The stakes feel higher as my son with Prader-Willi starts high school
As a parent, I want for him to be seen, valued, challenged, and supported
Preparing for my son Jake’s first year of high school stirs a complicated mix of pride, hope, and anxiety. Unlike most freshmen, he carries with him the weight — and the resilience — of navigating not one, but two genetic disorders: Prader-Willi syndrome and neurofibromatosis type 1. Every milestone is both a celebration and a negotiation. Every new beginning is marked with the lessons of past struggles and the anticipation of fresh challenges.
School for children with disabilities is often harder, and the highs are more hard-fought than peers might imagine. Prader-Willi syndrome creates many learning differences. For my son, “small” victories have never been small to us. We remember his teacher sharing the first time he raised his hand to answer a question in class, hesitant but determined to participate despite his difficulties with speech. We cheered the day he finished his first science project, with pride beaming on his face and in our hearts.
These moments remind us, and him, that his potential is real, shaped not in defiance of his disabilities, but alongside them. We continue to strive for and foster independence in all we do for him.
Yet, the lows have also been a part of our story. The sting of exclusion is real, as is the frustration of encountering systems that too often treat accommodations as acts of charity rather than rights. There have been mornings when my son, stoic and brave, confessed that he felt invisible or misunderstood.
“Why is my aide not helping me or saying things to me that aren’t nice?” he once asked. It was a question I wish I could answer in a way that would erase the ache from his voice.
Dreaming big
As we approach Jake’s first year of high school, my husband and I are learning to balance protective instincts with the necessity of letting go. The stakes feel higher. It’s a new building with unfamiliar teachers and a huge cafeteria, along with upperclassmen who seem so much older than our son.
There’s also excitement and certainly a sense that new opportunities await just beyond those double doors. My son talks about joining chorus and Junior ROTC and wanting to play on the basketball team. His dreams are big: making new friends, gaining independence, and proving that his differences don’t define him.
Our dreams for him are both ordinary and extraordinary. We want what all parents want: for him to be seen, valued, challenged, and supported. We wish for friendships that aren’t dependent on explanations, teachers who see his strengths before his limitations, and a school community that’s willing to embrace his differences rather than seeing them as an obstacle. We continue to educate school staff and utilize the many resources available to help us along the way. (Some of our favorite resources include Empowered Solutions and PWSA | USA.)
As parents, we hope that he will begin to recognize — even on the inevitable hard days — that his journey, which has been marked by grit and grace, has equipped him with perspective and courage beyond his years. He will build resilience not just in the face of struggle, but also while going through it. We dream of a high school experience that gives him confidence to advocate for himself, space to discover passions, and a platform to shine in ways that are unique to him.
This summer, as we watched our son receive tutoring in English language arts and math to try and bridge the gap that has continued to widen for him, we anchor ourselves in the same truth that sustains all parents of children with disabilities: Progress isn’t linear, and joy can be found in places we never thought to look.
The future, uncertain as it is, still invites hope. And as the first day approaches, we choose again and again to meet it with optimism, strengthened by the highs, tempered by the lows, and ever mindful of the dreams that carry us all forward.
Welcome to ninth grade, Jake! We believe in you and will always support you.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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