Guest blog by Stacey Spiehler, President-elect, Families as Allies Board
When we’re pregnant with our children, we have hopes, expectations, dreams, whatever they may be called. An entire sector of literature is dedicated to pregnancy, infancy, early childhood expectations. Some of it is from experts, some from people who want you to believe they’ve totally been there and done that. Wink wink. Every stage of our child’s development is guided by a certain set of expectations, a mark on a wall, an answer to a question at a 10-minute checkup, an ‘S’ on a report card.
For parents like me, there’s a different set of expectations. An autism diagnosis means x therapy, y medication, z milestone, with x+y equaling z. I still expected a predictable existence, even with a child with autism and cerebral palsy. I didn’t realize until my son was a preteen that every expectation was a brick on my back which became heavier if not met, but stayed the same weight if met. The constant power struggles were so heavy, and they became ten times heavier when he was in someone else’s care.
Sometimes my bricks fell on my little boy. The pressure of expectations affected both of our already limited mental space, and days went by without us being especially loving.
As I write this, another window is open with a blank email that I’m going to fill with accommodation requests for his transitional IEP. I am no stranger to the IEP process; I spent nearly 40 hours in one calendar year in meetings with another school district, fighting their impossible expectations and archaic punishments. We moved to this new school district just before the pandemic, so he only got 3 solid months of school before the world fell apart. When he went back, my most pertinent instruction was “expect nothing.” The only boxes I wanted to be checked were: “Is he safe? Is he happy? Is he learning?”
It worked. He’s absent a lot and late a lot more. Sometimes he falls asleep in class, but he always loves being there. Sometimes things are a little too much for him and he goes back to his support class and zones out on Terraria. He’s thriving academically, coming in at the 96th percentile for English with all As in most classes. His coding teacher asks him for help. (We won’t talk about math. He gets it from his Mama.)
While adjusting my expectations for him, I adjusted mine for myself. I’m in my second year of journalism school, and I’ve talked to every one of my instructors about those bricks. That worked, too. Communication is key when I need an extension or take an absence. I’m a single mom, so my expectations of a tidy and beautiful home have flown out the window that’s smudged by the cat’s face.
Autism acceptance to me means accepting my life as it is, day by day. Prioritizing my sanity and my son’s day-to-day well-being. Recognizing that the goal path of an autism family looks a lot different from a neurotypical family. Sometimes it’s every goal met and class attended and deadline achieved and a new food tried. Sometimes it’s pizza and movies and mental health days. For us, it works.
Families as Allies has a family support chat via Zoom every first and third Thursday of the month, as well as parents who have been in your shoes to help you with your IEP expectations. Nothing is impossible, it’s just different. Thank you for reading.
[Photo by Kelly Sikkema on Unsplash]
