Christina and Innes

“It really recharged us all, there’s not many charities out there for kids with disabilities, and I think it’s quite overlooked. It’s just amazing that someone is recognising that we’ve got it tough and that we need that break."

Innes is 11 years old and lives in Argyll and Bute with his mum Christina, Dad, and younger sister Anna. He has a rare chromosome disorder known as 48 XXYY.

Christina explains “As a result of the disorder, Innes’ is on the autism spectrum, has Tourette’s, and attention deficit hyperactivity disorder (ADHD). It affects everything we do. His level of anxiety is really high, he needs to feel reassured all the time, and he needs to feel safe all the time.”

Daily life and challenges

The family need to plan what they do in advance in order to suit Innes’ needs. “Everything we do we have to monitor. If we go to a park and there’s too many people there, we can’t stay. My partner, he works away, and I stay at home. So everything’s adjusted around Innes.

As a result, there are limits to what the family can do, from taking breaks to everyday life.

“Because my partner works away, Anna can’t do something like go swimming unless there is a second adult. There’s no way you could cope with Innes and Anna in an environment like that. She says I do love him but I hate his autism.

“It’s hard for my daughter because we have to adapt everything for Innes. She’d love to go to discos, or Spain, but we can’t do that with Innes.

Innes also has Koumpounophobia, a phobia of buttons, which is a rare condition that impacts his everyday life even further.

“We can’t eat out in a restaurant because someone there would be wearing buttons. He can’t fly because the screws on the back of aeroplane chairs look like buttons to him.”

His condition also has an effect on his social skills. “He’s got no filter, so if he see’s someone that’s a bit overweight, he’ll shout ‘You’re fat’. He doesn’t really like young kids, he says they’re smelly and they scream. He doesn’t quite have the skills to just say that a baby’s really annoying him.”

“Nearly 12 years down the line, I’ve got a really thick skin. I just smile. I used to really worry about judgement and what people think of me and now I just don’t care. I always think in my head, Innes isn’t giving me a hard time, he’s having a hard time.”

Lockdown

“There’s a lot of families who are isolated because the world’s not equipped to fit them in it. I think the world is getting a glimpse of what it’s like for us every day, not being able to go to the swimming pool, and that kind of thing.

Their support system has also been removed. “I’m on auto-immune suppressants for my crohns, and my usual support system is my mum. But my mum lives on an island, and she’s 73 years old, so I told her to stay on that island! Which meant I didn’t have that support.”

How we helped

The family used their Take a Break grant to get away to the beach and have some time to recharge and see family for the first time that year.

The family were able to spend time together doing different activities, getting away from the stress of everyday life. “We managed to go horse riding. The girl at the stables was amazing, and asked if we wanted her to take Innes out with Anna, and he found it amazing. He still talks about it. This girl took them through the forest and was chatting to them, and Innes just clicks with some people, so he did and he really enjoyed that.

“I hadn’t realised how down I was, how claustrophobic I felt, because I’d been stuck. So when we were in a different place, it felt like it was recharging all of us. I hadn’t realised how cooped up we’d felt. Just being in a different environment and going for different walks felt great.”

“It really recharged us all, there’s not many charities out there for kids with disabilities, and I think it’s quite overlooked. It’s just amazing that someone is recognising that we’ve got it tough and that we need that break.

“Being able to have all of us there, a week away together, it’s lovely for my partner because he has time to bond with the children.”