Along the beaten paths of Erin, Ont.’s rural rolling hills and abundant countryside, just 80 kilometres or so northwest of Toronto, sits a picturesque farmhouse. It’s there that the 100-acre property, natural and peaceful in its bare simplicity, sports roaming Highland cattle, a spring-fed pond and wide views of the surrounding scenic landscape. 

To locals, it may seem like a dime-a-dozen property, just one of the more than 400 farms native to the area, squeezed between Caledon to the east and Guelph to the west. While many elders would be content to let the estate drift into retirement beside them as another season of “getting by” passes, every nail and stud of a new renovation into this particular property is being driven by a pair of 78-year-old hands that refuse to accept a future where the house is anything short of a home. 

They’re the hands of Gary Langen, cracked and calloused from half a century of work as a builder and developer, yet they continue hard at work. Those same hands, battered by time and labour, remain almost impossibly tender. They’re the hands that, for the last 40 years, have maneuvered wheelchairs, changed diapers, spoon-fed food into a mouth that couldn’t say thank you and wiped away tears that many never saw. 

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Those moments of vulnerable service throughout his lifetime as the sole caregiver for his son, Tyler, who lives with severe cerebral palsy and a seizure disorder he was diagnosed with shortly after his birth. Now 40 years old, there has never been a moment in his life when his father was not there to look after him. 

While his special needs have left him both physically and mentally challenged, non-verbal, immobile and fully dependent for care all of his life, they have only strengthened the bond between father and son. 

Langen’s latest work is now in preparation for his and his son’s ever-changing future. The renovation work, labour that is admittedly catching up to his aging body, is part of an effort to transform the farmhouse into Tyler’s new permanent family home. Hopes are the project marks the beginning of a unique family-based living model that will take care of Langen's son long after he is gone. 

“ I started thinking about this around 15 years ago, and about three years ago, I had a major health setback that just reinforced the need to have something like this in place. It's very scary and stressful to have not had something in place for Tyler, because if I were to pass away tomorrow and he was to end up in a typical group home, he wouldn't survive for much longer than a month,” Langen told The Catholic Register. 

Having come to terms with the reality that his son is likely to survive him, Langen's vision is for a home that Tyler will share with an accepted caregiver who will relate to him like his own family, providing love, compassion and stability for the rest of his days. As Tyler has been in a family-centred caregiving model his entire life, Langen sees it as the only option to ensure a smooth continuation of care as his own life as a caregiver winds down. 

While he will remain involved in Tyler’s care, over time, the day-to-day duties will shift to the new caregiving household in a process that will help his son build trust and routine while giving Langen confidence Tyler will continue to have stability and belonging without him.

The selected caregiver(s) will live rent-free in the farmhouse, with all living expenses and utilities covered, a “generous per diem” and a vehicle for use for appointments, household needs and daily life. 

As care for Tyler includes preparing meals, supporting him with hygiene and mobility, attending appointments and activities with him, all while including him in daily family life, Langen has already envisioned what he thinks may be an ideal scenario, if the right family comes across that Erin farmhouse. 

“My idea is to bring a new parent figure into his life as soon as possible, and then we can transition as long as possible,” he said. “ I'm thinking that a good fit might be a younger person or family, who already have a handicap member, as they would have that commitment with their own son or daughter already, and they'd only be sharing it with Tyler.” 

While he can’t communicate verbally in the traditional sense with his son, Langen understands what is at stake in terms of probable next steps. He shared an instance of his son’s reaction to his absence in the past, something he acknowledges can’t happen again without proper measures in place. 

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“ When we went off to Costa Rica a couple of years ago during my health scare, (Tyler) really went downhill. I was only gone for a week, and he lost his health completely. After just four days, he was in the hospital,” he recalled. “His only understanding of it was that I was gone.” 

It’s a situation he knows many families find themselves in, more than most realize. In addition to his current search for Tyler’s new family-first home, Langen hopes additional homes with a similar model can be built in other communities as part of a project he’s calling the Foundation of Tyler's Family Homes. These homes would be privately funded through personal funds and ongoing development projects as a “stable and viable solution” for creating a safe and loving environment for special needs children accustomed to family caregiving. 

Don Walker, a former executive director of Mary Centre, a Toronto disability services and support organization, recently spent a few hours with Langen and Tyler at the Erin farmhouse upon hearing about their situation. Now working part-time as the organization’s project director, he shared insight into Mary Centre’s newly created Parish Outreach Facilitator position, a dedicated role that works through Toronto parishes specifically to find and support aging caregivers who want to keep their child at home instead of in traditional settings. 

“ We created that position because we believe there are a number of families like Gary's who have a son or a daughter with a disability living at home and are aging, and they're worried about what their best next steps are,” he said. 

“(Situations like Langen’s) are about how we can make some contact immediately and reach out to people who may be interested. If they're interested in working for a faith-based organization, for example, they're going to look at the Catholic Charities job postings, so that's where we thought we could be of assistance, because I think it's going to take a unique individual who wants to get engaged in this situation.” 

Walker also underscored the scale of the provincial need for the specialized approach, with more than 52,000 Ontarians with developmental disabilities currently on waiting lists for any kind of residential support. He said affordable, lifelong and family-style housing is one of the single biggest unmet needs in the sector. 

“ It's not about how we can bring Mary Centre or another Catholic Charities' member agency to the forefront; it’s about how we can work together to assist these families to the best that we can for their sons or daughters,” he said, thinking about Langen’s situation. 

In Langen’s case, his dream is still being built one stubborn piece at a time. Despite being ready to move in as is, he said the house needs slightly more attention — for things such as the installation of specialized lifting equipment and purchasing a separate wheelchair-accessible van. 

Through the renovations, somewhere nearby, Tyler looks on. While he is unsure of the exact plans for what his future holds right now, he is sure of something more important — that his father is continuing to take care of him until he can no longer. 

A father’s work, now in the thick of it, remains tireless as the search for a caregiver match begins. Still, he battles with the only burden he’s ever faced, the day in which the house that looks out over the same Highland cattle, sparkling pond and hills that never change, becomes the place where he will set his son down gently the way he has countless times before. 

Then, for the first time in 40 years, those calloused hands of service will be forced to let go. 

Everything he is building, searching and hoping for now is so that, when that day comes, someone else’s hands, steady, loving and familiar, will already be waiting to take that place. 

When asked about the scene he will hold on to in the coming decades, in a perfect world, where Tyler sits with his new family in the house he built for them, Langen answered without delay.

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“ My hopes for Tyler would be that he would continue to live a happy and fulfilled life. He is not hard to please. He doesn't ask for much, but he is totally dependent on a loving relationship, and that will always be a non-negotiable.” 

Those interested in learning more or contacting Langen in regards to joining Tyler’s family can visit tylersfamilyhomes.ca/.