Totally Biased and Completely Unscientific
I’ve been thinking of a friend and how much she has made it through publicly in twelve years with her own son who is Autistic.
He is a kid who always draws stares with his loud verbal self-stimulatory outburst behaviors and with his quirky habits and compulsions. With the semi-retirement of her son’s service dog, it has been plaguing my mind with the thought of how”the looks” are likely to increase without the dog there. It’s playing in my head quietly on a little seed of sorrow. Because I’ve seen the craptastic behavior of the public on many trips, even with the dog!
The dog quickly signified that there were disabilities present along with the many other services he provided. Yet, even with that obvious clue marker—in my many travels with her over the years I’ve watched a rude and intrusive public become unrestrained in their lack of boundaries and manners, anyway.
The way people will look at her and her son and the things they feel free to say has blown my mind. My respect for the years she’s spent is immense, my love and hope—my belief in her and her son are enormous. He’s a great kid! If the world were less startled by his screeches and looked but a little deeper they’d see a lot worthwhile in James.
I’ve certainly experienced it myself on multiple occasions with my kid. It’s just that so far–my child seems to be given more leeway because of his younger age. This week we were headed out to do some vacation getaway stuff and I thought; well let’s see about it—I thought I’d track it for myself. I decided to just quietly take note of what I experienced. I’d do a research study. Even if it is only in this, my own, totally biased completely un-scientific anti-social experiment.
We took my four days away in the city. We stayed in hotels and did a lot of things in San Diego. We did many things that any family would while visiting our fine city. In addition to enjoying the beach and marveling over the Coronado Bay Bridge and the jewel of a hotel there, I watched the people who watched us. Of course they watched us, Autism leads to lots of high pitched noises and jerking bodied movements and social and behavioral oddities. We draw stares as if a laser pointer beam from Heaven has landed a dot hot on our noses.
Over that time there were a lot of looks, whispered comments, giggles, and startled stares—stuff I wasn’t so aware that I even noticed much anymore. There were also a lot of people who seemed to quickly “get it” and then look away, I am gratified to say. However, there were also some overt comments from people who felt entitled to insert themselves into my son’s discipline and upbringing in some way.
One woman at Old Town told Neeko to keep his voice down at the mission when he got a few displays ahead of me and he hooted and whooped happily, a time or two. It wasn’t over the top, just his happy interesting sounds. Not that different really than other small children might do with excited words, only he lacked words. Unfortunately, my son lacks words almost entirely in any situation, but that doesn’t mean he has nothing to say. He just has to say it very differently. I am far less concerned with volume than with the fact that he tries to communicate. I did not hear her correct the two or three other age range children squealing excitedly but in words on a few occasions to their parents, as she did mine. That woman missed the similarities to him and his verbal brothers and sisters and a whole unique view of another whole awesome world. It looked like one thing to her but was actually not what she thought she was seeing. But, then how could she know? Maybe she’ll see this…
On another occasion, in another family-friendly area, Nicholas and I were by a communal fireplace. A woman watched my son nervously from a distance as he was popping and clucking and chirping with his mouth lightly and running his fingers along the marble tiles to feel the coolness and the places where the flooring had warmed a bit from the fire. His body would sometimes jerk ecstatically at these tactile sensations.
She looked more and warier every moment. He turned in the general direction of her feet, though would never have touched her. She jerked her feet away as if stung and stood up and told her husband tersely “Let’s go, this place is obviously has become a play area now, people don’t watch their children anymore!” He really wasn’t doing anything—he really wasn’t and I was watching him, I was seated on a love seat a short space away, and she knew I was there; I’d spoken to him several times. He was simply exploring in his own way in a community area and I was allowing him to.
A rough breakdown is this: Boys and girls in their early teens when in groups tended to stare, whisper, and giggle. Adult women seemed more likely to stick to staring, though perhaps looked more startled or shocked as their “bad behavior bells” clanged. Men seemed apter to look away and to redirect children in their groups to do the same. Older people of both sexes often seemed more likely to say something directly to Nicholas or directed pointed statements toward my hearing. People of many different cultural backgrounds also seemed apt to direct comments directly to Neeko, or to ask very upfront personal questions, or to express irritation.
Very unscientific I know, but there you go—that’s the breakdown of how I saw it over the four days we spent in common tourist spots around town. It broke down that way over those four days in a way that follows a similar bigger pattern, more or less, to what I’ve noted over the last three years in Autism-Land altogether.
Today I had my first really overt encounter of the trip. However, as I said over 3 years, it has certainly happened before. On my way out of the hotel, trying to pack everything and keep track of Nicholas a woman walked up and stopped in front of him and stared hard with an annoyed look on her face. He was just out front by our door, not doing anything just humming, and walking back and forth. Exasperatedly I stopped what I was doing to ask pointedly if I could help her. She asked “Why does he walk like that?” indicating his very pronounced high tip-toe gait. Politely—like a patient ambassador I said: “It is part of his Autism.” She looked frustrated at the word and I could almost see the emotional curtain come down hard, I knew she’d heard THAT word before. She gestured toward him again “But, it’s his feet, I am asking about” “What’s wrong with his feet?” I said “It’s a sensory part of Autism” “Nothing is wrong with his feet, it’s a way he’s decided to walk, a habitual way of doing it, it’s very common in Autism–” Again her annoyed look. So I took the plunge. “Why, do you know somebody who walks like this?” I asked.
She told me about her nephew who is NOT Autistic just a twin who is jealous and seeking attention by detaching, throwing tantrums, and refusing to speak. He is just spoiled, but, he DOES walkway up on his tiptoes. She was exasperated because she had spent three WHOLE WEEKS working with him to get him walking right. She had moved in to help her sister un-spoil this noncompliant spoiled twin. It hadn’t worked. She wanted to know, looking pointedly at my son’s ballet feet–she wanted to know, what I was doing. “What are you doing for your son?”
I said “Right now, I am packing to get home—but I hope you have a lovely day. As I turned my back to resume my packing, she walked up to Neeko and said: “Come now, you stand RIGHT!” “This is wrong, stand right, you can do it!” in heavy accented English to him—And my spine went rigid. I finally couldn’t just observe anymore.
I called the experiment off, in the sound of this woman’s self-assured harsh voice. In the face of her total belief in her ability and right to “fix” my son–the observation part got ditched. I am sad to say that until then, I’m not sure I’ve ever really stepped up, not so directly. I did because I heard my heart give a tiny crack and then the shattering of glass–as it broke a little bit more. I suddenly wondered, how many times? How many times had I stood there out of a need to maintain a likable polite face and let somebody bully my kid? What message had I sent to them? What message was sent to my child? What had I been teaching anyone, then? My heart cried–and my body whirled around.
I walked over and I said “No, no—we work with healthcare professionals. We don’t need your help. You may want to Google Autism, although it sounds if you may already be familiar with it. Thank you” and I whisked him into the room.
After reflecting upon this final event in my experiment– it became the tipping point! I thought bullshit! I am writing, my take. So what if it is biased and un-scientific and based on my own experience, so is public opinion! The public gets to tell me, and people like my friend and her son, what IT thinks. You, they—tell me in your looks, in your words, in your rolling eyes and whispered comments. I’ve heard people say they’d enjoy slapping the “screech” (actually a different S word altogether) out of my friend’s son at Disneyland while waiting in line for a ride, for God’s sakes, not from a seat at a symphony! I’ve heard it all. Frankly, I’ve let everyone have their turn. So, now I’ll have mine.
I feel the stares, I am hearing the comments. I realized that I do feel them almost all of the time. I am often trying to stay one step ahead of my kid. I am constantly watching to see what behaviors I might be able to head off, before they start, to prevent my son from instantly becoming the bug under the microscope in the room. I am always seeking to encourage him to be excited and interested in what we are doing, to further develop his social skills, and also at the very same time, to protect him from… you. Yes, you.
If you are a person who’s interested in what you can do to show compassion, and I could suggest a few things, it would be to ask you to try to understand that we are working hard, harder than you have any way of guessing at. When we aren’t working on getting through a McDonald’s visit with good social skills and manners being shown—then we are on the floor in the therapy rooms paying fees by the hour for multiple hours on end for years and years to therapists to do it. Even as we pay out we’re still right there in the rooms working right along with them. I do that, I am not asking you to help me. There’s a lot more going on in a simple hamburger lunch, for us, then what immediately meets an outside eye. When you stare or comment, suddenly it feels like a free for all, over our not so simple hamburger–If YOU too have felt a right to engage in this, maybe you should decide not to. Look away, maybe.
Simply put, choose kindness! Questions are great—but a limit is appreciated and remembering the kid you are talking so pointedly about can hear and also can understand every word you say! It’s also important for you to remember that your limited exposure to my son doesn’t give you a right to intrude personal boundaries and good manners. Your brief encounter with him will NOT destroy your life; it won’t even destroy your experience! The random happenstance accident that got you stuck in a room or an event with my son doesn’t even have to color your experience overmuch unless you let it.
It should though! You could decide to use it to grow yourself into a person of more honorable character if you choose. Because you cannot control people, places, or things—start by understanding that this includes my kid. Instead of trying to control him, maybe try controlling yourself instead. He has a right to be exactly where he is. His experience in our public exposure–whatever it happens to be is going a long way toward his future outcome. That’s true for him whether you’re pissed off about sharing a sliver of your day with him or not. Choose to look away.
If his behavior sours your hamburger, or his screeches and happy flaps make your museum trip a drag, just go home and shake it off and hug your awesome kids that you raised so exemplarily– all that much harder. Be grateful for having had the ability to be the amazing parent you always dreamt that you would be! Be gratified that your plan and all of your dedicated efforts came out exactly as you worked for and expected them to. Be glad nothing got in the way of your determination and strategy and dreams, not a single dimple dampened your grand scheme.
Then, if you’ve a moment left over, in your personal back-patting; maybe then you could give people just like me and my son the benefit of the doubt. Maybe you could stretch yourself in any experience and you could decide it’d be alright to err on the side of compassion. You could try to believe that you might not know exactly what you are seeing; maybe it IS NOT a bratty kid and a bad mom, that you’ve had the misfortune of being seated next to in a Denny’s or at the movies. Mind you I am not speaking about a Michelin 5 Star restaurant or an Opera. I’m speaking of family-friendly venues; this is where you’ll most often find us when we do brave going out.
Maybe you are seated next to a kid and a family who tries really hard to overcome obstacles you know nothing about. Maybe you are seeing a situation that is none of your business at all. Maybe, in fact–your stares, comments, judgments, giggles, advice, and corrections are unwarranted and unwanted. Maybe you’ve overstepped. Perhaps you are vastly overinflating the importance and the accuracy of your perception. Maybe you’re the one who is rude.
Remember, some of us were thrown an extra curveball with slanted odds that are not in our favor. But, it didn’t touch even one iota of our adoration and love for our children who were born with a different blueprint. We aimed for Italy and woke up taxying into Holland, our guidebooks, our plans, every idea we had about what to expect went out the window in an instant. Many of our plans and dreams had to be revised, are still being revised again and again even as we are in motion.
But, our children are still our artwork and our symphony, they are what we pour our hearts into– and all the best parts of ourselves toward, just as sure as your children are a reflection of your best intentions. They amaze us, and we amaze ourselves at the things we find we can rise up and learn to do for such a beautiful life’s work. And they are not in your scope of responsibility. You do not have to love or like them, but neither are you the savior that Jesus sent to judge them, to correct, to figure them out, or to set them–or me straight. It’s not your job, it’s temporary your exposure to my son. You can cope, I assure you. Then if there is kindness inside of you, you could offer a smile or you are free to simply look away. Both are equally as kind in my eyes.
You could adopt this attitude toward anything that isn’t your direct responsibility. This goes for all children, all people, any disability ones that can be seen and ones that cannot be seen, any person with or without them at all—all people– who are not in your control or even your job to manage—choose kindness and compassion for people.
Then, notice away, ask away—just limit your intrusion to a gentle level and be soft because we as parents are in the middle of our packing, luncheons, outings, family times, vacations, teaching moments, loving time spent with our great kids who do NOT need fixing from you, and living our lives too. Yup. We’re just like you. Only we’re learning an awful lot about judgment and awfully fast.
As to Raven and James and slowly edging out retirement of their service dog Comet– and to those of us raising these aMazEbaLLS if also awesomely complicated kids–those with disabilities and those without–those of us loving and raising those delightfully squeaky wheeled kids–my hat is off to you.
My respect goes out to us all. Though we insulate and think we don’t feel it anymore because we are veterans who’ve seen and heard it all. I suspect after what I learned in my own little unscientific experiment, that the extra scrutiny in addition to all the other things asked of us; that the reality of the public faces our kids’ show and the societal judgment of them is a tender hurting thin, for a lot of us. I bet it makes up a more than ample fluffy contribution to the thick layers of padding that add to our clingy-cozy levels of stress and exhaustion. What the public says, and does, the pressure of always feeling that– is just that final extra thick dollop of a whip with a fat red anti-social cherry on top.
We all deserve a break. Everybody does; disabled, typical–or not. Me. You. Don’t you think? That’s my totally biased and completely un-scientific experimental advice. My advice is to turn the anti-social on its head, and instead to create a kinder more inclusive social reality—Peace