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Taking time out: Jessica and Malcolm’s story

Jessica and Malcolm became parent carers with the birth of their first child Logan. Although they didn’t know at the time, he was born with a rare gene deletion XP22.11, of which there are only 23 cases documented worldwide.

Eleven years on, they now care for Logan, his six-year-old brother Leo (who also has the same condition) and have a three-year-old daughter. Both boys have severe learning difficulties, health and mobility issues. Leo is registered blind and Logan is partially sighted.

Living with profoundly disabled children has required many adjustments to family life. With both children completely reliant on Malcolm and Jessica for their day to day needs, from changing nappies to washing and showering, and helping them feed.

For Jessica, becoming a carer also meant another significant change. Following Leo’s birth, she found it difficult to return to her job in customer service. After feeling unsupported, with a lack of flexible options to support her needs – including juggling days off with medical appointments – she now works as a full-time carer for both boys.

“My day starts as early as 6am depending on when Logan wakes,” explains Malcolm. “Unfortunately, the loss of this gene is significant as it’s linked to intellect. It means that the boys have never spoken a word and it’s robbed them of the many things that we as humans as pre-programmed to do through our early years and beyond.

“We usually have a paid-for carer who comes in for an hour each morning to help get the boys ready for the school bus. However, when the coronavirus pandemic hit all of this stopped. It was really wearing at first. I am a key worker, so I was still going to work, but Jessica was in the house caring for two disabled boys 24/7. They aren’t able to self-entertain by sitting down to watch a movie or play a video game, so there was no respite for her.

“Being outdoors is important for them. If they’re not getting stimulation, they find it hard to sleep. There’s no chance at all they’d be able to social distance – particularly with Logan, who is quite a tactile child and likes to go up to you to give you a high-five.”

As lockdown measures ease, Logan and Leo have been able to return to school two days a week, and it has been possible to get some paid care in place again to help them get ready for school. However, Malcolm and Jessica have missed accessing other face-to-face support services.

Since registering with Swindon Carers Centre, they have been able to access social outings with the Adult Carers Group, advice from our welfare and benefits adviser, and trips out for families to local attractions like Butterfly World – an important chance for respite.

“Fortunately, we had friends to help with shopping,” said Malcolm. “But there is no replacement for being able to leave the house to meet someone. It can be hard to socialise over technology, zoom calls always come at a time when something else is happening.

“They are our kids and we want to care for them, but it still doesn’t take away from the fact that you’re a 24-hour carer and that you’re caring for someone who relies on this.”

“It’s like being a parent, but tenfold,” said Jessica. “The term disability covers such a vast range of needs. For us, it’s like looking after a newborn 24/7. Before we were allocated paid support, I used to be exhausted after getting them ready – and that was just 8am in the morning.

“Swindon Carers Centre has had a massively beneficial effect for us. It’s important to have a positive attitude. Luckily, I have always been a bubbly, bright person, but it can be so easy to get down in the dumps.

“Staying positive keeps you sane. You have to keep doing things you enjoy, like going shopping or doing your make-up in the morning. Those little things can make a massive difference, you do feel a million times better. You have to do the little things to make the big things happen.

“Most of my friends are carers themselves. We often share information between each other, I learn a lot from other mums. The SCC socials give you a chance to get out there and talk to people. Even if you don’t have that support network, you can still go out and speak to people who have something in common.”

Thank you to Jessica and Malcolm for sharing their story for Carers Week 2020. To get involved in activities for the week, click here.