Why We Do It : A Story From Henshaws
Karina is 30 years of age and has Rett Syndrome, a rare neurological condition which affects the development of the brain. She is unable to talk, has a gastronomy tube to help with feeding and has used a wheelchair all her life.
Our first experience with Henshaws was when Karina became a student at Henshaws Specialist College. This transformed Karina’s life. Due to the level and continuity of care she excelled at everything. She had a busy schedule that was based around her which she enjoyed. As a result she slept better, ate better, put on weight and was alert and happy.
Her wellbeing improved so much that she could maintain a healthy weight through eating normally and we were able to stop using the gastronomy tube for feeding. Intensive physiotherapy enabled Karina to build muscle and she was able to stand out of her wheelchair and walk with only one person to support her.
Unfortunately, after graduating and without the same level of care, Karina’s condition deteriorated rapidly. We tried a number of options within our local area in and around York but there was nowhere that could fully meet Karina’s needs and over time she lost the ability to walk, didn’t sleep well and reverted back to being fed through the gastronomy tube. Karina became quiet and withdrawn, she was unhappy and so was I.
So again we looked at what Henshaws could offer and after having a good look around, in April 2017 we started to access some of the workshops at the Arts & Crafts Centre in Knaresborough. Karina was able to try a few workshops out to see which groups she enjoyed the most and now spends three days a week here.
The biggest change I have seen has been through the multisensory workshop. Loud music would cause Karina to get distressed so we’ve never been able to enjoy music at home. Within just a few weeks Karina, with the support of the workshop leader and others in the group, is now a massive music fan. She chills in the darkened room with the music playing with a big smile on her face.
I was really concerned when we were approaching Christmas as up until now all Christmas songs would upset Karina and cause her to get upset and scream out loud. This meant no shopping trips anytime around the Christmas season as the supermarkets would be playing carols all the time. But I needn’t have worried, when the workshop session began and the Christmas carols started I could see Karina start to have a wobble – but then all the Art Makers began singing, and her friend Samuel took hold of her hand – and for the first time in her life Karina wasn’t upset by the Christmas music and all was well.
It’s amazing and again the difference made by Henshaws is unbelievable. Karina is starting to sleep better, eat better (we have been able to dramatically reduce the level of tube feeding) and is visibly more happy and content.
Karina needs to be busy; she has a very active mind. Although she needs support here at the Arts & Crafts Centre she is treated as an adult and is expected to be part of the team. Her fellow Art Makers are an amazing group of friendly, accepting and caring people. She has settled in so well, made lots of friends, and grown so much in confidence and, I have to admit, she has grown up – I now see her as an adult too.
Karina has also started to know landmarks on the drive to the Arts & Crafts Centre – she starts to scream and laugh with excitement when she knows we are nearly here – but this is great as it means I know she is happy.
Although Karina has complex needs she can do things and she is progressing. Her concentration has improved and she actively participates in the workshops. All she needs is the right support and the right environment and the Arts & Crafts Centre provides it all. Our family and friends all comment on the change they have seen in Karina – many of them can’t believe the difference it has made. As a result of coming here our home life has also been able to change for the better. Family life had been very difficult and looking after Karina has started to affect my own health. Basically, we were all exhausted and needed help. Our lives have now turned around.
With the support of staff at Henshaws, I’m also feeling stronger and have changed my approach to Karina too. Karina is an adult not a child and this is now being reflected in how we live. Gone are the Tweenies and Teletubbies and in are Ed Sheeran and Coldplay – Karina and I now love listening to music together and she enjoys choosing her favourite songs.
Henshaws has been fantastic, not just for Karina but for us as a family.
If you would like to get involved or help in any way, please get in touch.
Gemma Young - Senior Philanthropy Manager
01423 541888 | Gemma.Young@henshaws.org.uk
