Three years ago I walked into my son’s group therapy appointment on what happened to be Autism Awareness Day. Another mom in the waiting room was wearing all blue: blue sweatshirt, blue baseball cap, even blue socks. I made the mistake of asking her what the occasion was.
I was unaware of Autism Awareness Day, even though my son had just been diagnosed with Autism Spectrum Disorder.
Truthfully, I was far too overwhelmed to “light it up blue” as the campaign slogan goes. I had a newborn as well as my newly diagnosed three-year-old. My son’s behavioral challenges were wreaking havoc on our home life and had gotten him kicked out of two preschools. My effort to get him into various therapies was repeatedly thwarted by provider waitlists, insurance hurdles and my own lack of knowledge. I had post-partum depression, mastitis and competing stacks of medical bills and dirty laundry.
If I happened to be wearing blue, it was purely by accident.
I am now both aware of and grateful for Autism Awareness Day. On April 2nd this year, buildings across the globe, from the Empire State Building to the Great Pyramid of Giza, will literally light up blue in recognition of people living with autism. Supporters will wear blue, walk, fundraise and change their profile pics.
I do believe these awareness-raising efforts contribute to a more inclusive and understanding world for my son.
Yet, three years later, I’m still overwhelmed.
Truthfully, there’s a 102 story, hair-raising drop from the glowing tip of the Empire State Building to the reality of living with autism on the ground floor. Down here there is less to celebrate and a lot more to wish for.
Every autism parent I know is burned out if not at their wit’s end. An autism mom recently confided in me that after spending every waking summer hour with her non-verbal, hyperactive five-year-old she secretly hoped CPS would take away her kid – not forever, just long enough to give her a break. Another autism mom told me she was contemplating divorce and joint custody just so she could have every second weekend to sleep.
Autism itself is stressful for anyone living with or near it. Many of these stressors – behavioral challenges, sleep issues, extreme rigidity – are inherent in the disorder and unlikely to change. However, some of the deepest sources of aggravation and despair for parents have less to do with autism and more with the way the world treats it. These are things we can change.
I am part of a closed Facebook group where autism moms freely air their frustrations. Naturally, we rant about our children’s behavior (He won’t eat! She won’t sleep! He won’t stop stimming!). But in many cases, our kids are not the problem. The problem is a system that continues to let both us and our children down.
Common complaints include: schools unwilling or ill-equipped to serve our students, insurance companies that deny coverage, and disability benefits that are so meager they aren’t worth the effort. Then there are the day-to-day interpersonal challenges: unsupportive family members, uncooperative teachers, dismissive doctors and a general public that would rather judge than offer a helping hand.
I look back on myself three years ago. What I really needed – much more than matching t-shirts, glowing blue pyramids or a “rah rah” cheer – was support. I needed support in every form from counseling to help accessing services to someone to sort the laundry and pay the bills.
Don’t get me wrong. Awareness is good and necessary. But it is not an end in itself. It is the first step in getting to what we really need: schools with adequate training and staff, full and accessible medical coverage and inclusive works places and communities. For a start.
Give us these things and I will put on a t-shirt, light my house blue and change my profile pic right along with you.
Until then, I’m just too overwhelmed.