How to Talk to My Older Child About Weaning
Amanda Kyle, MA, CCC-SLP
Weaning an older child (toddlers and beyond) can be a tricky game, because children with the cognitive understanding of being tube-fed need to “buy in” to the process of learning how to eat. That means that parents have the responsibility of including their older child in the weaning process so that they understand what’s happening – and why! Because weaning is a big change to their world!
For younger ‘big kids,’ we simplify this explanation a bit, but for older kids, we can use a bit more complex language to help them to understand that the rules and routines around mealtimes are now changing, how their body feels is changing, how we are offering the chance to eat is changing, and eventually, why the tube is being removed. All of these changes can seem very daunting to a child because, even if they are part of family mealtimes, they may not understand why these changes are coming and how they will impact the experience of eating.
To help with this process, parents should consider communicating these things:
Establish mealtime rules and routines: Within Division of Responsibility, establishing the ‘when to eat,’ ‘what to offer,’ ‘where to sit’ are the caregiver jobs. This often means changing from a typical tube fed schedule to an ‘oral kiddo’ schedule of eating every 2-3 hours. As you make this shift, help your child to understand their new schedule with routine cues: for younger children, a picture schedule and/or a timer may be helpful. For older children, a warning of “we’re going to have lunch in about 15 minutes” may help. For both, having meals together when possible and establishing some “table time” routines, such as talking about “highs and lows” or recounting the day, may be helpful as well.
Acknowledge the new sensations that your child’s body is feeling: This is really important to do, because hunger and satiety are very unique feelings, and when children are tube fed, they don’t experience the same bodily sensations that non-tube-fed people do. So when appetite begins to wake up, they really have no reference for what their body is doing, or for the understanding that when you feel hunger, you need to eat.
Some kids do associate that feeling with getting their tube feed, though, and the feeling of satiety after. One way to help build this correlation is to explain what you’re doing: “We are going to start to move food from your tummy/nose tube to your mouth. This is going to help your tummy feel full.” Notice that this is an explanation of what’s happening, and not a command to “eat, or we’ll have to do your tube feed.” Explanations leave the choice to eat with the child, which is another important facet of DOR. Similarly, when approaching meal/snack times, cue the hungry (or ‘hangry’) feelings that you know are there with comments like, “I bet you are feeling like that because you are hungry. Let’s go have our snack and see how our body feels after.” Even just giving a label to the feeling and addressing the cause and effect can be very helpful.
Remember that tube removal can be emotionally tricky: Tube removal is often much harder for children than parents anticipate. Sometimes, it’s harder for parents than they initially think that it will be! Especially with older children that have had their tube their whole life. Many kids see their tube as an appendage: they are as attached to it as an arm or a toe. Many parents haven’t seen their child without a tube, and when it’s time for removal, feel a lot of anxiety around removing a safety net.
When tube removal time comes, it is important to include your child in the discussion. While we do not leave medical decision-making to a child, hearing and respecting their feelings about saying goodbye to their tube is an important part of processing the change. Begin talking to them from the beginning of the wean about the eventuality of the tube coming out. Gauge if this is stressful or exciting for them. Talk about it often in a neutral, matter of fact way. When you are looking at the actual tube removal, give a little bit of decision-making to older kids if feasible (would you like to do it in August or September?). And, my favorite: honor the tube graduation. Some families do this by getting an extra tube (either from their doctor or from their supply stash), and going to build their own stuffed animal or adding it to one from a regular toy store. This gives your child the chance to see their tube even after it’s removed.
At the end of the day, weaning from the tube is a big life change, not only for you as parents, but also for children, especially older children. Including them in the process, as well as helping them to understand the changes will go a long way in helping them adjust to these changes.