To the Moms Who Think It’s Rude When Their Children Stare at My Son’s Feeding Tube

I am a new mom to the special needs community. My 4-month-old son has an undiagnosed condition that is believed to be a genetic neurological disorder. This disorder has required him to use a feeding tube since birth, at first a nasogastric tube and now a gastronomy tube (G-tube). We may be able to wean him off one day, but he may also remain tube-fed for the rest of his life.

What amazes me is how much my perspective of the world has changed in this short time. One of the ways is in how we handle our kids when they stare at others. I remember once telling my daughter while we stood in line at Target that it was rude to stare at a young girl, probably about 5 or 6, who was in an electric wheelchair. I cringed when I saw her mother see us and hoped she didn’t realize my daughter had been staring. And if she did, I prayed she understood that I would “handle it.” That mom has so much to worry about, I thought, and I don’t want her to be embarrassed.

Now that I am that mom, I am very aware that other people notice my son being fed through his G-tube, and not usually through positive encounters. Now I realize it is kind of awful to think I was discouraging my daughter from noticing another child. I have seen other moms shush their children for curiously asking about my son and turning them away. It hurts me to see innocent, curious kids noticing my son and wanting to learn more but firmly being told, “No, that’s not nice.”

The thing is, some babies eat by bottle, some nurse, some have tubes. It has taken time to get where I am, but I can comfortably say my son’s G-tube is now a part of our family’s normal. Our other kids have stuffed animals with G-tubes. They’ve learned how to start feedings and how to give medicine. I realize, though, that most children haven’t had exposure to a feeding tube, or many other special needs kids can have. And that’s OK! Just like my husband and I have increased our children’s exposure to feeding tubes and taught them how they are used, other children want to learn the same things when they come across them in public.

And this is one of the many lessons my son has taught me: It was me who was being rude that day at Target for teaching my daughter to ignore that young girl. To her mother, I am so sorry. In that moment, I am sure what you needed was to have another mom show her child that your daughter is very much the same. “I’m sure she likes Elsa, too,” I should have said. “Let’s find out her name.” I am sorry I instructed my daughter to ignore yours. She was trying to teach me an important lesson in accepting others, and instead I instructed her that it was impolite to accept your daughter. It breaks my heart to know I did that.

To all the moms out there: Your child doesn’t stare to be rude. Your child is looking because he is curious. He’s soaking up information from all around his world, and my son’s feeding tube may have him perplexed. We eat with our mouths, he may be thinking. So why not that boy?  He could want to understand, to learn more. And every time he is shushed or told it’s rude to stare, he is likely getting the message that he should ignore my child. This has been my biggest fear for my son: that he will be ignored by others. You have the power to put my biggest fear to rest.

Instead of shushing your child, please introduce him to us. I would like to show your child that my son is like any other baby: He wants to be held, he likes to cuddle, he has favorite toys and siblings he looks for when he hears them enter a room. He coos at us when we smile and talk to him. If I could show your child that this tube is how my son eats, then maybe the next time your child saw someone being fed by tube, he wouldn’t be curious anymore. He might be more comfortable introducing himself and just might make a friend with a child who may not have many.

We don’t know why my son is missing his suck reflex, and we hope he doesn’t need his tube forever. The next time you catch your child staring, try taking that awkward first step by reaching out to that other mom. Your kindness will go a long way. Introduce yourselves, show your child what accepting others looks like, encourage him to value the uniqueness in himself and others. This one small act may help that child’s mother worry just a bit less about the world her child with special needs is facing. This one small act could brighten the day or week for that mother and child much more than you know.

If anyone can truly value a friendship, I believe it will be my son. Let’s teach our children how to be that friend.

The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.