This little blog of mine wasn’t really a planned venture. I had no idea what I was doing and no experience with blogging, but on the evening of March 29th, 2011, I decided I would take the leap and write a blog for April. I began 30 Days of Autism for Autism Awareness Month (April), but since that time I have been given many opportunities to reflect on my intent. I have been considering autism awareness, and I think I have perhaps missed the mark. More than this even, I want to say that this blog is not about awareness– rather and more so, it is about acceptance. My child is different, and we are on a different path because of it. This is not about awareness… I mean autism is certainly in the news and unless one is living under a rock – most of us have some level of awareness.
No – what we need is acceptance and understanding!
Last week I heard a presenter expressing the constant need for appreciating cultural differences when looking at the needs of children within our schools. Her point, really, was that we take pride in that our system is not a melting-pot that forces people to give up their unique customs, beliefs, or identity in order to become the same as everyone else, rather, it is a mosaic. At this point I couldn’t help myself – I took the mental leap… and drew the parallel. Here is a thought… this should also apply to diversity in neurological functioning. How can we accept our different thinkers and unusual processors a part of the mosaic and take pride in the differences that a child like mine brings to the table (or the playground, classroom, or birthday party) and celebrate it as an expression of beauty.
For this… for my child’s future, for the future of other children with neurological differences, for building a world that is accepting and understanding, for all of this… I have hope!
My skeleton is made of hope
Sometimes steely strong
My muscles, tendons, flesh
Are attached and connected
Held together by these bones
And in turn holding these together
Chalk or steel
The structure that keeps me going
The form of my tomorrow
This skeleton holds me up
Into the unknown
Carefully, steely strong, tentative
The framework of possibility
As I move ahead
Shift my weight
Climb or retreat
With all that I feel
With all that I carry
At the very centre of me
My skeleton is made of hope
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2011)
I really agree with the focus on acceptance. I like to think overall of a middle path between working on changing some areas that are the most problematic and on accepting the rest, but as a whole I find families too focused on the change component and not enough on the acceptance component. Thanks for the beautiful poem.
Thank you for your thoughtful comment. I agree with you about the trickiness of finding the balance between acceptance and changing challenging behaviours. I am constantly questioning this and wondering things like: “Is this a behaviour that is interfering with the trajectory of development? Does this really matter? How does H feel about this?” It can be hard to step out of the role of concerned parent/advocate, who weighs every comment and movement, to just let loose and have fun. I really want to enjoy my son’s childhood, and I want him to develop into a competent adult. That is really what I hope for. I want him to be fulfilled in a way that is meaningful for him… not me.
Leah, I delighted to have met you last evening. Your comments in this blog post and the poem echo my concerns. My views have been strongly influenced by Sandra Westendorf and her book, The World According to August. You’ve expressed these same views eloquently.
Thank you! I look forward to following your future post and learning from them!