#TubieTalk: School + Work
Back to school is in full swing and workdays are transitioning back to in-office. Whether you are a parent of a tubie headed to school or a grown-up tubie headed into the office, planning to administer feeds outside of your home can be stressful. Therefore, TubieTalk gathered first-hand advice, helpful tips, and useful resources to ensure you feel confident while tube feeding at school or work.
Thank you to everyone who shared their experiences and advice on this month’s Tubietalk topic. We hope sharing this first-hand knowledge helps others in similar situations.
TUBE FEEDING AT SCHOOL
Start your child's transition back to school by completing all the necessary paperwork. Depending on your school system, you will be provided with either a 504 Plan or an IEP and an IHP, to ensure the school properly cares for your child. To learn more about each plan, please click HERE.
After completing the paperwork for your child, it may be a good idea for you to provide extra instruction and education to your child's teacher, staff, and classmates. For tips on how to educate teachers and classmates, along with first-hand Tubietalk advice from members of the tubie community, please read below:
EDUCATING TEACHERS & STAFF ON TUBE FEEDING:
“Write down specific instructions for your child’s feeding regimen and make sure at least two people are trained. Offer to train staff (nurse, nurse assistant, aide) on tube feeding at school.”
“If you are sending in supplies (and backup supplies), make sure they are clean and clearly labeled for your child.”
“If you are sending in a venting tube to stay at school, discuss cleaning with the school nurse, aide or staff. During the school year, ask that it be sent home so you can evaluate if it needs replacing.”
“Ensure food or formula is in a cool pack with an ice pack if it needs to remain cool during the day.”
“If you are sending a pump and backpack, make sure that staff understands how to troubleshoot alarms. Make it clear that turning the pump off and not feeding your child isn’t an acceptable solution.”
“If your child is an oral eater, provide any information to the teacher about food allergies, unsafe foods, and aspiration risks. You can state that only food you send in should be served to your child.”
“If your child has a feeding pump, it may have to be turned off during bus rides. Make sure there is a dedicated person (and a back-up) who is responsible for turning it back on.”
EDUCATING CLASSMATES ON TUBE FEEDING:
Educate classmates by sharing resources and talking openly about tube feeding.
Think about scheduling a time to discuss tube feeding in your child’s classroom.
The Feeding Tube Awareness Foundation has great resources regarding feeding at school, such as a comprehensive school training presentation for school nurses, teachers, aides, and other school staff.
If your child is comfortable, have them answer questions and show them the tube to encourage acceptance.
Recommend some tips to classmates such as:
Report any dangerous or odd behavior to your teacher
Treat others how you want to be treated
Do your best to ask appropriate questions
Learn a helping hand if asked to do so
FIRST-HAND ADVICE FROM THE TUBIETALK COMMUNITY:
“As a teacher/ tubie mom, a good tip: if you're not sure if your question is appropriate/ kind, you can always ask the teacher first” -Sara
“I found it was key to educate my son’s classmates” -Leanne
“Don’t make a big deal about it, just do it!” -Frelin-Westling Family
“I use a backpack and I run feeds while going to uni!” -Hannah
“When I had in person classes I had access to the ‘quite room’ to do my medications. This was kinda an extension to the campus nurse's office and it helped massively!” -Anna
Use a “great accessible backpack and/or flying squirrel pump holder for continuous feeds.” -Ella
TUBE FEEDING AT WORK
Tube feeding at work may sound complicated but should not be a cause for concern. It is best to be upfront and honest about your medical needs with your supervisor and ask for help when you need it. There is no need to hide your tube from others or keep it a secret, as this can cause unnecessary stress. For first-hand Tubietalk advice and professional tips on how to adjust to the office lifestyle as a tubie, please read below:
1. BE PREPARED
Make a checklist of the proper supplies for tube feeding at work. Before heading to your office, run through your checklist to ensure you have all your supplies. Also, make an emergency kit to keep in your car or desk in case of potential mishaps.
2. COMMUNICATE
Communicate openly with your supervisor, co-workers, and the Human Resources department to help them better understand your medical needs. Make them aware of your situation and ask for adjusted break times as well as a private place to administer feeds with access to resources such as a clean sink, countertop, and shelf area for cleaning and storing supplies.
3. KNOW YOUR RIGHTS
Legally, your company should provide you with a description of lunchtimes, break times, and available rest areas. If they do not, consult with your Human Resources department and find where this information is located. Note that laws like the Family and Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) help protect workers from being fired for health reasons.
4. BE CONFIDENT
Remember that tube feeding is normal! Transparency, communication, and confidence will all help you become an expert on tube feeding at work. And who knows, maybe there is another tubie just like you at work!
FIRST-HAND ADVICE FROM THE TUBIETALK COMMUNITY:
“I keep backup supplies (giving sets, syringes, etc.) in my desk drawer just in case!” and “prep all medication in the morning so I can just take it when I need without disrupting the day” -Mary
“Make ready blended foods in the small, disposable baby food pouches with bolink adapter and push intake a few seconds per pouch” -Perry
“If you are comfortable, talk to your colleagues and managers about your tube and feed. It helps normalize it for everyone and helps people support you and understand as best they can. For example, my colleagues know that if my backpack is beeping, it’s nothing to worry about! My boss understands that sometimes tubes stop working and they need to be replaced etc.” -Mary
“Talk about adjusting break times etc. I don’t have a full lunch break because I don’t need to eat. Instead, I have smaller breaks throughout the day to do medications and have little rests which work better for me.” -Mary
“I wear a t-shirt that is usually made for biking [to hold feeding pump equipment] and wear my uniform above it, so nobody can see it!” -Hannah