Pudding hates DIY stores. The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many. We just can’t go there with her, it is unbearable. Nothing makes it better. So we just avoid them, easy as that. Most often Spectrummy Daddy goes alone, but he was ill, and we really needed some stuff. My Mondays are crammed anyway, but there was no putting it off. Pudding was in school in the morning, so I took Cubby right after his music class. He is more sensitive than she is, so I wasn’t sure how he’d do, but apart from a lot of questions about the various noises, he did okay. Phew.
I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found an assistant to ask where I might find the first item on my list. She helpfully pointed me in the right direction. We admired the fork lift truck(!) for a while and then continued to source the rest of the items.
I’d almost finished, when I walked by the stand for the “Light It Up Blue” campaign for Autism Speaks. I’d been intending to pick one up before April 1st, so walked purposefully over to the display. Before I got there, I was intercepted by the assistant who had initially helped me. She asked if I wanted to buy a blue light bulb to support Autism Speaks, and I said I did. She placed one in my hands, then thanked me for “helping to fight autism.”
It stopped me in my tracks. Fight.
We hear fight against cancer, and diabetes. To her mind, autism is just another disease that needs to be eradicated. Like cancer. The autism epidemic. Stealing away our children. Only Pudding didn’t change. She is the kind of kid that would have been missed in the past. I believe there is an “epidemic” of kids who were previously undiagnosed. Some of her symptoms became more noticeable, but she is the same person. She isn’t stolen away, she is right before my eyes. She is the freest spirit I know, who revels in the things that bring her pleasure, who really lives in her every moment. She has no artifice, she is real. I’m not sure she’d want to fight who she is. I know I don’t.
Now I know adults with autism, and they are proud of who they are, and the unique contribution they bring to the world. I wouldn’t dream of telling them they were diseased.
But then I have only experienced parenting a child who is verbal, who is considered to be “high-functioning.” For all her differences and difficulties, she has less of a disability. I know many parents are living a battle. They have never heard their child speak, and witness only aggression and injurious behaviors. That is their autism. They would do anything to take away all the barriers to their child’s ability. That is their fight, and they are right to fight it.
Don’t get me wrong, there are many things I would like to fight. Her anxiety. Her difficulty with language. Her daily struggles with her senses. But I find that when I get into a fighting stance against those things, it is Pudding who backs away. She needs to be coaxed and comforted to move forward.
My fight is about accepting that I can’t do everything for her. She will struggle, and I will have to witness it.
My fight is about getting her to the point where she could go to this very DIY store, or any other place that she struggles. Or getting them to adapt for her.
My fight is about ensuring my girl is included, be that in school, the wider community, or in a magazine. It is through advocacy where our punches seem to hit the hardest.
My fight is accepting that our lives are different from the way I thought they would be. Acceptance, not an act of violence: submission that is gentle and tough at the same time. The hardest fight of all.
My fight might not be the same as another mother’s, but we still fight together, and our fight will always begin with awareness.
I smiled at the assistant.
“I’m buying the light for awareness. My fight is for understanding and acceptance.”
I hope we’ll be the winners. Our loved ones are our champions.
If you haven’t already, please read and comment on the letter from Jess (A Diary of a Mom) to President Obama, asking him to light up The White House on April 1st and 2nd.