda Gates Foundation, The New York Times, The Wall Street Journal, MacWorld, Redbook, and Parents Magazine.
My autistic son Leo is curled up on the couch reading a new book: Planes, by Byron Barton. I’m sitting next to him, basking in the joy of a kid who adores those flying machines, glad the book is distracting him from some also-new canker sores. Leo’s kind of autism means he speaks mostly in requests, and can only tell me generalities about his pain: his mouth hurts, he wants me to make it stop. He is not able to tell me how intense the pain is or how long he’s had the sores, which makes my heart ache. It also means his treatment plan is going to require guesswork.
I’d need even more guesswork if Leo didn’t have a large, supportive online community of autistic adults and autism parents and professionals at his back: willing to share their experiences of being autistic and in similar pain, telling me what worked for them or their kids or their patients, offering approaches that help autistic people tolerate medical treatments. I am so grateful to the autistic adults who understand and relate to Leo, the autism parents who have been in my shoes, and especially to the parents who are themselves autistic and so have extra insight about how best to help my son. As long as we have wifi, our family will have 24/7 acceptance and support.
And that Planes book Leo was reading? It’s an app on his iPad. Though Leo is a pre-reader, interactive book apps let him “read” entire stories by tapping and listening to the stories’ individually recorded words at his own pace – he no longer has to depend on other people to read him books. If watching Leo tear through those stories independently is a thrilling experience for me, I can only imagine how exhilarating it must be for an intensely autistic kid who so rarely gets to be his own entertainment gatekeeper.
For Leo, his iPad is the Wonka’s Magic Chewing Gum of devices – all his favorite music, videos, and an ever-expanding selection of books plus learning and play activities are rolled into one slim tablet. Though iPads have been out for only two years, their positive impact on Leo’s life, on many autistic kids’ lives, has been mind-blowing. My son has always been smart, but his iPad’s intuitive, organized, voiceover- and visuals-heavy interface lets him easily demonstrate those smarts. And his iPad is a social lightning rod that makes other kids seek him out – including the little sister and small cousins with whom his relationship is often prickly, but who are willing to negotiate and cooperate with him if that means they gets to use apps like BrainPop and Toca Kitchen.
I honestly cannot imagine what my delightful son and I would do without his iPad, or our Internet support networks. From all accounts, parents like me and families like ours were often quite isolated before the Internet era. I tell myself I would not have had the fortitude to be an autism parent in the era of the Refrigerator Mother, of being told that Leo was clinically not delightful, that his autism was not only a reason to institutionalize him but was also caused by my being a cold, uncaring parent — as if my fiery love for Leo was somehow inferior to the love I have for his two sisters.
If I hadn’t started blogging about parenting and autism eight years ago, then co-founded Thinking Person’s Guide to Autism, we wouldn’t know half the wonderful beings in our community, our life lines, impromptu support groups, Leo cheer squads, or circles of friends. And sometimes I wonder if Leo was too often bored before he had his iPad. But now, he can self-direct his entertainment during downtime, via apps that engage him on multiple levels, with animation, graphics, and sound. They motivate him not only to learn but to want to learn. It’s lovely.
This is in no way to discount the fabulous autism parenting resources in the non-digital world—the people, professionals, and educators who have dedicated their lives to supporting people like my son and families like ours. But with the Internet, I can take what I’ve learned about supporting Leo and his autism, including insights about apps and his iPad—and share that learning with other parents – who can then share their own experiences and secrets and laughs and trials and heartaches. And we can all grow stronger and smarter and support our autistic children better, together.
Leo and I recently attended a Facebook-organized gathering of autistics, parents, educators, and friends, several of whom Leo had not met before. I prepped our boy by swiping attendees’ photos from Facebook and uploading them into Write My Name, a custom flash card and writing practice app. As Leo sat at the gathering, he would look at each person’s flash card on his iPad, and then up at the actual person, then back at his iPad for confirmation. When we returned home, he rebooted the app, and traced the names of the people he’d met over and over again. “Zoe,” he repeated in his sweet, husky voice, “Rob. Steve.” He looked at their photos, echoing my recorded voiceover of their names, etching them into his memory. He was able to enjoy and extend a social experience beyond its often too-overwhelming real time, remembering people from the Internet who chose to be part of his life, while incidentally reinforcing his reading and writing skills.
Sometimes, being an autism parent in the iPad and Internet age makes me want to do giddy somersaults. I feel very, very lucky to be Leo’s mom right here, right now.
Photo credit: © Kelly NicolaisenAdd a Comment