“You are so good with him.” The secretary smiled, her chin resting in her hand as she watched me interact with my autistic son. I have often received compliments like this. Compliments about how patient I am, how I’m such a loving mom, how God chose me to be my son’s mom for a reason.
I responded the way I always do, with a wry smile. “Oh, thank you. But you should see me at 3AM.”
Of course I say this jokingly, but it really is no joke.
Although I am flattered by the compliment, I am no saintly Mother Theresa. That is, unless Mother Theresa had a potty mouth and anger management issues.
The truth is given the right circumstance – like searching for a missing sock or matching Tupperware lid, getting stuck behind a person who is driving too slow, trying to figure out the new operating system on the ipad, etc. – I can construct a string of profanity with more creativity and passion than my late-teens/early-twenties, heavy metal headbangin’, fish net tights with Doc Martin boots wearing self could ever dream. Because as angst-filled as I once was, it’s nothing compared to having control of your life completely hijacked by a preschooler, especially one with special needs.
According to my pre-parenting plans, my child was destined to be a “magic baby” who slept through the night the first week home from the hospital (as long as I put him into his bassinet before he fell asleep and let him “cry it out” so he could learn to “self-soothe”). Then my fantastic parenting would mold him into a “magic toddler” who would eat the food I put in front of him (or go hungry because I wasn’t cooking him his own meal). I was also quite sure that my child would be calm, polite, and well behaved – his preschool teacher’s dream (because I would set boundaries and be firm and consistent in my discipline approach at all times).
My careful, confident planning was based on many assumptions about my future child. I had not considered the possibility that my child would have a neurodevelopmental disorder that would affect his ability to calm his body for sleep. Or that he might have a Sensory Processing Disorder that would give him overwhelming anxiety and make it difficult for him to eat a variety of foods beyond the few he felt safe eating. And my plans didn’t take into account how difficult it is to teach proper behavior to a child with no receptive or expressive language. Indeed, I had never considered the fact there may be a very good reason why a child is not “calm, polite, and well behaved”.
A very, very good reason.
A reason beyond my control that required patient understanding, not strict discipline.
Now I’ll admit, patience has never been my strong suit. Sometimes I surprise myself at how patient I really can be as a parent. But while my love for my son is boundless, there is only a finite amount of patience in my being, an amount that diminishes exponentially based on one variable: Number of Hours of Unbroken Sleep.
Let me tell you a little something about sleep (or lack-thereof). It’s not for nothing that sleep deprivation is considered a form of torture. Sleep deprivation is not only the foremost cause of my lack of patience but also the biggest contributing factor to my possible future Oscar bid in the “Drama” category. Aside from the swearing, foot stomping, and door-slamming, one of my signature Oscar submissions would be my “exasperation moment” where I shake my fist skyward, cursing fate for her cruelty, shouting, “WHY?! Why can’t one goddam thing be EASY?!”
And it really seems that way at times. Whether it’s sleeping issues, feeding issues, asthma, allergies, anxiety, or the inability to communicate, it’s always SOMETHING. Or, as my husband says, “It’s always MANY things.”
In my writing, I try to deflect negativity with humor and hopefulness. But I worry that this may be a little disingenuous, like I’m being dishonest by the sin of omission. Because my anger, in all its ugliness, is very real – it’s the darker side of my experience as a parent.
It’s hard for me to look at this unpleasant aspect of my character. I’m aware of it. I want to change it. I see the way anger makes me selfish, less compassionate, less understanding. Like when I shout, “For the love of God, STOP COUGHING!” to my son in the next room as he wakes me up for the third time that night, for the fourth night in a row with incessant asthmatic coughing. “I gave you both inhalers and your allergy medicine! There’s nothing more I can give you!!”
That’s a pretty stupid thing to say. He has asthma and would very much like to stop coughing. It’s desperation, exhaustion, and selfishness that cause my brain to abandon logic at 3AM – I just want uninterrupted sleep, I want peace and quiet, I want things to be EASY for a little while. At 3AM, I really do feel I have nothing left to give. I’m all tapped out.
And it’s not just the foggy hours before sunrise that push me to the edge. Day to day, I find the pull of gravity to be so much stronger in this universe. Everything weighs heavier on me here. It’s overwhelming and crushing at times. But in this universe, humor provides “lightness”. So does hopefulness. And of course there are always lessons to be learned.
Years of broken sleep left my husband and I feeling like we had been pulled past some Event Horizon of Sleeplessness and were now spiraling into a Black Hole of Madness. So we decided to focus on the root of the problem – our boy’s sleep disorder. We bought a special air cleaner, humidifier, vacuum, and vent filters to help with his asthma and allergies. We got him a weighted blanket and foam mattress pad to help with his sensory issues. A projecting music player gave him something to turn on and watch when he awoke in the middle of the night. And when all else failed, his doctor prescribed medicine that treated his anxiety, impulsivity, and sleep disorder.
You know what? All of these things did not make his sleep issues go away entirely, but they did make the problem more manageable and improved the quality of sleep (and life) for everyone involved.
But what about my anger and guilt? Well, I wish I could say I found some fantastic technique that helped me conquer my frustration and impatience and brought peace and serenity to my life, but that’s not the case. Honestly, the more I’ve read blogs and articles about parenting and the more I’ve talked and commiserated with friends, the more I realized that I’m not alone in my guilt about not being a perfect parent. Special needs or not, parenting in not an easy job for anyone.
So if pretty much every average, typical parent struggles with impatience and frustration, why did I think that my son having special needs would preclude me from having those same feelings?
I realized I had internalized the belief that my son, with all of his special needs and challenges, had been “given to” my husband and me based on some superhuman abilities that made us more equipped for the challenge than the average parent. It was this idea that was shaping my unrealistic parenting expectations.
The reality is I do not possess any superpowers or abilities beyond the average parent. I was not built better, stronger, or faster, like some “6 Million Dollar Bionic Mom”, nor do I possess “Uncanny”, “Amazing”, or “Extraordinary” mutant parenting superpowers like some comic book hero.
I’m just an ordinary mom doing the very best I can to raise an extraordinary child – an uncanny, amazing, and exhausting little boy, who we may find in the future does indeed possess some superpowers of his own.