Raffy’s story

Raffy positively brightens up the day with his cheerfulness, and his time at the centre influences him in return...

Raffy and his mum, Mish, first came to Calvert Exmoor in 2016 and have visited four times in total. Their recent break in 2024 continued to bring out some new surprises and magical moments.

Raffy always has a positive effect on those around him. In this guest story, Mish kindly explains how Calvert Exmoor has also had a positive effect on them…

What were some highlights of your recent visit to Calvert Exmoor?

“My son had a wonderful time and helping him to climb the wall (which he’d not done before) was a real highlight.

I had a lovely sense of returning to a family space as he knew the centre well by now and he wasn’t daunted by any of the activities.

Raffy was a huge cheerleader for everyone in his group, including everyone irrespective of their abilities and watching some of the other participants open up and warm to him was a real joy!

Riding a horse by myself without a walker on lead was phenomenal experience for me personally…to be included as a parent carer and actually enjoy the activities was remarkably uplifting.”

Can you tell us about Pitt-Hopkins Syndrome and how it has contributed to Raffy’s life?

“For much of his life, Raffy had an unknown syndrome with no offical diagnosis.

The fact is, a lot of learning disabled children in the UK remain undiagnosed, they often wear the labels of “Global Developmental Delay” “physical difficulties” “speech and language difficulties” etc etc.

This makes it really challenging for parents and caregivers to find ways to find support for their child. Many services are geared towards particular diagnoses, whereas Calvert Exmoor does not have this limitation in the way it views the people that visit. It’s really important to get to know the person underneath. Raffy has shown characteristics from many conditions and has been supported over the years by therapeutic and educational approaches relevant to all of them.

We only got our diagnosis in Lockdown after 14 years of not knowing. It was a massive bombshell for me. I discovered the entire professional network had known about it for two weeks before me and were trying to find the best way of telling me.

Pitt-Hopkins Syndrome is a mutation on the TCF4 gene. It sits with other conditions like Angelman’s and Prader-Willi Syndromes and a plethora of Autistic Spectrum Conditions. Everything fell into place for other people more than me when the diagnosis landed. The gulf between receptive and expressive communication, the gastro and breathing difficulties, the atypical Autism and his extremely friendly and exuberant nature. Nothing changed for me. It did change for the professionals around us because now they could learn about a medicalised condition rather than have me describe the human underneath it all upon any new encounter.

When we first came to Calvert Exmoor we didn’t have a diagnosis. Today we do, and I can’t say it has made a difference in the way that the wonderful team at Calvert treats Raffy as an individual and our extended family, including the many wonderful personal assistants we’ve brought over the years.”

2016

Raffy with his brother and personal assistant

How did you hear about Calvert Exmoor originally and what drew you to the centre?

“I had been recruited as a Director of a local charity in Brighton that did rock climbing and outdoor activities for low-income families and young people not in education, employment, or training. They were brilliant and worked with so many different groups, but their remit fell short of those with complex needs. So I began researching this idea further, Calvert popped up immediately in my hunt for “inclusive adventure” and I set about booking our first trip there in 2016.

Unfortunately, there’s nothing residential like this open to the SEN families in our area of Brighton, only school trips and holiday clubs for able bodied/neurotypical young people that often can’t provide the expertise or equipment to include our young people. Whilst we can organise the odd cycling session or trip to the bowling alley, these are all one-off activities we have to drive a long way to sometimes for a session that only lasts an hour.

Lack of safe spaces is a real issue for disabled children especially as they grow up to become disabled teenagers and adults so being able to have the safety of the Calvert Exmoor environment allows us to relax and not be so anxious or hypervigilant or judged by people.”

What are your favourite activities and why?

“With so much to do it’s difficult to choose a favourite. On each trip we have tried something new. I know Raffy really enjoyed climbing this time as it’s the first time he successfully made it up the adapted outdoor wall which he’s never managed before and was so incredibly proud of himself.

He also loves the Zip-Wire which offers him the chance to experience the thrill and exhilaration of an activity that challenges him to take risks in a safe way.

As a carer I loved being able to join in with horse riding, I love going for a swim and of course I’m a big fan of climbing!”

How do the centre, the accommodation and the facilities support Raffy and others?

“We always tend to stay in the same apartment, the fact it has a very small kitchenette and living room makes it the perfect place to retreat to if Raffy’s is becoming too hyper-aroused.

The security of the courtyard and the beautiful planting and wildlife holds wonderful seasonal interest throughout the year and a great space for young people to play games like tag or hide and seek. The way in which the building and surrounding areas connect to each other is a really clever use of the space making wheelchair access really easy.

The dining room and conservatory offer different spaces to eat and drink and the effort the kitchen staff go to to cater for all dietary needs is so thoughtful, there’s lots of adaptive eating and drinking equipment (and they don’t mind a messy eater!) and they even baked a birthday cake for one of our PAs 30th birthday that we shared with all the other groups!

The games room and sensory room provide lots of space for breaks in between activities and of course there’s the heated swimming pool with excellent changing facilities and a jacuzzi which is so soothing for weary bodies after a busy day of activities.

The variety of equipment like adapted bikes, different saddles and stirrups, different types of harnesses and adapted archery bows ensure everybody can take part even if they have limited mobility or there are other safety considerations. There’s also a lot of additional equipment like waterproofs, helmets and life jackets!”

What you enjoy the most during your time here?

“The chance to really focus on having some fun with my son. As a single parent I don’t have anyone to help me or who I can rely on for support and often struggle to just keep on top of the boring basics of daily life. Having the practical support and mental space to put aside the intensity of caring tasks like cooking and cleaning, makes all the personal care a bit easier and me more able to focus on being “fun mum”. I find Raffy listens more and his behaviour is so much easier to manage.”

Are the fellow guests supportive and does Raffy make new friends?

“Raffy has always been the life and soul of all his groups. There was one year we were let down by our PA at the last minute but decided to come anyway. We were “adopted” by another group of young people from Bristol! I’ll never forget how kind and inclusive the staff were that year, knowing that I was on my own, everybody from the centre staff to other guests made sure I had the chance to eat my meals and included Raffy in their swimming sessions and games. At the end I helped them with their awards ceremony and disco – we still have the certificate they gave Raffy for being “The Friendliest Campmate”. It was so great to meet so many wonderful young people and their talented staff.”

Would you say that visits to Calvert Exmoor have positively affected Raffy in everyday life?

The impact on his behaviour, listening skills, confidence and ability to self regulate are noticeably different.

His vocabulary has expanded both verbally and in his Makaton signs.

He is generally in a more buoyant mood after each visit, he is much calmer and able to listen and settle more easily. His expectation and compliance around routines improves a lot.

In a world that can be quite sterile and rigid for young people like Raffy, making sure they can engage with normal activities is a huge factor in his development – you can deliver Occupational Therapy, Physiotherapy and Speech and Language Therapy in one activity at Calvert Exmoor and it doesn’t feel like work!

He’s a lot more adventurous, his ability to take risks and try to solve problems with help has really improved. His concept of “dangerous” and “safe” has really improved and he listens really well to instructions on days out.

Plus, his love of other people and how to behave in group situations can be a challenge. His lovely exuberant nature and desire to include everyone can be a problem in some settings and he’s learned to listen and respect other people’s personal space.”

In general, how do Calvert Exmoor breaks make you both feel?

“It’s a fantastic bonding experience and something I know Raffy would love to continue to do for the rest of his life with or without me. I love the surrounding countryside and it’s such a welcoming sanctuary from the grind of daily life. I always feel like my brain and body are recharged after our trips and the lasting effect it has on his behaviour and confidence to engage with new activities is immeasurably valuable to our resilience as a family.”

Do you have any key memories that will always stand out to you?

“The first time Raffy climbed a wall on our most recent trip will stay with me forever as will the opportunity I got to ride a horse without a walker! Meeting all the wonderful families and other guests means I have made friends for life who i still keep in touch with.”