Eleven-year-old Owain lives in Wales with his mum Jessica, dad Kelvin, and three-year-old brother Llewelyn.
Jessica explains, “Owain’s main condition is autism. He’s also been diagnosed with ADHD (Attention Deficit Hyperactivity Disorder), dyspraxia, and hypermobility. Owain was born premature at 26 weeks, so we did expect him to have some health conditions.
“Owain can be extremely volatile. He has a profile called PDA (Pathological Demand Avoidance) which is linked to autism and ADHD which means we’re unable to make any demands of him. It means we often need to take the demand out of the question.
“Due to his hypermobility, Owain struggles with movement. He gets a lot of pain in his legs and joints, and he tires easily which can lead to a meltdown. It means we quite often need to cut the day short to support Owain. With hypermobility it’s good to exercise the joints, but the more you move the more pain you have, so he sometimes uses a wheelchair. It’s a balancing act to manage the condition.
Jessica says, “When Owain is calm and relaxed, he can be the most kind, loving, and helpful child. He’s a joker and dangerously sociable. People fall in love with him for his personality. But he does find a lot of things frustrating. He looks at his peers and younger brother and finds it upsetting that others can do things that he can’t. In the last year, Owain has definitely developed a greater understanding of his conditions and it’s really affected him mentally.
“Our lives revolve around Owain. As a result of PDA, we’re not able to do many spontaneous activities as we need to plan and prepare a lot. We can’t do spur of the moment things and Llewelyn has missed out on so much already.
“As a family, we don’t have any additional support or respite from our caring responsibilities. I can’t remember the last time that Kelvin and I went out for a meal together. Life caring for a child with a disability can be quite isolating at times.
“Caring for Owain has given me a huge amount of patience. I also think that you need to have a high level of compassion, understanding, thick skin, and a fighting spirit. Raising a neurotypical child is easier as a lot of provisions and services fall into your lap. Whereas with a disabled child you find yourself constantly fighting. Accessing services and provisions can be a bit of a nightmare to get the high level of support that Owain needs. It is a constant battle.”
How Family Fund helped
Family Fund has supported Owain and his family since he was born. Firstly, with an urgent grant towards hospital costs when Owain was a baby. And then the family received several family break grants and a computer grant.
Jessica recalls, “When Owain was born he was in neonatal for nearly 100 days. The cost of traveling to and from hospital every day, as well as refreshments is so expensive. Having these additional costs on top of the usual bills without our full incomes was difficult. Family Fund was the only place that offered us any help.
“We’ve also received some family break grants over the years. The breaks allow our family to spend time together in a new environment doing normal family things. It’s great for our mental health as we usually spend a lot of time within the house feeling quite restricted.
“Being able to go on holiday makes such a difference to our family. The grants allow us to destress and relieve daily pressures.”
“Most recently, Family Fund granted Owain a computer. The computer provides Owain with a chance to socialise with other children online. Having access to the internet has allowed him to meet others with similar interests which in turn has been a massive confidence boost for Owain.
“Family Fund is so amazingly helpful.”
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