As the mother of a child with special needs, there’s always pressure to tell my story with a tidy ending and sum it up at with words of gratitude and a sentimental, “But I wouldn’t have it any other way!”
And yet as the mother of a child with autism, I would. I would change everything if I could. I would change my son’s story and his diagnosis. I would change his behavior. I would even change his personality (gasp!).
My son is verbal, aggressive, sweet, difficult, complex, needy, funny, clingy, cheerful, and exhausting to be around. He is eight years old. He has been diagnosed with autism for more than a year, and attends 30 hours a week of ABA therapy. (ABA therapy stands for Applied Behavior Analysis and is the gold standard for autism therapy and treatment.)
In addition to ABA, he has two hours a week of occupational therapy. This is where he learns to tie his shoes, dribble a ball, and ride a bike. This is also where he learns the basics like how to zip his pants, brush his teeth, and practices the alphabet. (Side note: insurance doesn’t cover OT. I mean, really? Do any of those items I mentioned seemed optional or superfluous? Uh, no.)
He takes an enormous amount of physical and mental energy to parent as well as copious amount of behind-the-scenes work. When I am not with him, I am frantic to do everything to stay on top of his progress and life.
There is the daily reward chart; surprises for the treasure box; the special, very specific snacks that requires trips to three or four different grocery stores; the lengthy daily texts and emails with his behavior therapist; the coloring books, puzzles, and worksheets needed to occupy him for 10 (blessed!) minutes at at time; the iPad that must always be charged; and keeping the house meticulously tidy and organized because messes make him nervous and restless.
And this is merely scratching the surface of ALL THE THINGS that must happen while he is either at therapy or asleep. I haven’t even mentioned interacting with insurance, have I?!? Or that I have four other children in addition to my son with autism?
And even then — even with the perfectly arranged snacks in the perfect, predictable order on a plate, sitting on a perfectly clean kitchen table when he walks in the door from therapy — even then, there is no guarantee it will be enough. He may come inside, and have a total meltdown over bumping his foot on the door. Or he may throw an epic tantrum because one of the neighborhood kids is outside blowing bubbles. Who knows?!? Anything sends him spiraling. He may throw the plate and punch a hole in the wall. He may scream for 20 minutes. He may scratch or bite me. Or he may sit down and eat the snack and move on to the next activity, but I never know.
During the evenings and weekends, we plan out everything in 20-minute increments. Twenty minutes of coloring, followed by 20 minutes of jumping on the trampoline, then 20 minutes on the iPad. And so on. It’s exhausting, monotonous, and feels like a slow and steady march toward insanity.
Every night after we have precisely followed his nighttime checklist with no variations (even on holidays or special occasions, we must follow it exactly), and when all I want to do is fall head first into a bottle of wine and box of Girl Scout cookies — there is still so much to do. Data from his behavior that day has to be recorded. A tick mark for every time he screamed, hit others or himself, argued, or destroyed property, and then a lengthier description for each time-out or major meltdown. Then this tallied data is sent to his therapist.
Finally, we lock up everything. Every cabinet in the kitchen, the fridge and freezer, even the spice rack, because we have only recently broken my son of the habit of eating all night. He still wanders at night, but at least the house is safe, and there is no longer a smorgasbord of granola bars, chips, and cocoa powder in his bed in the morning. He doesn’t understand certain foods aren’t meant to be eaten raw such as bullion cubes and breadcrumbs, so we have learned to cautiously lock this away too.
We avoid birthday parties, crowded spaces, and family gatherings. Even an empty park can be a challenge. Recently, I took the kiddos to a neighborhood park, and my son spent most of the time throwing a tantrum and rolling around in a dirt field beside the playground. I was secretly grateful the park was deserted; because with no onlookers to see my son’s out-of-control behavior, I felt less shame, guilt, and anxiety.
And I already feel shame and confusion and inadequacy most of the time. Autism demands rigidity and perfectionism, and yet I am just me, an imperfect, weary, flustered mother to a lot of little ones. My son often exposes the worst in me — and possibly the best in me? But that’s for another day.
No matter how hard I try to stay calm and not react per his therapist’s instructions, things come to the surface — angry cuss words, screams of frustration and exhaustion, a desire to disappear, to be less, to leave, to not write this part of my story. If nothing else, parenting a child with autism demands relentlessness. And yet, I will get up again tomorrow, and do it all over again. Even the cuss words.