Down Syndrome/special kids
I have been lucky in my life. One of the blessings has been the gift of a special child.
'Sam, where are you?'
Think of new things each day (or all day) to be grateful for. “Gratitude” is another word for “abundance,” because the things you are most grateful for become abundant in your life. ~ James Altucher
I was in my thirties when I met my second husband. Our first child together was born with Down Syndrome. The diagnosis at his birth came as a shock. I spent that night grieving for the normal child I'd expected. Around me the babies in other rooms wailed and howled with unfailing regularity while my newborn baby slept and fed and slept again. My baby didn't move or make a sound.
"He could teach the other babies here a thing or two," said the harried midwives. "He's a prince, he's a champion."
I hugged this warm sleeping baby to me and studied his beatific expression. He seemed to be of another more peaceful world than this one. He was above all the noise of life and people's expressions of pity.
In the first days, the midwives brought me literature to read to start to familiarize myself with Down Syndrome. I was feeling fragile. I read that these people don't live the same lifespan granted to normal people. It's rare to meet an elderly person with Down Syndrome.
I already knew that this champion, this prince among men, would be discriminated against and looked down upon for his entire life. I decided that I would have to be his protector and his advocate.
Before the advent of this child, I’d had no experience with the developmentally or physically challenged. So I had to get up to speed fast. He gave me a unique insight into children and people in general who are different to the norm. And this helps me on a continuous basis to grow as a human being.
He turned me into a warrior mother. I have had to fight for his rights. I've had to learn how to speak up for him.
This boy is what is colloquially known in special needs circles as "a runner". From the time he could walk (around four years of age), he was set and determined on escaping and running as fast and as far as he could. This created scenes of mayhem and basically terror on my part. I imagined him crossing roads or going under a bus. Yet magically, he managed to avoid being run over. But he worked his guardian angels hard. He once rode his tricycle down the middle of a busy road! It took me years to understand the motivation behind his running. Then a caring Occupational Therapist who worked with us explained it came from his having a highly intelligent mind that was constantly 'problem solving'. When we put up gates, he figured out how to unlatch them. When we put up fences, he figured out the weakest points to get up and over. To put my experiences with this runner to good use, I decided to write a story about it and put it in a fictional context. So I wrote I Run! In this story, I include the trike incident. I also include another incident at school when his teacher aide did a flying gazelle leap over a treacherously high fence to save him from running straight on to a busy highway.
The way other people treat my special son sometimes causes me great pain. These children get mocked. They get pointed at and are the butt of every joke. However while I shed tears over it, my son doesn’t have any reaction. I know it's not he who is wounded. It's me who is wounded on his behalf. That's the one of the things I most admire about him. He never holds on to a bad thought (if he ever has one), he never holds on to anything negative at all. The sneers on other people’s faces wash over him like water off a duck's back. I say to him, "You're fine aren't you." He smiles. Or sings. Or dances. He's happy on a day-to-day basis, he is always fine. I find him to be ever steadfast, enduring and true.
Through this wonderful boy, I've met lots of special children too. Children with autism, cerebal palsy, pradar-willi, smith-magenis, global delay and children who are terminally ill.
The issue of treating all beings with respect is one I like to touch on in my stories.
I heard Andrew Stanton speak in a talk for Ted on Youtube and was inspired. He said, Use what you know. Draw from it. It does not always mean plot or fact. It means capturing a truth from your experience, expressing values you personally feel deep down in your core.
Go here to read more about my kids. Go here to read more about the New Zealand association for Down Syndrome.