SWAN Family Fun Day

Following in the steps of a lovely fellow SWAN Mummy, I thought I would share with you our experience of our first SWAN Family Fun Day. We recieved details back in March. Paul rang to tell me, as I was staying with my parents. The minute he told me I was desperate to go, it sounded amazing; meeting other SWANs and their parents, in a venue built specifically for adults and children with Special needs. I didn’t want my litle family to miss it, so I made Paul send the application form back immediately!

As the time drew nearer I was even more excited, as over the last few months I had made some amazing friends through the group on Face Book. As I have previously mentioned SWAN are my second family. We are there for each other, through the good times and the bad. In our SWAN family we feel safe. Safe in the knowledge we belong and that we are never judged.

SWAN have been an amazing support network for me while Paul was away. I couldn’t wait to meet these SWAN Mummies and Dadddies and give them a ‘proper’ hug rather than a ‘virtual’ one. I couldn’t wait to see them in person and put names to the faces I had seen on my computer. Equally I couldn’t wait to meet their beautiful SWANs (not forgetting their siblings), the reason we all were brought together in the first place.

The morning of the Fun Day arrived and I had butterflies! I was excited. Excited to be meeting just some of the people I felt like I already knew. Excited that Isabella would be going to a place where she could access everything, with little or no help.

We arrived at the venue Thames Valley Adventure Playground http://www.tvap.co.uk/ and put on our name badges and took a walk around it was fabulous. There was a sand pit, water guns, special needs swings, a wheelchair swing, roundabout, a boat, a plane, a train, slides and a castle and these were just some of the things available outdoors. Everything was wheelchair accessible and made ‘safe’ for our SWANs and children like them.

Sadly over the last few weeks Isabella has started to take a serious disliking to all things outside that move or that can make her move. We tried to take her down the slide with Daddy and instantly she became extremely distressed and very upset. I am never phased by these situations, but people staring and giving disapproving looks can be uncomfortable and make me flustered. It was so refreshing, as there were no stares, no looks of disgust, just looks of reassurance that said, ‘It’s okay we understand. We know what it is like.’

That part definately felt good; knowing that we didn’t stick out, that no-one was talking about us, that no one was awkward around us. In fact the complete opposite. We were comfortable around each other and asked each other questions freely. In fact Paul and I spoke to some SWAN parents over lunch and after just a few minutes it became very evident our SWANs were extremely similiar. In fact their SWAN had gone through a phase of not liking going on rides and swings as well. In a strange way it made me feel happy. Not happy that their Daughter had gone through what Isabella is going through, but happy that they completely understood us and they could completely empathise.

Isabella was much happier indoors, as it was much much cooler. Isabella has a huge aversion to natural light and dosen’t cope very well in the heat. Having said that who does? We never have the chance to acclimatise in the UK it’s usually really cold or really hot!

Once inside I saw lots of little scrumptious faces I recognised with their parents. It was a bizzare feeling I really felt like I knew these people and meeting them in person confirmed they were just as lovely and understanding, as I had first thought.

Inbetween lunch and a serious amount of chatting, (not just Mummy surprisingly enough) we managed to squeeze in some fun time with Isabella in the soft play area, Music Room and Sensory Room. She loved them all. She particularly loved playing the drums with Daddy and found it hilarious when Daddy was trying to play the drums like a Rock Star would! The sensory room was a hit, that was probably due to the fact it was very cool, as it was air-conditioned!

Isabella loved having cuddles on the sensory swing watching all the beautiful colourful lights. It was nice to be able to play in a soft area where it wasn’t rammed to the rafters. This meant we could play with Isabella in the ball pool and not worry about other children getting over excited and falling on her. Sadly children don’t know that Isabella cannot move out of the way or dodge a flying ball.

There was also a Magician booked, but due to the blistering heat that had really cranked up by mid afternoon it was just too much for Isabella and Mummy and Daddy! We headed inside and cooled off with a drink and found more familiar faces to chat with. Sadly there was just not enough time to chat to everyone!

The afternoon was rounded off with a group photo of everyone. A excellent momento of the day. The day was truly a huge success and we cannot wait for the next one. I would just like to thank Lauren, SWAN UK, Genetic alliance and all the volunteers for organising it and giving up their Sunday to make it so special for all of us.

So there it is proof in the pudding of how SWAN UK is so important to our family and families like ours. Without SWAN UK and the support they recieve we wouldn’t be able to enjoy days like these and meet families in the same boat. It was most certainly another special day that will sit happily in my memory.


2 thoughts on “SWAN Family Fun Day

  1. Pingback: The first ever SWAN UK Family Funday! | SWAN UK

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