Back-to-school season often comes with a touch of the bittersweet to me. My son Charlie is 15 and “technically” a sophomore. But he’s not really in a grade. Charlie is on the moderate to severe end of the autism spectrum and attends a county autism center where he’s in a secondary level class.
But back-to-school is ultimately a time to celebrate how far Charlie’s come and to reflect on how we’ve learned to support and help him over the years. When your child is “different” — on the autism spectrum, has learning disabilities, has multiple disabilities involving medical care — back-to-school is full of even more signifiance and school success is measured differently.
Back-to-School Without the Back-to-School Shopping
A couple of days ago the New York Times ran an article about how retailers were worrying about lagging back-to-school sales as students, not wanting to show up in last year’s fashions, are delaying the annual shopping fest till they are actually back in school.
We don’t do any back-to-school shopping. If Charlie could, he’d wear the same shirt and pants every day, till they were in tatters. He neither notices nor cares one bit about trends: He’s immune to both peer pressure and consumer capitalism.
It’s something sad about parenting a child with disabilities who is more and more out of step with kids his age. But it’s also why being Charlie’s mother has been a constant back-to-school experience for me in the best of ways, a chance to learn that there’s a lot more to life than earning good grades or worrying about getting into a good college.
Parents Write About The Spectrum of School Success With a Child with Disabilities
On her blog, Along Came the Bird: the real life adventures of a special needs family, Lana describes the stellar (learning to use “yes” and “no” cards to answer questions) and the “not so stellar moments” (biting a teacher) in the first week of kindergarten for her daughter Lily, who was born with a number of medical issues and is autistic.
Lana’s blog and a number of others by parents and individuals with disabilities resonate with my experience as the mother of a child who is “different.” Charlie still needs lots of speech therapy and there are, and will be, times when he bangs his head or throws things. He’s learning how to to express frustration in other ways (going to a quiet place and making noises that are soothing to him). He’s also learning vocational skills and how to read single words.
As the short bus (the smaller school bus kids with disabilities often take) returns, Rob Rummel-Hudson of Fighting Monsters with Rubber Swords writes that there’s worry in the air as his daughter Schuyler, who has a rare neurological condition and does not speak, may be changing schools very soon. But, showing the incredible spirit our kids have, “she nonetheless leapt onto the bus this morning without hesitation, and without so much as a glance back.”
Often I feel like just getting Charlie to the point when he’s stepping onto the school bus on the first day of school is the signature achievement of my year. Jean at Stimeyland has three sons on the autism spectrum and describes my experience times three: this year’s first day of school was even more “interesting” than usual for her because each of her three boys is going to different schools. (The buses didn’t all come on time but everyone got to school, eventually.)
Who doesn’t have a first-day-of-school photo in which you’re wearing some brand new outfit, with a new backpack to match? Tanis at Attack of the Red Neck Mommy is determined to take that first-day-of-school photo, though it takes a bit of effort to get a good one of her two teenagers carrying her youngest (who has multiple disabilities). In the process, Tanis reminisces with humor and insight about her (not, alas, perfect) first day as a junior in high school; I was reminded of how raising Charlie, with all of his challenges, has helped me put the woes of my teenage years into perspective.
Insights From Those Who Know About What It Means To Live With a Disability
The first day of school is a reminder that your child is a year older and growing up. The insights of those who’ve grown up with disabilities are essential to parents like me, trying to help our kids on the road to adulthood.
On the blog The Thinking Person Guide to Autism are two posts by adults on the spectrum about what they wished they had known when they were in school. Louise Nebeker, recalling transitioning from a special education classroom to a typical first grade one, writes that “I wish I had known not to be ashamed to ask for accommodations and support during my school years.”
Nick Walker also reflects on his earlier years in school, noting that he wished he could have known then what he learned as a teenager and adult: “ I wish I’d known the things that I later learned through aikido training: the self-regulation and self-defense skills; the ability to both inwardly access and outwardly convey calm centeredness and physical confidence. And I wish I’d known that I wasn’t alone, that I would eventually find more and more people like me.”
Erin Breedlove at Healthy, Unwealthy, and Becoming Wise writes about getting started for another year in college. Erin has cerebral palsy and her post, Five Things All Professors Should Know, is a must-read not only for college professors but for teachers of students with disabilities. One point I’d like to highlight is Erin’s first one, “students with disabilities are students first.”
That’s the best advice I can think to pass on as we all face a new school year. Wishing everyone a very good one!
Related Care2 Coverage
Photo by bestlibrarian