For the month of January, we celebrated Mental Wellness Month. While it is important to care for your mental wellness all year, it’s nice to be reminded at times. One of our key focuses was on the mental wellness of individuals with PWS. To this end, we asked our Adults with PWS Advisory Board to share their tips for mental wellness. We shared these on social media but wanted to put them together into an easy to find blog for families looking for ideas and inspiration.
As we shared these posts, we asked our community if they had any tips to share. Read below to find those tips as well.
If your loved one with PWS is struggling with their mental wellness, please remember that you can reach out to us at info@pwsausa.org or by calling our hotline at 941-312-0400.
Adults with PWS Advisory Board:
“I am currently struggling with depression. Before I was diagnosed with depression, I felt so bad that I checked myself into the hospital. When I was discharged from the hospital, I began calling around to find the right behavioral services and a psychiatrist. I am now on medication. I see my therapist every two weeks, and my psychiatrist every six months to discuss my progress and if any changes need to be made to my medication. I see a psychologist when needed. I am currently in two dialectical behavior therapy groups which have been very helpful. I am currently working with a therapist to help me find ways to work through those emotions instead of acting upon them. I am currently working through my emotions by journaling, writing letters, and socializing with friends. I am looking into other ways to meet new people. Yes, at first it may be hard to talk to others about feelings you may be experiencing. But remember they are just feelings and they will pass. If you work on the proper channels, you will be able to overcome depression over time. Remember if you feel alone, always remember you have the Adults with PWS Advisory Board for inspiration.
–Conor Heybach
“I talk to my cat, and I like it because he doesn’t respond and he listens. I do yoga, that also helps. And I draw by number and play games and watch Tik Tok.” –Brooke Fuller
“I support my mental health by going somewhere where it is quiet, usually my room. I watch TV or play video games. I also like to be with friends and laugh. It makes me happy. Things that help me feel calm are going for a walk or being in a quiet area.” – Victor Penta
“I support my Mental Health by talking to my family, talking to friends, interacting with Support Staff. asking for help when needed, eating healthy meals, playing games, & going out in the Community.
If I am upset I try to walk away from the situation and try to calm myself down and just breathe. I try to stay calm or grounded by talking to my parents and/or staff to let them know how I feel and what is going on – we talk it out.” –Shawn Cooper
“I support my mental health by interacting with friends and family, being in my community, and do the things i enjoy doing in life. What keeps me grounded and calm are bear hugs, talking things out with staff, going on cool down walks, and having staff really listen.” –Abbott Philson
“The way I keep my mental health in check is when one of my peers at my group home talks negatively to me, I just don’t engage any further. Other than that, I work out 🏋️♀️ 2-3 times a week at a gym where I’m a member. And my trainer is my very very Best Friend and I feel I can confide in her… And sometimes when I’m in a grumpy mood from a peer or a staff I wind up going to work out and I feel better afterward.” –Kate Kane
Tips from the PWS Community:
Do animals play a part in your mental wellness?
Luella (6 years old) says “my doggies help me calm down when I get worked up. They even lay on me to help me sleep.” – Kayla Day
Aaron’s best friend Sam definitely provides a calming therapy. – Jacqueline Johnston
What are some things or activities that help you feel calm?
My daughter Cristy loves to color adult coloring books, sticker by number and color by number as well as hidden picture books. She also does mindful breathing. – Suzanne Shull
I’m Naomi Rose Aleman and my mental wellness is week muscle tone, so I go to Christ Children Rehabilitation for PT two day to make my muscle strong and it is getting better. I can do things that I didn’t do before and when I get bored, I color my adult color book by number or diamond art or painting or playing with my dog Buttercup, or going to my room to watch a movie. – Naomi Rose Aleman
How do you work through feelings of sadness, anger, or depression?
She (Ellie) said she also sees a social worker every 2 weeks and that horseback riding and working on dog treats helps her. – Rachel Johnson
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.
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.
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.
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.
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.