with a contribution from James Towle
James Towle, a 38-year-old living with Prader-Willi Syndrome, plays with the Great Blizzards of Massachusetts, Inclusive Ice Hockey. He recently had the opportunity to speak publicly about his experiences with hockey, some of the challenges of having PWS, and how he has overcome those to get out on the ice. The radio show, Breaking the Ice, Let’s Talk Inclusion, is a weekly broadcast to “discuss topics that are important to our inclusive community and highlight the talents and achievements of our community members.” (thegreatblizz.org)
James spoke about his time at Latham Centers where he helped to establish the asinotherapy (a fancy word for “donkey therapy”) program with miniature donkeys. His mother, Elaine Towle, joined him on the radio show to share a bit about James’s beginning years and how he has come to where he is now. She spoke fondly of James being a great advocate for himself in junior college and praised the caregivers who support James in his current supported living environment.
Patrice Carroll, Manager of Prader-Willi Services, and Taylor Burns, Residential Director of Children Services, both with the Latham Centers, accompanied James and Elaine on the radio show. They helped bring more awareness and education around PWS and talked a bit about what the Latham Centers has to offer.
This radio show is a great opportunity to hear about living with PWS from someone who does. It was a delight to listen to James talk about his life with the confidence of someone who has faced obstacles in his path but proceeded forward anyway. Thank you to James and Elaine for sharing their stories and to Patrice and Taylor for their knowledge and support of individuals with PWS.
In the words of James Towle:
- Life is full of challenges. I’ve faced many challenges in the process of growing up with PWS; many of which I still battle with in adulthood. The greatest challenge I’ve faced was having extremely low-muscle tone. I was unable to start learning to walk until I was about three years old due to not having the strength to remain on my feet. Later in childhood, I often found myself on the sidelines watching my peers enjoy playing sports rather than joining in due to my limited coordination. One sport that really got my attention was hockey from watching games on TV and in person at sporting events really got me thinking; “What If?”
- In my early to mid twenties I started hearing about the Special Inclusive Hockey League. However as much as it got me interested there weren’t any programs within the local area. A few years later I moved from NH where I grew up to Cape Cod. Shortly after I started hearing of programs starting in MA; but still wasn’t anything on the South Shore. This past summer I discovered that a Special Hockey Team was finally coming to Cape Cod. I found info about open houses the coaches were holding in a local arena for a meet and greet and to get more info. After showing up at an open house, meeting the coaches, sharing my background and getting more info about the program; I simply couldn’t resist. Especially upon hearing there was no age cut off, no skating experience required, and they even supplied the gear.
- The special hockey program has been a true learning experience; with a catchy motto…no player left behind. A phenomenal coaching staff trained everyone how to skate and provided the basic knowledge of hockey; the best part was the entire team were learning together. From the support of skate trainers to milk crates for balance and technique building, to drills and scrimmages; our roles increased as our skills improved. Sound advice and wisdom from the coaches provided great encouragement such as the following: “All we need is the ability to dream. The strength to hope. The determination to stick with it. The motivation to push ourselves. The confidence to know that everything is possible as long as we believe. The will to place enough faith in ourselves to reach beyond the possibilities. And then have enough courage to accomplish those dreams to see them become realities”.
- Although it was questionable at first if I could accomplish my goal of skating and playing hockey. With a bit of motivational words, supportive equipment and coaching assistance I realized that it was entirely possible; I just had to believe I could do it! The coaches assured me they could have me skating on my own in two months…I’m proud to say it was even less than predicted. Even though I started with a good deal of hesitation; I got on the ice, I tried, and I conquered. I couldn’t be more grateful to the coaches for their support, for my will to try and continue doing so, and prouder in myself for it!
James is shown above with Lincoln (8), a fellow hockey player with PWS.
Listen to James on The Great Blizz Radio episode HERE.
(Side note for those who listen to the radio episode, we have found no evidence that Susan Boyle has been diagnosed with PWS.)
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.