Last week, I was thrilled to see a beautiful post by an online magazine I follow quite often, babble.com (http://tiny.cc/cp3uqw). The post was aimed at helping our community respond to the negative comments in a positive way, sharing the photos of our loved ones and a few things about them with “This is Autism”. The photos illustrated the hope, the dreams and the accomplishments of individuals with autism; it was truly something I was very grateful to see.
There are so many stories just like those that were told with the babble.com post, but there is also the untold part of the story that I feel needs to be talked about equally. Not for pity, not for sympathy, but for continued awareness for our loved ones. Why, you might ask; it’s to help bring the understanding full circle and we’ve all heard the comment, “well your child looks normal?”, am I right? Well, Robyn and I have heard that too many times, Kian is quiet and reserved, in class he gives the impression he isn’t taking part in class or even paying attention, in stores he’ll walk in circles as a way to cope with his surroundings and if his meal is prepared wrong in a restaurant the panic on his face is evident to the bewilderment of the server. Now, I don’t expect that in every interaction we have with others in our community will instantly be fixed by sharing these stories, but they could help along the long road of awareness we need to continue down.
There are challenges that most people will not, or will never see. There are things about Kian that unless you live it, you may never truly understand and they are not uncommon in every home of a child with autism. For instance, most people don’t understand how he needs help with simple tasks, things we often take for granted. Kian often needs reminders to do simple tasks like brushing his teeth, supervision for bathing (washing, general hygiene, etc.), more than often a simple concept for school, will take hours of at home, one on one attention and finding foods that he will actually eat are a challenge. Even with all of that, we know that we are blessed. We certainly don’t have the challenges that others do and we are grateful for that. Yet still, we think of the old adage, “Take a walk in our shoes” quite often when “fighting” with a teacher about missing assignments or lack of participation as an example. It is frustrating and exhausting all at the same time.
I am hopeful; hopeful that the negative “perceptions” of autism don’t set back any further the work we have done to raise awareness and that we can continue to find understanding in a world that is already so complex. As I said before, we as a community do not look for pity or sympathy, but acceptance and understanding.