A total break, at a precious moment in childhood
Cynthia and her husband Dave live in Campbeltown in West Scotland, with their two daughters Jessica, aged 11, and Grace, aged 9. Grace has a diagnosis of Down’s syndrome and is also awaiting an assessment for ADHD.
Family life
Cynthia says, “we have two wonderful daughters, Jessica and Grace. Grace has Down’s syndrome and is full of energy and life; she brings a smile to everyone she meets. Like most families, we have our own challenges.
“Health wise, we are lucky that Grace doesn’t have any heart issues, but she has had a few severe bouts of pneumonia and been hospitalised several times, including in the ICU on one occasion. Like all parents we have managing behaviours, personalities and different preferences with the girls, then you have the addition of appointments and sometimes hospital stays which is part of our parent journey.
“Grace’s condition affects her development and independence to go certain tasks. She goes to a mainstream school at this stage. She knows her numbers up to about 20, can write and read maybe 15-20 words by sight. She benefits from daily tasks like feeding for example, she can feed herself but she might make a mess or prefer me to help her with her food.
“We do get some respite on a Saturday morning when she goes to a council SEN group for a few hours, but my husband often works away. So it’s just us three a lot of the time. Grace is often awake at night so Dave and I are surviving on years of broken sleep which you just get used to.
“She’s a really active child, she spins a lot, she can pedal a go kart and she likes playing with her baby.
“We have challenges around behaviour, especially if she’s tired. There are times she just won’t do something if she doesn’t want to, but I know her well and certain phrases will work.”
The Take a Break Grant
The Take a Break scheme, which is administered by Family Fund, gave Cynthia and her family the chance to spend quality time together.
Cynthia says, “We decided to spend the time together as a family and booked a trip for the four of us to Crieff Hydro in October, a beautiful hotel that really caters for families. The journey was long for us (about four hours), and I don’t think anyone slept much the first night! But despite that, we came away with some fantastic memories.
“The hotel had bunk beds in the girls’ room which was exciting, huge outdoor play areas, and activities that the girls could do provided by the hotel for a few hours in the morning, so we could sit with a coffee and be in a little adult bubble every day. That was perfect, just for us to rest in between the children’s time.
“Sometimes we do split them up and Jessica often has to compromise as the big sister, but this was different. They had all this space to themselves and you get that lovely feeling when they’re exploring together. In a sense Grace keeps her sister young as they do a lot of imaginary play. You realise what an amazing young person Jessica is becoming because of her patience and understanding with her sister. She’ll be starting secondary school in August and it felt extra special in that way I suppose.
“Watching the two of them have such a magical time playing together was incredibly special for us as parents.”
