When you raise a child with cerebral palsy, life is all about finding alternatives, and seeking a balance between finding alternative ways to do things because the conventional way is impossible, and making her do things the conventional way, because even though it’s harder, it’s better for her.
And that’s a delicate balance, hard versus impossible.
Take diet, for example. I believe there is a distinct possibility that my daughter will one day grow to resemble a Chicken McNugget, only with serrated, squared edges more reminiscent of a Cheese Nip.
So I strike a balance between what she wants and what I think she should have. She gets her burgers plain, because varying textures give her the heebie-jeebies. For that same reason, she digs plain rice without gravy, although she loves that same gravy on mashed potatoes. It’s not being a finicky eater, it’s simply that she recoils at certain textures, particularly when her sensory input is giving her mixed signals. She loves ice cream, for example… but not if it has chunks of anything in it.
So we compromise, and we find alternatives.
Clothing is another example. She can put on pants, skirts and panties by herself, and I require that she do so, but shirts require help from Daddy. She likes girly things, and adores anything pink. But Cinderella dresses do not mix well with campground mud and campfire ash, so we compromise by allowing her to wear pink camo.
But the most frustrating thing for me to deal with is her aversion to sounds. I’m not talking loud noises, folks. I’m talking any unusual or unexpected sound. What seems like a pleasant little music-box jingle to us jangles her nerves something fearsome.
So I try to strike a balance between her aversion to sounds, and inoculating her against unreasoning fear of loud noises.
Her Grandma, for instance, made it damned near impossible to take Katy to any place that used industrial-style toilets. The louder flush gave her fits, and her fear of loud potties damned near grew to a phobia. And Grandma, ever-protective of KatyBeth, enabled her and let her avoid those noises. And Grandma agreed that it was indeed loud and unpleasant, and everyone knows that Grandmas know everything.
So it took us forever, and not a few accidents along the way, to get Katy to poop in a public restroom. First it was covering her ears when we flushed, and then it was taking her outside the stall while we flushed, and finally we progressed to making her flush, so she’d know when it was coming. And forewarned being forearmed, she discovered it wasn’t so scary after all.
She started asking to go along when I’d go shooting, or asking me to take her hunting. And the noise at first scared her badly, even with multiple layers of hearing protection. So I took her on father-daughter trips, just the two of us, where the only rounds we’d shoot were her special “quiet bullets.”
And after she got used to those, we used regular .22 high velocity rounds, and she didn’t flinch. She still thinks we’re using the quiet bullets, though. The past couple of trips to the range, I took her along, and she happily played back behind the firing line (under supervision, of course) wearing her hearing protection while surrounded by all manner of loud noises – including explosive Tannerite targets – with nary a flinch. When her turn came, we called a cease fire, and everyone put their guns away while Katy shot a few clay targets and water-filled Coke bottles with her special “quiet bullets.”
Hopefully, one day we’ll actually progress to the point she can hit something with those bullets, without me helping her aim. Till then, as long as she asks to shoot and seems to be enjoying herself, I’ll leave the nuances of sight picture and trigger squeeze for another day.
Now, all that background is a prelude to the question she posed today. She brought me a toy carousel, and asked me to remove the batteries because the music it played skeeved her out. And I gently explained that turning it off was the only thing necessary, and the carousel would function just fine, but without music.
And Her Excellency Mistress Katherine, Queen of Logic, informed me that sometimes switches get turned back on accidentally, and the only way to be sure was to remove the batteries. And if I, Serf AD, were unwilling to remove said batteries, perhaps it was just safer all around to get rid of the toy.
And I informed her that it was wasteful to throw away toys, particularly treasured ones that we still played with, and that she may want that toy in the future, or choose to give it to her baby brother or her own child one day. And having thrown away that toy because she could not get over a silly, irrational fear of the noise it made, she may come to regret getting rid of said toy if that day should ever come to pass.
At which point my daughter pondered my irrefutable logic for all of ten seconds, and then brightly arrived at her solution:
“You know what we could do, Daddy? We could take it out to the range and tape some of your exploding stuff to it, and then it would blow up when we shoot it. Now that would be fun!”
I tell you, I don’t know whether to be proud or dismayed…
