Several months ago I wrote a piece for Huffington Post called "The Crappy Life of the Autism Mom" that described a crapisode, which is my word for what happens when two of my three girls with autism work in tandem to create a holy mess in the bathroom. A crapisode commences when one child uses the toilet, forgets to flush and leaves the lid up. Her little sister likes to play in water. Even toilet water. You can figure it out from there. Let's just say it ends with a healthy spraying of Lysol.
The point of the piece was to explain that for thousands of families like mine, autism brings challenges most people outside of the autism community cannot fathom. I also used a candy analogy in my "Crappy Life" piece. You know those Bertie Bott's Every Flavor (including yucky ones) beans from Harry Potter? I compared them to autism, stating that some kids got a "tastier" version of autism than others. Little did I know I'd spark a... ( er, um, can I say this on HuffPost?) ...a sh*tstorm in the autism world. The piece has traveled farther and wider than I ever get to go. Then again, I'm an autism Mom times three so I don't get out much. "Crappy Life" has been picked apart and scrutinized more than a specimen in a Great Plains Laboratory comprehensive stool analysis test.
With "Crappy Life" I did what writer's long to do -- I struck a nerve. I think I even coined a phrase. Many parents of kids with autism have thanked me for sharing how difficult life can be as you try to help a child with autism navigate day to day life. Others have berated me for embarrassing my children. Please. Embarrassment is my birthright. Ask anyone in my family about the little gifts my Grandma Yoli kicked under the counter after my diaper pooped out (literally) at The Farmer's Daughter gift barn in St. Johnsbury, Vermont in the mid-1960s. They still tease me about "losing my marbles in Vermont" forty years later. The day my kids can read my writing and complain to me that I hurt their feelings will be the proudest day of my life. I will apologize to them and hope they understand that I was fighting for them through my words.
Today I'll try an analogy that's nothing like candy. Autism is like cancer. (I can hear the bloggers clickety-clicking each other already.) If your father calls you to say he has cancer in the form of a tiny spot on his arm that the docs can remove with certainty, you are concerned, of course. But you do not run to church and get on your knees to pray for his survival. If your father calls you to say he just learned he has cancer in the form of a brain tumor that has spread to his liver and pancreas, you're in the pew before you hang up the phone. Both malignancies are called cancer. But cancer, like autism, comes in many forms. Some more life altering or manageable than others.
Through hard work, new biomedical testing, devoted teachers and therapists and a healthy dose of God's grace, my children are doing quite well for the moment. We're in an autism zone. Miss M., the oldest, is using a few more words than usual which tickles me pink. She sits with the seventh grade girls at lunch and my spies tell me she is well received. Good thing too. You think I won't "shake the foundation" of a twelve year old? Try me. Oh, and Mia just had a check up where the pediatrician was able to tell me how much she weighs and how tall she is. (Goodness those peds are helpful aren't they?)
Miss Jiggy G., my middle gal, is thriving in fifth grade. Her math skills amaze me. I got the shakes when I was asked to add more than two plus two as a kid. Her teacher called to tell me how pleased she was that Gianna was plotting graphs with the fifth graders. The only thing I ever plotted was how to skip off campus at boarding school. And her social skills are skyrocketing. She says, "Time to go to school to see friends!" Again, thanks to the hard work of fantastic teachers and a school full of decent kids who are taught to see Miss G. as just another kid. Not to mention one who won't tattle on them.
And Miss Peanut? Well, Bella, the little lady who created the crapisode, turned seven last week. She is the darling of her first grade classroom and is trying to make new sounds. Oh! And she has a new fine motor (or is it gross) skill. She's learned to lift the lid on the toilet all by herself. Craptastic!