Rare Dads Roundtables Pt. 1

By Guest

The following is the first in a series of articles by Mike Dobbyn, a Canton native and CHS graduate, proud father of two boys, and a passionate advocate for research and awareness in the fight against Sanfilippo syndrome.

I started the Rare Dads RoundTables for fathers of special-needs children with rare diseases because I realized most dads don’t want to talk about this stuff. Yet when stories are shared, fathers gain insight, support, and most importantly, reassurance that they are not alone. The urge to connect becomes contagious when we find people who understand our situations, and it helps ease the mental load of social isolation we all feel.

Mike Dobbyn

Parents embarrass their kids — it’s practically a rule of life. But every parent has also been embarrassed by their kids too. Simple things, like a public meltdown when they’re young or some outlandish behavior as they grow up. Parents of children with special needs learn to grow particularly thick skin for these moments. That skin is forged from the constant sting of isolation and the need to be on the defensive.

Take Jeremy Weishaar, whose story would resonate with any dad. At one of our RoundTables, he told us about helping his son Jonah in public restrooms — at a rest stop off I-81 in Pennsylvania, a monster truck show in New Jersey, even an Islanders hockey game. Jonah, now 16 and taller than many adults, has asked his father more than once, “Are you my dad?” in front of strangers.

The cringe, fear, and urgency Jeremy experiences in those moments are impossible to overstate. He must deflect attention with humor or reassurance, balancing Jonah’s limited awareness against the startled looks of strangers. The awkwardness is amplified by Jonah’s size and assertiveness — a public encounter that becomes intensely private in its emotional weight.

Even the most ordinary tasks can turn isolating. Taking my 17-year-old son Connor — who has Sanfilippo type C, a rare genetic disorder that primarily affects the brain and spinal cord — to Wegmans has created countless unpredictable public moments, whether it’s smashing a stranger’s loaf of bread with glee in the checkout line, or shouting the name of an imaginary friend, “Jason,” into a startled woman’s face. Each moment forces me to navigate embarrassment, deflect judgment, and preserve my son’s dignity.

And the hardest part? Trying to share these moments with close friends or family. Imagine sitting down for a beer after work, trying to unload what’s on your chest, but in order to do that you’d have to explain every detail of just how different your life is. That reality doesn’t make you a recluse, but it nudges you in that direction.

It’s not actually about the embarrassing moments; it’s the subtle ways isolation eats at you in everyday life. People at work casually ask about your kids, but parents of special-needs children often duck those questions or give short answers to avoid exhausting or depressing conversations.

One night at the RoundTables, Florida dad Randy Humphrey shared how this reality cost him his livelihood: While waiting tables he lost tips, customers, and eventually his job after he answered follow-up questions about his daughter Fiona’s health situation in response to a simple, “How’s the family?” Society often doesn’t know how to respond to the truth, and so families like ours carry it alone. This is why we gather. Rare dads show up for each other — not to complain, but to be understood without over-explaining and to talk about our own expectations about being a dad.

I often think about my own father — how he was always there for my games and practices, or how he’d wake me up at 6 a.m. to shake off a hitting slump with batting practice at the ballfield before school. I feel guilt that I can’t always give Keenan, my younger son, the same easy fatherhood, because Connor’s care requires so much of me. That guilt connects me to so many other dads, and it leads naturally to the next part of our journey: how we face hard truths together, and still find ways to celebrate milestones with all our children.

Because, this obviously isn’t just about dads; it is about the whole family. My perspective is shaped by fatherhood, but I know our partners, siblings, and other children also shoulder the weight of this journey. They, too, need space to be seen and supported.

“You want to be where you can see, our troubles are all the same. You want to be where everybody knows your name.”

***

If you’re the father of a child with special needs, we invite you to join us at the #RareDads RoundTables. Come sit with dads who understand, who have lived it, who will walk beside you. Learn more at www.sanfilippo-project.com.

And we’re not stopping with dads. RareSiblings is already in the works, with more information to come soon. Our vision is a network of rare families supporting one another — because when one group finds its voice, the whole community grows stronger.

Share This Post

Short URL: https://www.thecantoncitizen.com/?p=132561