39 year old Emily lives in Eastbourne with her husband and four children – Lucy, 16, William, 12, Oscar, six, and Reuben, who’s four. Both the younger boys have autism, and Emily has had Myalgic Encephalopathy (ME) for many years, which means her energy and movement have been limited. She is recovering now, and has recently returned to work, but she still uses a wheelchair for long distances. In this guest post as part of our 100 days, 100 stories campaign, Emily describes how her family is trying to meet the extra costs of disability.
The boys have a lot of difficulties with food and there’s lots of wastage. If they get some bread or cake or a banana, they will eat part of a slice, throw it on the floor, get another, and throw that on the floor. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges. Sometimes they won’t eat at all; another day one will eat dinner, but the other won’t.
The boys often need particular materials and certain fabrics are a no-no, so we’ve wasted money on things they won’t wear at all. Oscar insists on wearing one sock at night; the other sock gets separated so I end up with a sock nightmare! Reuben loves playing outside in the garden, but will get very muddy, jumping in puddles and sitting down on wet surfaces that other children would probably stay away from at his age.
We get through a lot of washing powder with extra continence problems. Ozzy is only just out of nappies at six; Reuben still wears them 24 hours a day and he’s four. He has nappy leakages at night, and spills a lot of milk on the bed, so that’s extra washing. The other day Oscar put his hand down his pants and smeared poo in his bed. When Ozzy was in nappies, we would dress him in five layers of clothes to stop him smearing everywhere, but now that he’s potty trained he needs to go to the toilet himself at nights, so he goes to bed in pants and pajamas. It’s a difficult decision between teaching him independence and keeping things clean.
I’ve tried to get the boys interested in reading since they were babies, but it’s been a struggle. Ozzy’s just started showing an interest, but Reuben’s just not interested because of his speech and language delay – so books end up getting ripped up, partly in frustration and partly from excitement I think.
I have to think outside the box and use online games and reading apps. Both the boys are fixated with screens, so we try to use them productively. If we could afford an iPad with the right apps it could really help Reuben learn to communicate.
Toys and play
They’re very destructive in their play and exploration, and get through toys like no one’s business. Reuben goes to his bedroom, pulls all the drawers out and empties all his toys on the floor. I think perhaps all toddlers are destructive, but the boys have been in this stage for five years. They also play with everyday items around the house – things from my desk, the kitchen, the bedroom and the bathroom. This isn’t only an extra expense on replacing the items, but also wear and tear on the house.
It’s only because I’ve worked hard at trying out different combinations of supplements and pacing my rests throughout the day that I’ve managed to get to a place where I can return to work. I take D-Ribose energy supplement, which boosts energy and recovery. That’s the most expensive, at £18 per 250 ml. Without it, I wouldn’t be able to get out of bed. Then there’s Aloe Vera juice, vitamin D, evening primrose oil, among others. I easily spend £50 a month on the lot, possibly more. They all really make a difference.
I’m really sensitive to chemicals and had to change shampoos and bath stuff to dermatological and natural ingredient products, but it’s very expensive to trial and error those. The boys also get psoriasis and eczema so they need to have special toiletries. The consultant recommended having lavender oil in their bath to try and calm them at night, so I managed to source a big 100ml bottle for the same price as a 10ml. But all this takes time and research, and you’re not always successful finding a good deal.
To go shopping I hire a mobility scooter, which costs about £100 over the year. We’ve had to replace car seats because Reuben’s an ‘escapeologist’ who manages to get out of most five point harness car seats, and we’ve had to replace buggies over the years. Car parking can be expensive, especially in hospitals. When you’re transporting two autistic boys, public transport is not a valid choice because of the safety issues with the boys running off in a random direction.
Looking to the future
We use the boys’ DLA (disabled living allowance) to help with their care, so we have an extra pair of hands on the school run to keep them safe, and to help us keep on top of the washing, extra tidying and cleaning.
I’m happy to be back working, but the financial state we’d gotten into by me not being able to work was getting really bad, and we were getting heavily into debt. We sold our flat to pay off our debts, and moved into rented accommodation.
If I hadn’t recovered enough in order to be able to get a job, we’d be really struggling still. With both of us working, we can now cover all the high costs of living, and the extra expenses that come with our beautiful boys. We can’t take them to therapeutic groups or swimming in the evenings, as I don’t get home in time; but just like everyone else, we’re doing the best we can with what we’ve got.