We are Jonathan, Veronica, and Fionn. We currently live in Ireland. Fionn is 26 and has Down syndrome.
Years ago, we asked our teenage son, Fionn, what he wanted to do when he grows up. He said to be the next David Attenborough (BBC Nature Presenter). A week later, we asked him again. He said a professional violinist. The next time, a director of SciFi/Fantasy films. Then a member of One Direction.
Such ambition, and what a great opportunity for a research project. If we explored each possibility in turn (but maybe not the world-famous boy band one, directly), not only would he then be able to make a more informed choice, but we could share the process with other families, to inform and inspire their own searching.
Fionn's story of determination is so inspiring. The family support he gets provides an amazing catalyst for his dreams and aspirations. Fionn's story and many others provide inspiration and sage advice throughout The Essential Guide for Families with Down Syndrome.
We set up a social enterprise, with Fionn and Jonathan as its first (and only) employees, called Fionnathan Productions. Financial help came from two government grants amounting to a quarter-time contract for each of us. Veronica is our company Secretary on the Board of Directors. We have probably two of the most extensive job descriptions on the planet. Fionn’s includes:
Searching for Structure
Fionn’s first task was a very practical one: searching for his own apartment. It’s certainly work, so why not be paid for it? He scoured notices online, arranged viewing of suitable apartments, researched and applied for any government help he was entitled to, and eventually, signed a lease on his first apartment. Soon after, he did the same for an art studio.
Redistributing Food
What’s the best thing to do with perfectly good food that is about to be destroyed when supermarkets clear shelf space for new stuff? From our point of view, the best thing to do is to eat it. So, to disrupt the food waste chain (and get free food!) we partnered with a much larger social enterprise that brokered deals with three local shops. But we quickly realized the donations were ten times what we could eat ourselves. So Fionn started knocking on doors all around his neighborhood, dragging his wagon around and making new friends. We now have a network of two dozen families who share the food we get. Fionn has developed a lot of social capital through this good deed.
The Search for Happiness Project
As already mentioned, Fionn has a long list of life goals. To help him narrow his career aims, he interviews people who are successful in his fields of interest, asking celebrities and regular citizens, “What do you love about your life?” Our YouTube Channel, ‘Fionnathan Presents: What Do You Love?’ has over 600 of these interviews with more than 3 million views!
Guest Lectures
It seems to us that most adults with Down syndrome have less choice and control in their lives than other adults do, though clearly that’s not true in Fionn’s case. We want to share our innovative approach with the people who will be in position to bring systematic changes, so we reached out to various programs at many universities. Students and their professors find our talks fresh and stimulating. We have given over 50 such talks at over 30 institutions. College students often say, “Fionn, I’m envious of your life.”
And that is just a taste of what Fionn’s job entails. He often plays his fiddle on the streets of Galway and elsewhere, has done work on multiple film projects, works in politics and policy as a community advocate, and seeks amazing nature experiences which he has shared with over 10,000 school children from the Amazon to Zanzibar.
And we’re just getting started. (Or not, because we’ve always said the day Fionn decides he no longer wants to be a social entrepreneur is the day we wrap up Fionnathan.) Next, Fionn wants to move our base of operations to America. See you soon.
Anything’s possible. Or maybe everything’s possible – we’ll let you know.
Jonathan, Fionn's dad
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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