Background

Lyla is 11 and lives in Hampshire with her mum Scarlett, dad Ashley, and little sister Talia. She is autistic with severe sensory processing disorder.

Mum Scarlett explains “Because she’s non-verbal and she doesn’t process things the same way as us, it affects her daily living skills. So, she’s doubly incontinent still in nappies, she struggles to use cutlery because she doesn’t have the fine motor skills to hold a knife and fork, she struggles to understand any verbal communication so if I call her name, she won’t necessarily respond, she has no sense of danger and is sort of in her own little world, quite rigid in her routines.”

“I think autism is very stereotyped, we’ve come a long way since Lyla was diagnosed but people will still think she is just a naughty child. Also, because people with autism can speak you can’t always tell they have a condition.”

Scarlett added “I think she is pre-judged quite a lot of the time, when you have met one person with autism you really have only met one person with autism. Because she is 11, she looks like a beautiful 11-year-old you can’t tell because there is no physical disability.”

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Daily life and challenges for the family

Family life has to be planned in advance to make sure that Lyla gets the best support. “Our whole life has to revolve around Lyla, if she is struggling or in an unhappy place, the come down from that takes over. We can’t just go and do normal things like a family walk or a bike ride or camping.

“Everything has to be pre-planned, if Talia asks me to do something, I can’t just drop what I’m doing with Lyla and go to her, but it’s the way our family is and we don’t begrudge it. It’s easy to look at other families and think I wish I had that especially as she is getting older and harder to understand.”

Talia, Lyla’s little sister, is six. “Talia is so good, she will sort herself out in the morning, brushing her teeth and getting dressed so that I can get Lyla sorted. I have to give Talia extra food because Lyla will eat her own then grab food from Talia’s plate, and she lets her, so I will give her extra because I know she likes doing it. If she goes anywhere like to a party and someone gives her some cake, she will always ask for some for her sister.”

“For a six-year-old she is very grown up, I don’t realise that that’s not average until I speak to my friends who have children of a similar age and I realise how self-sufficient she is because she has had to be. She understands autism really well because we make sure we talk about it openly.”

The family particularly enjoy spending time together, especially during the summer months. 

“We love it in the garden together, going in the hot tub, having a BBQ. Picnic’s inside on the floor. Holidays are amazing for us as a family. Yeah, it’s stressful to get there, but because Lyla can just swim all day, we can all relax and have an enjoyable time.”

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Coronavirus and Lockdown

Lockdown brought changes to the family’s routine, and the respite that Scarlett could receive as Lyla’s carer.

“It’s affected me mentally; it’s been hard battling two children with completely different needs and keeping them happy. Lyla has been very emotional; she doesn’t have the outlet of doing the things she enjoys.

“Weekends have been stressful; Lyla would normally swim on a Saturday morning and then go to visit Ashley’s Nan but because that routine has now changed to staying in Lyla has been getting quite upset. So, her routine at the moment is sitting and watching the same episode of Mr Tumble over and over again and she’s been doing that for three weeks.

“She doesn’t like going out at the moment, so I am worried that she has been withdrawing. She did love going out to like theme parks and on rides, she loved the adrenaline. They were always stressful days but the positive would outweigh the negative, to see her smile on a rollercoaster makes up for the whole day.”

When Scarlett goes out with Lyla, she wears a sunflower lanyard to show that she has a hidden disability.

“Recently the Sunflower Lanyard has been really abused, people have been buying them so that they don’t have to wear masks, and because of that people have been saying to us, ‘She doesn’t look like she needs that’, I have to explain she has autism and can’t speak.

“You pick the little battles because there are so many in the day. At the same time though there are lovely people who will ask if we need a hand and I try to pay more attention to those people to outweigh the negativity.”

 

How we helped

Scarlett explains that “Everything is so expensive when you have an SEN child, like nappies, clothes, therapy, they all have a massive price tag. A lot of the time parents like myself have to work part time or cannot work at all, I currently work nine hours a week, so you are losing a massive amount of income.”

When the family discovered Family Fund, they applied for an iPad to support Lyla with her communication.

“The biggest impact was when we got the first grant for the iPad. The software had just come out that year, even the Speech and Language Therapist didn’t really know about it. At the time we were not in a financial position to buy one, but we had heard that they could help give your child a voice and help her make decisions.”

“With the iPad you helped with Proloquo-2-go which is like a grid software with pictures programmed in or you can add photos so for ‘Mummy’ I can put a picture of my face and when Lyla presses that it will say the words ‘Mummy’. So, we started on a really small grid of about 10 things that were her favourite things like apple. But she’s progressed to putting ‘I want’ before the item so she will press ‘I want. Apple’ or ‘I want. Mummy’ which is still a slow process but it gives her a choice.

Family Fund have also “helped with garden equipment and a lazy spa, which I know all children would love but Lyla cannot play with other toys and occupy herself indoors, she needs that vestibular input.”

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How it’s made a difference

“We are so glad that Family Fund could help because it’s something that Lyla still uses now, the software has developed with her and she can ask for certain foods and tell us what she needs.

“Before the software we were unaware that she knew the things she does, like colours. I can say to her where’s ‘red’ on a book she wouldn’t answer, but if I say that to her while using the software, she will press the red button, and because it says red, I think she is motivated by the sound of the software.”

“Family Fund really helped at a time when we were feeling lost.”

Lyla's story is part of Family Fund's #InTheirShoes appeal. To find out more and donate, click here.