A very special school

Rowena Humphrey, 49, from West Sussex, whose son Finn was born with a rare birth defect that causes multiple disabilities, tells us how Chailey Heritage Foundation has changed their lives

Finn Humphrey, 18, rarely experiences a case of the back-to-school blues. “He loves going to school and claps most mornings when the bus turns up to take him,” says Finn’s mum Rowena. “He knows and enjoys the routine and likes being around the other pupils, staff and carers, who are all very friendly and supportive. It’s a great place for him to be.”

Finn is a day pupil at Chailey Heritage School, run by the Chailey Heritage Foundation. It’s a specialist school for children and young people with complex neurodisabilities, high health needs, sensory impairments and associated learning disabilities. He started at the school at 11 years old, after Rowena read about its specialist facilities, which she thought would be ideal for Finn.

“Finn was born with agenesis of corpus callosum [ACC], which means that part of his brain is missing. We didn’t find out until after he was born,” explains Rowena. “I’d had what I thought was a normal pregnancy with Finn – although he wasn’t moving as he should, but it was my first pregnancy, so I didn’t realise. I then had a caesarean because he was breech and a week late.” Following the birth, Finn couldn’t feed or maintain his temperature.

“He failed to thrive, so was constantly being poked and prodded and in and
out of hospital. He was also tube fed on and off. He was given various tests – including a lumbar puncture when he was just a week old – but they didn’t come back with a diagnosis, and nobody could figure out what was wrong.

“Luckily, he started to feed and get to a healthy weight at about eight months old, as he was given a prescription formula that I managed to get down him, but he had lots of little issues that carried on and he wasn’t reaching any of his developmental milestones. He was never really out of the medical system.”

When Finn was eight months old, he was seen by a paediatrician in Worthing. “It felt like the endocrinologist and team in Brighton had run out of tests to do, so he was passed on to someone else. The paediatrician took one look at him and said he had global development delay – which means he takes longer to reach milestones – and a diagnosis wouldn’t really change how it was treated. But she referred him for an MRI scan, which was done under general anaesthetic in London around his first birthday.”

The MRI showed Finn’s corpus callosum – the structure that connects the two hemispheres of the brain – was missing.

“This finally gave us a reason why Finn was like he was, but it was devastating to know his symptoms weren’t fixable. He didn’t have a named condition that could be treated, and the brain won’t grow back – it was missing when he was formed, as his brain didn’t fuse correctly.”

Finn is now completely reliant on carers for every aspect of his life. “He has four- limb motor disability – he can’t control his movements and has no fine-motor skills, so can’t feed himself for example. He also uses a wheelchair at all times.

“He can’t speak and has no recognised form of communication – although he has been increasing his understanding of PECS (Picture Exchange Communication Scheme) and the school and carers use this to give him information about his day – so you can’t really know what’s going on in his head. However, he can choose between two objects and knows what he likes – such as racing cars and knocking things over that have been stacked up for him.”

When Finn was ten, Rowena learnt about Chailey Heritage Foundation and the specialist facilities they offer for children with complex health needs. “I heard of it through other mums and knew it would be perfect for Finn. They have so much equipment – including a power wheelchair he could use – which he wouldn’t have access to elsewhere. I knew I would have to fight to get him in – you have to prove to a local authority tribunal why your child should go – but I also knew it would be worth it.”

“EVERY ASPECT OF FINN’S LIFE HAS BEEN IMPROVED BY ATTENDING THE SCHOOL. IT’S A UNIQUE ENVIRONMENT”

Finn was accepted for a place at the school, which he started attending for five days a week when he was 11 years old. “I could tell he felt happy there, and I was thrilled by all the facilities they had for him. It’s a much bigger campus than normal schools and the outdoor area has tracking all the way around, so he can use the power chair both indoors and outdoors. They put his chair on to a platform and he can use switches to move himself, so he’s got a little bit of independence. That’s great for him, as he is completely reliant on carers for everything else.

“The school has also provided a special walking frame Finn can use – which is like a sling that he sits in inside a frame – because he doesn’t have any ability to kneel, crawl, sit safely or stand, so he likes to go for a long walk in that with his carer and will often go and take the post to the office and they will give him a letter to take back.

“He has taken part in horse riding – using a specially adapted technique they created for him, as he has scoliosis, where he lies on the horse back to front – and takes part in hippotherapy sessions, which is a specialist type of therapy using horses, and there’s a large hydrotherapy pool. He has also been attending the on-site farm – Patchwork Farm – where he enjoys spending time with the Shetland pony, and he likes using the Eye Gaze technology with a big interactive screen to play cause and effect games.”

Finn and Rowena have also benefited from the clinical and engineering services available on-site. “Luckily, Finn doesn’t have to miss a lot of school to go to appointments, as he can go for his appointments on-site, then return to the school straight away. If something needs tweaking on his equipment, or his wheelchair needs something bespoke, it can also be made on-site, as they have an engineering area and the engineer can come in and fit whatever needs to be fitted or fix whatever is broken. It is amazing to have all those resources at our fingertips and available in one place.”

Since Finn started at Chailey Heritage School, Rowena has noticed a difference in him. “He has improved his social skills, patience and increased his independence, and it’s great to see that. It’s a unique environment where he is surrounded
by a cohort of children in similar situations and takes part in a wide variety of activities I would never be able to offer him at home. Every aspect of his life has been improved by attending the school and I am so grateful for that.”

THE BIG GIVE 2022: CHAILEY HERITAGE FUND

PATCHWORK FARM – THERAPEUTIC CARE FARM

TOTAL RAISED: £25,000

The money raised in Candis Big Give by Chailey Heritage Foundation will help to fund the running of Patchwork Farm, a fully wheelchair accessible therapeutic farm featuring traditional and non- traditional farm animals. It’s available for day pupils and residential young people, as well as local community groups.

The farm started after staff members noticed the benefits when pupils were going out to see animals in the wider community, but were restricted in terms of what they were able to do in a lot of places. At Patchwork Farm there are concrete paths for wheelchairs, so the children can get up close to the animals, and adapted feeders, so they can help to feed the animals themselves.

The funds raised will go towards clothing and hygiene equipment to keep visitors to the farm safe; care and food for the animals; pay for the manager and assistant; upkeep of the buildings and land. The farm will offer the young people an interactive, multisensory, outdoor-learning experience, to help increase their confidence in new and different environments and promote physical and emotional well-being.

Visit chf.org.uk for more information.

WHAT CHAILEY HERITAGE FUND MEANS TO ME

Lesley Barcock, farm manager at Chailey Heritage Foundation, on her joy at working for the charity

“I was teaching animal management when I heard that Chailey Heritage Foundation was looking for someone to manage Patchwork Farm three years ago, and it seemed like a perfect fit. I had heard a lot about the charity and the wonderful work it does, so I couldn’t wait to get involved.

My job is to run the farm and make sure all the health and safety and animal husbandry are taken care of. I also develop the educational side of things, working with the school.

All the pupils come down with something called ‘my next step’, a learning
objective that might be something like encouraging movement or choice, or finding out more about the animals.

It’s amazing to see the change in children during their visits to the farm. We’ve got one young lad who really struggled being anywhere other than home or school. He was quite wary of the animals to begin with, but we used to take the guinea pigs into his classroom and he started to show interest. Then he would have them on his lap and help to brush and care for them. One day he wanted to see them when we couldn’t bring them to him, so we invited him to the farm. Because he had been working with the guinea pigs in the school, he was able to do it. He started coming to the farm every week and can now go out and do things with his family, too, that he couldn’t do before. It’s changed his family life, as well as building his confidence. It’s such a privilege to be able to witness things like that and work with our young people here. Every day there will be a moment where I just feel overwhelmed by the positive things I see, which makes me feel very lucky.”