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Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

Losing a child or raising a child with a disability or mental illness is a situation faced by huge numbers of parents. Yet the parents who have these struggles may feel very lonely because others cannot relate to their experiences. Fathers, in particular, can feel a pressure to “stay strong” for their families and not talk about what they are going through. Scott Jackson explains how Eddy—the not-for-profit group he founded—provides a space where fathers facing distressing or unexpected times can support and inspire each other

By Scott Jackson

My name’s Scott Jackson, and I’m the founder of the not-for-profit Eddy. Eddy is a network that brings together men who’ve faced difficult challenges as fathers—such as the loss of a child or raising a child with a disability or mental illness. It’s a space where experiences can be shared, listened to or read—helping us to keep moving forwards, together. A big part of what we do is running the Eddy Podcast, which is a series of conversations between dads, where they share their own personal stories, as well as what they’ve learned.

As dads, we always want to believe we can do anything and everything to protect our children. But sometimes, really hard or painful things happen that just aren’t in our control. Suddenly, we’re in a situation we never imagined would exist. Talking about difficult times as a dad isn’t always easy, but hearing how other men got through them and moved forwards really helps. Around three quarters of the people who take their own lives in the UK are men, and men are also less likely to access NHS talking therapies than women. That’s one of the reasons Eddy’s mission is so important.

When I’m not working on Eddy, I run a video agency, where we do podcasts, videos, live streaming and virtual events. I have four children—Thomas who’s 23, Oliver who’s 20, and Rosie who’s 16—and then there’s Alexander, who we sadly lost at birth. Thomas has a variety of complex disabilities, resulting from his traumatic birth, during which he lost his twin brother, Alexander. Thomas has a global brain injury, meaning every part of his brain is affected. He has cortical visual impairments, is registered blind, has no speech and the mental age of a child who is less than a year old. He’s fully mobile, which is great for him, because he loves jumping on a trampoline! He’s fed via a gastrostomy tube because of his hypersensitivity, which he developed when he was very young, and he relies on me and his mum for his personal care. He suffers from epilepsy and has serious nocturnal seizures. Other than that he’s a really happy boy!

About 10 years ago, I came up with the idea for Eddy because I felt there was nowhere for dads like me to get information or insights. I enjoy listening to podcasts and reading books, so it was natural for me to look for those kinds of things, but there wasn’t much out there. The small amount I did find was very staid, so I really wanted to create something that brought hope to people, and inspired fathers to carry on.

Although we don’t know the exact number of dads collectively affected by these issues, we can say for certain that there are a great many of them, and that they are often under a lot of pressure. For example, 8% of children in the UK are disabled—so that’s a lot of dads in just that specific parenting situation. In 2012, Scope and Netbuddy ran a survey which found that 43% of these fathers kept their disabled child a secret from their boss, 84% felt financial pressure as a result of caring for their child and 63% said they couldn’t easily talk to others when times were difficult. And this data was all before the pandemic!

For me personally, I think the fact that most people haven’t experienced my situation is probably the hardest part of it. You don’t really have a choice. You can either walk away, bury your head in the sand or just embrace it. Over the past 23 years, I’ve learned to embrace it; and there are hard days, impossible days and end-of-the-world days—but there are also good days. Everything has its peaks and troughs. It also brings me back to why I started Eddy. There is a way forward on the darkest of days, and I want Eddy to help as many people as possible. If we can help each other to cope, grow and learn, then we’ve done our job. It’s giving people the tools they need through the stories of others.

The great thing about Eddy is that there’s the opportunity for a dad who’s just experienced the same thing as one of our podcast guests or bloggers to find their story and realise at some point they’re going to laugh again and look forward to waking up again. Because those first few weeks and months—sometimes years—are just horrendous. At the time, you keep waking up and wondering whether it’s a dream; whether it really happened. But you will get through it, as long as you keep moving.

One of the fundamental parts of Eddy is that you can share your story—and we really want as many stories as we can get. If we don’t talk about these experiences, we can’t learn from each other. I’m really keen that we have a huge variety of stories, because once you’re in the situation where you have a child with a disability, or you’ve lost a child, or you’ve got a child with significant mental health issues, you’re different to a lot of other dads out there

You are in the minority, and although there might still be hundreds of thousands of us, you don’t experience fatherhood in the same way as those that don’t have that. So, when your kid’s kicking off or you’re grieving your child and you meet a dad who’s not dealing with that, there’s a disconnect.

For some of the dads on the Eddy Podcast, it’s the first time they’ve spoken about their experience. And if it is the first time they’ve told their story and they’ve benefited from it, that’s fantastic. I was talking to a potential podcast guest recently and we shared our stories briefly. Afterwards, he dropped me a text and told me he really appreciated the conversation and that he was looking forward to picking up his son,  who has a number of disabilities, from school and spending time with him.

Another dad who was a guest on the podcast goes to something called Talk Club, where the group start the session by rating their mood out of 10. We did his podcast interview in the carpark before he went in to that evening’s meeting. He said he normally goes into Talk Club rating his mood at a four or five, but after our podcast conversation, he felt like seven. So just talking about it clearly helps people. I’m not a therapist or the world’s best conversationalist, but there must be something in that.

If you’d like to find out more about Eddy visit eddy.network, get in touch with Eddy by emailing hello@eddy.network or share your own story on the Eddy website.


References

[1] Office for National Statistics. (2019). Suicides in the UK: 2018 registrations. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/suicidesintheunitedkingdom/2018registrations

[2] https://files.digital.nhs.uk/99/3916C8/ment-heal-act-stat-eng-2019-20-summ-rep%20v1.1.pdf

[3] https://www.gov.uk/government/statistics/family-resources-survey-financial-year-2019-to-2020/family-resources-survey-financial-year-2019-to-2020

[4] Findings from a 2012 survey of 500 fathers, entitled Dad and Me—Scope and Netbuddy.


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