Learning to Eat

September 26 was Blogging for Kids with Disabilities Day, an effort organized by Laura at 11d. She organized/inspired a neat set of bloggers to write about their experiences. I was too shy to join in at the time, partially because I couldn't decide whether Curious Girl really is a kid with disabilities or not, and partially because, well, I was shy. I got caught up in questions like what is a disability, really? And where is the line between medical conditions, disabilities, developmental delays, and ranges of typical or slow development? And how did my life fit in when some of the parents who were planning to write were dealing with issues that seemed, and are, so much bigger than the feeding/developmental issues that have shaped the past few years here. Who am I to enter this conversation? I wanted to write, but couldn't get over those questions. But Andrea's recent post about her complicated feelings around her family's medical experiences has drawn me back. One of the things Andrea says there is that she has been "continually shocked and humbled by the Moms who have been willing to let me into the Special Needs Club when Frances is so normal in so many ways."

That's pretty much where we are: members of a special needs club who have a mostly pretty typical kid. A pretty typical kid who couldn't eat. We knew something was wrong with the way she ate--even when clearly hungry, she would push away her bottles. To make a long story short, one test and four weeks after the adoption, we were in the children's hospital having surgery to put in a feeding tube. For the first while, Curious Girl couldn't really eat much of anything, and got all her nutrition through her feeding tube. We were fortunate: we had good health insurance which covered visits to all the specialists we needed. And we had good friends whose child had needed feeding therapy, so were got hooked into the right team with the early intervention program. I was on sabbatical so I had flexible time to devote to Curious Girl (that's not exactly how I framed it on the sabbatical report, but that's another matter!). Our feeding progress was slow, but eventually CG got better and better at eating; she gained weight; she grew. At the 3rd percentile level, mind you, but she grew.

We got where we are with a combination of factors: flexible and secure jobs that let us have a lot of time at home; people we knew who hooked us into the right people in our health care system (feeding issues with children can easily be mishandled); a child with an optimistic way of looking at the world who cooperated with her therapies; a speech therapist who is smart and loving, who supported us and encouraged us to communicate, communicate, commnicate. All our feeding therapy was geared toward developing CG's muscles and developing CG's social skills.

We're heading on our 3rd anniversary of her feeding tube, although I hope the tube will be out before that date arrives. We haven't used it since sometime last spring. In the past three years, I've spent more time in hospitals and doctors' offices than I ever had before. I've marvelled at the generosity of therapists, doctors, and other parents who have made me feel like my kid is the best. thing. ever. I'd be rich if I had a nickel for every person who said "well, when she's hungry, she'll eat." or who would say "Um, won't she just eat junk food when she's bigger if you keep feeding her double stuffed oreos?" Well no, and no. Curious Girl wouldn't eat, you see--that was the reason for the tube. Perhaps the people who keep telling us that think that we and our insurance company just weren't patient enough, and opted for major surgery just because we couldn't bother waiting for CG to get hungry. And Curious Girl wasn't actually eating very much of the high calorie food we were trying to get her to eat. When you won't eat much of anything, any calorie is better than no calorie. The balanced diet would come later.

These days, Curious Girl eats like any other child her age (although she doesn't tend to eat as much as other kids her age). She's always had an adventurous palate, and she's always eating a wide array of foods. At Passover 2003 she chowed down on the pickled horseradish. She loved Ethopian food. She ate hummus and salad dressing (in fact, she used to drink salad dressing). But on the way to getting here, we've gotten rude stares from people wondering what we were doing wiht a feeding tube in public. We've gotten rude questions from total strangers who seemed to think we should disclose her full medical history in the coffee shop. And we've gotten kind comments from people who would say "I know what that is. My son used to have one." And our best friends shared in our job when she ate, oh, the tail off a goldfish. And then a whole goldfish. And then a handful!

We've learned that Lindt chocolate balls are good for breakfast. We've learned that we really do know our child better than anyone else does. Before I became a mother, I listened to people say oh , your child will tell you what she needs and think you're nuts. Infants can't talk. But we did learn to read our child, we learned to sign together, we learned to talk together. We learned that praise, specific praise for specific things, really focuses attention (and also gets your child to say Yay Mama! and clap when you finish a glass of wine at a dinner party). We learned that breaking things down into small steps--small ounce cups, literally--makes learning to drink bigger quanitities easier. We learned that children focus on the big picture, and that if offered a wide array of food (everything from tofu and brown rice to the aforementioned Lindt chocolate balls for breakfast), they will eat a range of food. Eventually.

And we learned to listen to ourselves and each other, to tune out the people in the park who would say "if only you did X, she would eat more." Neither Politica nor I were much for the fraternity scene in college, but we've done ourselves proud inventing drinking games for our daughter. And we've had a ball, at least some of the time, making mealtimes fun.

So here we are, with our small big girl. Have we been living with a disability? Maybe yes, maybe no. And that's the wrong question, anyway. Have we been living with a girl who's found her own slow path to eating? Yes. And along the way, we've learned a lot about how to parent, a lot about how to serve food, and a lot about how people who think they know just what to do to be healthy don't always know what to do to make my daughter healthy. But we do.