'Isolation means support system is gone' for Sheffield mum coping as full-time carer of three in lockdown

Before that, the Sheffield family was surrounded by support - for children Sam and Ellie, who are both autistic, and for dad Steve, who is recovering from a devastating illness.

But where there were once carers, teachers, and support workers, there is now nobody, as isolation has meant an entire system of support has had to be stripped indefinitely away.

“We’re doing what everybody is doing, and just managing as best we can,” says mum, Emma.

“It’s been really hard for the kids, losing their routine which is such a big part of their ability to function, particularly for Sam.”

Nine-year-old Sam’s condition means that he struggles to socialise, is uncomfortable in crowds of people, and - when things are at their worst - often can’t leave his bedroom.

All of that began to change when support dog Willow Star came to live with the family in 2018.

Willow was funded by Star readers who raised an incredible £5,000 to put Willow through her autism training with Sheffield charity Support Dogs.

“Within months, Sam had grown so much in confidence and independence,” says Emma, who lives with the family in Handsworth.

“For the first time, he was able to go on playdates, he was happy at school, and running around playing with Willow with a big smile on his face.

“He had a new-found love of going out and seeing people.

“Now we’re telling him he can’t go out, that it isn’t safe, and that we have to stay away from people.

“It feels like we’ve undone a lot of the good work that had been done in the past two years.

“It’s difficult to see him becoming anxious and depressed again.”

Emma says that, when it comes to coronavirus, she is doing her best to shield her children from some of the scarier information, whilst still also ensuring they understand how important it is to wash their hands, and be careful in public.

“Sam, as the oldest, understands quite well everything that’s happening,” says Emma, aged 37.

“He knows there’s a virus, and he knows that, because his dad now has COPD, that it would be dangerous for him to get it.

“We’ve explained to him that we can go for a walk, but that if we see people we have to keep far apart, and that we can’t go on the playground, or touch things, or see his grandparents.

“I just don’t know how we’ll teach him, when everything shifts back, that it’s now okay to be outside again.

“Some days, Sam will go out walking, because Willow is with us, but he’s quite anxious about it.

“Other days, we can’t even get him out of bed.

“He’d not come far enough in the journey to feel secure in it, so it hasn’t taken much to push him back.

“We’ve ripped away all of his support, and his precise routine which worked so well.

“He feels like his world has crumbled, and is struggling to cope.”

And in addition to caring for her children, Emma is also now full-time carer for husband Steve, who was in hospital for three months last year, after a severe chest infection saw him lose half of his left lung.

“He nearly died, it was an awful time,” says Emma.

“He went from caring for two quite challenging children, walking the dog for miles each day, working full time, and bringing home an income, to needing carers himself.

“He’s now classed as disabled, and it’s been devastating for him.

“There’s a lot of permanent damage to his lungs, and he’s in permanent pain.

“Taking a shower means he has to lay down and rest for an hour, and eating a meal tires him out.”

And Emma reveals that 47-year-old Steve’s condition means he is classed as being in the top two per cent of people likely to die if they contract Covid-19.

“He can’t get the virus, it’s as simple as that,” says Emma.

“Because he’s so high risk, if the schools do re-open, Steve will have to move out, and the kids won’t be able to see their dad.”

The lockdown has also halted building work which was set to start on the family home, to convert the loft into a bedroom for Sam.

“We’ve got scaffolding up around the house at the minute,” says Emma.

“Sam got a disabled facilities grant from the council, to convert the loft into a bedroom for him.

“We only have a two-bed house, and Sam and Ellie can’t share, as Sam can be quite violent.

“I’ve been sleeping on the sofa for the past six months, because Steve is so poorly, he needs the bed, and the kids can’t share, so one of them sleeps on the sofa with me each night.

“The loft conversion will make such a big difference, because then everyone can have a bed.

“The scaffolding finally went up, after months of waiting, and then we went into lockdown the next day.”

The one beacon of light, in an otherwise dark time, is Willow.

“I honestly don’t know what we’d do without Willow,” Emma admits.

“She’s Sam’s constant, cuddling him when he needs it in the day, and getting him out playing and laughing in the garden.

“It’s as if she just knows what he needs.

“Willow also means Sam can be more independent, as the two of them can trot off to bed when Sam is tired.

“This means so much, because most of the time I’m like a single parent now, with two children who need quite a bit of one to one care, so Willow is like my left arm.”

And Emma reveals Willow even played an important role in what could have been a life-altering moment for Sam and his family.

She says: “It got really scary last year when Steve was in hospital, to the point the doctors recommended we bring the kids in to see him, because they weren’t sure he was going to make it.

“Willow helped us to get Sam to the hospital to see his dad.

“He wouldn’t have made it there without her.”

And in among everything she’s currently fitting into her busy days, Emma is still working 20-30 hours a week from home, doing administrative work for two autistic charities.

“The charity is really understanding of my need to work flexibly,” she says.

“I find that if I do two or three hours a night, once the kids are in bed, it soon stacks up.

“I’ve always worked, and it was hard to give up my job when Sam came out of school, so it’s nice for me to have that time to focus on something else outside of the home.”

As for now, Emma is simply concentrating on keeping her family going, and dreaming of the day the support can return.

“We’re quite lucky really, in that before the virus we had a lot of support, from social care, carers for Steve, and PAs who came to the house to see the kids, or took them out.

“It’s tricky now it’s all gone, but we will get it back, when the world is less crazy.

“In the meantime, we’re lucky in lots of ways; we have a garden for the kids to play in, and Willow for Sam, and we have each other, so it could be much worse.”