People think I’m a good person but I’m not. There is good in me but also a lot of bad. This story is about my worst self in my role as mother of a son with developmental disabilities.
I Am Selfish
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, while waiting at pickup for Diego to be brought from wherever he was, 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 no older than 21.
“I can’t stand him,” she said by way of response.
As a special education teacher myself, I’ll admit I’ve felt, rarely and for all of two seconds, like I can’t stand it anymore. A few students have pushed my buttons, hard. So I understand that an educator could momentarily feel that way. I even get sharing the emotion with one’s most trusted colleague or friend.
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.
The comment disturbed me yet I did nothing about it. I didn’t ask her why she’d made it or call her on it. I didn’t tell the parent, a teacher, or an administrator.
I let a person with atrocious judgment continue to be around children for who knows how long.
The young staff, I tell myself, didn’t go into education. Hers was likely a summer gig between her first and second year of college, one that definitively ruled out a career involving special education and children.
Anyhow, I regret how I acted -or didn’t act rather. 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 to add anything to it.
I Am Envious
I like to mull over proverbs with no equivalent in Spanish, my native tongue, especially those that describe my exact experience. Here’s one:
Misery loves company.
On the noble side of this saying, there’s our impulse to gravitate to others in the same boat as us. When I finally accepted that our family was stuck in the special needs boat I too gave in to this tendency (fortunately, as we’ve gotten to know a world of beautiful people).
The saying also relates to how we take comfort in knowing we’re not alone in our suffering. There’s nothing objectionable about that either.
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 reassurance of realizing other parents had it worse. Shame on me!
I didn’t exactly rejoice in their misery, nor did I wish anyone ill, but seeing others who were worse off did offer perspective. Little did I know then that how bad you have it doesn’t depend on disability or level of need.
It’s where you’re at in your journey and how you view it all.
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. How agonizing can it be that Jimmy’s still sucking his thumb and Giselle didn’t get the role in the play?
I Get Angry
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 many brownies Diego and I had made in a container in the fridge. I had big plans for one of those brownies. After dinner, when all was quiet, I’d place the brownie on a small plate, scoop some almond butter on it because everything’s more delicious with almond butter, heat it all in the microwave, and eat my perfect lava cake in peace.
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! I hollered like a deranged 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 would now protect any last brownie, cookie, and slice of cake with his life.
There’s a level of anger that can turn anyone into a monster.
I Am Arrogant
For way too long, I pretty much assumed Diego would overcome his disability. 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?
At first, I didn’t much 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 soon have nothing in common with?
I was arrogant beyond all measure, believing a good and fulfilling life was nearly impossible if you weren’t independent and college-educated.
Diego didn’t create the worst in me. It has always been there.
It’s just that being a mother has revealed my darkest side -just as it has brought out some of the brightest in me.