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Why I’m Lucky To Have A Special Needs Family

Last night I was sitting outside on the porch, enjoying the fresh air and only slightly cool breeze that is a Texas winter, and had a rare, contented moment of thinking, “I love my family. I am SO lucky.”

 

  

For the ordinary person, that wouldn’t be an unusual feeling to have, but having a child with special needs means that sentiment doesn’t fit into society’s narrative of what it’s like to be a special needs family. I should love and be devoted to my family, but I shouldn’t necessarily consider myself lucky.

 

“That’s not true,” you say. “I wouldn’t be surprised to hear someone say they felt lucky in their special needs family.”

 

But way deep down, you know there’s that tiny, dark place where you think, “I feel so lucky to have “healthy” children. I am so grateful they don’t have a disability.” Because to many people, someone with a disability is an “other.” Her child is different from my child.

 

But I tell you, I am lucky. To an extent, most of us special needs families are. This isn’t the part where I say, “We’re not lucky because of the disability, we’re lucky in spite of it.”

 

And I’m not going to run through all the valid attributions of “being lucky to have my child alive” or “being lucky to have a child at all, when many can’t”.

 

What I’m referring to is the unavoidable and essential ability to view things through someone else’s eyes (to the extent that you can). With autism, you must learn very early on how to ferret out the antecedent to a meltdown, or you won’t know how to avoid future meltdowns. Was it a sensory response? Was he overstimulated? Is he coming down with something? Are his clothes uncomfortable? Did the change of routine cause an anxiety overload? You think of little else for days or weeks on end, not because you want to, but because you become obsessed with trying to understand your child.

 

When you’ve finally uncovered that the sound of your hairdryer is causing your child major anxiety, you set about changing the environment so your child won’t be caused distress. Most of us will close doors and get our child noise-canceling earphones. We know that avoiding hairdryers for the rest of their lives isn’t reasonable, but making small, doable changes is reasonable, and you are able relieved to ease your child’s pain by just that small accommodation.

 

In short (lie; this is terribly verbose), you learn how to critically examine cause and effect, and analyze the interactions of different experiences on mood and behavior. Because you have to.

 

This brings me to my hypothesis: most “typical” people don’t have to think in those terms on a constant basis. I would venture that the “average” person goes about their day, giving little thought to whether the sound their shoes make on the tile floor is bothersome to someone, or whether they’ve properly prepared to use their hairdryer.

 

The reason this acquired necessity makes us lucky is because it gives us an enhanced way of viewing the world. You many not understand why that enhancement is as valuable as it is, so I’ll try to illustrate it.

 

Imagine if you worked at a convenience store, and one evening a young ethnic man comes in and holds a gun to your head, demanding all the money you have in the cash register.

 

Now, some of you would try to calmly do as he asks, hoping and praying that he just doesn’t kill you. Some of you might actually try to fight him, or grab for a weapon behind the counter. Either way, no matter which way you responded, you would probably feel angry and want him put in prison for a long time. He’s a criminal. He’s a scumbag who steals from hardworking people instead of getting a job.

 

And maybe he is those things. But how many people would take the step beyond to wonder what conditions came together to make up this man’s life, leading him to commit those crimes? And to have the wherewithal to know that asking those questions, caring about those possible conditions enough to give them careful thought, doesn’t mean you’re excusing the behavior, or the need for a consequence. On the contrary, having those thoughts leads to discussions. And discussions lead to careful inquiry about important circumstances that shape people’s lives, like poverty, racism, classism, disability, gender identification, sexuality, family dynamics, community, and health resources.

 

The next step in this process is to consider: if we know that human beings growing up in certain environments are more likely to have some kind of negative outcome, which ultimately affects society as a whole, then how do we begin making changes right now that will create positive long-term effects in our country? With the knowledge of how conditions shape human behavior, do we reconsider how we approach the big topics we wrestle with as a nation, like wage equality, access to women’s health services, investing in impoverished communities, mental health services, and access to higher education? Do we look at the utter failure of our prison systems to “rehabilitate” criminals, as evidenced by the high rate of recidivism? Do we think about whether spending federal dollars upfront to avoid future criminal behavior by investing in people and their environments, rather than spending it to house them endlessly in prisons that are perpetually bursting at the seams? Do we then apply this advanced level of critical thinking to the choices we make politically?

 

 

As exhausting as it may be to analyze things to this extent, it’s the very reason I feel lucky to have a special needs family. The training I got from my son has given me a lot more anxiety, that’s true. But it’s also given me the ability to think far ahead about the cause and effect of conditions on human beings. And it’s given me the invaluable knowledge that it’s essential to our long-term survival to see the kinds of changes needed to elevate us as a species, rather than remaining unconcerned for those “other” people until they come to us to commit a crime.

 

I am lucky. My life and my thoughts are infinitely more challenging and complex, and it’s worth it. If it wasn’t for my son, maybe I would be someone who thinks we need more guns, more prisons, more walls, more police, more us vs. them.

 

Instead, I’m someone who wants more access to healthcare, more education about diversity, more community centers, more access to housing for the homeless, more benefits for veterans, more mental health resources, more kindness, more love — because I know that these are the kinds of supports that shape positive outcomes that ultimately affect all of us.

 

In this season of holidays and politics, I hope you all find yourself with loved ones that make you feel lucky, while you also consider (perhaps a little differently) what each of the politicians want us to have more of in our country and communities.

 

  
* It’s possible I only followed the first part of these instructions. 

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