“Mom why does my brain get so much fear when my food is different? I like chocolate, but I can’t eat this chocolate pudding because my nose freaks out with the wrong smell of the weird chocolate.”
We have always been open and direct with Finley about differences. All of our kids really. Whether it pertained to them or others. And while I have no issue with labels, I also know the power they can have – both good and bad – so I prefer to explain things in detail without relying so much on the label part.
For our family, getting any health diagnosis is important in providing context. If you have ever experienced something, physical or emotional, that made you acutely aware of being on the outside of typical, then you know how powerful it can be to finally understand the how and the why.
And that is why 3 years ago we started looking for answers for Finley. She was diagnosed with autism, and that gave us the context to understand how to help her navigate a world so things were no longer obstacles to her. Rather, we could see the world through new eyes and seek the things that play to her many strengths.
Since that time we have answered all of the questions she had about her or others that touched on autism. We have given her a foundation of knowledge, understanding, and acceptance. Because at the end of the day that is what is most important. And we did all of this without ever mentioning the word autism. It wasn’t ever intentional. It just never seemed to be necessary. All we cared about was that she loved who she was and learned coping skills that used her unique traits.
Lately though I have wondered if maybe on some level I was avoiding telling her outright. I have dealt all my life with being on the outside too so I knew the double-edged sword of being labeled. On one hand it is utterly freeing to finally know. On the other hand it can solidify a divide, and whether consciously or not, others can use it against you to lay blame at your feet and free them from culpability in any given situation. I realized I wasn’t ready to bestow that pile of crap on her and was terrified of destroying all the goodness she worked so hard for.
I underestimated her though.
Today when she asked me why she couldn’t just simply eat a new food even though it was made of something she loved so much, I knew it was time. She was ready to know that all of this involved autism whether or not I was ready to tell her.
As I am carefully explaining what I have been mulling over and over in my mind, she interrupts and says, “Mom, do you think scientists and coders have brains like mine? Because I am really good at coding so it is probably a good thing my brain is different so I can grow up and code games to make people happy. And why aren’t there any girls landing on the moon? That’s kind of dumb. Unless there are just girls under some of the helmet pictures so we can’t see there are girls, but that is dumb too because why would you hide a girl? Do you think I can be a miner, a scientist, and a coder? My brain does all those different things and maybe someone can just make chocolate pudding with the right chocolate I like.”
I failed to realize how much she has come to love and accept who she is as matter of fact. It never occurred to me that the label of autism could be one of power for her simply because she would infuse it with her confidence. She instantly related to people she admired assuming they were autistic like her.
She sees goodness in autism because she sees goodness in herself.
Never underestimate this child. She is truly a wonder to behold. Where some may find problems, she will find solutions. Where some may fear, she will accept. Where some may see fault, she will see greatness.
She is my daughter.
She is Finley.
Shayla Hearn writes an autism parenting column for the Geek Club Books Penfriend Project.
Photo credit: Shayla Hearn