Autism Awareness Month…every year it’s the same story…I change my profile picture to some mildly inspiring puzzle piece image, repost several informational blogs, and every once in a while write a list of blessings that Autism has brought into my life. Then April is over, and I go back to the daily awareness that is the reality of being a parent to a child with this disorder. An entire month dedicated to something that I’m deeply passionate about and yet…I feel nothing. Why do I keep doing this when I feel so numb?
Maybe I do this every year because I’m driven to somehow prove to the world that I’m a supportive parent. Caring way too much about what others think of me leads to a desperate attempt to be seen and heard in an area of my life that often leaves me feeling either harshly judged or completely invisible.
Maybe it’s the mom guilt. That little voice inside my head that ignores the many times family and friends have told me it’s not my fault. The voice that insists that I’m somehow to blame for her diagnosis. If I just share enough of my heart with the world on this subject, and it fosters even a little more understanding for others like my daughter, I’ll redeem myself and just maybe the a little of the guilt will disappear…right? Nope.
This year, we’re only two days into April, and I just can’t do it anymore. I can’t pretend that anything I post on social media will actually spread awareness of the reality of Autism in the lives of those living with it. As great as social media is at spreading the word on things, it’s also great at deadening us inside. Before Facebook, I used to see photos of homeless families or read stories of abortion and it would crush me. The compassion within was alive and breathing. I reacted to human need. Now, I scroll past photos of starving babies and articles about mass killings several times a day and keep right on going. Just take another sip of my coffee and move on with my day. To think that my posts about Autism are going to cause any kind of real movement towards acceptance seems ridiculous.
What we really need to be aware of is the irony of trying to stir up compassion for a disorder that causes difficulty with empathy in a society that has in so many ways abandoned empathy altogether. We need to be aware of the fact that awareness campaigns shouldn’t be necessary. I can’t count the number of articles I see each day online written by parents like myself, gushing over a stranger simply saying “Hi” to their child with disabilities. Don’t get me wrong, I am extremely grateful for the people in my daughter’s life who take the time to interact with her. But the act of simply acknowledging a person with disabilities doesn’t deserve an award. It’s common decency! It shouldn’t be something we even have to think about. Seeing the person first, the disability later, and choosing to value that person just as much as anyone else should not be such an extremely rare and shocking occurrence that it makes headlines! It should be an automatic response.
I long for acceptance of my child with Autism with every fiber of my being. As much as I’d love to believe that she could grow up in a world where she’s appreciated and valued just as she is, without judgement and condemnation for her struggles…I know that’s not the current reality. Regardless of how much publicity Autism gets one month a year, she’s still going to be viewed as “different” by a world that refuses to acknowledge that not a single one of us is the same. We’re all different by design. What makes that so hard to embrace?!
The many ways that society is failing those with disabilities…the many ways we’re failing each other…makes me angry and makes me sad. I want a more grace-filled world for my daughter. Finally, I’m owning up to the fact that it starts with me…and posting pictures of puzzle pieces on Instagram isn’t going to change the world for her. Working hard to treat each person I come into contact with as better than myself, deserving of love and respect regardless of their differences…that’s the only chance I have at changing the world for my child. One person, one moment at a time. Expecting the world out there to change for her without changing the world within the walls of my own heart…that makes me a part of the problem. We’ll never fix the brokenness all around us, without first fixing the brokenness within us.
I’ll never stop trying to spread awareness about Autism, in hopes that acceptance becomes reality. But, starting this year, promoting awareness looks different. Acceptance for my child starts with me.