Everyone thinks I’m a good person, but that’s not true. I have good points and many bad points.
This story is about my worst self.
When my son Diego was school age, he was always eligible for something called Extended School Year (ESY), which is basically summer services for students in special education programs who regress significantly or whose disabilities are severe enough during school holidays.
Diego, who has autism and an intellectual disability, met both criteria.
One time, I was standing in a school hallway waiting for Diego to be picked up and I started making small talk with a staff member who was looking after some kids.
“Hi, Evan,” I said to one of them.
“Evan plays basketball with Diego,” I told the staff. She was a pretty young woman in her late teens, the oldest around 21.
“I can’t stand him,” she replied.
What? As a special education teacher myself, I will admit that there have been very few times, even for just two seconds, when I felt like I couldn’t stand this kid or that kid. Some students have really pissed me off.
So it is understandable that educators might temporarily feel that way about their students, and it is also understandable that they would share those feelings with their most trusted colleagues and close friends.
But what’s not allowed is saying it out loud to a stranger parent.
Any school employee, be it a teacher, aide, guardian, or principal, who will not voice his or her opinion in front of the parents should be fired on the spot. Such a person completely lacks common sense, an essential quality for anyone working with children with special needs.
That comment made me uneasy. So what did I do? Nothing.
I didn’t ask her why she said it, I didn’t scold her. I didn’t tell parents, teachers, or administrators, even though I knew I should. I let no one know how long a person with poor judgment would continue to be around kids.
One young staff member who worked as a summer school assistant and was never seen again told me she didn’t go into education — it seemed like a seasonal summer job between her freshman and sophomore years in college, and she definitely couldn’t imagine working in special education or with children.
I regret my actions. Well, actually, my inaction. The worst part is why I kept quiet. It was mostly out of laziness and convenience. I had so much to do and was so self-absorbed that I couldn’t add anything except what was going on with my child.
I was selfish.
I like to think about proverbs that have no equivalent in my native Spanish, and it strikes me when a proverb is so relevant to my life that it feels as if someone created it to express an exact experience of mine.
Here is an example: “Misfortune loves company.”
The noble side of this saying is that we tend to be drawn to people who are in the same situation as us. I gave in to this tendency when I recognized that our family was in this situation. We were fortunate to be introduced to a world of wonderful people.
This proverb also has to do with how it can be comforting to know that you are not alone in your suffering. There is no disagreement about that.
But in my case, the saying “suffering finds a friend” meant more than the legitimate satisfaction of knowing that my husband and mother shared my suffering. There was also the perverse comfort of knowing that other parents had it worse than I did, and that their children’s disabilities were more severe than Diego’s. What a shame!
I didn’t rejoice in their misery or want to inflict misery on others, but seeing others in worse situations than me gave me some perspective. What I didn’t realize then is that how badly you are as a parent doesn’t depend on your disability or level of support. It’s how you view it all. I was so immature and stupid!
Then there were times when I didn’t fully enjoy spending time with my siblings and old friends’ kids because they were normal. I didn’t wish they weren’t normal, but I did resent their problems a little. I mean, is it really so hard when Jimmy still sucks his thumb and Giselle starts a new school because you moved?
I was jealous.
When Diego was little, I largely assumed that he would outgrow his autism and eventually become “indistinguishable from his peers” — a phrase commonly used in the early 2000s to describe what were considered the best outcomes of intensive early behavioral intervention.
When we moved to the US and studied Applied Behaviour Analysis, we paid the maximum amount of therapy we could afford, nearly twice the cost of university, because who wouldn’t want to give their child the best chance possible to grow up normal and happy?
For a long time, I made no attempt to seek out other families with children with disabilities to learn about services, therapies, providers, etc. Diego belonged in a world of people without disabilities, so why cling to a community we would soon no longer be a part of?
I was arrogant beyond measure and believed it was nearly impossible to live a fulfilling life without being independent and having a college education.
As an aside, I do not regret our investment in ABA. Diego’s experience has been overwhelmingly positive, and I attribute his ability to tie his shoes to rigorous task analysis, backward chaining, and just the right amount of repetition.
And then there’s Caro, Diego’s therapist for many years, the light of his life and a lifelong friend.
Every once in a while, I would have angry outbursts at Diego. One memorable outburst happened over brownies.
When I left for work that morning, there were about a dozen brownies in the fridge that Diego and I had made in a Tupperware container.
I had big plans for one of the five brownies. After dinner, when everyone was quiet, I was going to get a little plate, put the brownie on it, scoop some almond butter on top (because almond butter makes everything better), heat it up in the microwave, and turn it into a lava cake.
That brownie was my reward for an honest day of work as a special needs teacher with two days left in the school year. It was my reward for being patient when Diego asked me (for the 39th time) what time I was meeting my friend Owen on Saturday.
As you can imagine, there were no brownies anywhere – Diego had eaten them all!
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I screamed like crazy. This is proof that no one loves or values me. My husband is also to blame. I will not let Diego or anyone else have the last bite. How can that be?
Diego was deeply traumatized and now risks his life to protect the last brownie.
The level of anger is enough to turn anyone into a monster. I have come close to becoming one and it is frightening.
It’s not that Diego brought out the worst in me – it was always there – it’s probably more accurate to say that becoming Diego’s mother revealed the darkest side of my personality.
But becoming a mother has brought out the brightest parts of me.
I won’t be ashamed to say it: despite all of the above, I was generally a good mom, brushing Diego’s teeth every other day for decades.
I also made him a gluten-free cereal that he wanted when gluten-free wasn’t around yet.
The cereal was called Cook Crisp, and the job involved buying the cereal, emptying it, and repacking it into boxes with dozens of little gluten-free chocolate chip cookies made from scratch. By made from scratch, I mean mixing a variety of gluten-free flours and powders to make baking flour. Not like today when you can buy gluten-free baking flour in the stores.
As I wrote at the beginning of this article, like every human being, I have good and bad sides, and it’s useful to be reminded of the complex nature of human beings.
In this sense, Diego makes me more human.
Daniella Mini is a freelance content writer and special education teacher. She writes about parenting children with special needs, family, marriage, aging, and more. You can find her work on her blog at publicponder.com, on Medium, and in Autism Parenting Magazine.