The chaos and mania of parenting a child on the spectrum

Whose the one without social skills?

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The irony never ceases to amaze me that the people least likely to accept “diagnoses” are the very people who should be given one. “How do you really know?” I have had many of these people ask me, in a very cynical, droll. “Observation,” I want to say, narrowing my eyes in a meaningful way.

Autism diagnosis may be considered new, but spectrum disorders are certainly not. I see them everywhere. The way that kid saw dead people. The way the Wayne’s brothers saw stupid people. I see a lack of social awareness in so many of the adults that I meet that I sometimes wonder if my daughter isn’t on the spectrum, but is just so highly sensitive to other people’s crazy that it makes her afraid to interact with anyone. It certainly does for me.
This past Sunday greeted me with such a strong dose of self-centeredness by another mother, I felt the need to slap her, (of course, in anger), but also as a form of social service. So that she could be aware that someone existed outside herself. The target of my unsolicited face slap, was not just a mother, but the mother of a boy on my son’s team, and a pregnant mother no less.

I had just ushered my very wild child out of her bed, and the comfort of a lazy, warm, last week of summer into the frigid foyer of the hockey rink, where she was forced to meet her arch nemesis: the Boar’s Head ham sign in the rink cafe. The sight of it makes her gag and retch on the floor. She also gags at the sight of precious moments’ dolls, miniature pink baby-dolls, and her brother’s embryo-like jellied alien he got from the gumball machine. Do you see what I’m saying? There’s an intuitive wisdom here.

However, it makes watching her brother’s hockey games an impracticality, as my very wild, sensory laden child was refusing to sit inside the rink where it is frigid cold, or in the dreaded café with the eyes of the dreaded Boars head ham bearing down on her. I had only just entered the rink and turned the corner, when she froze in her tracks and disappeared in a fugue like state of terror. We used to think these were possibly seizures. We are still not entirely sure what is happening. Sometimes her processing disorder, whether visual or auditory, simply requires so much effort to understand something she is looking at or thinking about, she will appear to stare into space. Other times, she is literally frozen, her brain terrified, in a state of such panic that she cannot think or move.

She certainly didn’t register the gaggle of middle aged mothers huddled together yakking away about back to school sales and carpooling. One of the mothers, who I happen to understand works as a teaching assistant, smiled and said hello to my very wild child, who was pushing past my leg and staring into the café with urgency.

This mother smiled gently, and took the lack of response without personal insult or reprieve, but saw it as it was, understanding that it is much more important that she deliver the kindness than to receive it. That on some level, (we are discovering on many levels), the message was processed and received, even if wasn’t responded to.

The pregnant mother, who happens to be the youngest, but also the mother of two boys, also turned to give myself and my daughter and overly enthusiastic greeting. Smiling widely and bending over to speak loudly and concisely, as if my daughter were not socially impaired, but deaf. I most certainly appreciated the effort and the emotions that follow when my daughter ignores such interactions are always embarrassment and sadness, and not anger at the other person. Although, when the person seems to have the expectation of a response, it is hard for me not to feel resentment. As if they are setting us up. It ceases to be a kindness and instead a test, of sorts, that both I and my daughter have failed to pass.

When my daughter kept staring into the crowded abyss of the café without responding, the woman turned to the mother she had been gossiping with and explained to her that she had an autistic neighbor who responds the same way when people approach him. And then she waved her hand in front of her face to demonstrate his glazed over expression.

She did this while I was still standing there with my mouth open, waiting for my daughter to interact. While my daughter was standing there in plain view. In ear shot of her. She did this in front of the two other mothers. Mothers I will see every weekend for the next eight months.

I can only describe this as surreal. As I stood there, trying to figure out what to do, as my daughter’s body was pushed against me in what I recognized as a fight or flight response I have come to recognize, I felt guilt. Guilt for forgetting to prepare her for the Boar’s Head ham, for failing, once again, and allowing myself to regress into a comfortable state of normalcy I continue to feel entitled to. A normalcy others take for granted. Now I had the same internal state of panic surging through my own body: racing heart, shortness of breath, difficulty swallowing, sense of panic, overwhelming sadness, and the need to fight or flight.
It seemed unduly cruel that this mother just turned away from me as if I no longer existed. Just turned her side to me, after waving her hand cruelly in front of her face, and went on to talk about organizing her closets, as if there weren’t a mother and child standing next to her in crisis. It is unrealistic to expect that she could understand the state of duress that my daughter’s little mind and body were experiencing at that moment, let alone mine, but it is sad. It is sad because if anyone should be capable it should be that mother who was at that moment growing a life, and nourishing the complexity of dendrites and axioms and neurons that would make her child capable of the very small, simple action as a hello.

Clearly, she wasn’t capable. She didn’t even understand the hurtfulness of her actions. She lacked the social cues and most certainly the empathy. So when people ask me over and over, how I can possibly know or understand what my daughter struggles with, or what her diagnosis is, I can only shrug and say, “Observations.”


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