If your tube-fed child shows interest in food, watches you intently while you eat, plays with food when you aren't looking or are out of the room, or does any tasting or drinking at all, something may be afoot. After Heath passed his swallow study, we knew that Heath was physically capable of eating all his food. He just loved gnawing and licking food too much not to be an eater! But we didn't know how to get him from zero to 60, so to speak. We were told, "Let Heath set the pace," but wondered how he would do that when he was always stuffed to the gills. My friend and fellow tube-feeding mom Olga and I began to hunt for answers.
We discovered there are vastly different philosophies with regard to tube weaning. The two main schools are behavioral ("You can't have the TV on/see us cheer for you/get to play with your favorite toy, etc. unless you eat") and self-regulation ("We're going to let you be hungry. Here's some food. You can decide whether to eat it or not and we'll support you in your choice."). Many gifted weaning experts use a combination of the two approaches. Each school has its dogmatic proponents as well as its skeptics. Children do become eaters with both approaches and you need to decide what's best for your child and be aware of what your child's therapist's philosophy is, if you have one. Heath worked with Markus Wilken, my favorite exponent of self-regulation weaning, and that philosophy is reflected here. (Aspects of self-regulation are especially ideal for kids with oral trauma, who are suspicious of any attempt to pressure them. ) That said, I have clapped, cheered, and "rewarded" Heath with kisses and fun after a big bite when it seemed the right thing to do. After all, most of what we think of as parenting is one big behavioral extravaganza.
How I Figured It Out.
I started out shortly after Heath was released from the NICU by scouring the tome Pre-Feeding Skills and learned about the physiological, neurological, social and emotional components of feeding disorders. The book contains exhaustive lists of factors that affect feeding disorders and categorizes numerous pathologies. It was our first warning not to tread too heavily or force things on Heath, but try as I might I couldn't find a clear path forward for him. I liked How to Get Your Kid to Eat...But Not Too Much, which has wonderful, no-pressure principles for feeding kids with all kinds of issues, and reinforced my sense that we shouldn't pressure him with spoon-in-the-face therapies. I think this book will come in handy now that Heath is an eater!
When Heath was 11 months old, I ran across Markus' and Irene Chatoor's research on Posttraumatic Feeding Disorder and a light bulb exploded in my head. Everything clicked. I finally internalized how the lifesaving intubation and suctioning Heath underwent at birth and in the NICU overwhelmed his little mouth, throat and nose, resulting in traumatized fight-or-flight reactions to oral feeding and total dependency on the tube. The more I read, the more clearly I knew hunger was the only way to put the power he had lost back in his hands.
I scoured the Austrian and German research, some of which is cited here, on self-regulation and its efficacy. Over 90% of children medically able to eat will begin to do so if given the chance to experience hunger under safe conditions. This approach requires very close monitoring by a pediatrician, qualified therapist, and ideally an infant psychologist. It's the road we took, and it brought about miracles for Heath in less than two weeks, but it's not the road for everyone. We had a support system of rock-solid professionals including Markus and a veteran pediatrician who saw the wisdom of his approach.
I also researched how typical children naturally learn to take solid foods safely, at their own pace, and why they thrust food out with their tongues out when they are first learning to eat. The British book Baby Led Weaning was a big eye opener! It helped me understand why Heath had zero interest in eating purees, especially if we were holding the spoon.
Being part of a support group for tube weaning parents can make all the difference if you are researching or contemplating a wean for your child. It was on the Seattle Parents Feeding Support Yahoo! Group that I first met Olga, Maria, Leslie, Judy, and Thuy, fantastic moms who worked together to find weaning options for our gang of extraordinary little ones. Blogs like Amber's and Brett's inspired us. We discovered Tube Fed Kids Deserve to Eat, an international community with fascinating daily discussions. You can create your own local group online by contacting therapists and GI docs to find other families in the same boat. Then try getting together for Baby Picnics to let the kids play with food while you share ideas, plan for the future, and celebrate how far you have all come on your journey.If you would like to know more about what tube weaning is really like, here are the details of Heath's Wean.