By Julien Morel

Copyright jerseyeveningpost

This week is National Inclusion Week, which celebrates inclusion and taking action to build inclusive workplaces. To begin a series of articles, former JEP journalist Dolores Cowburn writes about a recent trip to Jersey with her husband Rob and their two children, Thea and Tilly, who has a rare neurological condition

Going. On. Holiday.

A phrase uttered by many families during the summer holidays.

Yet loaded with more significance when you have a child with complex needs.

Will we be able to cope?

Does the hotel have a nearby hospital?

Does it have a ceiling tracking and a hoist, a warm pool, wheelchair accessibility or blended food?

Can we cope with the feelings of vulnerability, worry, being out of our comfort zone and away from our usual medical facilities?

These are our key considerations because we have a nine-year-old daughter Tilly, who has Rett Syndrome, which is a rare neurological life-limiting condition which means she has 24-hour care needs.

Tilly, who has a ten-year-old sister Thea, is in a wheelchair, has an 83-degree curve in her spine, cannot use her hands, is tube fed a blended diet, cannot transition between postures, is non-verbal and has weak bones.

This means we are reluctant to travel too far from home.

So Jersey felt like a suitable compromise.

I met Tilly and Thea’s dad Rob, now my husband, in Jersey in 2007. He was a maths teacher at De La Salle and I was a journalist at the JEP.

We moved to Yorkshire in 2011, but Jersey holds a special place in our heart.

So when we heard about Maison des Landes we thought it would be perfect for us.

And it was.

We packed up the van and drove to Poole, a ten-hour journey which surprisingly didn’t feel too bad. And caught the DFDS ferry across with great passenger assistance, parking right next to the lift, which fortunately was working and a lot of support if we needed it.

The premier lounge was well worth it as they had a sofa which meant Tilly could get out of the wheelchair and stretch out.

When we got to Jersey, it was so straightforward to get to the hotel, nestled in the heart of St Ouen. And what a breath of fresh air it turned out to be.

Maison des Landes has undergone a major refurbishment in 2023 and everything it does is geared towards accessibility and supporting people with complex needs.

From the space for wheelchairs, to the profiling bed, to the tracking and hoist, to the lowered tables for Tilly’s wheelchair to get underneath, it was a magical place to stay.

The scenery was stunning and the energy around the hotel was just joyful.

Steve Martin, the manager, is so approachable and dynamic, making accessibility feel the most natural thing in the world. His vision for Maison des Landes is to support families like ours because holidays like this in a suitable space can be truly lifechanging.

Being able to normalise 24-hour care needs by having all Tilly’s needs met in an adaptable hotel took the pressure off us as a family and meant Thea got the same attention and environment as Tilly, while feeling like a really friendly holiday environment.

Staff including Gino, Ruth, and Jason were just so supportive and attentive so the stay felt like a home from home.

To have our food blended to the exact consistency for Tilly through to accessing the hydrotherapy pool most days was game changing.

Tilly can’t regulate her own temperature and can’t go in the sea or in a normal pool, so the hydrotherapy pool was brilliant. Thea could take her floaty in and Tilly got essential physio with her dad. It helped her stay awake all day, which is hugely unusual but heartwarming for us.

Where do I start with the activities?

Wetwheels Jersey involves going out on an adapted boat with volunteer sailors to sail around the bay of Jersey with both girls getting the chance to steer the boat. Tilly said on her eye gaze the next day that she wanted to go out on the dinghy and in the ocean. Praise indeed and being out on the open water was a tonic for all of us. I was amazed she could be wheeled up to sail the boat.

Huge thanks to Ian and Richard for the time and knowledge sharing.

Beachability, with the marvellous Chris Martin, meant we could rent a specially adapted wheelchair to get on the beach. St Brelade’s beach was perfect and I could spend time on the sand with Tilly, while Thea and Rob went kayaking and swimming in the sea. Seeing Thea grow as a person during the week was just lovely for us as parents because it felt like a family holiday that met all our needs. She usually has to watch as we spend a lot of energy ensuring Tilly, who is completely dependent on others for her care, has what she needs to stay well. Thea is an exceptional sibling, but to be able to accommodate her needs aswell as Tilly’s felt so good for us.

That started with the base of Maison des Landes, because it was such a warm friendly space geared towards supporting you all as a family. A beautiful environment which had a luxury feel, with all the equipment anyone with additional needs would have to rely on.

Profiling beds mean Tilly can sleep at a 30-degree angle to avoid her aspirating through the night as she is fed on a night-time pump. That one element of our stay was worth the 10 hour drive and ferry journey alone!

That’s without the blended food (it has to be an exact specific consistency), hydrotherapy, welcoming and lovely staff, space and a relaxed vibe, and the exceptional meals we had as a family.

Susan, one of the trustees who run Maison des Landes, also set up pottery for the girls which they loved and a session with the marvellous Penny Byrne who kindly gave them books, including Seymour’s Seaside Picnic, which Tilly likes to read again and again. Reading is one of the girls favourite thing to do. Tilly also mentioned the books and reading session on her eye gaze device showing how much she loved it.

We went to the War Tunnels, really interactive and accessible and supportive.

Jersey Pearl where the girls chose their own pearl. Jersey Zoo to see the flamingos and gorillas and popping down to Healing Waves where Tilly stretched out in their amazing sensory room while on the water bed.

Tilly couldn’t surf because she must be in really warm water, as she is susceptible to pneumonia, but lying on the bed was just lovely and hearing about the work Dom and Max are doing with children and adults with complex needs was inspirational.

Seeing the Island through the eyes of a mum with a child with complex needs rather than a journalist was inspiring. It made me feel proud to know about what an incredible Island Jersey is for people with disabilities that can and do have a profound impact on them and their loved ones. But to see how accessible it is with Maison des Landes as our base and second home, where we planned all our activities, was so special for us.

I can’t wait to tell all the families I know with children with life limiting conditions where they can come, so close to home.

The most vital part of Tilly’s equipment is probably her feeding pump that she is fed through overnight. That and her tummy button where the feeding extension tube goes.

So when I left her feeding pump on the ferry, Susan went and picked it up from Harbours for us, which along with organising the lovely activities, were kind thoughtful things to do.

Epitomising the values of the hotel, which I felt were inclusion, accessibility, empathy, kindness, and compassion. That was our experience.

And when I then accidentally snapped Tilly’s extension tube in her tummy button, a big emergency that has never happened before, we raced to Jersey Hospital.

To say Robin Ward were exceptional, replacing the tummy button with so much compassionate carefulness, it makes me want to cry thinking about it.

Because for us it was a major unknown emergency, but for them they took it in their stride, and supported us all and fixed it straight away.

I think that is a vital thing for people to know, when you have a child or adult with complex needs, you feel vulnerable and scared away from home. So to know you have a brilliant medical facility just minutes away really helps if disaster strikes.

From DFDS, to the activities, to the support we received from everyone we interacted with, we were humbled and delighted. Maison des Landes is an exceptional facility in a beautiful place, offering life changing holidays for families like ours.

Giving Tilly and her sister, and myself and Rob, a family holiday.

Something we will never take for granted. We will definitely be back.

Going.On.Holiday will now have the same meaning for us that I am sure it has for families who don’t have a child with a life limiting condition.

A place to go to have fun, create memories, and put the everyday responsibilities to one side.