George is two years old and is currently awaiting an assessment for autism. He lives in Essex with mum Lauren, dad Carl and his two brothers. As mum Lauren says, “He’s on the assessment waiting list. He was referred in 2018, but unfortunately the waiting time in our area is around 18 months. We don’t think he’ll be seen until January 2020. We’re hoping that’s when he’ll have his official assessment and official diagnosis.”

Whilst George is not currently diagnosed, as mum Lauren explains, many of his characteristics are attached to autism. “He’s been seen by a community paediatrician, and it’s been noted that he has a severe speech delay. He’s classed as non-verbal and has really high sensory needs.”

                                  

“He’s a head banger. He’ll bang his head regardless of whether he is sad or happy. The rhythm is linked to an emotion. When he is angry or frustrated, or even when he is very excited, he’ll violently hit and head rock. He’ll hit his head against things like radiators, walls, the hard sections of the sofa, and then he’ll head-butt the floor in one swift motion. He will continuously head bang for anything.”

“He has very little understanding, poor eye contact and communication skills. He isn’t able to follow instructions. I can’t ask him to put something away or pick something up because he doesn’t understand. We’re trying to use sign language such as Makaton and we’re trying to build up eye contact. There’s no real communication – he can’t tell me what he wants.”

Challenges of day-to-day life

For the family this means that day-to-day life can be incredibly challenging. “It’s full-time and we have to fulfil his sensory needs before we complete any task. And it’s particularly hard for my two other children. My eldest is five and my youngest is five months old and it’s tough on them being siblings of someone who has additional needs. It’s difficult for us to even go outside – to the shops, cinema, and bowling, things like that. He’s a runner and there’s no safety element with him when we’re out. He’ll just flip and run. There’s no rhyme or reason to it.”

“I can’t always take him to his doctor’s appointments. Sometimes he will have a meltdown inside the surgery. He might start head-butting the walls, screaming, kicking and shouting. At one of his paediatrician appointments, his paediatrician asked me if I wanted to go as he was that inconsolable.”

                           

George’s sensory needs makes everyday tasks difficult. As mum Lauren explains, “Everything is a massive task because of the sensory issue. He doesn’t like the bath. He won’t let me wash his hair. In the bath he’ll kick and scream. He’ll claw me. He’ll climb back out and throw things out the bath. And unfortunately he can’t tell me what the problem is.”

George rarely sleeps. “He will only sleep an hour or two a night, maximum. The rest of the night he’ll rock and head bang. He sleeps on the living room floor and he’s been prescribed melatonin a few times, but it doesn’t help. He refuses to sleep in a bed, no pillow just his fleece blanket.” Melatonin is a hormone that regulates sleep-wake cycles. The problem, for George, as mum Lauren says, is that “it gives him the hormone to fall asleep but not stay asleep.”

George struggles with eating too. “He has a very limited diet. He’ll only eat things of a crunchy texture. He’ll take a couple of bites a day and that’s it. He’ll hold food in his mouth. There’s such a strong sensory issue behind it.” George’s occupational therapist has assessed his eating habits at home and is trying to help find solutions for the family.

How we helped

“I first heard about Family Fund through my portage worker.” George was first referred to Portage in late summer 2018. It’s a local home-visiting educational service for pre-school aged children. As Lauren explains, “I’d spent so much money on toys for him and none of them were right. He had no interest. When our Portage worker first starting coming round she would bring certain toys to try and help him with his interaction. She explained that the toys were cause and effect – not the regular toys you could pick from the toy section of a shop.”

The toys that suited George were expensive, and as Lauren says, “I’d already spent so much money trying to find the right toys for him. I didn’t want to keep spending. Our Portage worked mention that Family Fund are a charity that can consider grants for things such as sensory toys – the type that George needed. The main application form and all my information leaflets came from them.”

Family Fund provided a grant for sensory toys from Learning Space.

                     

How it’s made a difference

“We were able to get so much, and such a wide variety. We got everything from light based toys and sensory balls to puzzles and a visual calendar.” The family were also able to get sign-along books and musical instruments, a bean bag, a massage kit, magic sand, water beads and different cause and effect toys. “The grant has helped George massively – he now has toys he can play with!”

                               

“Before the grant I’d endlessly be buying him toys. Every Christmas and every birthday I’d try and find something he’d play with. I didn’t realise there were sensory toys like this. And I definitely didn’t realise how effective they could be.” For George, this means he can play and explore. “We can do different types of sensory play – from texture to using the different light based toys. It’s brilliant, and it means I don’t have to buy any more sensory toys – they’re going to last.”

“I would tell families to definitely apply. Of course I know that funds aren’t unlimited. I appreciate that it’s a charity. But if you don’t apply you’ll never know.”

“It means so much to me, our family, and especially George.”

Find out more about our grants and how to apply