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

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The Lies We Tell Every Day

You might not like me very much after this post, but that’s something I’ll have to live with. After all, the main point of this post is just that–the truth is not very popular.

I can only speak for my husband and myself here when I say that we lie every single day. We lie because we understand that you don’t really want to hear about it. It’s kind of like when people ask you “How are you?” as a form of saying hello, and you debate whether or not you are supposed to answer the question truthfully and with supporting details, or whether you should just say “fine”, because that is simply what’s expected in this relatively meaningless social exchange.

The fact is that I only post perhaps 1/25th (by my “scientific” estimates) of the reality of my life on Facebook, which is the only social media–besides the occasional blog post–I have time to participate in. Sometimes it’s because I’m just too damned busy (case in point: I had to wait five days before I had a moment to shower about half an hour ago), but mostly it’s because I’m shielding you from the discomfort of hearing about what my life is actually about.

You mean well. You care about the general welfare of my family. If you work closely with my son, you probably care very specifically about the welfare of him and the rest of his family. But when it comes down to the dirty (quite literally) details, most of you don’t want to know. You don’t know what to do with the information. You are at a loss for what advice you wonder whether I’m asking you to give. You can’t relate, although you might try to offer up a gem about the time when Junior peed in his pants that one time at the museum, in a totally understandable attempt to get into the trenches with me. But mostly, you just don’t want to hear about it because it bums you out.

I know this. I know that if I were to publicly document every event that stresses me out all day long, every battle we fight and often lose, every desperate cry we silently make to the universe when the shit really hits the fan at our house, you might quickly hit “like” out of general human sympathy, but that you would really prefer to move onto more pleasant Facebook posts.

Because everyone loves a feel good story of human triumph. Ask any blogger or Facebook page owner which kind of posts earn them the most “likes”, and it’s rarely the totally dirty truth ones. I exempt other special needs families from this little experiment in social network attention; we have our own private Facebook groups where we actually feel comfortable really letting it out, and I am grateful to the IT gods for creating these magical social networking tools that provide families like mine with little safe circles of truth.

In addition, when a blog or Facebook page starts to attract actual attention, the self-censorship really starts to increase. What starts out as an exercise in journaling, in that strange semi-anonymous-yet-totally-public-therapeutic way that most personal blogs are launched, eventually shifts into a carefully planned magazine-like article that tries to walk the fine line between truth and consideration for which total strangers on the Internet you might offend. Fortunately, the HuffPo and all the other major blog syndicators have never come knocking at my door, so I am not officially required to make my posts more appealing to the masses, although I have found myself unofficially editing my own words into paragraphs of inoffensive vanilla, nonetheless.

Here’s another uncomfortable truth: my husband and I have come to the conclusion that various business deals and friendships have withered or come to a dead end–not because we can’t hold up our end of the business/friendship deal (because you have no idea how hard we work to keep up appearances), but because again, we bum people out. In our public interactions, you better believe that we are extremely careful and rarely share much of the real truth about special needs parenting. But you might get a brief glimpse behind the wall when we are running late or have extra dark bags beneath our eyes, and you decide that it’s simply too hard to maintain the relationship because you assume that we have other priorities that distract us from our work or from social pleasantries. I don’t know why you disappear. But you do. And that is why we lie.

Even my own extended family is guilty of the “autism-pivot”. A few nights ago, the direction of the conversation somehow led to autism (oh yeah–I think it was a snarky comment about the Handwriting Without Tears program, which we are trying, and why would handwriting actually cause children to cry?!). Somehow, I found myself describing at a very high level the ridiculous online war* going on between autistic self-advocates and autism parents, because I have realized that most people have no idea that this sort of thing goes on. But then, three sentences in, I quickly noticed everyone’s eyes glaze over at the dinner table. Two sentences later from my niece and nephew and we were off on a completely different topic.

They didn’t want to know. It’s not pleasant to contemplate. So I moved on, right along with them. Except that I had to go home an hour later to the subject matter that they didn’t want to hear about.

There’s a lot of pressure here on Capitol Hill, where my family lives, to project normalcy and success–not success in terms of status symbols and perfectly made-up faces (DC is far too conservative and self-conscious for that kind of thing). Instead, the pressure comes in the form of projecting an image of having one’s shit together. You are well informed about local issues and participate in the various neighborhood meetings. You shop locally for every single product you can think of. You feed your children a meal every night that was either delivered by a local business or constructed from a locally-sourced farm share. You help plan the ever-looming school silent auction and you always have a local referral to make about the absolutely best local business ever on the neighborhood list-serve. You know what’s up. You’ve tried it all. You have a system for everything. You show up on time. You participate. You contribute to your community and you make sure that everyone knows how much you contribute to your community. Forget BMWs and big houses: in DC your public image can best be measured by how well organized your shit is and by what a loyal and well informed local citizen you are.

Well here is where I wave the white flag. We pay our bills and our house is fairly clean. Our children are well looked after, loved, and educated. But I buy everything I can on Amazon because I don’t have a minute to spend on participating in the delights of my local community (unless it is carefully staged and I’ve got child-care covered for 45 minutes). If I could get away with ordering in every night (pizza, Chinese food, and anything non-organic I can get my hands on, I will. And our cabinets are teeming with junk food. There’s some of the truth that you could probably discern by simply standing in the doorway of my house.

But the more specific truth is that we have to unlock our cabinets every single time we want to give our children some of that junk food. Because if we don’t, my son will tear open that bag of chips and stuff it down his throat until he is choking.

And my floors are clean because I wipe down them with healthy, bleach-soaked, completely non-organic wipes every day because my son pooped on them 7 days in a row last week, even though we begged and pleaded with him to use the toilet.

But you probably didn’t want to hear about that. You don’t know what to do with that information. Understandably, it makes you a little uncomfortable, and you’re not sure what to say next.

So that’s why we lie. That’s why we stay mostly silent. Because the truth might bum you out.

And while we are tired of losing friends and business deals, we are also tired of lying by omission.

However, this post isn’t some manifesto announcing the launch of some new daily truth-laying on Facebook–don’t worry. But it is a confession that the honest answer to your “how are you” question to us is probably longer and more detailed than you’d prefer to hear. I suspect it’s this way for most special needs families out there.

The truth is that my family lives on a little island. We occasionally take a boat to the harbor where everyone else seems to exist, but we do our shopping quickly and then we get the hell out before anyone asks us too many questions. We are afraid that one day we might actually tell you how we really are and that one day you might stop asking altogether.

 

* (Many loud and uncompromising self-advocates apparently feel that autism is just a “third way” to be in a neurodiverse, and that the efforts of parents to secure better respite and mental health services for special needs families, as well as find ways to mitigate the life and learning problems associated with autism, is akin to suggesting the euthanasia/murder of autistic people.)

Julie S - June 19, 2014 - 1:01 pm

Yep, yep, yep, and yep. I’d like to guarantee that things will get better, but no one can guarantee that. I went through many of the things you describe when my boyz were younger and the isolation is still a huge part of my life. Many of the other things (poop smearing, breaking into food cabinets, climbing the furniture and breaking it, screaming tantrums and punched through walls) have abated. At least partially. Feel free to contact me on Facebook, Google or regular e-mail (julies3334@gmail.com) if you ever want to vent about reality. Hugs and hoping tomorrow is a better day.

Suzanne - June 19, 2014 - 9:35 pm

Yes yes yes. Everything you say is true. It can be a world of isolation, half truths and trying to keep up appearances. Hugs to you. This is a very brave post.

D. - June 20, 2014 - 12:55 am

Thank you Shortbusdiary for the above post which validates something I’ve struggled to accept for years. The next time I see family members who inquire of my autistic child because I’m standing right in front of them instead of ever calling; I’m going to tell them, “I get it, Aunt/Uncle/Cousin So & So. We bum you out.”

Vicki - June 22, 2014 - 10:49 am

I love you guys no matter what the “truth” is!!! I know I may not understand all that your’e going through & live so far away to be able to be of much help to you but you can count on me if there is something I can help with & you are always in my thoughts & prayers! Thanks for writing these blogs so I can understand more about Max & what you guys are feeling & doing! I love your pictures too even when you say they’re not good pictures for various reasons! I give you guys sooo much credit for all that you have gone through & done! Keep up the awesome parenting job you are both doing with all the challenges you have had to face. XOXO

Our Time at the Horse Boy Ranch

Over Spring Break of this year, we went on an “epic road trip” (the use of the word epic usually makes me cringe, but in this case, I’m going to declare that it applies). To save money and to hit various spots along the way (including Birmingham, AL and New Orleans, LA), we drove from Washington, DC to Austin, TX. Crazy, I know. But strangely, everyone in my family has become quite accustomed to long road trips. Just ask the much loved/abused carpeting in our minivan–it’ll tell you. My son does surprisingly well in the car, especially now that he is interested in games and some video on the iPad. And my daughter will happily zone out for eight hours straight to episodes of My Little Pony and Scooby Doo on Netflix. We just need to make sure that we stop occasionally at filthy gas station bathrooms along the way, and fill the children’s bellies with Sour Patch Kids and McDonald’s, and we could probably drive to Alaska without much trouble.

The only wrinkle in this trip was the sudden case of pneumonia I came down with on the way there. Thus, I want to add a disclaimer here about the photography you are about to see: most of it was taken during the time of day at which the Texas sun was straight above us (i.e., the absolute worst time of day to shoot–but I didn’t really have much control over the timing), when I wasn’t really particularly engaged–mentally speaking–in what was going on around me. I was there physically, but my body had decided to turn off most non-essential functions, including my ability to make good photography choices. 🙂

Anyhoo, the reason we went down to the Austin area was to visit Rupert Isaacson’s ranch. I couldn’t possibly summarize everything Rupert and his Horse Boy Foundation do, so please go here to read up on everything. My husband first met Rupert at an autism conference that our friends, Julian and Michele, at Kulturecity had organized. My husband came home totally inspired by the idea of creating a “tribe” around our family, one that kind of already exists, to some extent. This tribe includes those people that work with our son (the OTs, SLPs, teachers, etc.) and the people that just “get it”. In other words, by creating a smaller world of people who are collectively working to help our son become the best human being possible, and by simultaneously rejecting the expectations, definitions and standards that we play by outside of our tribe (i.e., the usual special needs family story of education-related struggles, rejection, failed efforts to fit in, misunderstandings by others, and the head-banging-against-the-“normal”-wall daily experience of living in the outside world), we could live a much happier life. Essentially, by creating a tribe, we create our own world in which weird and atypical are the norm rather than something we constantly have to define in opposition to the lives that everyone else appears to be living around us–at least, that’s the way I’m interpreting the concept of “tribe”.

So we went to Rupert’s ranch to see how he does it. He has an autistic son (you can check out his various books and documentary), and has created a world in which he and his family have found happiness and developed educational methods that are customized for their environment and his son’s learning style. In addition, Rupert likes to share the love, and also welcomes visitors from all over the world who are looking to bring the Horse Boy riding methods back home with them. Rupert and his team have developed riding methods (see my totally unprofessional video here, where Rupert describes how the horse-riding style triggers certain chemistry in the brain that is conducive to relaxation and learning) as well as non-horse-centered teaching strategies. While we are not looking to buy a horse, we wanted to check out the whole Horse Boy package and see what we could incorporate into our own lives back in DC (where I don’t think I need to state the obvious–that we will not be keeping a horse in our back “yard”).

So here’s the man behind it all.

And here is the house where several members of the Horse Boy tribe live. Like I said, I was pretty out of it on my first day there, and a little less soon the second day, but I’m pretty sure that  during our first few minutes inside, I was offered chili and sat down to eat it while some sort of African goats, a dog, and some other creature by the name of Rigby who was adorable, but the species of which I have not a clue. There are not a lot of boundaries between the outside and inside world on the ranch, as far as I can tell, which makes it kind of a paradise for kids like mine. My daughter could not believe her luck—-goats and Rigby’s in the house, and giant dogs that she could lie on top of like a rug.

This is where Rupert’s son receives some of his indoor school lessons (a lot of the outdoor ones take place on the trampoline, among the animals, or in the Austin area). Jenny, a member of Rupert’s team/tribe, works with his son to craft a curriculum that combines elements of more common age appropriate lessons with the boy’s interests. They have a whole methodology related to learning as well (click here) for parents and schools.

The walls of the ranch house were covered in posters made to illustrate the learning themes of the week.

Step outside the house, and  prepare to cross paths with a giant—-but friendly—-pig, as well as a motley collection of other creatures.

On our first day there, I was too weak to pick up my camera, and I do regret that, because I missed capturing my little boy covered, head-to-toe, forehead to chin, in mud. As I laid half-dead on the couch inside the house, my son was running around the grounds under the eyes of Rupert’s tribe, getting wild, filthy, and happy. The second I put him in clean clothing, he ran right outside and jumped in a mud puddle all over again. I quickly realized that I didn’t bring enough fresh clothing to get us through the remainder of the day. I also realized that I was just about the only person there who minded that he was covered in mud. And licking my finger and wiping off his cheek was not really going to make a dent. 🙂 The following day, I came across his clothing, which had been left outside to dry.

You could literally stand up his pants on their own, they were so stiff. I probably could have broken them in half.

When you visit the ranch, they work hard to make it fun for every member of the family, especially because kids like my daughter start to become quite jealous of all of the special treatment that their siblings receive. There are swings, caged mice, wild animals, tolerant staff, mud puddles, instruments, see-saws, bubbles, and general silliness. Siblings also get a chance to ride the horses as well.

And here is where the magic happens. In fact, local families visit the ranch every week for customized lessons–not only in horseback riding, but in academics as well. Employees/tribe members set up clever ways to teach math, for instance, to children while they ride on a horse.

So after Ileane (pictured above) worked her Horse Boy magic, my son nearly slid off the horse in a puddle of mellowness. Check out my [not] awesome video capture here. He could have fallen asleep on the back of that horse. It was bizarre how jiggling his body on the back of a giant beast (sorry, but horses scare me just a teensy bit) could actually make his brain sleepy rather than…jiggled.

He went from this…

to this.

It was pretty remarkable to witness, even in my pneumonia-induced haze. Our time at the ranch left us with a lot to think about. Then again, being autism parents always leaves us with a lot to think about.

And yes, even though my daughter complained that I didn’t take any photos of here, indeed, I did. And she even got to rub her face in a dusty horse mane for an extra sensory experience. Because in our tribe, sensory experiences are everything.

And then, we drove home by way of New Orleans. Damn. That was a long trip. But well worth it.

Lacey R - May 20, 2014 - 11:53 pm

Wow, Maya! This sounds (and looks) like a truly remarkable place!! Hope you get to go back someday–and aren’t deathly sick the next time around!!

Jill - June 4, 2014 - 3:34 pm

Have you visited: http://www.horsesthatheal.org/

Our girl scout troop learned about this program from a guest speaker (wounded vet) who receives treatment there. It seems like a fabulous program.

How Quickly Remarkable Shifts to Normal

Before I get too far down 2014, a year that has started out with an exhausted, unmotivated version of myself, I figured that I should catalog, in prose form, where we are in our “Autistic Life”. If I wait any longer to document this particular moment, it will quickly melt into the daily landscape of our lives and I will one day be unable to specify the point in time at which my son started taking visible steps toward the world that the rest of his family occupies. Maybe one day, I will hardly remember the actual distance between where we were and where he was, because we will all be walking around the same daily circle, together.

My mother recently came to visit us. She had not seen our son since Thanksgiving of 2013, which meant that she essentially closed the door on one version of him in November 2013 and opened it to the new and improved 2014 model. Given that I am deliberately non-optimistic in order to protect myself from disappointments, I was tickled to hear my mother say that she was looking at a completely different little boy than the one who had been running aimlessly around her house last year. (By the way, by “non-optimistic”, I should clarify that I instead choose to simply occupy the here and now: I don’t think about what could be in the future; I just observe and fully participate in what’s in front of me, continuing to take my son to his various therapies and implement the latest behavior protocols at home. If he improves, WONDERFUL. If he doesn’t, well, at least my heart wasn’t set on an engaged, talking, interactive version of my son that never emerges.) She couldn’t believe that our son was so calm, that he could sit in her lap and work on a spelling and writing game on the iPad for five to seven minutes straight. She was pleasantly surprised to watch him eat asparagus, rice, and something other than chicken nuggets, given that he had essentially only eaten fruit, french fries and fish/chicken nuggets for the past four years.

It was during her stay that I realized how quickly what once seemed unattainable (sitting still for learning and eating, showing interest in the iPad, watching a few blissful minutes of TV, picking up books to page through them, etc.) suddenly seems revolutionary the moment he achieves it, and then quickly merges with the other unremarkable, absolutely ordinary occurrences of our family’s life.

For instance, here are a few “whoo-hoo” moments I shared on Facebook somewhat recently:

Mind-Blowing Moment: http://www.youtube.com/watch?v=-AsAssNruGk

This was the first time I witnessed any sort of interaction between my children since my daughter was a baby (when my son would run up to her and kiss her, saying her name with his little kid pronunciation and telling her that he loved her. He also used to stop her from getting too close to the street, when the were out walking, say “No, Baby, no!”). This moment was remarkable because of my children’s physical proximity to each other, their shared interest, and the fact that my son was determined to watch something on that iPad. (Apologies for my half dressed daughter; capturing the moment was more important than putting clothes on her. 🙂 )

These days, I am desperate to find just the right iPad apps for my son, because he is swiping his way quickly through the ones that sat around, untouched, for almost a year. We actually have to take away the iPad because we are supposed to be encouraging him to show an interest in other activities. THAT is how much he likes the iPad. And that is how unremarkable these moments have become.

Every Day Occurrence: http://youtu.be/YB0COSq1qWQ

Also towards the end of 2013, my son started to briefly stare at a few pages in the Where’s Waldo book series. The moments were fleeting (~30 seconds long), but I nevertheless ordered every single one of the books in the series, just in case. (The second my son shows interest in anything, I order 10 versions of it in every color.) In early January, his teacher emailed me to announce that he had walked over to a book shelf, taken down a children’s cooking book, and sat down on the floor to page through it. I was ELATED. He was voluntarily looking at books. Maybe he could actually learn to read!

And now I find myself reading emails on my cell phone, while he casually leans back on the couch to flip through a book, because his interest in books (while still limited to pictures only) is so quotidian that I scarcely celebrate it now, I’m embarrassed to realize.

Then there’s the progress on the self-containment front. Yesterday, I was proclaiming a whole new stage in our relationship with the outside world, after taking my son to the grocery store early in the morning. After assessing that the grocery store was fairly empty at 8am on a Sunday, and diagnosing my son as being in a mellow mood, I decided to throw caution to the wind and let him walk BESIDE me at the grocery store, instead of riding inside the shopping cart. And nothing bad happened! He didn’t bolt into the stock room, he didn’t steal a donut from those unlocked cases, and he didn’t walk up to take the hand of a stranger (which is still cute now when he does it, but is liable to get him pushed/punched when he is a grown man with no visible disability, who does that to another stranger in public). He listened to me when I told him to stay close, and he immediately put a bag of chips that he wanted–that I did not want–back on the shelf, when requested to do so (a totally normal junk food demand from a six year old boy at the grocery store). I practically squeezed my son to death with hugs and kisses afterwards, telling him how proud I was of his behavior.

Maybe we could even try going to a coffee shop again, and I could actually relax for a moment and get out of my “battle posture”, in case he decides to steal a cinnamon roll from a woman who then begins to scream at full volume to the entire coffee shop “WHAT ARE YOU DOING?!”, after I dare to take my eyes off of him in order to zip up my daughter’s coat (not that that particular incident ever took place…). Perhaps one day soon, we can go out to eat as a family, without leaving as quickly as the food arrives, in order to avoid any incidents. I can smell freedom!

However, when I announced this “new” development to my husband this morning over breakfast, he told me that he lets my son walk alongside him all the time now at Home Depot and Walmart, and that he probably should have told me about it. Honestly, my husband’s response was so ho-hum that I felt a little deflated, thinking I had been the first person to discover my son’s new skill.

Instead, what I really should take from this set of milestones (everyday events for most families — but not ours) is how quickly they become as unremarkable as simultaneously switching lanes while driving the car, singing along with the radio, and wondering what to make for dinner tonight. As quickly as they make me want to shout with joy, they shift into the “yeah, so anyhow” category. Looking back, even over a period as short as four months, it’s hard to remember when these new skills first emerged. This is not necessarily such a bad thing — it’s just life.

I suppose that’s how it is with all of the usual childhood milestones–sitting up, crawling, walking, talking, potty training. I still struggle to answer doctor’s questions, when they ask me to recite those key dates for my son, because these appeared at such a relatively normal rate during his first two years of life that I didn’t store the dates away for future use. Similarly, it is hard for me to define at which exact point my son lost two of those skills, without a few guideposts for context (which school he was attending and which therapist/doctor we were working with at the time). I still get unexpectedly smacked over the head with random memories of my son asking me to tickle his neck, or of him shouting “goodnight” from the top of our stairs in the normalist of normal parenting vignettes…although I can’t quite remember the moment at which he stopped being able to talk altogether. The before and after boundary eventually became smudged, without me being aware of it.

So I am writing this rather rambling post in order to record these things, somewhat officially (because if we don’t announce something on the Internet, does it really happen in real life…?), before I forget when they actually represented turning points in our lives.

It’s not as if we’re out of the woods yet. We’ve essentially given up on pushing my son to speak again. He once did, and perhaps he will again. But we now have faith that he will learn to communicate in other ways, and are getting ready to launch a home-based reading program, along with the one he is doing in school. And the potty training skill that he once mastered before his peers? Never underestimate how quickly one can acclimate to the sensation of having someone else’s poop on your hands. 😛  Also, as my son realizes what he wants to communicate, but cannot yet find a way to do it so that he is understood (i.e., “I’m tired, but don’t want to go to bed”), pre-bedtime tantrums have definitely become “a thing”, in contrast to the mellow boy he is during the day. These events usually require me to takeoff my glasses and protect my face and body from his angry, random flailing.

Perhaps one day, I will put my hand on the shoulder of a fellow autism parent and tell them that we once struggled with “that” too, and that it will get better. And when they ask me about the exact age/moment my son started being able to do “that thing”, I won’t be able to pinpoint exactly when. That might not be a helpful response to a parent who’s currently struggling–I realize that. But at least I will be able to confirm that it is actually possible to accomplish this thing, something that I never let myself contemplate before I actually see it with my own eyes. I just need to appreciate these things when they are new and exciting. That will have to be good enough.

Love this quote for that very reason, and that’s why I put it in our holiday card:

“I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'”

― Kurt Vonnegut, A Man Without a Country

And now for some happy photos!

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. 🙂

***********

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 à 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. 🙂

 

My Boy is Super

As I’ve mentioned previously, it’s not always easy to get great images of my son, despite the fact that I am a photographer, and–more importantly–in spite of his beauty.

Yup, I said it. He is a beautiful little boy. His face may be scratched up (he’s kind of rough and tumble and has a very, very high tolerance for pain), and there may even be some leftovers from lunch on his chin. But he is a good looking little man with especially beautiful eyes.

Given his autism, his medications and the amount of sleep he got the night before, it’s not always easy to predict which days would be best for a photo shoot. Sometimes he’s spacy, sometimes he’s present. Sometimes he’s just quiet and wants to be held (not so easy at over 50lbs), and sometimes he is wild and happy.

I always feel a little bit anxious when I am preparing to photograph him because of the unpredictability of it all. I need someone–like one of his therapists–to come with us and get him running–which is the easiest way to wake him up and get some big smiles, or to lift him up somewhere where he can’t easily climb down (so that I can quickly grab some static shots of a boy who otherwise literally. doesn’t. stop. moving. EVER. It takes a lot of energy on the part of my assistant, because I will ask that person to do something again and again in order to ensure that I get some good [sharp, well exposed] shots of a boy whose most photogenic facial expressions might show up the moment I put the camera down. And, given that my son is literally running in and out of the sun and shade, I am constantly praying that my camera settings are correct at the moment when he is looking at the camera and/or smiling.

In other words, it ain’t easy.

So when I get great results, I must shout it from the top of the Washington Monument (or the tower-formerly-known-as-the-Sears-Tower-whose-new-name-is-never-to-be-acknowledged-by-true-Chicagoans). You nailed it, my boy. NAILED IT. Mommy thanks you.

Happy Halloween from my Super Boy!

Julie Sparks - December 13, 2013 - 4:30 pm

He’s beautiful and so are the pictures! He obviously liked wearing the costume and being outdoors!

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