For Family & Friends

your support matters.

Your support really matters, and you can provide a valuable support network by following a few simple guidelines. In a recent study comparing parents of children with a variety of disorders and disabilities, the parents of children with Prader-Willi syndrome reported the highest levels of stress in any participating group. The same study found that parents of children with PWS listed other family members and friends as their main source of support. Do not underestimate how important your support is. Extended family and friends of people with Prader-Willi syndrome are in the unique position to have an immediate, positive impact on their life and on the lives of their family.

When it comes to hosting a get together, it is important to consult with the parent/caregiver to prepare a low-stress environment for the individual with PWS and their family and to assure the agreed preparation steps have been taken. Both food and even some non-food items may cause anxiety so ask about what may be difficult for the individual with PWS and place it out of sight. Ensure that large gatherings and meals are well planned; meal times, people eating outside of set times, and unexpected changes in menu can be very difficult adjustments for people with PWS. Know that buffet or self-serve “family-style” dinners are stressful and may evoke food-seeking behaviors and lead to anxiety and behavioral issues. Safeguard against access to food with clear instructions for other guests not to leave their plate unattended.

Prepare your home before each visit. Keep food out of sight; ensure food has been removed from around the house and placed in a secure location such as a cupboard or pantry. Inform the parent/caregiver of who will be present, what foods will be prepared, and what everyone is to bring. Communicate changes in menu as soon as possible. Events involving food require the parent/caregiver to prepare the individual with PWS ahead of time including discussing what foods are available and making “food trades” before they come over.

As a host you can provide a supportive environment. Ensure arriving guests immediately place food and other items in a secured area such as a pantry or locked bedroom. If the parent or caregiver hasn’t already, help decide who is in charge of supervising the person with PWS; 30 minute “shifts” give everyone time to visit and relax. It would be great to provide activities that don’t involve food, such as games, sports, or crafts.

When you want to spend time together away from home, look for food-free places and activities; outdoor activities such as the zoo, a museum or historical site, or a visit to a park are all great options.

When the family doesn’t have to devote their energy to preventing food-seeking behavior, they have an opportunity to relax with you. When you, as part of their support network, take the time to learn what triggers syndrome-related behavior, you enable the parents to enjoy more “normal” social interactions. Time with family and friends is rejuvenating for the whole family.

Your loved one or friend lives with PWS every day; though PWS shares similarities with other disabilities, it is unique and all-encompassing. Educating yourself about the syndrome and learning how to provide a safe, secure environment for your loved one or friend will be greatly appreciated.

Keep in mind that food is a constant source of anxiety for people with PWS. Meals away from home and their normal routine are very stressful; anything you can do to reduce anxiety is immensely helpful to the individual and their family.

If you’re having someone with PWS visit your house:

∙ Remove any consumable items such as: candy, mints, gum, and nut dishes you typically might have out. Don’t forget accessible places such as nightstands, desk drawers, etc. Secure purses, bags, packages, etc. as well.

∙ Remove food from kitchen counters if possible. Out of sight is not out of mind for people with PWS but definitely helps.

∙ Discuss food to be served at meals/parties ahead of time with the parent/caregiver to the extent possible. This allows them to prepare by:

  • Letting the child or adult know what to expect
  • Cutting calories or altering meal plans to allow for a higher calorie meal or treat.
  • Enabling them to bring an alternative healthier meal or snack
  • Knowing approximately when meals or snacks will be served
  • Planning to leave before dessert is served, if necessary

∙ Remember that for people with PWS, “just one” or “just a little bit” DOES hurt.

∙ Don’t assume more people means more eyes on someone with PWS. Many medical emergencies occur when everyone presumes someone else will watch the person with PWS. Establishing an eyes-on routine can help reduce the individual’s anxiety and provides people a chance for one-on-one time with the individual with PWS.

  •  Make a plan; always know who is dedicated to supervising the person with PWS
  • Switch supervisors every 30 minutes or so to keep everyone refreshed
  • Confirm a clear hand-off protocol.

If you’re with someone who has Prader-Willi syndrome:

∙ Do not offer them any food or beverages. Ask their parent/caregiver privately.

∙ Do not talk about food in front of them.

∙ Do not eat in front of them if they are not also eating.

∙ Do not ask questions about food or beverages in front of them.

∙ If you or other children want a snack or treat, find an opportunity eat away from the person with PWS

∙ Discreetly discuss when to eat if a set time has not been decided beforehand.

∙ Defer questions about food to the parent/caregiver.

∙ If someone with PWS is left in your care, follow their food plan exactly.

Structure and routine are extremely important to persons with PWS; unexpected changes, no matter how small, can derail them. Keep the following tips in mind.

∙ Speak in concrete terms; most people who have PWS have difficulty with abstract terms.

∙ Let them know what to expect. For instance, clearly state game rules, turn taking, etc.

∙ Keep your promises; if you say you’re going to do something, do it.

∙ It’s ok to set limits on repeated questions; i.e. “I’ve already answered that question, so I will only answer it one more time”

∙ Allow the parent/caregiver to manage a meltdown or behavioral issue in their own way; it may not be how you manage your children, but they deal with the syndrome every day and know the best way to manage their child.

∙ Reasoning with someone with PWS when they’re in the midst of a meltdown will not work.

∙ Re-directing the individual to a new or desired activity will often be successful, however there are times when you may need to just give the person time to calm down.

∙ If someone with PWS is left in your care, stick to the schedule and be sure to follow the parent/caregiver’s instructions for dealing with behavioral issues. 

Thank you for taking the time to learn more about PWS in order to be a valuable part of your loved one or friend’s support network.