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The Families from the Sleeping Beautyz Trust

We’ve all heard the fairytale about Sleeping Beauty haven’t we?  Well, for those of you who haven’t heard it for a while, Sleeping Beauty was enchanted by a magic spell. When she pricked her finger on the needle of a spinning-wheel she fell asleep for a hundred years.  The spell could only be broken by true love’s kiss.  Of course there was a happy ending when Prince Charming came along on his white horse, chopped through the brambles and bestowed Sleeping Beauty with the magical kiss to wake her.

If only it could be the same for the wonderful children we worked with recently from Sleeping Beautyz Trust.  These children from across the North West all suffer from narcolepsy and cataplexy, which makes them very sleepy all the time and prone to going into a kind of wakened paralysis/trance when faced with certain triggers.  Other side effects include significant loss of the energy and usual drive and motivation you see in young children, together with weight gain because they are much less active than their healthier peers.  All of this combined tends to mean a loss of self-confidence and esteem that is heartbreaking for their devoted families to experience.

We were approached the founder of this new charity, whose own son suffers from narcolepsy and cataplexy.  This lady started the charity in order to raise funds to supply specially adapted seatbelts, give affected children and families days out, weekends away and hopefully holiday homes to go and make some good memories and fun times.  Basically to turn the daily struggle they have with their condition into happier times.    She specifically asked what we could do to help these children rebuild their confidence and self esteem.

After months of planning the workshops finally took place in Whitley Village Hall, Cheshire, on one of the hottest days of the year.  Whilst initially we had 4 families, there was the inevitable last minute change of plan for one family whose son was asked to take part in a musical show.

As an NLP practitioners we always enjoy running workshops for children and we carefully planned a good mix of activities to inspire the children and help them learn whilst having fun.  This time though we were unsure how the children’s medical conditions would affect their ability to participate so we made two decisions: one, that we would ask parents to remain on site during the workshop (more about that later!) and two, that we would also invite some children who did not suffer from narcolepsy and cataplexy to help with pacing the workshop and keep energy levels as high as possible.

Our seven participants, aged between five-and-a-half and 10 years old quite simply, had a ball!  Our little learners crept into the village hall with their parents, perhaps unsure what to expect.  We needn’t have worried though – within minutes of being left in the capable hands of Coralie Hobson and Lynne Turpin there was lots of music, laughter and happy voices coming from the main hall!

The Sleeping Beautyz parents were treated to their own Parents Workshop in another part of the village hall, however after our own introductions curiosity got the better of our concerned parents and our practitioner Lisa Birtles, and we could not resist taking a peep at the kids in action! We were delighted (some might say relieved) to see, hear and feel that they were all joining in and making new friends.

The children and parents learnt all about the NLP communication model and how our brains process information in different ways.  We learnt that not everybody “sees” things in the same way as us and we learnt about feeling and communicating positively.

Everybody learnt that NLP stands for Neuro Linguistic Programming, and they learnt that it can help them to understand what makes them, and the people around them, tick, and how to communicate better with their friends and families.

During the break parents and children chatted informally.  The children enjoyed meeting “other children like them” and the parents found it helpful to share experiences of parenting a child with narcolepsy and cataplexy.  For most of them it was the first time they found someone else who really understood what it was like.

Just one of our children with narcolepsy needed to take a nap after part one – even though the rest of the children made it through to the end.  We are sure there were probably some snoozy children in their parents’ cars on the way home though!

At the end of the Kids and Parents workshops we all came together to listen to a special piece of music “You’re a Superstar” by Love Inc

We all danced together and then it was time to hand out certificates – to both parents and children.  It had been a big step for them all to try something new.

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