Your soul

It’s Okay To Look My Brother In the Eye, Despite His Special Needs

By February 13, 2016 0
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A few weeks ago, I was in line at the express check-out at the grocery store in my tiny CT town. There were 3 people ahead of me; 2 middle-aged, gruff looking guys, and an older woman, looking tired and rushed after a long day of who-knows-what.

I was busy with my cart and really not looking up at the cashier, just focused on counting how much over-budget I’d managed to go, as usual, on such a small load of groceries. It’s only 12 items, but darn, those things add up.

I could hear the cashier being walked through the ordeal of processing a check as payment (who even does that anymore?). The manager, or floor worker, sounded like a young-ish, patient girl who was showing the cashier the steps. The cashier was listening closely and reciting, “Ok, ok, yes, got it, ok,” in turns after each new instruction. Often, he’d stop and repeat her direction word-for-word, to be sure. She’d reassure him and continue. There was a slight level of anxiety and displeasure in her voice, though, that I just couldn’t quite pinpoint. Again – it’s not the kid’s fault – who the hell pays with a check?

I finally looked up in a brief “What the fuck is taking so long?” huff at the 3 people in line ahead of me, and I was struck by something odd: The 2 men couldn’t even look at the cashier. Their gaze was averted to every other possible thing in the store. The woman insisted on looking down, tapping her foot, and pursing her lips in silent protest.

I thought, alright, this is a small delay, but it’s not all that bad, people—

And I finally turned to the cashier, and I noticed that this repeating, patient man was, in fact, in some way, disabled. The dead giveaway was his permanently-plastered smile on his face. His hair was a little unkempt, and his weight was a tad excessive, but other than those slightly unfocused, squinty eyes and perpetual smile, he appeared completely average.

The cashier finally got the check processed and took care of the last man and the frumpy woman in line ahead of me. He greeted each of them warmly, and they grunted in return. He scanned and bagged their items, and ran their credit cards, and told them both to have a nice evening, and both left with a subtle, poorly hidden snarl on their middle-class faces.

I’m past the point of scenes like this pissing me off; instead, I feel bad for the patrons in line with me, who are clearly so blind to the world that they can’t handle a perfectly capable, though perhaps slightly differently-functioning individual taking care of them at their local grocery store. I popped up to my turn in line and flashed a warm, welcoming smile for my cashier friend. “How’s it going?” I greeted him, passing him my key fob for him to scan.

“Good evening!” he piped back. His smile never faded and he never once actually looked at me. But he rang up my items, helped me back my bags, gave me my change, and I wished him a pleasant day, and he sent me on my way.

The glorious thing I realized was that he didn’t give two shits about my perky attitude towards him. What’s more, he gave even less shits about the dismal attitudes of the narrow-minded townsfolk ahead of me. He went on in his own way, in his own bubble, proceeding through the necessary motions to complete his job for the day. The smile was neither genuine nor forced; it was just there, poignant, unapologetic, and raw. I actually felt like we could all learn a little something from him.

My brother was diagnosed with autism when he was a little over three years old in 1993. He had yet to walk or talk, and he spent a lot of time watching things spin. What kind of things? Mostly wheels; those spinny color wheels on baby busy-center toys, the wheels on trains or cars, or a ceiling fan. He wasn’t picky.

I’m a mere nineteen months older than him. I grew up knowing him better than I’ve known anyone in my life, ever. There was a time, before he was fully verbal and emotionally stable, when we were still young enough to share a room and take baths together, that I was almost the only person who could get through to him. I remember once – rather vividly, though the pretense is a little foggy – coaxing him out of a tantrum by sitting on the kitchen floor with him. Mom was trying to figure out what he wanted for breakfast and he just kept flipping out on her. If memory serves me right, she handed me the box of cereal she had offered him and literally left the room. In the other hand, I had his Velcro chart with pictures of things he could choose to eat. I sat on the floor in front of his crying, frustrated little body and made him listen to me. “Matthew, do you want Kix? Or Cheerios?” I took turns holding up the cereal box pictures for him to choose. He finally calmed down to a whimper and chose, I believe, Kix. I stood up and poured him some in a bowl, and he took it into the living room to eat in front of the TV.

Sitting on the kitchen floor with him is a moment frozen in time in my mind. It wasn’t until I was older that I realized what moments like that must have meant for him, and indeed, what they meant to me. I used to fantasize about my brother being “normal,” about us riding the bus together, getting on each other’s nerves, having mutual friends and real fights about stuff like crushes and play-dates and phone time.

Then, when I was in 5th grade, my parents put Matthew on a diet that could “cure” autism. There were literally reports of very young autistic kids going on a dairy-free and gluten-free diet, and waking up one morning nearly cured of their symptoms. Mood, behavior, and abilities somehow came into sync with normalcy. The possibilities were endless.

I remember crying, suddenly sobbing, thinking that my brother was going to wake up “fixed.” I had nightmares that he would just sit up from the bottom of our shared bunk bed and look at me and go, “Hello, Jess. What’s for breakfast this morning? What a lovely day it is! Shall we have a catch in the backyard?”

Of course, this did not happen, though the diet did monumentally help him balance himself out. Weaning him off his gallon-a-day milk habit was like watching an alcoholic recover from a few bad weeks of binging. He locked himself in his room in the dark with a pounding, throbbing headache, and refused to move or eat or see anyone. And three days later, he emerged a little more subdued, and we started to see the changes: less head-banging against the wall, less angry outbursts, slowly improving communication skills.

So no, my brother would not be cured, but he would certainly be “better,” and that was a blessing, for us as his family, but most importantly, for him as a human being.

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My favorite thing about Matthew is that he hates disabled people.

He thinks people in wheelchairs are lacking because they can’t walk or run like everyone else. He thinks people who are “slow” are genuinely dumb and describes them as such. He thinks kids who punch or scream out of frustration are the worst kind of people, yet he has no idea he used to be one of them, that at some point, the only way he could possibly express himself was to slink down onto his kitchen floor in a sobbing heap with his patient sister and point, helplessly, finally, at a picture of the thing he was seeking.

Or, maybe he has every idea, and perhaps that is why he despises them so.

Matthew doesn’t see any boundaries to his world. He’s an obsessed Twitter and Facebook fanatic. In recent years, he did something incredibly normal and dove head-first into a sick obsession with sports – baseball, football, basketball, soccer – you name it, he watches it. ESPN is on in his room, 24/7. He began following ESPN hosts emphatically on social media sites. He reached out to Bomani Jones from “Around the Horn” on Facebook a few times, and I was a little nervous; I was worried the world would look at Matthew with the same disgrace, disgust, and mistrust as those people in my town grocery store. I took to messaging Mr. Jones myself after Matthew dialed in and appeared on his live-cast sports program online one night. I felt the need to explain and apologize for my brother’s eager attitude and noted that he was merely “a huge, huge fan,” and briefly explained his special needs.

Bomani answered me about three weeks later (easily some of the most gut-wrenching, uncomfortable weeks of my life, as I was worried I’d been cast off as another nut, along with my brother), and among other warm greetings, he said, “I give him credit: most people are scared to ask questions on my show, but he’s not scared even a little bit. If you ever need anything, please let me know.” To top it off, he sent him a personalized note in some fan gear Matthew had ordered from his site.

This was a good few years ago; since Twitter has exploded, Matthew has tweeted something like 4 million times (I’m hardly exaggerating). He began following the hosts of EPSN’s show “His and Hers” like it was his job. Again, I was worried, but one day, he announced to the family, “Guys, I’m going to visit ESPN.”

“Matthew, you can’t just go visit ESPN,” we said.

“Sure I can. Jemele invited me. She said we can come.”

So, somehow, Matthew got Jemele Hill’s email, and invited himself for a tour of ESPN Studios in Bristol, CT, and after some crazy coordinating, the tour in fact happened. It was the kid’s dream come true. The only unfortunate thing is how determined he is to work at ESPN studios, “as the mailroom or office guy,” he says, and how often we try to tell him that it just may not be possible.

But hell – why the heck isn’t it possible? It’s people like Matthew, and Bomani, and Jemele, that have made me realize that absolutely anything is possible. There are no limits to your world. We are incredibly lucky that Matthew is the way he is; he is social, verbal, polite, well-adjusted, and when push comes to shove, can take care of himself very well. He cooks his own meals, does his own laundry, takes care of my parents’ dogs, and cleans the house. He is a sports encyclopedia. He is a helpful, supportive, amazing son and brother. He is capable, bright, and enthusiastic; he is a fast learner, eager to please, and is so, so willing, to be a part of mainstream society.

And yet: there are people like the ones I stood in line with at Stop & Shop. There are people who look at someone with disabilities as less of a person. Often, they only are granted job opportunities if there is a coaching program in place – which yes, is understandable, for liability’s sake, I suppose, but aren’t we all a fucking liability? They are full of great work ethic and seek nothing more than a kind conversation, a day’s pay, and a warm bed at night in their favorite comfort zone of home. I watch the things Matthew accomplishes with great joy. I relish his smile and his excitement. I laud the pathways he has made for himself. I am astounded by the venues he has found for self-expression and coping mechanisms to make the world seem less scary. I cannot believe that this boy who could hardly tell me, twenty years ago, what he wanted for breakfast, can contact a TV personality and announce, proudly and confidently, “I’d like to come visit your studio. When is a good time?”

If I was a better person, I’d be working with children and adults with disabilities, but I realized early on that I am not that precious kind of gold. Instead, I revel in Matthew’s glory and eagerly await his next surprising accomplishment. I’m waiting for ESPN to just come out and offer him his own damn show. Just give him a Podcast, a blog, anything; he’ll do it for free. And I thank, whole-heartedly, all the people that have made his tiny world worth celebrating over the past years—teachers, family, friends, and TV personalities alike.

To any family coping with the needs of a special child, I hold your heart in my heart and promise you that you are not alone, that the road is rocky yet full of possibilities, and that there is always hope. Doctors once told my parents that my brother would stop developing at age 9 – that whatever capacity he was granted at such a young age would be all he’d have for the rest of his days. I’m pretty sure we’ve blown that out of the water, in so many more ways than I can communicate in this short blog post.

And to the rest of you, for God’s sake, throw out a smile and a gracious “Thank you,” the next time someone special helps you at a store, at a diner, or anywhere. If anything, they deserve an extra amount of love, if not a healthy dose of admiration, from every one of us.

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