The chaos and mania of parenting a child on the spectrum

Invisible Disability

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imagesITL6FHGQThose of us with children on the spectrum, or with other neurological disabilities, or hearing or vision loss, any disability that does not present in a physicality, have likely been introduced to the term invisible disability. It is a shame that we are the only ones that learn it. The term may bring validation to those of us who experience the ignorance and lack of compassion that people have for our children’s struggles, but it isn’t one of those terms that has yet to be widely embraced despite autism awareness entering the realm of political correctness.  Sadly, the notion remains invisible.  At least from my vantage point.images51QM1IOT

Maybe it is a self-perpetuating problem because many of these disabilities are so misunderstood by the medical community. Even by us parents. It is a slippery slope. If people can have “invisible” disabilities, than how can we really define them? How do we identify them? Who can we blame? And how the hell can I stay away from them then? I think it is a frightening concept for most people. No one really wants to think about the possibility of a “crazy” person living amongst them. It is the kind of dirty secret that we have to conceal into the recesses of our minds in order to keep our sanctity of mind. It is strange that people discount what they cannot concretely see right in front of them, when they know full well that what goes on inside their own homes, and their own minds, is not accurately raw and on display. Nor would they want them to be. And maybe that is the point.

Maybe it is the invisible, intangible, deficits that people fear the most. So many of these neurological disorders of the brain are present in deluded form in each of us. How many of us obsess over tedious details, like the way our clothes or folded or whether the toothpaste tube is put back on, or how many of us are phobic about the flu shot, or germs in public restrooms, or how many of us forget our keys or our wallets, or occasionally flake out on a meeting? Are we obsessive compulsives? Do we a have undiagnosed ADHD? Many people have said, “Well, I do that. Everyone does that, don’t they? Does that mean I have a disorder?”

Well, it might. But likely not. It just means that you’re human. We all run off of the same basic central nervous system. I never said my daughter was an alien. It is just that her processes don’t function properly. To an alarming degree. To an incapacitating degree. She is malfunctioning.

I am not sure why this is such a hard concept to grasp. Before we had a diagnoses of any kind for our daughter, people always wanted to know how I knew there was anything wrong. It seems like such a strange question. After our daughter had been switched to a school for autism support, one particular mother finally admitted that she just looked too pretty to believe anything had been wrong.

I think people are actually angry that I am punching a hole in the carefully crafted façade of normal. If normal looking people could be disabled, than what does that mean for me? Or my kids?

It might just mean you are nuts too. Even pretty people can be disabled. And get sick. And have cancer. And get old.

I get it though, this need to believe in this invisible line between normal and abnormal. Something tangible to hold on to. For the longest time I kept asking specialists why, why, why? What does this mean? Why isn’t she walking? Why isn’t she talking yet? They would just look at me and shrug. “It could just be a developmental delay. It could just be where she is.”

So why do I call her disabled then? Well, because she isn’t capable of doing the most basic of things. Of meeting her milestones. Of staying in her grade. Of making friendships. Sometimes I think that people are annoyed that I am asking for help. That I have expectations for her, which I have been told before, by well-meaning people, to adjust. Never mind that sometimes it is by the same people who are fighting for their children to be on all stars, or the honor roll, or the travel dance team.

It seems that they just don’t want people to have special treatment. You are what you are, they might say. You get what you get. Maybe you’re just not smart. We don’t have to treat you nicer. We don’t have to have empathy. You’re not different. You’re not special. Maybe we are just better. It seems that is the point?

A strange psychology isn’t it? It seems oddly phobic. Oddly self-centered. Strangely paranoid and self-serving.

Maybe my daughter is normal after all.


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