22 October 2005

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.

9 comments:

Phantom Scribbler said...

I'm so impressed with the way you and Politica handled and are handling the situation. I think the part you left out of the "combination of factors" is the patient and loving parents who focused on ways to help CG learn to eat, rather than turning it into a power struggle. I don't think I would have acquitted myself so well in a similar situation.

jo(e) said...

Thanks for telling this whole story. I am so impressed with how you handled it. Curious Girl is lucky indeed.

susan said...

Actually, I think we're the lucky ones, in that we are far, far better parents for having gone through this whole experience. We have gotten so much support from so many people on our medical/therapeutic teams, and our speech therapist helped us focus a lot of our parenting instincts. Not that anything she said wasn't something I couldn't have thought of myself (for example, at around 12 months she was urging us to use the sign for "my turn" and to practice turn taking with CG: I thought it was too early, but it laid the script for taking turns later on, and also laid the script for turntaking eating games). I think I communicate better, and listen better, for having had all this support.

Phantom, you're doing pretty darn well avoiding the power struggles with LG and the potty. You'd rise to the occasion if you needed to, which is just what we did. And this isn't to say it's not always been easy (since this post describes the kind of high road lessons learned). I've certainly had my share of lunches where I yelled at her to eat, had my nights of bleakness thinking she was never going to eat (not that having a feeding tube is really much of a bar to adult life: if that were the worst case scenario it wouldn't have been too bad in some ways), had my share of petulant fits when Politica called me on being too pushy with the food. But on the whole, yes, I've learned to be patient, to serve the food, and let her learn to eat it.

Phantom Scribbler said...

Oh, you're very nice, Susan, but notice that I haven't posted about potty training for a week ot two. Yeah, I haven't been so good about not getting into power struggles lately. Sigh.

I really think I could take valuable, valuable lessons from what you and Politica did with CG.

susan said...

Our speech therapist was really great for us, Phantom, since she always reminded us that a) our child is smarter than we are and b) it really is ok, possible, permissible to go ahead and let her do the work.

Maybe you should get Ellyn Satter's How to get your child to eat (but not too much and read it, substituting "potty training" for every reference to food :). More seriously, it really is hard to step back, especially when it seems like so many other people's kids are doing something that is allegedly natural.

It is hard to give up the power struggles, though, especially when it seems like a capable kid should be able to do a different behavior. But then afterwards, I'd be thinking "all that agita for what, another half ounce?" and feel silly. It is definitely a rollercoaster.

Politica said...

Dear Phantom,

This is Politica horning in on Susan's blog again. Thanks for all your kind words. I think that Susan and I did do a pretty good job with CG, but then again we've always been certain that my kid would end up in therapy one day. We just want her to have her own issues, instead of ours, you know? And we joke constantly about how CG's issues will definitely revolve around food...

I wanted to reiterate what Susan said: our speech therapist rocked. She was a terrific sounding board for us (even more so b/c her own daughter was going through feeding issues at the same time) and really did convince us that CG was a smart little cookie, probably smarter than either of us. It sounds like LG is smart as well (hence my curiosity and, err, trepidation about putting the two of them together!) For what it's worth, our lives really did get smoother when we put more responsibilities on her small yet mighty shoulders. Not that she always ate more, mind you. But at least were less crazed about something that we, in fact, had no control over short of force-feeding. And I have utterly no idea how one would force-poop a child...

Hang in there!

Phantom Scribbler said...

Thanks for the helpful advice and kind words, both of you! I will get that book and take a look -- it couldn't hurt. Unless it will make me feel bad about how my kids live on cheerios and tortilla chips...

Yankee T said...

What an excellent post, and what wonderful parents! Hats off to you!

susan said...

Awww...I didn't write this so people would say nice things! thanks for the kind words.