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

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The Defensive Stance

A few weeks ago I took my daughter in for her first dental visit.  The appointment was at Children’s Hospital in DC. This location meant that we would have to park in a large underground garage, take an elevator to a large thoroughfare/lobby area, and walk down at least two large hallways, along with anybody else who happened to be in the hallway at the time.  These details are important for one significant reason:had this appointment been for my son, all of these elements would add up to become a long obstacle course for us to move through.

If I had been with my son, I would have been forced to shift into “vigilance mode”, keeping my body as close to his as possible as we weave through potential temptations and escape routes for him along the way. And the entire time we would move through this uncontrolled, boundary-less maze of opened doors to various clinics, passerby women who look like therapists to him, potentially exposed snacks lying on security guards’ desks, and an infinite number of cords (we were in a hospital – the possibilities of cords and things he could twist and pull is overwhelming to contemplate), I would be scanning my surroundings trying to foresee what he would fuck with next.  When I am out in public with my son, it’s akin to trying to gain ground in enemy territory (or so I imagine, as a woman who has never been in the military). I’m processing and examining every angle and player I can perceive in any given scene in order to spot the sippy cup or meal my son might steal from somebody else, or the piece of garbage (we were in a hospital, making garbage that much more suspect) he might pick up or eat, or the personal space he might violate of someone just minding their own business. I’m trying to pinpoint these incidents before he creates them so that I can apologize and tell one less person that day that my son is autistic.

So back to being with my daughter. The ease with which we can go out in public together is truly magical. In contrast to my militaristic mindset when I’m with my son, I can just be that mom that everyone else seems to be. I can let her wander a few steps in front of me. I can answer her curiosity-driven questions while I too look around me and simply observe what there is to be seen in a bustling hospital. I can relax knowing that she has a fairly solid understanding of the rules and will not do anything embarrassing or dangerous – at least when we’re not near a road (she has still managed to scare the shit out of me by running out into traffic a few times). Other than the fact that we were in a hospital, the ability to walk around casually with my child was a pleasant change for me.

When we arrived at the dental clinic, we sat down in the somewhat crowded waiting room.  My daughter played with the matching game I brought with us. She also grabbed some crayons and paper from the happy teenage volunteers who came to visit each clinic with games and entertainment for the bored children. And we just simply waited for our turn. I could let my guard down and just….be.

Then a middle-aged mother walked into the room and checked in at the front desk.  She seemed weary, a little bit dark (and by that I mean her outlook and not her complexion), and somehow familiar to me.  I had Delilah on my lap at this point and focused on helping her color on paper, while on my lap, all the while missing the fact that a hospital attendant was trying to pull a girl in a specialized wheel chair through the clinic door located next to me. The other mother, however, jumped in to help.  And I realized what I shmuck I must look like, playing with my adorable, healthy daughter, while a significantly disabled girl gets awkwardly dragged through a door directly to my left, without any assistance from me.

And after that moment had passed, I realized that the mom I had been watching appeared to have an autistic son. She asked him to sit down directly next to us while she finished something up with the receptionist. He was 18-ish, minimally verbal, and – obvious to anyone around – clearly “different”.  Now, at this point, my son still looks – at first glance – fairly normal…until he screeches, or chews on his shirt, or walks up to you and takes the cookie out of your hand to eat it himself. But I know that there’s a very real possibility that one day he’s going to have the easy-to-spot face that everyone can immediately assess as that of someone who has a few “problems”.  (Oh, I know, I said “problem” when what I should have said was “special needs”, or “intellectual delays”.  Well…this is my blog, so I get to be as blunt as I like. : ) )

When the boy’s mom sat down, she immediately scanned the game cart in front of us to find something that might entertain him. He seemed to be indicating that he didn’t want anything from the cart, but she ignored him and asked the volunteers to hand her a game or puzzle. She seemed to know what would work for him, even if he didn’t. And then it hit me.  She was me in 12-15 years.

She never once glanced casually at her phone or the wall or the TV in the clinic. All of her attention was directed at her son, what he needed, what he might do next, what other people might say or do next to him. Her eyes darted around the room as she sat stiffly, alertly. I decided to assume out loud what I was 90% certain of already.

“My son is autistic too. He’s just not here today with me.”

She said “I guess we’re everywhere, aren’t we?”.  She asked me if my son could talk (I said “minimally”), and she told me that she’d had luck with a spelling board that allowed her son to spell out his needs. I said “Oh, he reads?”, basically thinking that my son isn’t anywhere near ready to be taught something so academic. And she quickly shot back “of course they can read!”. And I said something like “I know that they’re perfectly capable of reading. I’ve read tons of stuff about autism and know what they can do. I just meant that my son isn’t ready to learn yet. He can’t read. I’m not sure when he’ll be ready to be taught something like that.”

She quickly changed her tone, realizing, I think, that I wasn’t judging her son or autistic people in general – only that I was making conversation and basically admitting that my son couldn’t read and that I was impressed that her son could. She apologized and said something about realizing how she sounded when she snapped at me. I said “no need. I get it. Trust me”. She gave me her card and told me to contact her about some group she’s part of in Virginia. I haven’t yet, because I’m a little burnt out on ASD groups at the moment.

But this exchange stuck with me for the rest of the day. I was not offended that she had misjudged me – negatively – for a few seconds. That shock that she mis-perceived in me regarding her son’s hidden but very real intellect…I understand that she has no choice but to be on the defensive against idle comments made by others who simply don’t/can’t get it. At the same time, I recognized her offensive stance in a public setting in which she needed to ensure that her son was entertained, obstacles were avoided, and that his needs were met. This woman was exhausted, but not able to give up completely. In fact, waving a white flag is not an option for parents with special needs children. This woman’s son was very much alive and kicking, and growing up next to her, and she probably couldn’t do more for him than she already had. I can only imagine the years of schools, therapies and medical bills she had behind her. I recognized the internal bitterness that was squished up right next to her love and reflexive devotion to her son.

It was as if she was playing on a tennis court in the “ready position”: knees bent, feet apart, racket in hand, eyes scanning for the next ball and trying to predict where it might land and what she would have to do to get to it and lob it back to the other side. I’m really not a sports metaphor type of person, but this image is the closest thing I have to explain how I also feel when I’m out and about with my son.  I always have to be ready for the next event that will come flying at me. There is no down time. I can never take my eye off “the ball”.

What scared me most about my recognition of myself in this woman was the very real fact that her son was getting older. And so was she. At the moment, I can still hold out hope that my almost five year old son will calm down a bit and internalize various social rules and expectations as he grows older, and maybe even learn to talk more. But there may come a day when I just have to accept that he will always be significantly “disabled”. In other words, he won’t fit in, won’t be able to communicate or participate in our world to the extent necessary to get a job and live independently. He’ll always need someone – namely me, as my older husband grows older, to be by his side in public to help him get by.  And then, when I can’t take care of him any longer…

Life is exhausting and long. And once you make a few key choices in life, the choices you make after that aren’t really choices so much as obligations – decision trees with fewer and fewer branches to select from. At some point, you’re just stuck walking a single path forever, until you die. I am a firm believer that happiness is a choice for many people, and something that you can get a little closer to with the help of a pill, if your brain needs some assistance in that realm. I want to choose to be happy, and perhaps at a later date, I’ll have the wherewithal to make that choice. But right now, I think of that mother and then see my own life path as simply a very long one on which I have no choice but to keep walking, whether I want to or not.

Older Husband - August 22, 2012 - 3:21 pm

Happiness is more of a choice when the rest of your Maslow’s hierarchy is a little more complete. When you bounce like a pinball between doctors offices and the myriad “treatments” to help our son and vacillate too often between complete despair over our seeming inability to help our son and the slim reeds upon which we, as parents of autistic children, hang our hopes for a brighter future, it is hard to really think about what happiness is…let alone how to achieve it. I try to manage the mourning of the death of the son I was supposed to have and mitigate the pain of watching my actual son struggle with things a 2 year old could easily do by forcing myself to continue to believe that we will find something or somebody to help Max. I know the odds are against us, but, I need to believe.

Happiness is that feeling I’m saving for when (not if) we prevail …

Hang in Maya…I love you and at least we have each other despite our less than ideal circumstances!

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