In commemoration of Diabetes Awareness Month, contributing author Kelly Guillou, mom of Clementine (10 years old with PWS-UPD and T1D), shares her unique view on what it means to persevere in the face of two rare disorders.
Perseverance is my favorite word. To me, it is the ability to push ahead, despite challenges, because the end goal is necessary. I have always been geared toward discipline and goal achievement, so when Clem was born with PWS and then diagnosed with T1D, perseverance took on a whole new meaning.
There are many challenges to good glucose management. Diet is the first factor. That is not difficult for us because her PWS diagnosis also requires a careful diet. Other things present greater difficulties. Some of her medications interfere with her ability to effectively metabolize insulin, so it is a tightrope act to effectively dose her. We are constantly adjusting her insulin requirements to make sure she stays within the acceptable range. We make certain Clem exercises daily, which while recommended, poses problems for diabetics. Again, careful observation and adjustments are required. Also, because Clem has PWS and her interest in food is heightened, we must always be on guard to make sure she does not get into food that is not allowed. For her, if she forages, it will cause immediate diabetic consequences.
While there is a certain amount of uncertainty that comes with living with a rare disorder such as T1D and PWS, there are also successes we can celebrate and milestones we can achieve. The only factors that are under our control are compliance and diet. There are many other influencers of blood glucose control that are not able to be manipulated by behavior. These include things like hormone fluctuation, illness, and other physiological functions. So, it is VERY important to be compliant to our doctor’s orders and to provide the best diabetic diet available. Because of this, Clem’s diabetes is very well managed. Her A1C is always under 7 (the goal for pediatric patients) and her time within range (the new gold standard for diabetes management) is typically around 75% (the goal is 70% or greater). These achievements are a result of our unwavering perseverance.
As I reflect on Clementine’s diagnoses of T1D and PWS, I am reminded that Clem’s diagnoses do not dictate my expectations of what she may achieve. The PWS community and the T1D community’s potential is not defined by their diagnoses. As I think about what is in store for Clementine, the T1D community, and the PWS community, my mind immediately turns to need for expanded healthcare and therapy. There is a large deficit of mental health resources dedicated to PWS individuals that must be addressed. Funding for research must be constantly pushed forward. Lastly, there needs to be an expansion of group home options suitable for those with PWS. This is where I focus my energy: on fundraising and research.
I am thankful for PWSA | USA and a community that understands our family and its struggles. There is a large sense of comfort in just knowing that there is an organization available to me to help navigate some of the choppy waters that we may encounter as we set a course for the future and continue to persevere. Perseverance is what drives me. Clementine’s health is the ultimate reward. There are moments when being a caregiver to someone that requires so much is daunting, but my ability to persevere never falters. There is no choice in the matter. Perseverance gives me the ability to carry my responsibilities without allowing them to drag me down. Perseverance is what maintains Clem’s health and allows her to flourish and persevere against all odds.
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.