Helping Programs Accommodate a Feeding Tube

by Anne Penniston Grunsted

My son Bobby was born with a serious heart defect and Down syndrome. His respiration rate was often over one hundred breaths a minute and we realized quickly that oral feeding was dangerous. He began using an NG-tube at four weeks and got a Mic-Key button gastrostomy tube at one year. He subsequently developed serious oral aversions that made the move to oral eating difficult.

child with down syndrome surfingAt ten, he still relies on the feeding tube for his nourishment. After a lot of patience and therapeutic help, he enjoys nibbling on food and sharing the social experience of a meal, but whether he progresses any further is completely up to him.

For all the medical interventions that have been part of his life, the feeding tube has been the least problematic. After years of fixating on the need for him to eat orally, I realized that this skill is low on the list of developmental milestones that can improve his life. Our primary feeding goal right now is for him to learn how to administer a G-tube feed himself.

Based on our experience and what we know of the experience of many others, I blanch when I see quality of life being defined by whether or not a person has a feeding tube. If anything, my son’s feeding tube has dramatically increased his quality of life by ensuring he receives complete nutrition and the medication he needs to improve his health. The way the media talks about feeding tubes unnecessarily stigmatizes kids and adults who use them.

Accommodating the Tube

As such, the biggest issue we have with Bobby’s feeding tube is that other people’s fear of the tube constantly threatens to limit his independence from my wife and me:

  • When he was a toddler, day care centers frequently cited their lack of nursing care as a reason to reject him.
  • We have trouble finding babysitters willing to feed Bobby.
  • We have to search for summer camps that will accommodate his feeding needs.

When Bobby was younger, we relied on legal rights of reasonable accommodation to force his inclusion. However, this route is exhausting and, at best, led to Bobby being in the care of people who didn’t embrace his presence.

More often, I’ve had success in convincing people that administering a feed is easy and does not require a nursing degree. Some institutions are bound by regulations, but many just need to have the fear of the feeding tube eased.

I’m still learning how best to handle these situations, but my current tips for success are as follows:

  • Start with a phone call. I never enroll Bobby in a program and passively wait for the staff to discover his feeding needs. I call before filling out any forms. This gives me the opportunity to introduce the idea that staff can accommodate a feeding tube before they construct unnecessary barriers to including him.
  • I describe Bobby before I bring up the tube. “My son is an active boy with a silly sense of humor. Children and adults alike enjoy his company. He just has this little thing called a feeding tube…”
  • I address the fears I had the first time I fed Bobby through a tube, emphasizing that even an unsuccessful hook up will do Bobby no harm. The worse case scenario is a leaky tube that creates a mess. I stress that I have taught many people how to feed him in a matter of minutes.
  • I overwhelm them with support. I volunteer to come in at their convenience and train the staff. I assure them that I am only a phone call away if they have questions. I bring in a written “how to” as a leave behind.

Essentially, I provide a solution before the person I’m talking to even has time to define the feeding tube as a potential problem. It’s not a perfect plan, but Bobby has had many positive experiences thanks to this strategy. In addition, many adults have had their introduction to working with children with disabilities through Bobby.

My hope is that we taught them to be open to accommodation before automatically creating barriers. A feeding tube should not be a limitation.

Author: Anne Penniston Grunsted • Date: 1/25/2019

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