A break from daily routines brought anxiety, then freedom, for my son

There is a word that has governed our family for 16 years: structure. With a child diagnosed with Prader-Willi syndrome, that is something we strive for — set mealtimes, routines, a scaffolding that keeps my son Jake’s world legible and his anxiety at bay.

So when we left home this summer to spend a month at our cabin in Colorado, I knew exactly what we were risking. We weren’t just changing scenery; we were changing the framework that keeps him steady and calm.

While we travel to Colorado every summer, this was the first time we would be away from home and our schedule for a full month. The first days confirmed my fears. The unfamiliar rhythm of mountain time and the absence of Jake’s usual schedule surfaced as a low, persistent hum of worry. The repetitive questioning and perseveration on where he would go to collect his pop tabs heightened significantly, and then came the behavioral meltdowns, the likes of which we hadn’t seen for some time. Watching him, I was reminded that structure is not simply comfort for Jake. It is how he feels safe in his own skin.

But underneath that anxiety, something else was quietly taking root, and it surprised me more than the worry did: a sense of freedom.

At the cabin, Jake could walk independently up the alley to the grocery store and then venture to a nearby neighbor’s house alone. These may sound like unremarkable moments for a 16-year-old, the kind most parents stop registering as milestones at all. But for a child whose life has been so closely supervised, walking down a dirt road by himself was nothing short of enormous — trust extended and returned. Each time he came back through the door, something in him had shifted. He stood a fraction taller, and I understood I was watching him meet a version of himself our structured life at home rarely gives him.

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The men who influenced him this summer

Two men in our small town — no relation to us, simply present and generous with their time — took Jake under their care this summer in a way I had not anticipated. They brought him along on four-wheeler rides and Jeep rides, and they gave him a job: feeding the neighbor’s mules. They spoke to him the way men who have raised sons tend to speak — teasing, patient, and quietly expecting he was capable of more than usual.

Jake’s grandfathers passed several years ago, and he really never knew them. This has been a void in our family I often wish he didn’t have to experience. However, watching these two men fill even a corner of that space this summer was one of the most quietly moving parts of the trip. There was no lesson plan, no therapies, only ordinary things — Jeep rides, four-wheeling, chores, conversation — and my son experienced them as though his belonging required no explanation. For a boy whose life is so often managed by others, being included without fanfare is its own form of medicine.

By the time the month ended, the anxiety had receded, the way it does once a person finds new footing. What remained were the mules, the vehicles, the walk to the store, and a boy who, given a little more room to become himself, achieved a newfound independence.

We will now return home to the familiar structure, and Jake will settle back into it, as he always does — it is, after all, what keeps him well. But he will carry this summer with him regardless, as quiet proof that stepping outside the schedule, however hard it is to risk, can offer something structure alone never could.

We are endlessly grateful for the chance to disconnect for a month, for the memories carved into those mountain days, and for the men who, without ever meaning to, gave my son something that looks a great deal like confidence.

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.