When is it the right time?
At what age? At what cognitive level?
Will he even understand?
Will it make him more anxious? (Because EVERYTHING does.)
Will he just perseverate on it and talk about it over and over and over?
Or will it bring relief—as in “oh, now I understand why I talk about food all the time…”
It was a Friday night in November. Luke, our oldest, was celebrating his 16th birthday with friends at our house, running amuck with food and video games and endless teenage energy.
Ryan wanted to know again and again WHEN IS DESSERT TIME? Of course. No one else cared or asked. Because they just filled up their bellies with pizza.
He followed us into our bedroom, pelting us with repeated questions about Luke’s birthday dessert. Ryan is 13, let me remind you. This is not normal behavior, unless you have PWS, or you are age 2 or 3 or 4 maybe.
We told him 7 or 7:30 pm, whatever LUKE CHOSE, because it was Luke’s birthday. Now, uncertainty is very hard for kids like Ryan. Uncertainty about the timing of a meal or snack, or bless-ED dessert, well that is just too much to bear. Yet, it was LUKE’S birthday and Luke’s choice. Ryan was not going to control it.
Ryan wanted to run out to the family room to badger Luke with the WHEN of it all. But he was already worked up, talking in a shrieking, whiny voice. We wanted to protect Luke (from embarrassment among his peers), so we kept Ry from leaving our bedroom. Anytime you do that, aggression is a risk. Ryan started hitting Chris and we had to restrain him when talking him down wouldn’t work. (Doesn’t usually work when he is that upset.)
Ryan was getting louder and louder, unfortunately. He kept saying he wanted Luke to restrain him, and not us. Whomever is not doing the restraining, is the “good guy,” and Ryan will request that person. Because Luke’s friends were nearby, we still tried to de-escalate the situation, but really we needed to be silent and wait the storm out. Poor Luke walked in with a concerned look on his face, saying, “What is happening in here?” We told him, apologized this was happening amidst his birthday party, and encouraged him to go back to his crew. He sighed and left.
Ryan was not quite calm, but I tried getting him out of feeling-mode and into thinking-mode. It was my turn to pelt him (lovingly…) with questions.
“Ryan, do you want to know why you are so upset?”
“Ryan, do you want to know why you are having a hard time waiting for dessert?”
“Ryan, do you want to know why you ask about food all the time?”
“Ryan, do you want to understand what is causing all this?”
“Ryan, do you want to know why your body and brain are different? Why we tell you that all the time?”
“Ok,” he whispered. It worked!! This seemed to short-circuit the tantrum. We released our physical hold on him.
“Ryan, you were diagnosed as a baby with something called Prader-Willi syndrome. You were 5 weeks old and out of the hospital when we found out from Dr. Flores. He called us to tell us. Prader-Willi syndrome is a rare disease. Not many kids and adults have it.”
He was looking so sad and exhausted (from the tantrum, mostly), and he looks at me with snot and tears and says, “Why do babies get diseases?”
CRASH went my heart. All of our hearts.
“We don’t know, Ryan. Some babies are born with different illnesses and we don’t always know why. But we do know that we will always take care of you. Always.”
Chris chimed in, “This is why you talk about food all the time and need constant reminders that we will feed you. We will always feed you your meals and snacks, we will never forget. Your body doesn’t tell you that you have had food or that you are full after a meal. This is why we have locks on the refrigerator and cabinets now. Otherwise you may eat too much and get sick or have an emergency. Do you think you talk about food more than anyone in our family?”
“No.” Ryan really has no insight or self-awareness. He thinks Luke and Kate talk/ask/freak out about food just as much as him. Or–he just answered that way because he wants to pretend it’s not real.
Sometimes I want to pretend this is not real.
At this point, we had long stopped restraining him. We made a Ryan sandwich sitting on the floor against our big bed. Snuggled together. Us holding his floppy little hands.
I asked Ryan if he needed a hug.
Those big, watery, blue eyes met mine. “Yes, please.”
****
Since that night, Ryan has not mentioned Prader-Willi syndrome. NOT ONCE.
We have brought it up to him, to help him understand when he is having very anxious moments, or needing food security.
It may be sinking in. Light bulbs may be going off in his sweet head. It may provide some relief to know WHY we have said for years that his brain and body are different. Maybe it frames things for him. Maybe.
I know it won’t change his behavior or his food-seeking. He won’t suddenly be able to self-regulate or make himself un-anxious.
And yet, still, he grew up a bit that night of November 11, 2016. We all did.
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.