The holidays are almost upon us! For a lot of us, that means spending extra time with extended family. In my case, my three siblings, their families and my family are all converging upon my parents’ house in Colorado. This should be a point of excitement and joy. And, for the most part, it is! Already, though, I’ve found myself worrying about how Henry’s PWS will play into the family dynamic this year. Since he only just turned two this past July, we haven’t had many circumstances like the one we’ll be facing this Christmas. I find myself worrying that my oldest nephew will accidentally drop one of my mom’s famous coconut macaroons (which are basically egg whites and sugar) on the ground, or that my little niece (who’s maternal instinct is that of a 30-year-old) will want to share some of her lasagna. These are scenarios that aren’t really outside the realm of possibility, but with Henry’s condition, they can’t happen. Yet, in the hustle and bustle of the season, and with 16 people (8 of those being children) in the house, how can I possibly protect my son from every cookie crumb and every shared bite of lasagna that comes his way?
It’s times like these that I’m glad to have a loving and understanding family. Since his birth in 2015, they have been nothing but supportive during our journey with Henry’s PWS. They ask questions, share recipes, and do research just to be able to know more about who Henry is and what we deal with everyday. What I don’t know is whether or not they’re teaching that valuable information to their kids. Since Henry is the second youngest out of all the cousins, he has been the subject of much doting, and I’m sure that his cousins have at least a vague understanding of his unique condition. However, I’m less sure that they understand the fullness (no pun intended) of his eating restrictions. How could they? They’re just kids!!
If there’s one thing I’ve learned in my two years as a Special Needs Mama, it’s that one of my main job descriptions is “advocate”. With this in mind, I decided to message my siblings with a list of conversation topics to use in preparing their kids for Christmas in Colorado. My siblings may not know exactly how to talk to their kids about Henry’s condition, but I do. This way, they can have healthy, safe conversations that will prepare them for the change that Henry’s condition will bring to our time together this year.
Below, you’ll find the message I sent to my family. It’s my hope that you’ll find it useful and be able to use it as a template as you begin thinking about the holidays for your own family. I know we all have different stories. All different holiday plans. All different families. I wrote nothing about talking to the cousins about playing and including Henry because he’s still a baby in their eyes, and who doesn’t love to play with a baby? You might have an older child with PWS and feel the need to add something about how your child behaves differently, but still likes to be included in playtime with kids their own age. One mother that I shared this with mentioned that her family has implemented a rule where food doesn’t leave the kitchen. That way, there’s a lot less worrying about food getting into the wrong places (and into your child’s mouth). Talk with your family about setting a few of those family rules to follow as you celebrate the holidays together.
That’s a good way to know that you’re all on the same page. Let this be a starting point for your own conversations with family that will no doubt be as unique as your child.
Here’s what I wrote:
Knowing Henry:
- Henry has Prader-Willi Syndrome. It makes him weak, slow to learn some things, and makes some foods dangerous for him to eat.
- Henry’s body breaks down sugars and carbs differently than ours do, so those types of foods (like cookies, and any kind of bread or pasta) could be bad for him to eat.
- A lot of times, we can’t see the effect these “bad” foods have on his body right away like if he ate poison or something rotten, but it will show up later in his behavior or cause his body to grow fat cells a lot faster than most people.
Helping keep Henry safe:
There are lots of ways to help take care of Henry when we’re all together. Just like you would try to stop Henry from falling down the stairs, it’s important to keep him from eating the wrong foods. Here are some ways to protect him from the foods he’s not supposed to eat.
- If you drop or see food on the ground, pick it up and put it up high where Henry can’t reach.
- If you want to give Henry something to eat, check with his parents first. Even if you think it’s a safe food, always be sure by asking.
- If there’s an accident, and Henry does eat something bad for him, it’s okay. Just tell his mom or dad so they know.
It’s as easy as that! It’s always better to have these conversations early on rather than after our kid gets a hold of something he shouldn’t. Let’s be open with our families, and make this a stress-free, joyful, and safe holiday season!
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.