Celebrating CVI dads: Steve and Tom

Get to know Steve Pelletier, father to Tom, who has CVI. In our Q&A, Steve reflects on raising his two boys, who are now adults, and shares advice for CVI parents, educators, and medical professionals.

Tom and a friendly dog touch noses while they sit on a boat at sunset.

Steve Pelletier is no stranger to hard work. He boasts an extensive career as a Fortune 100 C-suite executive. He is the father to two now-grown adult sons, Rob and Tom. Although he’s retired now, it seems as though Steve’s work isn’t quite done yet. But he’s not complaining.

Today, Steve serves as Chair of the Board of Trustees of Perkins School for the Blind, where he is a dedicated and vocal advocate for individuals with CVI. He is also a board member for the National Organization on Disability, and a board director and volunteer for Camp Haven in Vero Beach, Florida.

While he could just spend a peaceful retirement in Florida with his wife, Sallyan, he chooses to continue the fight for change. According to him, he’s driven by the knowledge of what really matters in life. According to us, his drive to advocate for individuals with disabilities, in particular those with blindness and low vision caused by CVI, is unmatched.

Steve remains a vocal advocate for his son, Tom, who is now 26 and living independently in Massachusetts. Tom is among the relatively few present-day adults who received a CVI diagnosis when he was young. According to other adults with CVI, most lived with the condition, but were only diagnosed much later in life. Reason being — the knowledge that we have about Cerebral/Cortical Visual Impairment today compared to 26, or 10, or even 5 years ago is far more encompassing.

While there’s still so much more to discover about CVI itself, right now, we have the opportunity to learn from Steve’s perspective.

In our Q&A, Steve reflects on being a father to an individual who’s grown, struggled, persevered, and succeeded while living with CVI — All during a time when knowledge was only beginning to emerge about the condition. Read our conversation with Steve below.

Baby photo of Tom Pelletier. He wears a blue striped shirt and smiles.

CVI Now: Tell me about your son, Tom, who has CVI.

Steve Pelletier: My son Tom is a fascinating young man. He’s 26 years old now. Which is sometimes hard for me to believe. He’s soon to be 27.

He is someone who has tremendous creativity and imagination.

He’s a gifted digital music artist. He creates his own digital music compositions and mash-ups. He’s got his own YouTube channel and he’s got something of a following. It’s really neat to see. He has a wonderful sense of humor. He’s always been fascinated by wordplay and puns of different sorts. We’ve had a lot of fun with that over the years.

He’s very interested in history — lots of different aspects of history and world cultures.

Sallyan, Tom, and Steve wear Everybody In shirts and stand in front of golden balloons that spell Perkins.

Tom is now living in Plymouth, Massachusetts. He is part of a community called LIFE: Living Independently Forever. It has three campuses, two on the Cape and one in Plymouth. Tom joined the one in Plymouth right after COVID. He’s been there two and a half years or so now and he enjoys it very much. So I get to see him with some frequency but we make sure that Tom is forging his own life there as part of the community. It’s a really good place for him.

LIFE does not have much prior expertise in having clients with visual impairments. So Tom is able to educate them in that regard. He does get some services from the Massachusetts Commission for the Blind, and so that helps.

Tom is a proud graduate of Perkins. Being there was one of the most impactful and important chapters of his young life, so far. And he has, as we all do, enormous respect for what Perkins does. He has a considerable amount of fondness, too. He has been back on campus before for some of the Everybody In! walks.

Can you talk about when he was diagnosed with CVI and how that journey was for both of you?

SP: Sure. Tom was born in Singapore in June of 1996. The birth seemed uneventful. He had an umbilical cord stub infection at the age of a couple of weeks. We’re not sure if that was a contribution to what happened or not. APGAR at birth all seemed fine.

When Tom was a few months old, we started noticing that he wasn’t tracking us, our motions, or objects. He wasn’t tracking them with his eyes. We were noticing and thought, “Hm, what’s going on there?”

When he was about five months old, Tom’s mom, Jane, took him to a family doctor. That led to an ophthalmologist, and then to a neurologist. And that led to some scans being taken of Tom’s brain that indicated that, at some point, either just before birth or soon thereafter, he had suffered strokes that left him with quite significant brain damage, including to the visual cortex and various visual centers of his brain.

The first two neurologists who examined Tom could not reconcile the baby they were dealing with to the films. The films indicated the likelihood of profound disability. Certainly, Tom had some issues. He had some right-sided weakness. He had some tongue issues, and obviously his vision impairment, too. But his presentation was far, far beyond anything that the films would have suggested. So I think that was an indication early on that Tom’s a fighter, and that there’s always the basis for growth and a fulfilling life for individuals with CVI.

Before doctors really examined him in any depth, we got some pretty challenging prognoses as to what life would hold for Tom. He has shattered all of those limitations.

A photo of Steve, Sallyan, Rob, and Tom Pelletier in front of Tower Bridge in London.

I don’t hold this against the doctors. They were giving their professional opinion. They were doing their job. But they were talking about Tom’s motor skills and expressing the view that he would probably walk, but running would be pretty hard to foresee in his future. And he was on the track team at Perkins. How about that!

Tom’s mom and I had to do a lot of research when there wasn’t much research to be had. This was 1996 and CVI was, I guess, a thing very, very few people knew about. Dr. Christine Roman seemed to be the only educator of any kind. We did have a very good pediatric neurologist who knew his way around the landscape but he wasn’t exactly a CVI specialist. I don’t think anyone was a CVI specialist at that time.

Who did the research and who made the connections?

SP: Primarily Jane. I helped in finding Tom’s pediatric neurologist we settled on, Dr. Arnold Gold. I’m sure he’s passed now. He’s a great man. He was a real beacon of hope. He was the one who just looked at Tom, and dealt with Tom as Tom. He took Tom’s presentation as he saw it and as he was experiencing it — which was a very, very, important lesson for me.

So I was involved in that score, but then he made some different referrals to us. I think he might have indicated to us about Christine Roman. Tom’s mom was most active in establishing that connection.

Christine Roman was able to connect us with different families in the area that had a child with CVI. [She] was able to make a referral for us to another family in the neighborhood of Fairfield County, Connecticut, where we were living. They had a child who was a few years older than Tom but actually very similar to Tom a lot of ways. This is all before Facebook or anything like that.

So, I would get involved once a connection had been made. But Tom’s mother, Jane, was by far the more active one in initially making those connections.

That’s a theme that I’m seeing among CVI dads in general — Most moms dive in head-first into all the CVI research, including talking with a lot of people. But it seems dads are more behind the scenes, making sure their kid is happy, safe, and healthy. Can you speak to that at all?

SP: I can identify with that. I would be active in working with caregivers and specialists once they had been identified, but a lot of my role was being a dad. I certainly got proficient in some of the things that we needed to do for Tom, some of the early intervention activities, but I learned the value of treating those activities as a game. Not just for Tom’s sake, but for my sake too — to not pathologize the situation. Tom’s my son, and when I’m working on the lightboard with him for hours at a time, I’m playing with him. “Look at these colorful plastic shapes that we’re plugging into this board.” It was a game. That was important for him and for me, honestly.

Tell me more about what you guys liked to do together back then and today.

SP: Tom and I would go on lots of long walks. We enjoyed that. Tom was able to enjoy the natural world. Tom has a fair amount of usable vision. His ability to use that vision was built up over the years by a lot of people who helped him, including teachers of the visually impaired, low vision specialists, and the people of Perkins. He had ample vision for enjoying the outdoors and enjoying walks around the woods. I would point out things to him and describe them to him. But in terms of safe navigation, Tom was pretty good with that — sometimes too good. I often had to [say], “Tom, I’m not sure that your scrambling up that 45-degree cliff is really the best thing, but why don’t we save that for another day?” *Steve laughs*

We adopted a pattern of going on bicycle rides when Tom got a little older, not much older. I would take him in the child seat when he was just a couple of years old and then we progressed through various types of bicycling. I really enjoy cycling, and Tom has really enjoyed it too.

Eventually, when he got a little bigger, we got a tandem. We went all over the place in that. We participated a couple of times in the Five Boro Bike Tour in New York City and covered a lot of ground in Litchfield County, Connecticut, up in Vermont, and down here in Florida. Tom now has a recumbent trike that he loves riding and he can ride that pretty much independently. I ride on a bike following him, but he stops at the stop signs, especially on a road that he’s familiar with.

An image of Tom Pelletier  from the waist up. He smiles.

He’s able to take the lead.

Tom likes motion — some vestibular thing going on, I guess. Or, [he just likes] to move fast. He enjoys a nice car ride with the top down and music blaring. Music is really one of Tom’s loves and so combining the trips with the music is a lot of fun for us.

Hey, that’s one of my favorite things to do too!

SP: Yeah, me too! Me too.

One other thing is reading. Tom loves to read. He doesn’t read Braille as much as he used to, but he consumes audiobooks. He and I have spent thousands and thousands of hours reading together. We read all the Harry Potter books three times. We read all the Sherlock Holmes stories. We read all the Mark Twain novels multiple times. Just all kinds of things. He’s going to take a course in Shakespeare at Cape Cod Community College come the fall. He wanted to get started, so right now we’re reading Macbeth. Go figure.

Do you have any suggestions for early education professionals and educators who want to engage more fathers?

SP: One is just what I said: Not to pathologize the situation. Tom was a child. He happened to be a child with CVI, but first and foremost he was a child, my child. And I’m his father. Engage with them on that basis, even when doing things that are part of their development regimen. Have those be fun activities. I just treated them as things that we did together.

It helped me to not pay too much attention, and not to preoccupy myself too much, with forecasts about what the future holds for Tom. To focus on what today holds for Tom.

Certainly, that’s not to the absence of making plans and figuring out ‘Where’s the best place for Tom to thrive and grow?’ That’s what led us to Perkins. But to focus on what he’s capable of today and to help him build on those foundations as much as possible.

Another thing that I think is really important to understand, specifically about CVI, not just for fathers but all kinds of people, even early development professionals, is early intervention.

A baby photo of Tom and Rob Pelletier sitting in green grass.

Early intervention is always important to children with disabilities, right? But with CVI, it’s phenomenally important. It can change the whole landscape. It can have impact that leverages upon itself.

During our sessions with the lightboard, Tom’s brain was rewiring itself. He uses a different part of his brain to see from what I do, or from what others do. And so, with CVI in particular, the importance of early identification and early intervention is so great. I think it’s certainly cause for hope, but it’s also a cause for action. Get it started early and keep up with it — not as part of a grind, but as part of all the things that you’d do with children to help them grow, develop, and enjoy one’s time with them.

Something else really important to me is to remember, in my case, my other son, Robbie. To remember the siblings. It’s very easy for a child with disabilities to become the focus of everyone’s attention. That’s not said to be critical of anyone. It’s natural. It’s human nature. But I got this advice from someone early on, and I was very happy to get it.

Robbie and Tom Pelletier wear sunglasses and smile.

Tom’s brother, Robbie, is an important person and an important part of Tom’s life as well. I remembered to include him in the different things we were doing with Tom. Also, to make sure that I spent plenty of time with him one-on-one, too. That included doing things that, for all Tom’s growth and for all his sometimes excessive daring and love for living on the edge, there were certain things that were difficult to do with Tom. And to make sure if Robbie wanted to do those things, to remember to do them with him.

That’s something that I think sometimes people are a little reluctant to discuss, but we shouldn’t be. That’s only natural. And it was great obviously for Robbie and for me, but it was also great for Tom because it enabled Robbie to love Tom deeply as his brother, and to be part of his network of support. But also to just be a loving and caring sibling to him.

How did you take care of your psychological well-being as a dad during the hard, stressful times?

SP: Before either of my sons were born, I had already started to live a spiritual program of prayer and meditation. I don’t follow an organized religion. I have only respect for those who do, but that’s not been my path. But I do have a very active practice of spiritual self-care. And making sure that I follow through with that was —and is — very important.

It helps keep me in the here and now, which I think is particularly important when in the case of a parent who has a child with disabilities. It’s very easy to look to the future with a lot of foreboding. I did some things within myself to help center me and to help keep me out of that space. It was kind of natural to me to focus on my children.

At that phase in my life, it was [all about] my sons and work. That was it. I remember once Tom and Robbie’s mother said to me that I should call up some of the guys and go on a guy’s trip. And I said, “What guys?” And I wasn’t complaining. This was my life. It was being a father and working.

Working was important because frankly, it has enabled me to provide security for Tom and to help other families in achieving that kind of security, too. I never felt conflicted about my work. I felt it was a necessary and important part of the equation. But I also, both within myself and with the help of some other people who gave me reminders, I also didn’t let my work consume me. I made sure that I really prioritized — not just made time for, but prioritized — being the father to my two sons.

Is there anything else that you wanted to make sure was included in this Q&A?

If I had to say one thing — I’d like parents, educators, and doctors to make sure they know this: Early intervention is everything in the world of CVI.

Steve Pelletier

What a place like Perkins is seeking to do — to inform, educate and empower so many different types of professionals and parents in the area of early intervention… It can’t be emphasized enough. Early intervention is always important in all kinds of situations, but its impact in the area of CVI is very different from other areas of disability, frankly.

Young Tom Pelletier stands on a boat with his mother Jane supporting him. He is wearing a red life vest, sunglasses, and holding the helm of the boat.

Lastly, in terms of being a parent to a child with a disability over the years, have you noticed any evolution in the father’s role?

SP: My role in Tom’s life has evolved in the way that a parent’s role evolves naturally. Being Tom’s father, certainly both my sons, but particularly so with a child with disabilities. It’s been one of the most important experiences in my life. It is a big part of who I am today — for good or bad. I’ll leave it to others to say that. But it has changed me in many respects. It has made me much more attuned to what really matters in life.

It has made me redefine what it is to be human. It has given me a deep appreciation of the meaning of the phrase, “I’m a human being, not a human doing.” I remember the first time I heard that, and it really resonated with me.

Being Tom’s father helps me remember that your life and worth is not defined by what you can and can’t do. It’s defined by who you are — including your growth within yourself, and also what you do with, and for, others.