Background

Sienna is seven and lives in York with her mum, Caroline. Sienna is autistic and has some sensory difficulties.

Caroline explains, “People often think that we should teach her to settle into our world, but actually, I think we need to accommodate her world. It’s just a different way of thinking.”

 

Sienna’s condition

Sienna’s autism affects her in different ways. “Mainly, she likes to know what’s happening and when it’s happening. Things have to be done a certain way, or Sienna can get frustrated. She will tell the Amazon Alexa to time things, so if I say ‘The TV goes off in ten minutes,’ she will get Alexa to time ten minutes.

“She also has a limited diet, largely based on texture. She will only eat hot foods that are crispy, like potato smileys, turkey dinosaurs, and chicken nuggets. She doesn’t eat fruit or vegetables, but has multivitamin supplements so that she has the right nutrition. Nevertheless, people say she looks very healthy.”

Caroline also says that there is a lack of awareness about autism, especially when it comes to Sienna. “People look at Sienna when I say she has autism and they say ‘she doesn’t look it’. That annoys me. She is very social, and wants to be friends with everyone she meets, which I suppose some people don’t match with the typical idea of autism.

“But it’s not something that should be hidden, in my opinion. People don’t have the awareness of autism that they should.”

 

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How it affects the family

Caroline had worked with autistic adults in her job, but was surprised when her daughter was diagnosed.

“I’ve worked with vulnerable adults in care for 10 years, but when I was told that Sienna was autistic I was shocked.

“It’s been a massive learning curve for me, and I’ve even had the training to support people with autism, but still struggled with Sienna at times. It’s been about learning what causes her to have a meltdown, and how the tiniest things can affect it. It can be mentally draining at times, not knowing how I can make things better for her.

“It’s a case of working out how I can educate myself to look after her properly. I’m about to become a Special Educational Needs (SEN) teaching assistant at a mainstream school, which I’m looking forward to.”

Caroline and Sienna are very close. “Being a single parent, we spend a lot of time together. When she was younger, my mum would look after her too, but now she cares for my dad who has Alzheimer’s, and I don’t want to put too much pressure on her. 

“We play on the switch together, especially games like Animal Crossing. We’ve also found a recipe for biscuits that she will eat, so we like to make those. It’s nice spending that time together.”

 

Lockdown and coronavirus

The biggest impact for Sienna during lockdown was with her schooling. “As I’m a key worker, Sienna was still able to go to school three days a week during lockdown. She didn’t like the change from five days to three, but liked that she could still go to school.

“Unfortunately, she was due to transition from infants to juniors this September. Lockdown meant that she didn’t get to do any of the transition work to meet new teachers and visit new classrooms.”

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How we helped

“We’ve had a grant from Family Fund every year for the last three years, since Sienna’s Dad left. As a single parent it’s difficult to afford breaks, so we get grants to go to Butlins in Skegness during the summer holidays.

“It gives Sienna somewhere she can go and feel safe, as she knows the layout of the park, the people, and the journey there. If she’s going somewhere new, she often gets anxiety.

“They accommodate her needs however we ask, especially as Sienna has a limited diet. They prepare tailored food for her without judgement. They also accommodate her sensory needs.”

 

How it made a difference

“It’s made a difference to us as a family because it is just me and Sienna a lot of the time. As a single parent, there aren’t many times where I can take a break. It’s such a weight off my shoulders.

“Sienna has come to terms with her autism much more since we’ve been going on the family breaks. Because she wants to go out and about at the park, she has learnt to wear her headphones so that the noise isn’t too much for her, which she wasn’t comfortable doing before.

“She’s also become very outgoing. She was bubbly before, but it’s definitely helped her.”

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