I haven’t posted anything in a while for we are going through another dark period of being special needs parents. We seem to be having one major challenge after another sprinkled with other lots of other little reminders that life is far from normal and trying to assemble anything remotely normal is a false mirage, seemingly forever unattainable. Although I have enough material to make any grown man cry with the inequities of being a special needs parent or the injustices of what Reilly is going through, I didn’t feel that these stories, events, and emotions had a place on this blog. For my goal with this blog was to remain positive and my plan in life was to prove that Reilly’s disabilities and everything that goes along with it was not going to weigh us down figuratively or literally in leading a rich and fulfilling life. So I wrote nothing.
I came across an article recently though that had the equivalent effect of splashing cold water over my face to wake-up and get out of the stupor I have been in and to write. Going forward I am going to write about the good, bad, and the ugly for that is reality and not a reflection of being negative or a pessimist.
The article in question is from Bloom, a magazine published by Holland Bloorview Kids Rehabilitation in Toronto, called The Balancing Act where British director Stephen Unwin describes how his new play about parenting a profoundly disabled child hits close to home.
In commenting about his own experience, Unwin remarks that there is pressure on parents of disabled kids to be marvellous. Unwin admits that he finds it hard. We find it hard too – really, really hard. If I had a dollar for every time someone has said they wouldn’t be able to do what we do or we are such amazing parents I would be rich. First, we did not choose to have a special needs child, for us it was completely random, nor did we receive any additional training upon receiving the diagnosis. Second, why are we even considered amazing parents? Because we care? Because we try? How is this different from being a normal parent? You don’t hear normal parents saying to other normal parents, man you are an amazing parent because you took your child to an activity. I think we are considered amazing parents because deep down others are grateful they don’t have our responsibility, nothing more. Sigh.
One of the reasons Unwin finds it hard is that his background, experience and expertise is in English classical education and here he has a son that has no speech. I can relate to this as well for my background is in business. I know how to crunch numbers, strategize, facilitate damn good meetings, and have a child that would be better matched with a parent whose background is OT, speech or even a nurse. Reilly’s disabilities force me to face my weaknesses on a daily basis like nobody’s business and a lot of the times it ain’t pretty.
Unwin admits that he loves his boy to pieces but he is also grief stricken at the same time. I think many people in our shoes struggle with these two opposing states, almost believing that you can’t have this contradiction in place and have to choose one or the other. Unwin’s position though is that it is not a contradiction but something real that exists. It brings me solace in that I am not going crazy trying to reconcile these two opposing feelings, that often can manifest themselves within the same day if not the same hour. Although he states we should be allowed to have the range of emotions, an ultimate roller-coaster ride. I have to say this roller-coaster ride isn’t fun and is very taxing on one’s mental and physical health, if not the soul.
Unwin also addresses a plaguing issue I have with the ‘outside community’ and the lack of supports that exist on so many different levels. He says “there’s a mistake in some parts of the disability community in criticizing other people for their lack of understanding…If it hadn’t happened to us, we wouldn’t have the knowledge. This is something I worked on in relation to my family…but they find it difficult, I used to feel a bit resentful of them but now I understand. They find it difficult in the same way I find it difficult, and because they have less experience, they’re still finding difficult in ways I’ve got over”.
I accept this rationale and resonate with it completely and although it has taken some of the sting out of some issues I have, I still feel that there should be far more open dialogue and action in building communities that truly are open and accepting of all individuals. Where I am not praised for being a parent of a special needs child simply for surviving or willing to take on the battle that does exist out there.
Given Unwin’s article, I was going to title this post Parenting a Child with Profound Disabilities and although it is true in every which way it takes off a needed emphasis on the Parenting part, so I aptly renamed it Profound Parenting…. of a child with Disabilities. Until changes are made, there is no question that it requires a different style of parenting in order to survive.