I don’t think leadership is as much defined as it is recognized by others. While some people think leaders have the loudest voice, I would argue the opposite. My wife Irene brings so much to Jake’s House but is far too modest to ever claim such a thing. That is in fact why she is our ultimate leader. Irene doesn’t preach, she does. Irene listened to the parents of the children she wanted to help for years, and she responded. She would give us direction and a vision to follow — to her it was simple, the children have needs…. let’s spend 10% of our time identifying the need and 90% of our time, finding the solution to the need. There are no wasted words with Irene. There is work to be done — so let’s just do it. Nobody asked her why she wanted things done — we just followed her lead, and we did as she asked.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing David Bodanis.
David Bodanis is the Co-Founder of Jake’s House, a community that understands and cares, providing practical help and lasting hope to families living with autism. Jake’s House was originally inspired by David’s experience after his son, Jake, was diagnosed with ASD in 1995. With a genuine understanding of the impact autism has on a family, David set out to better prepare others for the challenges they are faced with.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
It has been said that either you choose a career path in life, or it will choose one for you. In my case, it most certainly was the latter. I often say that whatever the second highest priority is in my marriage of over 30 years, doesn’t matter — because without question, topping the list of all things important to my wife and I throughout our time together — has always been our children. It has been 26 and 24 years respectively since our sons Jake and Jonathan were diagnosed as autistic. Having to adjust to what their future lives were going to look like, immediately became the mission of my wife. I initially struggled with their diagnosis and most certainly did not have my finest hours in early days. With their abilities now established and manageable routines in place — we looked back and realized that it was only through the co-ordinated support of a large network of family and friends that allowed us to survive what were most certainly harrowing times. The presence and gratefulness of that support is the single largest contributor to the creation of what has become — Jake’s House.
Can you share the most interesting story that happened to you since you began leading your company or organization?
The mission of our charity is to find meaningful support and make a tangible difference in the lives of those dealing with autism. What better way to do that — than to elicit the support of an iconic rock star! We noticed very early on that autism had no boundaries and that it affects everyone in different ways. We needed to communicate with our families through one true voice. The soundtrack of my life included the music of Roger Hodgson from Supertramp. His signature song — Give a Little Bit — was a fitting anthem for our charity. So I thought — what if we just called Roger and asked him if we could adopt the song for a campaign and then we called him again, and then we called him again….you get the idea. After a lengthy and heartfelt explanation of what we were hoping to accomplish, Roger said, “Yes!” He performed in Toronto, accompanied by a full orchestra, and most importantly by a few aspiring musicians on the spectrum who we brought together for this very special night. Jake’s House had its very first global initiative and it led to our formation of the ASD Band.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
We actually started the charity because we were shut out of a family Christmas party. It was understandable because our boys did not have the capacity to follow the typical traditions of gathering around to listen to stories or behave in an orderly manner as Santa was addressing all the other cousins. So in the absence of our own family Christmas party — my wife set out to create our own. My wife talked to each of the parents and before we knew it — we had 23 children with autism attending — along with all their family and other siblings….and we were terrified. As good fortune would have it — our Chairman at the time was a recently retired Chief of Police who called one of his former Superintendents and he arranged to have 23 off duty officers attend the party — one for each child in attendance. As an illustration as to how much overkill our albeit very well-intended police presence was — our last live Holiday party event prior to the Covid shutdowns was in 2019 with over 700 individuals with autism in attendance and over 2,000 family members in total and there were only two off-duty police officers in attendance. The lesson — we fear the unknown. Reality is a lot less scary.
Can you describe how you or your organization is making a significant social impact?
I have often said that Irene and I are far more the recipients of charity than we are the givers of it. That sentiment has been fostered principally by the overwhelming support the charity has received from its volunteer base — most often coming from young men and women who are just nearing their 20’s or have barely crossed that threshold. The most sobering issue parents who have children with autism deal with — is the fact that in the vast majority of cases, our children will outlive us. That means that our children’s care will inevitably be left in the hands of the generation that follows ours. We have worked very hard to engage with students at the senior levels of high school and in recent years we have established a dialogue with the leadership of the organization that co-ordinates our universities across the country. Our goal is to inform the over 1,000,000 students attending those learning institutions and to start a conversation that helps to educate and change the culture, so when parents like us leave this earth, we leave it to a caring and understanding group of young men and women who will have been shown that there is benefit in helping someone else who can’t care for themselves. As those students graduate and take themselves into the work force — we hope to gain entry into their professional lives so we can expand the culture while recruiting the new batch of students who have replaced them.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
A very good friend to my father and then subsequently to myself and my wife, was a man named Jim Gregory. Mr. Gregory was the Senior Vice President of the National Hockey League — right up until the time he passed in the late fall of 2019. Mr. Gregory was beloved by thousands of people. People that he had touched in a positive way not only throughout his 50-year career in the hockey world but virtually anyone who had the pleasure to shake his hand. In the charities very early days, we desperately needed credibility. Nobody knew who Irene and I were — nobody cared. In less than 30 minutes Mr. Gregory had Bobby Orr, Wayne Gretzky and Sydney Crosby on the phone. All legends in Canada — all faces that are instantly recognizable in our country. Our Legends Program is named in Mr. Gregory’s honour. A true legend, indeed.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
I wouldn’t say we are so much trying to solve a problem as we are simply trying to make the world a better place for those affected with autism. Education, as always, is the key to engaging in a successful conversation. There are so many misconceptions attached to the condition of autism that few come to the table equipped with the knowledge to even begin to know how to help. Having an open mind and the willingness to try something that we understand may fall outside of your comfort zone, is an excellent approach in beginning to find solutions together. A good example is our latest initiative — housing. Traditionally people have not been able to construct a solution for those with disabilities living in dedicated buildings of any size at all. We looked at the situation for over two years and have started a pilot that is dispelling myths previously held all because someone was willing to listen and think outside of the box.
How do you define “Leadership”? Can you explain what you mean or give an example?
I don’t think leadership is as much defined as it is recognized by others. While some people think leaders have the loudest voice, I would argue the opposite. My wife Irene brings so much to Jake’s House but is far too modest to ever claim such a thing. That is in fact why she is our ultimate leader. Irene doesn’t preach, she does. Irene listened to the parents of the children she wanted to help for years, and she responded. She would give us direction and a vision to follow — to her it was simple, the children have needs…. let’s spend 10% of our time identifying the need and 90% of our time, finding the solution to the need. There are no wasted words with Irene. There is work to be done — so let’s just do it. Nobody asked her why she wanted things done — we just followed her lead, and we did as she asked. I have watched Irene for over 30 years and her genius is that she never strays very far away from her true self. Her children became her life, and her goal was always to help parents never feel left alone when dealing with issues that she faced as a young mother. Irene took the lead, we never took the time to try and define her leadership — we just recognized it and followed it and because we all did, we know that the world is a happier and brighter place for the families of Jake’s House.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
I was actually very well informed by many around me when we started the charity. If I could change the question slightly — I would more frame it as “5 things I should have believed when people told me when I first started”. The result is more or less the same — because as much as you think you are going to be the one person who can change all of the historical and traditional rules — the truth is, you can’t, and you won’t. Literally before the charity was even formed, I was taught lesson number 1 by a close friend. He informed me that 98% of start-up charities fail within the first two years. So, if you’re looking for overnight success and you’re not prepared to stick it out through several tough stages, pick another passion. The second item that I completely underestimated; was the length of time it takes to get your effort into the public consciousness. You live your mission every day, so you assume that everyone else knows who you are and have knowledge of your existence — the truth is, the overwhelmingly vast majority of people have never even heard of you. The third piece of advice was critical to our growth. You can’t boil the ocean. Don’t try to be all things, to all people. Find your place of comfort and benefit to the community, hone your craft and become the very best at what you do. If you are providing a source of value to the community that you serve — they will find you. The fourth piece of advice seems obvious, but I think is something that goes unspoken too often. If you do have the luxury of growth and progress thanks to years of hard work and persistence, be cautious to stay true to your original message. We are proud of many things at Jake’s House — chief among them is the satisfaction I feel when I read something we wrote 15 or 18 years ago. The mission and the feel of the charity has not had any significant change over its history. What was important to us in 2004, will be important to us in 2024. And the final piece of advice — surround yourself with talented people and create an environment where they can thrive. We can’t do it alone. A great example of this in practice is our ASD Band which just released an EP of original songs called ‘Fireflies’ which is available on all major music streaming platforms. What began as a “what if…” has grown into a fully realized, amazing initiative. By inviting others into the charity and giving them the freedom to do what they do, we are all better for it.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
We are always careful not to refer to ourselves as experts, for the very good reason that we are in fact not experts in the field of autism. We have two sons with autism, and we have literally spoken to 1,000’s of families that deal with this on a daily basis…. but we are not experts. At all times, we defer to experts in their field, we always listen to the professionals, and we add in our experiences to come up with solutions for families today that have meaning and will positively impact the lives of not only those affected with autism, but for their caregivers as well. When we first started out, we surveyed almost 1,000 of our families and asked them to list their priorities of concern. We listed examples such as proximity to schools; access to treatments and a number of other potential issues facing these families in order to better understand what it was that they wanted help with in the course of raising their children. Overwhelmingly, to the tune of almost 90% the write in response of our parents was the concern that their child would grow up never even having one friend. More than any other issue — that has stayed with me throughout the almost 20 years of our charity. Everyone deserves a friend. So, if I could wave a magic wand for the 80,000,000 people around the world affected by autism — I would find 81,000,000 friends for them. Hint: there are other answers in this article that tell you I am completely committed to achieving that very goal as I love the thought of everyone with autism finding that special friend through our charity. Maybe not today, but one day.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
The most relevant quote to our charitable effort comes from my father — he always explained to me — “that a good deed once spoken, goes undone”. “True charity” — he continued, “only occurs when no one is looking”. I have learned so much about perspective, through the lives of my sons. They have no concept of the value of a dollar, they care not at all in the least, about celebrity. Yet, by and large on a day-to-day basis and with all credit going to my wife — my boys are generally, very happy. My sons are free of the trappings that suffocate the vast majority of the rest of us on a daily basis. Think of those that you know who spend more time on chasing dreams or social status that probably won’t give them anywhere near the satisfaction they think it will — if ever even obtained at all. In the end — the hope I leave to others who are struggling today, is simply this….just take life one day at a time, find something good to do for someone else less fortunate than you each and every day and I promise you, things will get better and as often as you are able, perform your acts of charity, when no one else is looking.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I mentioned my father earlier in our discussion — clearly one of, if not, the most influential person in my life. What I haven’t mentioned, is that he passed away in 1979 never reaching his 40th birthday. As you may imagine, for an only child who barely passed his own 10th birthday, I did a lot of staring up into the clouds and even more soul searching, trying to make sense of a lot of things. Two months after my father passed, I had a cousin who paid me a visit and saw that I was struggling. He handed me a cassette tape — yes, a cassette tape, of Born to Run. For the next 42 years, the music, the voice and the power in all Bruce Springsteen songs spoke to me…and gave me hope. The question was who I would want to have a private lunch with in the U.S. The easy answer for me would be Mr. Springsteen. I would put one caveat on the request, however. Yes, I have listened to a million hours of his music and have admiration for his lifelong efforts beyond words. But I would be willing to give up my private lunch, if we could gently persuade Mr. Springsteen to spend that time with our ASD Band instead and record a message of hope for all 80,000,000 people around the planet who are living with autism. The commitment of a single morning from one man who has a track record of already inspiring millions around the world, would in my belief…change their lives forever. Hopefully he can find that morning and we can add another 80MM healed souls to his legendary resume of inspiration.
How can our readers follow you on social media?
Instagram — https://instagram.com/jakeshousecharity
Facebook — https://facebook.com/jakeshousecharity
Twitter — https://twitter.com/jakes_house
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How David Bodanis of Jake’s House Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.