Summer is here! This means different things to different families, often depending on the age of your loved one with PWS. This time may bring a mix of relief and worry, a freeing of the schedule and a burdening of supervision needs. While every family is different with their own unique needs during this time of year, we’ve curated a list of tips for navigating summertime celebrations that will hopefully give every family a bit of relief and more confidence in attending summertime gatherings.
BBQs, Potlucks, and Gatherings with Food
BBQs and Potlucks aren’t always the most PWS-friendly meals. Some families may choose to bring a separate meal for their loved one or avoid the BBQ altogether. Other families may decide to adjust the food options where they can.
If you are unable to bring your own food, or if you find yourself at a BBQ without the healthy options you were hoping for and your loved one is committed to staying, below are some tips on how to adjust traditional BBQ food to something more PWS-friendly:
- *Serve hot dogs or sausages without a bun
*Do not add BBQ sauce on the side
*Put green salads on the plate first to take up space
*Choose potato salad over macaroni salad
*Choose hummus and vegetables over cheese and crackers
*Choose watermelon slices over jello or fruit salads
Remember that if “everyone” is keeping an eye on your loved one with PWS, likely no one really is. When we think others are supervising, it is easy to assume that someone else has eyes on the individual with PWS. This is likely not the case, and the lack of supervision can have serious consequences. When you are at a gathering, designate shifts with others to be acutely aware of the individual. Of course, this depends on the supervision needs of the individual and the presence of food. Perhaps they don’t need such strict supervision. But if food is at the gathering, likely they do. If you have to step away for any moment, be sure to ask someone specifically to keep an eye on your loved one until you return.
Consider finding out the menu ahead of time and adjusting. Can you have a say in what food is served? Will there be sweet treats? Should you bring an alternative or perhaps adjust calories to accommodate the treat? Showing up after the food has been served is also an option. Depending on the type of gathering and your relationship with the host, it may be possible to have a designated time that the food is out and a clear point in the evening when the food is put away, and the festivities focus on activities rather than eating.
If you can, discuss the menu with your loved one before going to the event. Let them know what food options will be available and what they will be allowed to eat. Be sure to include them in the planning (would you like to have the potato salad or the deviled egg?) so they have a sense of control. This can have a positive effect on their behavior.
When your loved one has eaten, if you are not at a gathering where the food can be put away, find an activity or a place to gather that is away from the food. If the food is in sight, your loved one will likely not be able to forget about it.
Be aware of discarded plates of food. If you feel comfortable with the people in attendance, be sure to let them know that for the safety of your family, plates need to be discarded once they are finished and that any food left unattended could have serious consequences for your loved one. You may need to do an occasional sweep, especially if there are children present, for forgotten plates and half eaten cupcakes.
If the presence of food or anything else becomes too challenging for your family, feel free to leave. Go to a park instead or go home to play a board game or watch a movie. Even if people are pressuring you to stay, the sanity and safety of your family are more important. If you have multiple children and the siblings would like to stay, it’s okay to let one parent stay or leave the siblings under the supervision of a trusted friend and pick them up later. PWS does not mean that we can’t attend BBQs and other gatherings, but that we may just need to be a little more creative and flexible in how we do it.
Heat
It is important to remember that our loved ones with PWS are very susceptible to heat and sunlight. If you are attending a day gathering, remember to bring essential items to protect them.
- *Sunhats
*Wear light clothing
*Sunscreen (remember to reapply often, especially if in the water)
*Cooling blankets
*Spray bottles of water
*Hang out in the shade
*Water they will drink! Since water is not something most of our loved ones are prone to enjoy, it is important to find ways to keep them hydrated. Water infused with lemon/cucumber/mint is very hydrating and has a pleasant taste that will be more inspiring. Electrolyte packets, though they do contain sugar, can be very helpful in getting your loved one to drink. At times, the need for hydration may outweigh the risk of sugar.
For a more in-depth article on how to keep our loved one safe in the heat, check out our blog Staying Safe in the Heat – Prader-Willi Syndrome Association | USA
Noise
Large, or even small gatherings may become overwhelming to your loved one with PWS, especially with loud activities like fireworks. Talk to your loved one ahead of time to let them know what kind of activities will be taking place. Ask them if they have any soothing or calming activity they would like to bring, like a word search or coloring activity. A quiet corner away from chaos can sometimes be all that is needed for your loved one while you stay and enjoy the main activities.
Noise cancelling headphones may also help with the stimulation of loud noises, music, or just the cacophony of a crowd. If necessary, consider staying home and watching fireworks on the tv.
Being Social
It might also be a good idea to prep your child before any social gatherings to let them know what they can expect. Discuss the guidelines around food if there will be any and remind them that they are only to accept food from a trusted caregiver. Discuss what questions people may ask them and how they can respond. Role play potential interactions they may have, like how to ask other kids if they can join the game or how to talk about their hobbies or work with another person. Be sure there is a plan on where they can go if they need a break, or a word they can say to express to the caregiver that they are overstimulated.
Enjoy the Summer Celebrations
As we like to reiterate, our loved ones with PWS can and want to participate in life like we all do. There may be some challenges to certain gatherings and functions, but with the right preparation and adjustments, your family can overcome those obstacles and enjoy social gatherings together.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.