Helpful Tips When Caring for A Special Needs Child

Tips while using a G Tube

  • Lock the G tube extension and double check by turning it to the right before starting the feeding. When you have other kids, much to do and are feeling overwhelmed, locking your child’s G tube may slip your mind like it has mine.
  • Avoid transferring your child while feeding or disconnect the tube and reconnect when your child has moved. When Savannah first got a G tube, I made the mistake of moving Savannah from the car to the house and from a chair to my lap which caused her G tube to come out.
  • The G tube extension has 2 outputs, use bandage tape to block off one of the outputs, then the G extension tube cap will not remove on its own and will not leak.
    Before I discovered taping one of the extension outputs, we have had days, which formula leaked all over the place, causing huge messes and Savannah didn’t receive her entire feeding.
  • Figure out the amount of formula that your child can tolerate and figure out what amount is too much.
  • If your child has a G tube and has reflux, my suggestion is to separate the water intake from the formula feedings.

Other Suggestions

  • Bend your child’s leg(s) when putting him or her (criss-cross applesauce position) in a chair or car seat, which makes it much easier to get his or her behind all of the way in the seat.
  • Bring extra clothes, wipes and supplies when you go out in the community.
  • If you make changes to anything (i.e. routine, feedings, medications), make one at a time, then you know what worked and didn’t worked.
  • Make sure your child’s wheelchair/ stroller is lightweight and not too heavy or difficult to handle.
  • Make sure you explore all of your options before ordering equipment especially a stroller/ wheelchair. Some companies will give you a loaner to try out before purchasing. 
  • A swallow study should be done every year to ensure your child is swallowing properly. Adapt her/his oral diet according to the results of the swallow study and what foods your child can handle. 
  • Create a daily routine/ schedule and be flexible to change it at times.
  • Besides taking care of your special needs child, spend quality time doing preferred activities that he or she loves.
  • Take a break. Everyone feels overwhelmed and stressed at times. Taking breaks from taking care of your child/ children will elevate some of that stress. 
  • Organization is key to locate items when you need them. I have specific designated areas for all Savannah’s feeding and hygiene care supplies and therapy equipment.
  • Prepare items such as lunches, formula and clothes for the next dwyrge night before.
  •  If you have an active child like I do, padding equipment such as strollers and toilet chairs and seating devices are essential. I use pool noodles and colored duck tape to pad Savannah’s equipment.

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Savannah Smiles

15 Comments

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