June 1, 2017
In February we held our first London Family Day which was a great success with eight families attending. This was a creative day coordinated by Eastside Educational Trust in Shoreditch. After light refreshments and introductions, the children enthusiastically took part in felt-making in the morning, helped by their equally enthusiastic parents. Consultant plastic surgeon Mr Ruben Kannan attended the event, giving parents an opportunity to ask questions informally while their children were occupied. We know having a health professional attend is a really helpful aspect of our family days. If the child already knows the health professional it can also make them seem less scary seeing them away from the hospital environment.
It was really good to see children gain confidence as the morning went on. Some children who attend our family days now know each other from previous events, they are always very eager to make new friends though and everyone is made to feel welcome. We also invite some registered volunteers who were born with facial palsy or experienced it in childhood to attend these events. Children and parents can see that adults who grew up with the condition are leading happy and fulfilling lives. Siblings are always welcome because when a child has facial palsy this can impact everyone in the family. We know that siblings can sometimes be bullied about their brother or sister’s facial palsy, so we are growing their support network as well.
Some people travel long distances as we can only normally put these days on twice per year as we have limited funds and operate with a very small core team. One family travelled over 200 miles to attend this event. We try to rotate events around the country. We provide a light lunch rather than asking people to bring it with them because some people have to leave home very early and some travel the night before. By providing food ourselves we can also be sure special dietary requirements are taken into account and avoid issues with nut allergies for example.
It makes the phrase ‘facial palsy’ a less frightening thing to talk about.
Lunch time is another opportunity for children and parents to chat. We ensure there are activities for children to take part in during lunch if they wish so they don’t get bored waiting for people to finish.
In the afternoon the children made shadow puppets, the theme was sea-life. To begin the children sketched different sea creatures onto black card and Eastside’s workshop leader showed them how to cut out their creatures in the best way to create shadow puppets. Other toys were made available for children not old enough to take part so everyone was happy.
Children and parents were then put into groups and asked to create a story about the shadow puppets they had made. This was a really good exercise because some of the children who had been very quiet and shy earlier in the day suddenly became much more animated and everyone wanted to contribute. After an afternoon tea-break each group put on a mini show for everyone else, acting out their stories with the shadow puppets they had made. We saw crabs, seahorses, fish and other sea-life come to life as the children confidently shared each story. Parents also got involved and made the children giggle with some of their funny sea creature voices.
At the end of our family days we always collect anonymous feedback from the children, parents, volunteers and staff. This enables us to address any areas we need to improve on and we can learn what works well.
Many children with facial palsy start to feel self-conscious about their smile from about the age of seven years. It is highly unlikely they will meet another child with facial palsy at school and in the local community because the condition is so rare in children. Facial Palsy UK Family Days offer a safe environment where children with facial palsy can meet others with the same condition, the aim is to reduce feelings of isolation and to encourage children to smile and laugh and not worry about their facial palsy. We normalise the condition as much as possible so that children understand facial palsy does not define them. Seeing others with facial palsy helps children understand that people soon see past the facial difference and look at the whole person. This isn’t very easy to do if you never meet another person with this condition, hence our family days are so important.
We are very grateful to the Barbara Ward Children’s Foundation for funding this event enabling it to go ahead. We try to organise two family days per year but are dependent on funds and volunteers. It costs on average £1,500 to put on these events.
If you would like to donate to our next family day, please follow this link:
News Categories: Family Days /
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