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

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Dear Woman at the Park

I was informed this morning by my husband that another mother in our neighborhood – even though she had never met me or even communicated with me via email – did not consider hiring me as a photographer because she thinks I’m “so negative”.  What follows is a lengthy explanation of who I am, if only I could send it directly to this mother.

Dear Mom-Who-Does-Not-Know-Me-But-Judges-Me,

Apparently I bum you out, even though we’ve never met. You probably know of me because –

  • I run a photography business on the Hill that gets discussed – dare I say, recommended – on our local, all powerful parent list-serve
  • I recently spoke out on said list-serve about an ignorant mother who made offensive comments about special needs kids and inclusion classrooms
  • The Hill is a small neighborhood that acts more like a small town, where people get to know people through park-based conversations, whether or not they have actually interacted directly with that person

In response, I offer the following:

My life is hard. I’m guessing that my life is harder than yours (and yes, I know that it can always be worse). It’s harder than a good number of people in our community by virtue of the fact that I have a five year old moderately – possibly low – functioning autistic son who requires ~$50,000 in therapy outside of his public school to bring him up to the level of an 18 month old, where is currently ranking.  I know that you think that you would handle the burden better than me, or at least put on a smile at all times when you leave the house. I am fairly confident that you think that autism is akin to some sort of learning disability along the lines of dyslexia, one isolated thing that should occupy only a small part of a my life, and that I should be able to package this one thing away neatly before stepping into the public sphere.

And with the barest minimum of respect I can offer a woman who does not know me, but who also does not hesitate to judge me, I can tell you that you will never “get it”. And if you spent one day in my shoes, you would look at me with actual respect and think that it is pretty darned impressive that I get up each morning to fight another battle, that I don’t lock myself away in my bed and declare defeat, that I push up my sleeves, work 70 hours a week, pick up the toys, clean up the house, and say thank-you to the barista who hands me that precious steamed chai latte I allow myself once a week.

Do you know what it’s like to live in a home that is battened down like a bomb shelter to prevent my son from obsessing over and accessing things that he should not? We’re not talking about keeping a curious toddler away from the cleaning products under the sink. I mean that if I fail to correctly time the act of taking out the garbage and simultaneously open the front gate too early, I round the corner of my house with my garbage cans and startle to the sight of my barefoot son wandering out into the street at 8pm at night in 30 degree weather, oblivious to traffic, the cold, and the fact that he is leaving his safe home behind him.

Do you know that I have to listen to the footsteps of my son at all times in my house, to ensure that he has not sat down on the toilet without adult supervision? Because if I fail to catch him in time, if I am thinking more about cooking dinner, or putting groceries away than I am about the 10 possible actions my son might take while out of my eyesight, he might smear his poop all over the bathroom and then lick his fingers.  Do you know how often I have to shower my son off completely and throw away his underwear, because the mess is too extensive to wipe up?

Do you know that 75% of the conversations that take place between my husband and myself these days consist of negotiations about who will take my son to which OT/pediatrician/psychiatrist appointment, which lawyer/advocate/non-profit/reporter we will be meeting with on which day? Do you know that at any given minute of the day, I have no idea where we are going to live or what strategy we are going to pursue next in this ongoing public relations and legal battle we are waging on behalf of my son, and that this fight sucks every remaining piece of mental energy I have lying around, after cleaning up the bathroom for the third time today?

Do you know that I have a third job filling out insurance claims, getting Medicaid authorizations for his appointments, and negotiating payments between our providers and Medicaid? Throw in at least 2-3 weekly pleas to public officials and other potential allies in our efforts to save our son before his brain apparently locks down around the age of 8 or 9 to any further interventions.

Do you know that my son does not play with anything, cannot ask for much in this world besides water and a cookie, and instead pushes or drags me everywhere in my home to the extent that I literally cannot rest for a minute in my home when he is not with one of our four in-home therapists? This is because he doesn’t know what to do with himself and cannot be occupied for even ONE MINUTE with a toy, or TV, or a book. So instead he humps, screams, bites my daughter’s hair, laughs maniacally while jumping on the couch, pulls the toaster off the counter, or launches himself in a continuous run between the two ends of our house until he is sweaty and perhaps a tad bit more regulated?

Do you know that when we have guests over, I literally have to physically block my son from their plates and their bodies, because he has decided to obsess over their food, or their neck, and will not be able to stop himself from climbing onto their bodies unless I block my guest into a corner and sit in front of them with a chair? Thus, we rarely invite people into our home, further isolating ourselves from your world.

Do you know that I cannot take my son into any public eatery that is too small or too quiet, in case my son steals food off of somebody’s plate before I can stop him, and I figure out that I am too late, when I hear a woman screaming at him and turn to see the entire restaurant staring at us?  Do you know that I cannot go to most public events, most stores, any libraries/movies/plays and otherwise standard family activities/outings/events because my son will scream/take your child’s cookie/run out into the street/disrupt the performance/not be able to sit in his seat for longer than one minute before we have to leave?

Do you know how weary I am? How trapped I feel in our home, because of autism? How sad I am for my daughter, who will most likely become her brother’s keeper when I can no longer do so?  How painful it is sometimes to see other families doing absolutely normal, non-spectacular things on their Sunday afternoons, posting about their lazy weekends on Facebook, and know that my home is a battlefield and that any bold adventures out in public can be harrowing, embarrassing, exhausting experiences that make that embattled home seem infinitely better than the unpredictable, unprepared outside world?

No, I bet you don’t. And I bet you think you would handle things better than me. That you would have a sunnier disposition and thank your God every day for the food on the table, the roof over your heads, and the fact that you don’t live in some Third World country. And most importantly, you think you would accept this minor “learning disability” called autism, that you would not have your child any other way and not wish that things were different or better, because life’s challenges are learning experiences that make you stronger and yada, yada, yada.

Well I disagree.  I think I’m handling things the way anybody would in my position. And the fact that I can get out of bed each day, take beautiful photos of other people’s children, make an occasional joke, take my daughter to a music class once in a while, and meet another mom for a rare drink every couple of months demonstrates that I am doing a pretty darned good job of handling my life. I’m so sorry if all of this is a bit too “negative” for you. Perhaps you could give me some tips on how to do a better job. Would you like to come over for a play date this weekend?

This is the version of my son that I show the world. This is a single photo out of many others that I discarded. The other 95% of the images captured a boy who looked spaced out, had his mouth half open, and looked in the photos as unresponsive to my requests as he was in the real life, as I pleaded with him for one decent shot for his Valentine’s card.

This is the version of my son that I usually end up with in 95% of my shots. He is not aware that there are any demands being placed on him. His face is dirty. He is off in his own world, unaware and probably not caring about all of the rules and civilities that the rest of us use to get through the day.

I’m probably not doing myself any favors by showing people the first, fully edited, “happy” image rather than actually displaying a more truthful depiction of my son.  But people don’t like the truth. Because it’s too “negative”. They’d prefer the edited version of both my son and our life.  And apparently even my attempts to edit autism from the public sphere and from my social media persona are not as thorough as the woman at the park would like them to be. However, I don’t really feel like apologizing for the truth, and I do believe that I’m done keeping the truth out of your world.

Thank-you for encouraging me to be entirely honest. I guess, in the end, you have set me free, Mom-Who-Does-Not-Know-Me-But-Judges-Me.

Adrienne - February 4, 2013 - 8:18 pm

Well said. You’re kicking ass and taking names and it’s HARD. I’ve been hit with those: you’re so negative; look on the bright side; just enjoy your son! Gag. My kid’s prognosis is lousy and I reserve the right to hate it and to struggle when I need to struggle. But people don’t understand, and worse are the ones who don’t try to understand. Worst of all are the people who judge.

Patty - February 4, 2013 - 9:25 pm

That anonymous woman, in my opinion, is the one who is negative. After all, she is judging you, someone she barely knows, instead of getting to know you. This is a terrific post. So honest and raw and spot on.

Debby - February 5, 2013 - 7:27 am

Aren’t we lucky that we are typically spared interaction with people such as this? Because we don’t have time to judge others’ lives even if we wanted to. Love…

Sunday Stilwell - February 5, 2013 - 7:30 am

I have run into this issue MANY times. I think as an autism parent we all do and I wish that made it easier to stomach.

It doesn’t.

I get tired of feeling like I have to educate the world around me. To make them bend to accept my sons for who they are.

You keep doing what you have to do and don’t ever apologize for it.

Also, let’s have a playdate SOON. Please.

Dorie Howell - February 5, 2013 - 12:50 pm

First of all, that is not a woman anyone would want as a client. So no love lost there. Let her find her “positive” photographer that will give her warm and fuzzies and also mediocre images. You are doing great under the mantle you wear every single day.

Elaine - February 5, 2013 - 3:27 pm

I only met you in person once – when you gave an incredible amount of information in a condensed period of time on photography. I could tell you were nervous about something going on in your home, but even with whatever must have been going on – you were awesome. And your images are awesome. And it is so unfair that someone thinks they can judge you. I wish we could all operate under the framework that every other mom / person / business owner / child is doing the best they can. It shouldn’t be this hard. I hope the world becomes a more accepting place.

K - March 1, 2013 - 4:16 pm

To negative is offering an opinion of your business/ you to your husband while he’s on a family outing. Who does that? It’s pretty hard to think of a socially acceptable context.

Mom-In-A-Million - The Invisible Boy - March 11, 2013 - 9:34 pm

[…] about sitting there with his arms and legs resting on the rope relaxes him and quells the constant stimulus seeking activity that keeps his parents on their toes lest he break something or hurt himself or steal food off a […]

Ellen - March 14, 2013 - 2:53 pm

If you have never met her and never even communicated with her, why do you care so much about what she thinks?

I’m a small business owner, and people choose not to hire me for all sorts of reasons, some reasonable, some completely stupid. It comes with the territory. Some people will like me, some people won’t. That’s just the way it is. It’s a waste of time and energy to obsess over these things.

Maya - March 14, 2013 - 3:00 pm

I actually haven’t been obsessing about this woman, and that wasn’t really what I was getting at, but perhaps failed to successfully convey. The imaginary conversation I had with this woman is a stand-in for what I would say to anybody who has ever judged me as being too negative, whether it’s in a business context or otherwise. In fact, when people ask me how I am, I wish it was appropriate to tell them how I really am, and how my day is really going, because oftentimes I’m having a hard time. But for the most part, people just want to see the nice stuff, hear pleasantries, and not dig too deep into what special needs parenting is really like. In contrast, if all of us special needs parents had the guts to really tell people the truth, it would likely make the other person feel very uncomfortable, either because they really don’t want to know or because they have no idea what to say in response. So this is me, responding like I wish I really could, when similar situations arise [that have little or nothing to do with business].

[…] son’s “version” of autism, as I’ve mentioned previously, is not a small part of who he is. It’s pretty much everything–at least right now. I […]

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