All That Matters

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When we think of diversity, we commonly think of a various medley of races and ethnicities to make a population, as it were, diverse. However, in my life, I've defined diversity as not only such a mix, but also to include those with disabilities ' physical and mental.

My only sibling, my brother Seena, was born one year, seven months and five days after I was. And while that fact in and of itself does not seem to hold any value, any significance, I do think it begins to make more sense when I add this: At the age of three, Seena was diagnosed with autism.

Over fifteen years ago, my mother gave birth to her first and only son. He was as quiet as his older sister was talkative, and as unresponsive as she was clever. And three years after he was born, to the uncompromising shock ' but not complete surprise ' of my parents, Seena was diagnosed with the disability that would forever shape not only his life, but ours as well.

Growing up, I accepted unconditionally that Seena was to be largely my responsibility. That is not to say that my parents abandoned him to me and expected me to raise him. Quite the opposite, in fact. My mother spent countless hours working with him, even returning to school to get her Masters and eventually her Ph.D. in Special Education. My father designed a computer called the Learning Station to further aid children with disabilities; for a while he also taught martial arts to them. No, by 'largely my responsibility', I mean that I realized that when I was old enough ' past college, past marriage, past, well, everything ' at the end of the day, Seena was going to come home to me.

I believe that when I was younger, my parents feared I would reject my brother as one of my friends in a similar situation appeared to do to her own autistic brother. They placed me in a sibling group for siblings of children with disabilities and encouraged me to be an active participant in my brother's therapy and upbringing. Of course, in retrospect, I realize that my childhood has driven me to dedicate my life to somehow helping children like Seena.

As I outgrew the weekly sibling group sessions ' which now I realize were meant to act as some sort of a group therapy that I ended up going to just to have fun - my mother searched for a way to further involve me and my brother in the world we were growing up in. He started to attend therapeutic recreation, TREC ' a program for children with special needs at a local day camp. This is where I started my habit of volunteering. I'd go after I was done with my own camp to help out with children. Later, when I began volunteering for the Summer Reading Program at the library across the street, I used the skills I learned with children at TREC not only to help the 'normal' ones that passed through daily, but also any exceptional child and his or her family as well. (Fondly, I remember meeting one mother with a young autistic son who was so eager to find someone who was familiar with autism that she learned my work schedule and came whenever was my shift.)

But, as when I was younger with the sibling group, I have long outgrown TREC at the day camp. Afterwards, I spent my time at a non-profit almost day-care-like organization called Tuesday's Child ' with the same results. Every year since my seventh grade, my brother and I have attended Camp SOAR ' he as a camper and myself as a counselor. Of course, the question comes, 'What is it?', to which, every time, I just point to whatever SOAR regalia I happen to be wearing. 'Special Outdoor Adaptive Recreation. ' Huh?' Special Outdoor Adaptive Recreation ' that describes this camp in a nutshell. SOAR is a weekend or weeklong (depending on what time of year) camp that provides a one-on-one counselor to an exceptional child. At SOAR, I've encountered kids with mild cognitive impairments to severe intellectual and physical disabilities to ' you guessed it ' a variety of children with the Autism Spectrums Disorders. Just this last year, my friend was counselor to a boy with Down's Syndrome, another friend to a child with mild autism, and myself a twelve-year-old boy with the cognitive abilities and mental capacity of a two-year-old. And no, that's not exaggeration, it was in his file.

Inevitably, people ask why I return every year. They want to understand how after all the stories I tell ' for there is always at least one kid who makes you want to never return to camp ever again ' I still return. To that, every time, I can only sit back and smile. How do you explain the look of gratitude on the face of a parent who gets a one week break from the kid they dedicate their lives to, only to return at the end with such relief? How can you explain the counselor bonding over the way we tried to teach one kid how to 'crank dat' and another a handshake? How do you explain that even as I sat there, near tears over a child who soiled his diaper over three times a day when he was supposedly potty trained, I still couldn't wait until the next year?

Let's lay it on the line: I've grown up in Chicago. SOAR is full of suburbians, where I'm usually the only real city-slicker. There seems nothing to connect us through our different spheres and lives. But if there's one thing the camp has taught me, it's that no matter who you are or where you came from, you'll still wake up the next week ' at home ' and wonder why, after being so used to waking up at three AM to the repetitive sounds that your camper makes, he or she let you sleep the whole night through. In other words, we can put aside our differences long enough to let these kids have fun for a week.

And you know what? It works. Somehow, something about these kids draws us back in every year. Not even a full week back from my latest visit, I had two dreams with my latest camper in them. Things like that ' and the pictures, and the videos, and the imitations of the kids that we all end up doing while we're up hanging out at eleven o'clock at night ' draw me back.

Hearing my little brother say he's going to Camp SOAR every year with that silly grin plastered on his face draws me back.

I suppose there is something to be said about human compassion and our ability to love. Even though my first camper made me cry as I called for my parents to pleaseohpleaseohplease come pick me up I can't take it!, I still came back, because I knew there would be another child who was as excited as Seena, another parent who would sit at home for a week and wonder how their child is doing instead of taking a break. Undoubtedly, I will return next year, and the year after that. It's not just a matter of seeing the people I see once a year who I have a bond with that I don't with any of the people I see at school. It's reaching out to the kids who have been such a large part of my life for' well, the entirety of it.

It's seeing them smile even as they say goodbye.

It's the, 'But seriously dude' I MISS ADDISON' text messages that I get at midnight.

It's the feeling of waking up to the noise of nothingness and wondering why it's not three in the morning.

It's the knowledge that maybe, somehow, I've made a difference for even that short period of time in the life of a child I know I'll see back next year.

It would be wrong of me to say that these kids shouldn't be 'cured'. But I suppose, I should give a more stringent definition to such a situation. To the parents of children who cannot walk, who cannot feed themselves, who are fifteen and not yet toilet trained; to the families of children whose disabilities do not allow them a good quality of life, I say, let us go and find something to help that child. Let us together search for something that will ease the difficulties in not only their lives but yours as well. To these families, whose every day is another battle for their child, I applaud their constant search and struggle, their desire to find something to make the quality of life for their child better.

But to the families like mine, to the parents whose child is happy and has a good quality of life, to the siblings who watch their brother and/or sister grow in spite of the disability that holds them back, I say, quite bluntly, forget the 'cure.' Give me a magic potion that could make Seena 'normal' and I'd smack you in the face. Because I will never forget Seena's smile as he sees my parents for the first time in a week after camp. Because he, like the other children who are able to thrive despite their disability, is happy. Because his and the other children's disabilities are just that in name. Despite their labels, these children are not 'disabled.' Rather, they are part of the mosaic that makes our society diverse. In a world such as ours, where in the first time in the history of our nation does an African-American man have a chance as president, and before him, a woman as well, appreciation for diversity is ever-so-slowly becoming the norm. But, growing up in an ethnic family, with an exceptional child for a younger brother, I think it is important to realize that others who are diverse are not so different from any of us after all. Seena responds to love with affection and to nastiness with unhappiness; he laughs and sings and smiles a lot. He likes chicken nuggets and fries and rice, and loves the computer and gets a kick out of Disney. So, just because he's labeled as 'Autistic' doesn't mean he's not human.

If we can understand and appreciate the diversity that all people, including exceptional children, offer us, I believe that the world would be a more unified, happier place. Spend a day in the company of an exceptional child and I think you'll begin to understand.

And in the end, that's all that really matters.





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Marisa17 said...
Apr. 10, 2009 at 4:00 am
I thought this was just an amazing and well written piece. I babysit for an autistic four year old who has just made me, well for lack of a better word, grow up. To hear a story like yours, I find it very lucky for you to have a brother as perfect as yours. He seems like a great person and I am so glad you want to help these kids. I wish you and your family all the best later in life.
 
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