Background

Cameron is five and lives in Midlothian with his mum, his two sisters, and his dad. Cameron is autistic, and has certain sensory needs that need to be met.

Recently, Emma applied to Family Fund for specialist toys so that Cameron could fulfil his sensory needs through play.

 

Cameron’s condition

When it came to Cameron’s diagnosis, Emma says “We already knew, before he got the diagnosis, that he was autistic. We have an older daughter who is autistic, and we started to notice a lot of the similar traits between them when Cameron were very young. Nursery were picking up on things too, so we decided to talk to our health visitor. They were on board that there was something underlying, they knew that he gets very upset when he’s not in a routine and things like that.”

“When they’re younger, it’s easy to think that they’re just having toddler tantrums. But we noticed that there wasn’t anything that he wanted from it, so we worked out it was more of a meltdown. It’s not something we really encountered before, as my daughter doesn’t have them. She just shuts down.”

Cameron’s autism affects him differently from his sister. One of his biggest challenges is coping with changes and transitions. “Cameron has a really difficult time as it is with transitions, and it’s been a really difficult year for him. Whether they’re big transitions or little one’s even moving from one task to another, he finds it really difficult. Sometimes he can become overwhelmed when there are too many things at once, so we have a lot of ‘now’ and ‘next’ cards to show what we’re doing.”

This year, he’s transitioned from nursery into school, which was going to be difficult anyway but obviously that then happened in the middle of a pandemic, which exacerbated the transition quite a lot and made it a lot more difficult. We couldn’t access the support that we’d normally have, so it’s been really difficult for Cameron.

“We have a choices board for him too, if he has a lot of choices to make, he can become confused, and that confusion then becomes upset. The choosing board allows us to put two things on there for him to pick between, so that he doesn’t feel overwhelmed.”

Cameron also finds leaving the house difficult, especially to go to school. “He loves the garden, and loves to be outside, but he was becoming really anxious about leaving the house. It was getting worse as he got older. We do our best and manage to get him to school, but it can be difficult.”

 

How it affects the family

Emma explains that having two autistic children has taught her a lot. “I think you have to have a lot more patience and empathy as a parent to a disabled child. I feel a lot more educated than I did before my children. It changes the way you parent completely. You don’t just look for a solution any more or how to stop a certain behaviour, you look at the why, why are they doing this behaviour? You spot patterns and try to work out what you can do to help, rather than how to stop them doing it.”

“Even when people aren’t as understanding about Cameron, I try to remind myself that it’s just because they don’t know what it’s like. I was like that a few years ago too. The important thing is learning.”

Even as he gets older, Cameron still has different needs from his sister. “Cameron needs a higher level of support than my daughter, and I think will continue to need that. It means I might not be able to go back to work, and I think that’s the more negative aspect of it.”

“She’s 17, and she’s been really helpful with Cameron. In particular, I can ask her what Cameron’s going through and what she thinks would help him in that moment. I think it helps her too, as she feels less isolated, or as if she doesn’t stand out as much. She likes having a brother who’s similar to her. It gives her a sense of comfort.”

When it comes to caring for Cameron, Emma says “I try to focus on the positive. It can be really stressful, and you think you don’t know what you’re doing. It’s been quite lonely over lockdown too, because I couldn’t get a break. But I try to remember the situations that are great, where we’ve managed situations well and Cameron has been happy and we’ve helped.”

“One of the things that makes me smile so much is when Cameron does his ‘flapping’. He waves his hands and it shows that he’s feeling good, and it just makes me so happy to see that. That’s one of the things that other people might not really understand, but I know what that means for him.”

 

Lockdown and Coronavirus

When lockdown began, Emma says that “Cameron was loving it. It was all Cameron ever dreamt of; being at home all the time. Everybody was home with him, so he got everything he wanted. He likes his dad to not be at work, and dad wasn’t working. He didn’t have to leave, he didn’t have to go anywhere he didn’t want to. He was able to engage with his special interests as much as he wanted. It was initially a really calm time for us.”

However, as Cameron had to start home-school, things became more difficult. “He’s very difficult to engage when it’s not his special interests, so home-schooling was a nightmare. A lot of it was teachers presenting videos, but he doesn’t understand how someone can be on the screen, but not actually there. He just couldn’t get to grips with that, so he missed out on a lot of education.”

In his head, school is school and home is home. We relax at home. That’s another big change for him. All the children have missed out this year, but he’s now going back into school with a disadvantage because he’s not been able to access learning in a way that worked for him.

The family faced another challenge when they had to get Cameron back to school. “When he did have to leave the house, because he hadn’t in so long, going to school was really difficult. Even though we’re quite a way through primary one now, he still hasn’t really settled. School are having a really difficult time, because it’s just too much for him.”

“He’s in a smaller bubble, and that helps. There are no loud noises like bells, as they have lunch at different times. But he’s been used to being around even less people than that. It also concerns us because when school goes back into what it would usually be, it’s going to be another big transition for him. There will be a lot of changes at once that he won’t manage.”

Emma feels that coming out of lockdown has put a lot of pressure on Cameron. “When you have a child, who struggles with change and transitions, this is a whole new battle. He relies heavily on routine and things being very much the same. The second lockdown really impacted his routine. We noticed that his sensory seeking behaviours really increased, and some were becoming almost harmful to himself.”

“He was looking for deep pressure therapy so he was throwing himself at things a lot, and he was putting things in his mouth. He likes to wrap things around his neck, and we were getting a lot of face slapping. As a result, we decided we needed to look for alternative items that he could use to get the same sort of sensory feeling from without causing himself any real harm or putting himself in danger.”

“He’s a bit more emotional and a bit more prone to meltdowns and a bit disruptive, so if we were able to engage him back into something, and refocus him, then that would help to keep him in a better place than if he was to have a meltdown.”

 

How we helped

In order to help Cameron with his sensory seeking behaviour, Emma applied to Family Fund for equipment and toys that he could play with.

“We received a grant earlier this year for sensory equipment for Cameron, which we were able to redeem via Learning Space, which has been really, really useful for us. You could literally spend days scrolling through all of their stuff, there’s such a good range. And because we got a voucher, we could select the items that we felt would be most beneficial for Cameron.”

 

How it made a difference

Emma explains that the sensory toys has allowed them to support Cameron with his needs. “We decided to use some of the equipment to build him a sensory backpack, so we got a lot of the smaller items, like chewigems, sand timers, bubble toys, spinning toys, little Mr Bump style toys that he can squeeze.”

Cameron always has anxiety leaving the house, so the idea with the backpack as well is that we can have it in the house, when he needs it, but if we’re out and about the backpack is there for him to access. He can take something out and use it to help him calm down. It will be especially useful for him going to school.

“We also got him some repetitive motion toys, just for him to refocus himself. We got a mini newton’s cradle, and one where dinosaurs climb upstairs and then slide back round. It just helps him to refocus and have a sense of calm.”

“We got him a gym ball with ridges on it, so that he can bounce on it, he can roll on it. Then he’s got a gym ball chair which he can sit on and bounce, or roll around. It helps him with deep pressure therapy, and means that he can be safe when he needs that time to be more boisterous.”

“We’ve achieved what we hoped to do with them and we are incredibly thankful.”