The Short Bus Diaries » Confessions About Life With an Autistic Son

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Some Thoughts on the Social Contract

WARNING: THIS IS A LONG POST. But these thoughts have been simmering for a while, so I’ve had a chance to come up with a lot of material. ūüôā

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So we really put ourselves out there when we sought out the Huffington Post to share our story (the local Washington Post apparently found nothing interesting about the suspicious logic being used by the Mayor and his education appointees, as well as the stacked legal process DC Special Needs parents face, but I digress…). As of this writing, 2,422 shared the HuffPo story on Facebook, another 7,820 “recommended” it on Facebook, and 1,664 people took the time out of their day to comment on the article. Clearly, the piece “had legs” and struck a chord with a lot of people (10,000+) out there. The Huffington Post followed up with an interview on their online “Live” channel, and will also be putting out an online magazine version of our story sometime in January. So yeah, we are asking for it.

And by “it”, I mean public scrutiny, a robust public policy discussion, opinion sharing, legitimate question-asking, as well as general jack-assery in the form of cruel “drive-by” comments proffered by people who have nothing to lose by quickly stringing together cruel, often nonsensical screeds that often demonstrated that the writer had not even bothered to read the entire article.

Wisely, I took several people’s advice and stopped reading the comments early on–best decision I have made in recent years. Of course, my husband and a few friends provided me with summaries of the themes among the comments. There were some people who could directly relate, others who could sympathize, and there was some guy who healed my son virtually through the Internet by the power of Jesus. There were also people who raised public policy issues that I too might have wondered about, if I were not the parent of a special needs child (but who still had enough respect for the subjects of the article not to call our parenting abilities or love for our children into question).

And not unexpectedly, there were also people who apparently had some crappy things to say. I came home to my son, the day the article first went “big”, and nearly cried when I saw this innocent little boy who some total strangers were willing to leave in a box on the side of some road, and let nature take care of him.

I haven’t bothered to discuss my feelings about all of this because I’ve been doing my damnedest to maintain a sheen of holiday normalcy around our lives during the past month. My daughter turned four and had several variations on birthday celebrations. There have been teachers’ gifts, cookie baking, holiday lights to string up, and holiday events to attend. And I’ve had to get through my annual end of year family photography business scramble. But all of that is behind us, as of tonight. And so I figured it would be smart for me to put finger to keyboard and spell out some responses that have been floating around my head during the past month or so.

1. No, We Cannot Homeschool Our Son

Do you like classical music? If so, why don’t you learn to play the violin and save yourself some concert ticket money? Is the Check Engine light on in your car? Perhaps you should get a book on car repair, crack that hood open, and figure out what the problem is yourself. Does your wife/husband have a strange lump somewhere on her/his body, but you’re not covered by insurance at the moment? Why don’t you get yourself some medical books and a scalpel and diagnose that tumor yourself?

I’m sure that someone will take issue with my comparison of my son’s autism with musical instruments, car engines and cysts, but I don’t really care. As far as I’m concerned, telling me to homeschool a child with severe autism is akin to telling me to learn a completely new thing–something that the rest of the world hires an expert to do. You’re telling me to design a customized special education program and carry it with the expectation that I’m going to be able to successfully teach him anything. My son’s autism is not the type that “virtual school”, “unschooling”, or some how-to textbook and sheer determination is going to take care of. There’s no creative curriculum that I could design that might play to my son’s quirky interests and “learning style”, if he was only given a quiet environment and a more flexible instruction format. I can’t take his non-existent love of trains or marine biology to cleverly build a math and reading program around in order to capture his interest. My son learns best from people who have spent years studying behavior (one might even use the word “psychology” here), as well as sensory processing disorders, and the teaching of literacy and language to people with serious learning disabilities, etc. And guess what? I have degrees in sociology, history, and public policy. Oh, and I’m a photographer. And yes, I know where a semi-colon belongs in a sentence. Nowhere in my years of education did I study any of the specialties that my son requires in order to communicate or progress.

More to the point, I am a terrible teacher (and so is my husband, but I’m assuming that decades of gender expectations/stereotypes about who stays home and takes care of the kids have not changed much among the majority of the Huff Po’s nasty comment writers). And if you’re going to tell me that everyone is capable of teaching, and that a mother’s love can overcome all, and any other can-do platitudes, please take your plucky American “mind over reality” games–and total lack of specific knowledge about my son–elsewhere. We (both you and me) hire trained experts to do the work that can and should only be performed by trained experts. We do not whip out a book and figure it out ourselves when we know damned well what a waste of time that would be, given that there are people much more talented and skilled than us to carry out the required task. And we do not have time to waste when it comes to our son. So I am not about to reverse years of education–and, more importantly–my natural strengths and weaknesses–to magically manifest the type of specialized teaching skills that my son requires.

2. My Son is Not Less Worthy Than Your Child

Like I said, I chose not to read most of the comments. However, one gentleman was kind enough to reach out to us via Facebook to tell us that “the additional income my child earns will pay for that $100k [that he thought it would cost to educate my child at a specialized autism school per year, although that number is inflated by about $40,000], and she has more of a chance to gain a high paying job than most special needs kids”. So what I get from this man’s analysis is that our country shouldn’t waste money investing in special needs kids because his daughter is capable of earning more one day, while my son is probably not. Putting aside the obvious philosophical extension of this argument (i.e., that plenty of non-special needs kids grow up to work minimum wage jobs, become non-salary-earning stay-at-home parents or sporadically employed people who never move out of their parents’ basements, not to mention addicts, criminals and homeless people who take more than they contribute to America’s federal, state and local wallets), I simply cannot believe that I live in Nazi Germany, where eugenics would have simply eliminated my son.

Instead, I’m pretty sure I live in a country that–at least on paper–recognizes the humanity in each of our citizens, as well as the reality that not all of us can pull ourselves up by our own bootstraps, per the American Dream. The fact that this man’s daughter has a higher earning potential does not negate my son’s legal right to an education that–like her non-special needs education–is suited to his abilities. Why does she deserve a decent teacher, but my son does not? Why does she deserve a supportive, non-abusive teaching staff, but my son does not?

My child doesn’t deserve more than your child. And for f$!ks sake, please do not use that overused word weapon favored by many fiscal and social conservatives in this country: “entitled”. My son is equal to your child in terms of merit, social equity, and civil rights. DC special needs students (I can only speak personally about autistic kids) are not getting their fair share–the same share that your child deserves. Instead, these DC citizens with special needs are getting a moldy sliver of education pizza, and we’re being told that this sliver is in fact golden, laden with nutritious toppings, and equal to the organic, locally grown, giant slice that non-special needs kids “with higher potential” get to eat. In response, we’re calling “bullshit” on that claim. It’s just that simple. And either the District cleans up its public education kitchen to feed the guaranteed flood of autistic students coming their way, or they send these kids to a school that can, while they get their house in order.

As for why we don’t move to Fairfax or Montgomery County, there are 4-5 very logical,¬†carefully considered reasons why we have not done so (which would require a completely separate blog post to explain).¬†Furthermore, every time desperate special needs parents flee the District of Columbia, DCPS gets rid of another noisy family whose public question-asking and advocacy might actually result in legal, budgetary, and policy changes that could revolutionize the District’s public schools (and not just result in more kids being sent to private schools).

3. My Child is Not a Broken Toy That Needs to Be Thrown Out

The last major comment theme that my friends summarized for me was the suggestion that my son is too broken to fix–we should move on and invest in people whose minds are judged “sound”. My response to this is kind of an extension of #2 above, but it is the concept of “broken” that I’d like to specifically address.

This post is already too long, so I will spare you a lengthy list of all of the autistic people whose parents were told that they would never talk, never learn to take care of themselves, and to give up and focus on their other non-autistic children. (A few decades ago, these parents were also told to institutionalize these kids, but these sketchy and underfunded public institutions are no longer widely available, and are mostly reserved for the extremely mentally ill who are a danger to themselves and to others. Even in these cases, the government often fails to act before it’s too late). But guess what? There are TONS of autistic people out there who grew up to become self-sufficient, literate, and even verbal adults, thanks to parents who didn’t give up, and to education methods that were appropriate to their learning needs. It’s actually a pretty common story. And even in cases where the autistic person does not become completely verbal or 100% self-sufficient, once these citizens are given the chance to become literate, they demonstrate to the world that there is a brain inside that autistic head, a brain overflowing with lucid thoughts, nuanced logic, startling clarity, and the full spectrum of human emotions (for the uninitiated, please check out Carley Fleischmann).

In a country where 58% of people believe that a two-week old collection of cells in utero is equal to a fully formed, viable baby, it boggles my mind that so many people would practically leave my autistic son on the side of a mountain to die¬†√† la Sparta. From a public policy perspective, it makes no sense that these people would kick the autistic child’s can down the road and choose to save less money now on educating them properly than it will most certainly cost them to financially support these kids–who would ostensibly have no self-care or job skills–for the rest of their lives.

Hmmm.¬† Maybe we should just give up now. Maybe my husband and I should stop feeding and providing medical care for our son, letting him die now and prevent him from becoming a burden to everyone else later. Maybe we should stop caring for low-income people with kidney failure and AIDS, or poor kids who require feeding tubes and electronic wheelchairs, and post-retirement-age, Medicare-eligible adults with other costly chronic health problems. Honestly, we could cut a lot of costs by just getting rid of¬†all¬† of America’s weakest links, am I right?

WTF people?! MY SON IS A HUMAN BEING. Some of you spend more on your labradoodles than you would on my son.

My son is intelligent. In fact, every single day of the week, he does something that demonstrates the boy, the human, and the mind inside of that body. He understands us. He has preferences. He has a sense of humor. He knows who his family and friends are. He follows instructions. He is learning to read (thanks to the private school he is currently attending). He will one day learn to share everything that he feels, thinks, and wants, if given the time needed in an environment suited to his needs. And then, who knows? He might not cost society as much (or even a dime) in the future (and please trust that we are doing everything in our power to set aside money so that he has to rely on city/county/state/federal support as little as possible).

4. Our Contract with One Another

Lastly, my son has breached no social contract that I am aware of. He has broken no laws, violated no social mores, nor has he done anything else that might rationalize these people’s suggestion that we stop investing in him the way we choose to invest in those that are not “damaged”.

Human beings have come together since the days of living in caves in order to stay warm, find food, gain protection, and benefit from the social bonds that membership in a group provides. I have always believed that we start out this life with an automatic membership in the human fellowship and are, by default, connected to each other through a figurative social contract. Sometimes members of our group choose to violate this contract, and they are then subject to the rules we have in place (fingers crossed that the legal system is a modern and fair one) in order to retain or re-earn their membership. If members choose to go AWOL, then the consequences that befall those people are their own damned fault.

On the other hand, there are those people who need a little more looking after. As members of our group, these people may require support and a little extra vigilance–responsibilities under the social contract that you are simply stuck with carrying out, unless you prefer anarchy and unrestrained Darwinism (in which case, there is nothing else for us to talk about). No, you are not a member of my family, and you did not give birth to my autistic child–I guess you won the genetic lottery. Good for you. But you are bound in some ways to my son and to me, and we are bound to you and yours by virtue of our shared humanity. You and I don’t really have a choice in this matter, unless one of us would like to break the social contract.

As a tax-paying, law-abiding, upstanding citizen, I’m doing my part. And so is my son, to the best of his abilities. We do not deserve your cruelty, your disdain for our choice to exercise our legal rights, and especially your uninformed judgement as to who gets kicked off the island. We’re not going anywhere, and f%!k you for suggesting otherwise.

Ahhhh. I feel better for getting that all out. ūüôā

 

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