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  • Dose of DeAnn Episode 31: Feeding Tube Inclusiveness

    Posted by deann-r on March 26, 2019 at 7:00 am

    Happy Tuesday everyone!

    Recently, I came across a post in an SMA Facebook group, in which a family expressed their concerns about eating in front of their child. Their child has SMA and uses a feeding tube. To avoid making their child feel uncomfortable or excluded, they prefer to not eat in front of the child.

    As I read this post and saw other families with the same concerns, I wanted to share my perspective on this topic. In the latest episode of “Dose of DeAnn,” I talk about why I actually prefer that people do still eat in front of me. I’ve been using a feeding tube for years, and I feel more excluded when people don’t eat around me.

    Also in this episode, I talk about some ways to make using a feeding tube more inclusive. This is an important subject for many people in the SMA community, and I can understand why people who don’t have SMA may not know how to include people who use feeding tubes during mealtimes.


    Do you use a feeding tube? Let me know your thoughts in the comments, or right here in the forums.  Also, be sure to subscribe to the SMA News Today YouTube channel.

    ryan-berhar replied 5 years, 2 months ago 3 Members · 2 Replies
  • 2 Replies
  • kevin-schaefer

    March 26, 2019 at 4:15 pm

    As someone who doesn’t use a feeding tube, this was a really interesting topic to think about. I imagine that if I did use one, I’d have the same feelings as you. It is funny how people can get so worried about this kind of thing, when really it’s not a big deal. Thanks for sharing this!

  • ryan-berhar

    March 26, 2019 at 9:54 pm

    I’ve had a feeding tube since I was three. I can only speak for myself, but it’s an unbelievably minor thing. I was shocked to learn how many people are scared to get one. In terms of not eating in front of the kid, I’m actually a little mixed. I appreciate what they’re trying to do. I don’t particularly enjoy eating with other people, because, even though I can still eat, I can’t do it very well, so sometimes I get frustrated. However, if a deliberate effort was made by my family not to eat in front of me, that would make me feel ten times worse about the situation. Then I’d feel like more of a burden, as I’m sort of disrupting the family dinner.

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