In our ninth PWS University we dive into another set of questions sent to Latham Centers from parents who are continuing to adjust to everyday changes due to COVID-19. Patrice and Katrina answer an inquiry from a parent who has no Extended School Year (ESY) opportunities, and is seeking information on how to create a robust and safe program for her child. Patrice suggests ways to incorporate education and take advantage of virtual opportunities while still engaging in fun outdoor activities. Another parent has a child participating in a modified ESY program. Patrice reflects upon different ways to train staff in all programs and the resources available to all parents. Finally, Patrice and Katrina explore how to best include vocation in your child's current routine.
The ninth LivingHealthy Podcast targets specific questions from families around the country with a child in their life diagnosed with PWS. Patrice and Katrina tackle the following questions, and invite you give suggestions, or ask questions of your own at LivingHealthyPodcast@lathamcenters.org.
- Trying to get my child to exercise is near impossible, what are some non-food incentives that have worked for you?
- Most of the time, around others my child is so kind and sweet, while around me his worst behaviors ALWAYS come out. What can I do differently?
- I’m a single parent who is primary caretaker of my child, but it feels like I have no support, especially right now. What resources are available that I’m missing?
- Due to today’s circumstances, we’ve been spending a lot of time at home….being at home so much means more requests for food and snacks. Please help! What can I do to help curb this when our entire routine has been turned upside down?
During our seventh PWS University Podcast, Patrice Carroll and Katrina Fryklund explore elementary, middle, and high school PWS Consultations based on their recent experiences. In 2019 Carroll and Fryklund noticed an increase in consultation requests; in this podcast they explain the differences in consultations between age groups, and the consultants’ communication with school personnel and families. Carroll explains, “[when a child is in elementary school we’re] typically working with schools to develop a tighter routine, a more predictable day, [and] a more secure environment, to then the middle school years, [when] we’re doing a lot of consultation around managing behaviors, and that continues and usually increases in the high school years.” Fryklund and Patrice also touch on the importance of transitions to adulthood during the high school years, and preparation for upcoming life-changes. Lastly, the two discuss the models for consultation and how each varies according to the individual’s needs.
In Latham’s PWS University Podcast #6, Patrice Carroll (Director of PWS Services, Latham Centers) and Katrina Fryklund (Director of National Outreach, Latham Centers) discuss Executive Functioning Disorder (EFD) and Sensory Processing Disorder (SPD). They suggest that for someone with PWS and Executive Functioning Disorder, it may be most beneficial to break tasks down step-by-step. For someone with Sensory Processing Disorder, high-stimulus environments with bright lights and loud noises may make it difficult to focus on the task at hand. In the podcast, Patrice and Katrina explore the relationship between Prader-Willi syndrome and EFD/SPD, and touch upon the difference between genetics, environment, and behaviors. Additionally, they investigate helpful tools for someone with EFD and SPD, ranging from an individualized Sensory Toolbox to Wiping Wands. Ultimately, Patrice explains, “It’s important not to assume that something is behavioral or non-compliance,” rather ask yourself, ‘How can I best control the environment to help the person in my life with EFD and SPD?’
In this week’s PWS University, Latham Centers’ Katrina Fryklund, Director of National Outreach, and Dominic Monick, Residential Supervisor, lead up to the holiday week of festivities with a discussion of activity ideas. Dominic has worked with students with PWS, ages eight to 22 for seven years. During this podcast he discusses with Katrina his favorite fitness, arts and crafts, and philanthropy geared activities that work best for our students. He describes exercises that excite the kids at Latham Centers that could be augmented to your house, or your holiday party. He also explores the topic of crafts and how to manage long-term projects over multiple days. Katrina and Dominic conclude the podcast with a discussion of the underlying themes of all activities: buy-in and an understanding who you are serving, the time and capacity of the activity and environment, and creativity and imagination.
In this episode, Patrice Carroll and Katrina Fryklund cover the challenges of the winter holiday season in our world of PWS. The holidays can be a very difficult as it presents as an ultimate trifecta: heightened anxiety due to changes in routine, food focused events, and increased travel.
We cover topics ranging from suggestions for traveling by both air and land, to how to develop a strong support system during events. We also discuss the importance of social stories and sticking to a routine, as well as self-care and exit strategies. Other topics include preparing for restaurant outings, successful family "trainings", and the importance of safety.
For someone with PWS, looking forward to something good can be just an anxiety provoking as dreading something in the future. Keep this in mind as you prepare for the holiday season and understand that anxiety may be higher in general despite all the good feelings that come with festivities.
In this episode we discuss the importance of a positive attitude in the world of PWS. Patrice Carroll and Katrina Fryklund discuss examples used in program at Latham Centers and the significance of Positive Behavioral Supports when working with somebody who is diagnosed with PWS.
Patrice and Katrina also highlight POSITIVE EXPOSURE, an organization focused on creating a positive environment in the special needs community through photography, "POSITIVE EXPOSURE, founded in 1998, utilizes the arts, film and narratives to present the humanity and dignity of individuals living with genetic, physical, behavioral and intellectual differences. POSITIVE EXPOSURE celebrates the beauty of human diversity, inclusive of ethnicity, religion, age, ability, learning style, gender expression and sexual orientation" (https://positiveexposure.org/).
"A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst and it sparks extraordinary results" -Wade Boggs
In our second PWS University Podcast we introduce you to Annika. She has been a student at Latham Centers for three years who is incredibly proud and observant of her own growth. She describes what it means to stay safe, and continues by describing what healthy means to her. Annika also gives advice for children with PWS and parents who have a child in their life with PWS. Don't miss this opportunity to hear from one of our students at Latham Centers!
Patrice Carroll, Director of PWS Services, Latham Centers, and Katrina Fryklund, Director of National Outreach, Latham Centers, discuss the ins and outs of the upcoming podcast by Latham Centers, entitled LivingHealthy. In this podcast series Patrice and Katrina will explore Prader-Willi Syndrome and the forever changing special needs landscape, which will include information helpful to all parents with children who have special needs. Patrice discussed the world of PWS and says, "the purpose of the podcast and what we want everyone to take from this is that people living with PWS can live full, quality lives. Much of the information that you see online is either outdated, misinformed, or generally negative, and that is absolutely not the reality of life with PWS in the majority of cases."
August 16, 2019
I am proud to introduce Jake, a student at Latham Centers. In this first PWS University episode, you hear Jake discussing his talents, friendships with peers, and how it feels to have Prader-Willi syndrome. Jake truly represents the pride and happiness that grows with support of family and staff. Jake clearly discusses the challenges of living with PWS, but when you hear his interview, you see that the positives in his life far exceed the challenges. At Latham Centers, we see this every single day. Not only is it possible to live a full, quality life with PWS, it is happening every single day. When I asked Jake why he wants to be a police officer, he answered that they are always helping people and always there to support people who need help. Listen to my conversation with Jake here:
-Patrice Carroll, Director of Prader-Willi Syndrome Services, Latham Centers