Hey folks! I know it’s been a while since I’ve blogged on IGN and have been on a writer’s block of sorts. So I decided to simply write whatever flowed through my mind as I typed. As most of you know last year my older brother and I had basically decided amongst ourselves that we would gain joint guardianship over my 20 year old severely autistic brother. Getting the paperwork done was rather complicated and there were some issues with the court that were rather stressful, but I wouldn’t change it for the world.
My brother, Deen was diagnosed with autism at a rather young age. Meaning that I learned to live with the thought of autism for pretty much my whole life as he was only one year my junior. The sad part being it took me a while to grasp the idea that apparently he used to be able to talk before as I could not remember those times where he was just learning to say his first words. My much older relatives and parents always retold to me about the times where he knew how to say ‘mama’ and count the numbers up to 10 but suddenly regressed to the point of only being able to vocalize vowel sounds after receiving a vaccine shot. I never thought much of it aside from sheer blinded anger and continuously blamed the possibility of “medicine” ruining what could have been my younger brother’s prosperous life. Over the years I’ve learn't to accept the fact that he’ll never be normal and I’ll never know the true reason of how he became the way he has.
I realize that today is Autism Awareness Day, and I know what it stands for – the success of autistic peoples and giving awareness to others that don’t have to live with the harshness of a deteriorated spirit every single day of their lives. There’s not a day that goes by where I don’t have to constantly be giving him some form of physical care, whether that’s brushing his teeth, making sure he has no bite marks inflicted from himself or other autistic people in his class, feeding him or changing his diapers. Sometimes I cry because I wonder if he even realizes that I’m his sister or that I really and truly love him from the deepest part of my heart. If he can even fathom such ideas. I know he knows that I provide for him, and I can’t even begin to imagine how my mother feels when it came to taking care of him when he was younger in his more violent years, his room caked in walls that are forever in a loop of being repaired – the massive bump on his forehead swollen and cut from continuously banging his head against the walls.
Sometimes I sit down and look into his eyes and imagine what it would be like if he were able to talk, simple scenarios like the two of us conversing about pre-ordering a new videogame or arguing about who knows what.
Learning to shoulder while making it a bit easier for my mother didn’t happen overnight and all my siblings make it a team effort but often times I find myself wishing things were better for myself and him, in an almost selfish manner – it’s a thought process that makes me feel guilty. However the truth of the matter is he will need daily living assistance forever; when god forbid my parents pass, I will have to do those things and more for him. I took that step in my life where a certain part of my heart will always belong to him and no one else. It’s hard for people to understand what it’s like but that’s my burden to carry. Everyone has their own tribulations and my brother Deen has made me more than half of the person I am today. He’s made me stronger, kinder, more caring and more loving than I ever could have possibly been without him. It’s unconditional and it’ll never change. Waking up in the middle of the night, hearing him crying and stumbling awkwardly to sit by his side to sing him lullabies won’t change. I’ve already chosen to sacrifice certain parts of me for a better purpose, even if that means my lifestyle must be different.
Sometimes my older brother argues that he should be the one to take care of him once he buys his own property to settle into and I appreciate the thought that he wants me to have a bit more of a normal life, but Deen has always been my constant, our constant. And awkwardly, I must hear my own mother often times pray that the day she passes be the day my autistic brother passes along naturally with her since she doesn’t want for him to ever become a burden to the rest of the family.
There are many memorable stories that I could tell of my brother and I, but they’d be redundant and a part of me doesn’t want to stray away from the point of becoming mindful that all autistic people differ in both personalities and experiences. So please, if you’re compelled to make a donation, give it to a local organization that helps impoverished families with disable loved ones as providing for them is a continual struggle. Instead of attending pep rallies, contribute to an organization that provides autistic children with service dogs or sports equipment. Or volunteer for a day in a special needs school, live inside the shoes of others for a day or two or more.
The least you could do is remember that cashier by the Deli who doesn’t smile at you while he gives you back your change. Because that’s my brother, he’s done that job before. Because even a smile is a gift.
Mary Ann is a lover of life and a wonderful storyteller. A true Canadian at heart, she hopes that maybe one day she'll find a sense of belonging and self in a crazy mixed up world.