Well, it is sort of awesome, and it’s sort of not.
I’ve known for quite a while now that I haven’t been doing my job in teaching Lilly how to be independent, which is crucial for any child with a disability. She’s seven, and I still dress her. I brush and floss her teeth. I put her braces and shoes on for her. I change her soiled diapers. I brush her hair. I gave up trying to get her on the potty for now. It’s just faster and easier this way.
Geez, lady, you might be thinking, you’re teaching your child learned helplessness. And you’d be right. To a certain extent.
I believe Lilly is capable of doing most of these things. The thing is, she won’t do it for me. For my husband, yes. For the school nurse, her grandmother, a stranger off the street, sure. But me? No. I get crossed arms, pouts, and tears.
I recognize this is probably normal behavior. Kids know their moms will still love them no matter how much resistance they give. It’s a battle of wills, a testing of the waters.
And to be fair, Lilly does have a hard time with buttons, snaps, and zippers, and any other kind of fine motor skill. Some kids with SB have weak hand strength, and Lilly is one of them. I petitioned her school for some Occupational Therapy a few months back. I’m still waiting to hear from them. It’s probably forgotten under a pile of paperwork on some administator’s desk. Such is the public school system.
Yet I still feel Lilly should be farther along than she is, and I blame myself. This became quite clear to me the other day when I woke from a strange dream (bear with me):
We were at an amusement park and had just gotten off the ferris wheel. A woman began luring Lilly away from me. Apparently this woman believed Lilly was special, and that any fruit she peeled with a paring knife was blessed.
“But she doesn’t know how to do that,” I insisted. “I haven’t taught her yet!”
“We’ll teach her,” the woman said haughtily. And off she went, leading my daughter away from me. I sobbed, but no one heard me.
I think the knife bit came into play because at work the previous night (at a grocery store), a customer in my line was telling me that he lets his 7 year old daughter cut some fruit with a paring knife (supervised, of course).
Wow, I thought. I don’t let Lilly anywhere near knives. I don’t let her pour milk, for heaven’s sake!
In two weeks, we go to Shriner’s for her 6-month check-in, and I think we’re going to begin the process of teaching Lilly how to cathe herself. This is something we’ve been looking forward to, as for the past five years, we’ve had to cathe her every three hours during the day. (If case you don’t know what that is, it’s inserting a catheter into her urethra to drain the bladder of urine. Just so you know, this an SB blog-we’re going to be talking about poo and pee, kids!).
I can only imagine how this might go. I can’t even get her to gather her supplies when it’s time. Practicing on her special “shadow” doll with the hole between her legs was fun for the first two times; now the doll is buried underneath a mountain of other stuffed animals. I foresee more resistance!
My plan is to enlist the help of the school nurse, of course, who cathes her twice everyday at school, as well as her dad. As long as I know she’ll do it for someone, I won’t have visions of cathing her at sixteen years old.
For the other issues, like dressing and braces, I plan to find some OT for her over the summer, where she can learn how to do these things. Again, I think if someone else teaches her, I can be there to support, enourage, and enforce.
It’s true that your kids grow up way too fast. At least Lilly is slowing it down a bit for us. And despite all the worry surrounding it, it is kind of awesome.