Yesterday was World Autism Awareness Day. I was asked to be the guest speaker at the event. Late yesterday afternoon, Troy’s older brother, send me a post to put on our Autism Facebook page. Here it is in it’s entirety:
From The Brother You’ve Always Had, To the Conversation We’ve Never Had
It was 19 years, 6 months and 4 days ago that my brother was born. He was born with the name Troy Marshall Fountain. Only 14 months younger than me he is almost as close to me in age as siblings can be. Disregarding a theory of relativity, time would truly seem relative to all those relatives that knew my brother and I. My parents, grandparents, aunts and uncles and anyone that knew us would over the years would watch time separate us. Though 19 and half years old, my brother has never spoken a word, never made a meal, never gone to the bathroom alone, never called a friend over, never spent one hour truly by himself. This is because my brother is diagnosed with GDD or Global Developmental Delay, my definition of this condition is the equivalent of a doctor saying “He’s slow in every way and we don’t know why”.
You can probably only imagine the effect that this has had on those who have been around him his whole life. I can only guess that it was my brother that was the cause for my mother only having 2 children. I would suspect one of the main reasons for my father’s drinking which in turn ended their marriage. If being a parent is truly the toughest jobs in the world then my mother is one of the greatest ever with facts to back it up. She has been the parent of a child no more independent than a 2 or 3 year old for an extra 16 years and she does it all in the face he will grow up and never truly be anybody to anybody other than us. I’ve watched her sacrifice a social life, a life filled with vacations, a promising corporate career and most importantly her certainty of happiness all for a love that is shown through temperamental emotions and without words.
As a brother, I can’t express the difficulty of being 6 years old and being explained that the brother you love more than anything in the world is not normal, will never talk to you, will never run with you, will never punch you when you’re being an asshole, will never tell you to man up. Maybe this is an exaggeration of memory but around age 11 when my parents separated, I truly became a parent, I was left to fill the void my absent father left, to become man of the house and a father to my own brother while my, now single, mother was out working to provide the best life she could for us. It was a heap of responsibility for one so young. Now that I live with a merged family that can split up the work load of taking care of my brother, I can only theorize that I now run from responsibility to avoid being stuck where I was years ago.
Despite being told my whole life that my brother being the way he is will never affect me, I will always live in the fear that if I were to have a child that the child would turn out the same. Even though I live every day second guessing my choices or lack thereof of not having a child, I can’t truly put into words the way that this fear affects my psyche when I look towards the future. When I feel truly cynical, I have lived with the pain of second guessing if I too am handicapped in some way. Even in optimism, told all of my life how I am so smart for my age and have so much potential despite my lack of drive, I can only wonder if fate, luck, god or science has blessed me with an abundance of intelligence and left my brother “empty handed”, so to speak, for some purpose I can only guess at. I hate to use this expression but it is the one that speaks truest to me, I have grown up with half of a brother. I have watched him grow at the same pace as me in age and age alone.
Maybe I’ve run out of things to say or maybe my nerves have caught up to me as the spontaneity of writing has lost it’s passion, in the face of sharing this with the world. Here nor there, that is as much of my story as I’m going to share. I didn’t share it for pity, I know my family and I are not the only ones who live in some kind of hardship, which is something that I think is hard for anyone to keep in mind. I did not share it for compassion, because compassion is something we all deserve equally. I shared it because today April 2, 2013 is Autism Awareness Day. All around the world people will be “Lighting it up Blue” in honor of this day, to acknowledge the efforts of those born with and those who care for those with, autism. Places like the Empire States Building, the CN Tower and Kingdom Tower have been lit up blue in the past and today if you see any blue lights on a house or building, I just ask for 5 second of your thoughts. Five seconds to think of the estimated 48 million people with autism on Earth and their families, to think of the 1 in 88 children in the United States that will be born with autism in the coming years, of the quarter of a million homes affected by autism in Canada. If you or anyone you know has been touched by autism come to the Forks for 7:30 for a short walk to the ledge and hear a few words from some guest speakers. An hour of your time would make a lifetime of difference for some of these families, my own included.
It has been a long time, since I saw Troy’s older brother proud to be his brother. I saw this yesterday. Half way through my speech, he decided he wanted to speak. Unfortunately, whoever planned April 2nd as World Autism Awareness Day is not aware of how cold it can still be here in Winnipeg, MB. He changed his mind and we agreed ‘next year’ is his turn. He has struggled the last several years, but he recently told me he wants to go to University for Liberal Arts and get into politics. I guarantee you, this young man has everything it takes to make a change in this world and moreso. I am proud of the man he is becoming.