Josh (27) has profound, multiple disabilities and Charlotte (20) Rett Syndrome, a rare genetic disorder that affects brain development. Josh has previously received home learning support, educational advice from KIDS and attended KIDS summer holiday play schemes. Their mum Sue, who is retiring after 20+ years working for KIDS, reveals why quality time is important at Christmas and the challenges that Josh and Charlotte face during the holidays.  

Enjoying the fuss and attention with a big smile

As a family we love Christmas and spending time together.  Josh and Charlotte don’t really have an understanding of time so we can’t really build them up to the experience but they do enjoy the fuss and attention giving to them on the day.  Josh has profound and multiple disabilities including cerebral palsy, severe learning difficulties, epilepsy and is visually impaired.  He is non-verbal and unable to sit or walk.  When he was little he was able to eat Christmas dinner but it all had to be blended up for him.  As he has grown older he can no longer digest any food so has all his nutrients directly through a central line to his veins.  Despite all his difficulties Josh always has a big smile on his face and loves the Christmas lights, noisy toys and the love of his family.

A love of DVD's and chocolate

Charlotte has Rett Syndrome and she is a happy smiley young lady.  She is lucky to be able to walk and has some single words. When asked what she would like for Christmas the answer is always ‘chocolate!’  Unlike Josh, Charlotte loves her food and will demolish anything. That hasn’t always been the case though.  As a little girl she went through phases of what she would and wouldn’t eat. During the cereal phase all she would have for Christmas lunch was Cheerio’s (other breakfast cereals are available). Charlotte didn’t play with toys at all as a child so buying presents was always a bit of a struggle. Her favourite things were DVDs and books although she much preferred receiving a DVD she already had and was reluctant to accept anything new. The best Christmas was when Charlotte got her first IPad – she took to it straight away and absolutely loved it. We downloaded her favourite DVDs (currently Lion King, Shrek and Mr Tumble) together with some interactive apps. It has never left her side since and we were actually excited when her old one broke just before Christmas so we could get a new one!

Juggling Christmas duties and quality time

One of the challenges and joys having two disabled children at Christmas is that all the family have always come to me for lunch as it’s easier to meet the children’s needs at my house. The challenge is looking after everyone, getting the dinner to the table on time and making sure the children get a bit of quality time too. Josh and Charlotte also have a sister without any additional needs and we always had to make sure she wasn’t left out either. Being the middle child in between a brother and a sister with differing complex needs can’t have been easy for her. She has grown into a lovely young woman who now has twin boys herself.  Christmas in our household has become even busier.

Josh has had many multiple hospital stays during his life and these have become more frequent as he gets older.   He spent his 13th birthday in hospital and narrowly escaped being there Christmas 2015.  

Working at KIDS I meet so many families who are juggling working, caring for their families and unexpected hospital admissions, which can be very traumatic and a constant cause of distress and worry.  Many of the children we support have complex epilepsy, heart and kidney problems, breathing difficulties or require regular surgery.  My wish for this Christmas would be for all our families to be able to enjoy a happy and healthy Christmas at home.