Background

Reuben is 11 and lives in Humberside with his mum, Jazz. He has autism and anxiety, which affects his confidence in communicating and going outside. Jazz explains “I was sort of dreading the summer holidays, and how the lack of routine would impact Reuben.”

Then, they found out about Family Fund’s Summer School, and decided to take part. “It meant that we had something every week to look forward to, and helped us to maintain a kind of routine. I knew he would enjoy it, but it’s been a real surprise at just how much it brought us together.”

 

Reuben’s condition

Jazz explains “Reuben had a few issues early on, so his condition was picked up quite quickly just as he started school. As he’s gotten older, the difficulties became more apparent.” “He’s got autism which was diagnosed quite young, a few years ago he started to really decline developmentally and cognitively. They’re now looking into genetic testing for him, and he might be having seizures.”

“He’s got very bad anxiety, so we don’t leave the house very much, he’s experiencing mobility issues as well and having trouble walking. There’s a possibility he has Attention Deficit Hyperactivity Disorder (ADHD) as well, so there’s quite a few things going on.”

Reuben’s condition has a big impact on him. “Largely, it affects his ability to interact with the outside world, and communicate and concentrate. Anything outside ends up being a no-go, he runs into danger and sensory overload.” He is also non-verbal, which Jazz says people don’t always understand. “Just because someone isn’t communicating verbally, it doesn’t mean they don’t want to be heard. Sometimes people don’t make an effort to hear him. Some people are so impatient and want an answer then and there, whereas if you give Reuben time he will open up.” 

 

How it affects the family

Jazz says; “It affects us quite a lot, as I can’t really go out and see people. It makes us very isolated and we can’t do a lot. I have to think things through completely, we might even pull up somewhere and we have to leave straight away because his mood has changed or something like that.”

“There’s not much to do where we live because we’re surrounded by farmers’ fields, which is nice, but can also be quite isolating. When it’s been a long day or a long night and he’s not slept well, it would be nice to go out and get some fresh air but sometimes even that can be too challenging for him.”

Jazz explains that she wishes more people would understand how things that seem simple can be more difficult for a child with additional needs. “To actually go out to the park might have been a bigger challenge for someone than you know at first glance. Awareness is so key, and being patient.” 

How we helped

Jazz says “I saw about Family Fund’s Summer School on Instagram. I clicked to apply for every session and we got a place on them all which was really good!”

“We did ‘Picture your name’, DJ skills, video making and sending flowers, and Reuben managed to put dogs in as he’s obsessed with them! They seemed simple and easy to do, and meant that we could show family and friends what we had been making.”

“We’ve had several grants from Family Fund in the past so knew about the charity. Reuben’s attention is awful, he can’t sit still anyway, so I thought it would be good to have something for us to actually do. If he’s on his iPad, he can focus easier. He also likes being able to see something being made and have a result quite quickly, so the format of the sessions worked too.”

“After talking to Family Fund, I realised that I could do the sessions with him, or on another tablet. That meant that if he didn’t feel up to it, I could learn the skills during the session and then teach him later when he felt better. We had one booked for nearly every week of the summer holidays, which meant that we had something every week to look forward to. It also helped us to maintain a kind of routine.”

 

How it made a difference

“Before the sessions, I didn’t really know a lot about the iPad as I generally just click on the same things like my emails and those kinds of things. But through this I’ve learnt a lot, obviously how to do the videos, and sending flowers electronically which we will definitely start to do for people’s birthdays.”

The content of the sessions also allowed Reuben to learn new skills that suited his abilities. “Reuben is unable to write, and is non-verbal, so he can get frustrated when he can’t express himself. Being able to express himself through pictures and arranging those into videos and collages has been really good for him. And then other people can understand it, as opposed to trying to understand scribbles.”

Jazz added; “It was nice to know that everyone on the video call was in the same boat, and we regularly saw families who has attended multiple sessions like us. It was more like we were all in it together, and it’s nice to know that you’re not alone.”

Reuben has continued to use the skills he learnt. “We went to the beach the other day, and he opened up the movie making app and used some of the pictures I’d taken that day to make another movie from the skills that he had learnt. He added sound effects and everything too. It was interesting as he doesn’t usually instigate things, but he was very excited to do this. I knew he would enjoy it, but it’s been a real surprise just how much it brought us together.”