My Son’s Disability Brought Out The Worst In Me
Being the mother of an autistic, intellectually disabled child revealed the darkest side of my nature.
JackF via Canva | Kaspars Grinvalds via Canva People think I’m a good person but I’m not. There’s good and also a lot of bad in me.
This story is about my worst self.
When my son Diego was school age, he always qualified for what’s known as extended school year (ESY) — essentially, summer services for students with special education programs who regress measurably over school breaks or whose disabilities are profound.
Diego, who’s autistic and intellectually disabled, met both criteria.
One time, I was in a school hallway at pickup waiting for Diego to be brought from wherever he was, and I began to make small talk with a staff who was watching a couple of kids.
"Hi Evan," I said to one of them.
"Evan goes to basketball with Diego," I commented to the staff, a pretty young woman who looked to be in her late teens, 21 at the oldest.
"I can’t stand him," she said by way of response.
Say what? As a special education teacher myself, I’ll admit I’ve felt, rarely and for all of two seconds, like I can’t stand this or that kid. A few students have pushed my buttons, hard.
So I understand that an educator could momentarily feel that way about a student. I even understand sharing the emotion with one’s most trustworthy colleague or closest friend.
But what’s inexcusable is saying it, out loud, to a random parent.
Any teacher, aide, custodian, principal — any school employee for that matter — who doesn’t keep it to themselves in front of a parent should be fired on the spot. Such an individual lacks all manner of common sense, an essential quality for anyone working with children with special needs.
The comment disturbed me. And what did I do about it? Nothing.
I didn’t ask her why she’d say that or call her out on it. I didn’t tell the parent, a teacher, or an administrator, even though I knew I should. I let a person with atrocious judgment continue to be around children for who knows how long.
I tell myself that the young staff, who worked as an aide during summer school and whom I never saw again, didn’t go into education. Hers was likely a seasonal summer gig between her first and second year of college, one that definitively ruled out any career related to special education and children.
I regret how I acted — or didn’t act actually. The worst part is why I stayed quiet: out of laziness and convenience mostly. I had a lot on my plate and was too self-absorbed with my stuff to add to it anything not about my own child.
I was selfish.
I like to mull over proverbs with no equivalent in Spanish, my native tongue. It jolts me when one is so pertinent to my life it feels like someone coined it to describe my exact experience.
Here’s one: Misery loves company.
On the noble side of this saying, there’s our tendency to gravitate to others who end up in the same boat as us. When I accepted that our family was stuck in this boat I, too, gave in to this tendency — Fortunately, we’ve gotten to know a world of beautiful folks.
The saying also relates to how we take comfort in knowing we’re not alone in our suffering. There’s nothing objectionable about that.
However, in my case, 'misery loves company' went beyond the righteous satisfaction of knowing my husband and mother shared my pain. There was also the perverse comfort of realizing other parents had it worse than me, and that their kids’ disabilities were more profound than Diego’s. Shame!
I didn’t exactly rejoice in their misery, nor did I want to bring misery to others, but seeing others who had it worse than me did give me some perspective. Little did I know then that how bad you have it as a parent doesn’t depend on disability or level of need. It’s where you’re at in how you view it all. Boy, was I immature and stupid!
Then there were those periods when I couldn’t fully enjoy hanging out with my siblings and old friends because their kids were normal. I didn’t wish they weren’t, but I mildly resented their problems. I mean, how agonizing can it really be that Jimmy’s still sucking his thumb and Giselle’s going to start a new school because you moved?
I was envious.
When Diego was little I pretty much assumed he’d overcome his autism; he’d end up "indistinguishable from peers," a phrase commonly used in the early 2000s to describe what was considered the best possible outcome of early intensive behavioral intervention.
When we moved to the United States and learned about Applied Behavior Analysis, we paid for the most therapy we could afford, about college twice over, because who wouldn’t give their child the best shot at being typical and happy?
For too long I didn’t seek out other families who had children with disabilities, other than to educate myself on services, therapies, providers, and such. Since Diego would belong to the world of the nondisabled, why get attached to a community we’d quickly cease to be part of?
I was arrogant beyond all measure, believing a good and fulfilling life was nearly impossible if you weren’t independent and college-educated.
As an aside: I don’t regret the investment in ABA. Diego’s experience was overwhelmingly positive. I attribute his ability to tie his shoes to rigorous task analysis, backward chaining, and a just-right amount of repetition.
Then there’s Caro, Diego’s therapist for many years, who has been the light of Diego’s life and a lifelong friend.
Now and again I get so angry at Diego that I explode. One memorable explosion happened over brownies.
When I headed out to work that morning, there were five of the dozen or so brownies Diego and I had made in a Tupperware container in the fridge.
I had big plans for one of those five brownies. After dinner, when all was quiet, I’d get a small plate where I would place the brownie, scoop some almond butter on it because everything’s more delicious with almond butter, heat it all in the microwave, and turn it into a lava cake.
That brownie was to be my reward for an honest day’s work as a special education teacher with two days left in the school year. It was to be my treat for having been patient with Diego when he asked me (for the 39th time) what time he’d be going to see his friend Owen on Saturday.
You guessed it, there was no brownie to be found. Diego had eaten every last one of them!
I hollered like a crazy person. This was proof that no one loved or appreciated me. My husband was to blame, too. I’d never let Diego or anyone eat his last anything. How could they?
Diego was so traumatized he will now protect any last brownie with his life.
There’s a level of anger that can turn anyone into a monster. I’ve come close enough to turning into one and it is frightening.
Diego didn’t create the worst in me. It has always been there. Maybe a more apt way to put it is that being Diego’s mother has revealed the darkest side of my nature.
This motherhood thing has also brought out some of the brightest in me, though.
I won’t be shy about it. Despite all of the above, I have been an overall good mom. I mean, I’ve brushed Diego’s teeth every other day for decades now.
I also made him the gluten-free cereal he wanted when gluten-free wasn’t a thing.
The cereal was called Cooke Crisp and the endeavor involved buying the cereal, emptying it, and refilling the box with dozens of teeny tiny GF chocolate chip cookies made from scratch. And when I say scratch, I mean mixing various gluten-free flours and powders to make baking flour. Not like today where you can get gluten-free baking flour off the shelf.
As I wrote at the beginning of this piece, there’s good and bad in me, as in every human. It’s enriching to be reminded of our complex human nature.
In this sense, Diego humanizes me.
Daniella Mini is a freelance content writer and special education teacher. She writes about special needs parenting, family, marriage, aging, and more. You can find her work on her blog publicponder.com, Medium, and Autism Parenting Magazine.