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Sophia’s Story

Sophia is 14. This year Sophia participated in a Helium Arts’ project, bringing together a group of teenagers over the course of 2018 for artmaking workshops in partnership with Epilepsy Ireland. The group Sophia worked with all have epilepsy, many with additional needs. They called themselves Electric Feathers. We talked to Sophia’s mother Sharon who told us how getting involved in Helium’s project helped her daughter.

 

Sophia was diagnosed with epilepsy when she was just eight. Sophia suffers from four different seizure types, two of which – spasms and absent seizures – are part of her life everyday. Sharon, Sophia’s mother has told us how every morning Sophia has a cluster of spasms and seizures from which she is left completely disorientated.

“It’s like the worst headache, the worst hangover,
and that’s how her life starts every single day.”

Throughout the day in school, these seizures can also happen at any time, interrupting Sophia’s learning, her conversations, her train of thought. Academically, Sharon has told us that this relentless illness, which medication hasn’t been able to stabilize, causes difficulties for Sophia in processing and retaining information. “Every minute of every day is a challenge for Sophia because she doesn’t know what’s going to come next. The unpredictability of this can make her more anxious than is necessary”

As a family, Sophia’s condition also poses many challenges. Late nights, changes in routine, excitement can all cause Sophia’s condition to worsen. Her brother Michael, aged 12, is starting to explore the world independently, getting the dart to meet friends and do normal teenage activities. Sophia sees her brother finding his independence and wonders why she can’t do the same. “We are always with her, we’re in her space…But she’s 14 and she is fighting for her space”

 

Sharon tells us that Sophia’s friends in school are extremely supportive and understanding of her condition, but having a Special Needs Assistant (SNA) with her constantly and the consistent risk of seizure means that she often feels isolated and different.

“She asked me the other evening when she was going to bed… ‘mum, do you think I have any friends’?”

This is where Sharon believes the way that Helium supports young people is important. At the first Electric Feathers workshop Sophia attended, Sharon tells us that knowing everybody there also had epilepsy was a major shift in Sophia “normalising” her condition. She had never met anybody else with epilepsy before. Although the participants share the same illness, Sharon believes that through the creative process, participants are put on a “level playing field”.

“All of them have issues of some sort, but they can all be themselves, there’s no pressure to conform and that’s where it makes such a difference, because everything in life that Sophia attends, she takes a deep breath and asks ‘can I do it?’.”

Sharon points to arts and creativity as an excellent outlet for children with medical conditions because “you don’t have to prove anything to anyone, you don’t have to perform”. While Sophia loves singing and dancing, she has stopped attending drama and dance classes, as the pressure to perform can cause anxiety and stress which in turn leads to seizures. Sharon talks about how children who have serious conditions have to deal with things that other children never have to face. Having a place where they can release this with others who understand their situation makes a big difference in terms of developing confidence and esteem that illness can often take away.

“For kids, long-term illness has a huge knock on effect on your confidence and self esteem. You’re in hospitals, you’re with doctors, you’ve always got appointments, you have to be places no one else has to be, you have to hear things about yourself that other kids don’t have to hear, you have to deal with things that most kids luckily get through life without and they need somewhere to be able to release all this.”

Providing a safe environment where the medical needs of participants are catered to by partnering with the healthcare community is another major benefit of Helium’s way of working, says Sharon. As a parent of a teenager with a serious medical condition being able to let go is a big challenge. Being able to give participants independence knowing that their medical needs will be looked after if it comes to it means that young people can concentrate on getting involved and parents can leave their children without worry. As Sharon put it, “illness became secondary”.

“Helium has opened a whole new world for these teenagers, it normalises life and helps them to fit in. Sophia still goes around wearing her Electric Feathers sweater and the t-shirt. And having the showcase and the photos from it, it’s just so positive”

While Electric Feathers was a positive experience for Sophia, Sharon says the only problem is “there is not enough”. She believes that having more regular opportunities for children and young people to continue to engage in Helium’s programme would benefit participants and their families by allowing for a sense of community to grow around the activities. We need to build a community between kids who have the same issues so that they can have real friendships and make life easier for each other and not feel so isolated”

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