Hi, I’m Bex and mum to Jackson who is almost three and has complex needs due to an undiagnosed genetic/neurological condition. We recently attended the SWAN UK Blair Drummond Safari Park trip, which was a fantastic day for our whole family. We also have two other children who have autism so knowing we were attending a venue that would be suitable for children with additional needs made the day wonderful for everyone. It was a great opportunity to just enjoy some family time, away from the stresses of everyday life that having a child with an undiagnosed condition brings.
We met other swan families while we were at the park and had the chance to sit down with another family for a while. It meant a lot to know we were surrounded by families who understood one another’s circumstances. It often feels very lonely so having this opportunity to come together with others was needed.
It can be difficult to enjoy days out with an undiagnosed child, such as finding somewhere to tube feed, somewhere to change with enough space and wheelchair friendly walkways. This venue suited all of those needs, we especially liked that Blair Drummond Safari Park has a changing place facility so we could comfortably and safely move Jackson from his chair and get him changed.
Having an undiagnosed child impacts everyone in the family, and it can make doing normal fun activities like this much harder with the amount of planning and packing involved to make sure Jackson has all the equipment, medication and feed to be safe and happy for the day.
After our trip it felt really nice to have met other families, to have had some quality family time and most importantly for our little one to have a brilliant day. He especially liked the dinosaur attraction!
We have found the SWAN UK Facebook support groups to be such a good source of help, advice and support since we joined. Knowing we are not alone in our struggles is sometimes just the reassurance you need to keep going, and that is exactly what SWAN UK brings to our family.