No one likes exclusion: Embracing special needs children and adults

Seventeen years ago, I went on a walk around my neighborhood with my mom. I noticed she was walking in a different direction and, after asking where we were going, she said, “my friend’s house.” Little did I know, her friend had a friend for me too; her daughter, who I am still friends with to this day. My friend, Noemi, has three siblings. Rose, her eldest sibling, is in her 30s and has Prader-Willi syndrome (PWS), a rare neuro-developmental genetic disorder that may be present at birth and is confirmed through a DNA test. PWS occurs in 1 per 15,000 births and some challenges include hyperphagia (excessive hunger), poor bone health, thyroid deficiency, growth hormone deficiency, respiratory problems and developmental delay along with intellectual disability. Despite all the challenges Rose faces in her day-to-day life, I have seen so much growth and intelligence come from her. Her family looks out for her best interest and health, but stepping into new environments is not the easiest.

For many families, navigating behavior in public can feel overwhelmingly difficult to manage, in addition to unwarranted judgement. Someone with PWS has significant developmental delays and intellectual capabilities that contribute to behavior. In addition, their satiety levels are high due to hyperphagia, which contribute to PWS being the most frequent genetic cause to obesity. A cure is still developing for this condition, but as of March 2025, the Food and Drug Administration has approved a medication for hyperphagia called VYKAT XR (diazoxide choline). It marks the first PWS specific treatment for patients ages 4 and older. It is easy for people to judge a parent for not being able to control a tantrum or their child’s weight, but in reality, they are not at fault and are trying their best.

Most individuals with PWS experience high levels of anxiety which trigger behaviors like temper outbursts. Caretakers and families are crucial support systems, but when PWS individuals are not under their supervision, it can be difficult to trust others to care for them in the same way. This falls true for many families with children having special needs, but building a safer place for them starts with us. Caretakers often suffer with mental health, due to their overwhelming responsibilities, but beyond that, joy also presents itself.

For as long as I have known Rose, she has been a crafter at heart. Constantly using beads to design jewelry with precision and an eye for vibrant color palettes and textures. She is sassy in the best way, thinks quick on her feet, and if anyone could do a convincing sales pitch, it would probably be her. Recently, when my family had a birthday party, I sat on the couch with Rose, my cousin, and his partner. When her parents were looking for her, she reaffirmed them with an “I’m fine.” As in, “do not bother me, I am talking to my friends.” Rose shared that she wished there was an app for special needs individuals to share content and interact in a safe manner. She explained that YouTube was not safe for people like her because it attracted dangerous people. We all sat pensively because this was 100% true. In our digital media landscape today, anyone is susceptible to danger, especially people who may not know better.

Individuals with special needs do not get enough credit. They often reflect human qualities that are much harder to find in the “regular” person. We need people like Rose to teach us joy and kindness. To see the world from a different perspective. Even though there are factors that are challenging to control, it does not grant people the initiative for judgment, unwarranted negative opinions or unsolicited advice. In future outings to our amazing melting pot of people, remember to be curious about others instead of judging. Ask questions, research and speak to PWS individuals. They deserve to feel human and to be accepted into the world, just like us.

Have you ever met someone with Prader-Willis syndrome? Share your stories and spread kindness! Send a message: giselle@smdailyjournal.com.

Giselle Espinoza is a longtime San Mateo resident with a bachelor’s degree in communications, working in health care administration. She brings a Gen Z perspective and slight coffee addiction.