I don’t remember when I met Kate or how we became friends but I know that we are and I know that I’m glad. This lady has such a way with words and her writing is refreshing in its honesty. I’m happy to share her here with you.
There I was sitting at my son’s baseball game, watching my seven-year-old daughter dig through the grass with careful purpose, picking each small white flower she came upon, leaving behind any that were not the exact shade she had set her mind on. Her face was inches from the ground, inspecting each one so carefully, crawling and digging, crawling and spreading the grass, a careful method she had designed to suite her purpose. What was comforting to her, a distraction from the noise of the game; the constant yet unpredictable screams from the crowd a combination that usually ends up setting her off, was uncomfortable to me. I looked from side to side to see who was watching. How long would it be before someone pointed out her odd behaviors? “Chloe, get up please.” No answer, she was too deep within her own self-protection, she was successfully blocking out all noise from those around her. Instead of seeing this as a strength, I slid down in my seat and gave into my own weaknesses, reaching for my phone to distract myself.
I thumbed through Facebook back and forth, not really reading anything in particular. The faster she dug through the grass, the faster I thumbed my screen, mimicking her panicked motion. Only the reflection of what was easing her fear, was only feeding into mine. Just as I caught myself brimming with anxiety; the falsified image that all eyes were on me, a title caught my attention, Autistic Kids Need to be Able to Talk About Disability. I stared at it for a few moments, indecisive if I should open it. I mean, we have done that right? As her parents, her well educated parents, we had already done that. Her father is a public school teacher, I have college education in psychology, and clearly we have crossed the bridge of allowing her to talk about her Autism. Had we? The more I thought, the more I pumped myself up into thinking we had accomplished that. The me, who was squeamishly slouching in my chair so that I could hide while my daughter with autism used the tools she had to comfort herself quietly? Maybe not.
Two paragraphs in and I realize I am in trouble. I have already begun assessing and analyzing all of my interactions with my child, and I am failing miserably by my own interpretation. I wasn’t beating myself up really, I truly realized I was not accomplishing teaching her that Autism is more than a brain that just “thinks a little differently.” In all of my attempts to try to teach her to not self-pity, or use her Autism as an excuse, I had avoided the topic of Autism being a disability at all. The question was why, and that was one that was going to take a lot more soul searching to figure out.
Our family is no stranger to disability. Having two children with a neuro muscular disease that limits there organ function and often times mobility, we are well versed in the term. We are used to having eyes on us, the wheelchair “stares,” the leg brace questions, we aren’t uncomfortable hanging our little blue wheelchair friend from the van mirror so the kids can park where they need to. So, why is it so different for me when referring to our daughter’s Autism as a disability, and why had I not even thought of it until now?
I continue to read as Chloe continues her search for her perfect little white flowers. As I reach the “more complicated” information my stomach begins to churn. Unfortunately it was much more than indigestion from the nachos I had just eaten from the concession stand. I am sitting there reading a list of things that parents need to help their children with Autism understand about themselves and about their disability, and it finally comes flooding in that while I knew all of these things about Autism, I truly have not accepted that any of them belong to my daughter. How could it be that all of those years ago I was not shocked by her diagnoses, but still have not come to accept it? How could I defend her diagnosis to others, but still not believe it myself? How could I live with it every single day, but refuse to truly acknowledge it for what it is? How could I treat her Autism, and in turn her, like something we needed to overcome, instead of teaching her to accept her Autism as a disability and embrace the life she was given? It was not a good feeling moment to say the least, but was a much needed wake up call.
I slipped my phone back into my pocket and sat back up straight. I laid my eyes back on my little girl, for the first time in a long time seeing her and not just the motions in which she was making. I thought about the many battles we had and how different they could have been if I had had this moment earlier. I wanted to scoop her up and hold her tight, but I knew that isn’t what she needed, that was what I needed, and that was the first thing that needed to change in our relationship. We were going to hit the reset button right there and then, and it was going to start with me ridding our existence of as much selfishness as possible. I closed my eyes and took a deep breath, releasing as much guilt as I possibly could, knowing that harboring that was not going to do us any good. When I opened my eyes she was standing before me, a fist full of white flowers, waiting for me to take them.
“For you Mommy.”
My eyes welled up with tears. To think, something I so passionately wanted to stop, thought I needed to stop, became something so beautiful. How many other things had I ruined by not being able to accept her Autism?
How have you chosen to embrace your child’s diagnosis? Has this been a process for you too? Is it possible to strike a balance between celebrating disability and acknowledging it’s challenges? I HIGHLY recommend you read THIS article. Such great advice for parents.