Nicola lives in Lanarkshire with her nineteen-year-old daughter Libby, thirteen-year-old John and their grandmother. Libby has a diagnosis of autism, learning and behavioural difficulties, and partial chromosome deletion disorder.
Family life with Libby
Nicola recalls, “Libby was diagnosed with autism at the age of five. When she was 12, Libby was then diagnosed with learning and behavioural difficulties. A couple of years later, she had some blood tests done which discovered that she was missing a part of a chromosome. This led to a diagnosis of partial chromosome deletion disorder. Throughout her life, Libby has always been in special education. She’s now at specialist college which she attends to study life skills.”
“Generally speaking, Libby is a happy wee soul who loves to sing. People are often shocked that my daughter has autism since it’s rare in girls and she gives good eye contact, which isn’t the usual stereotype that society has for autism.”
“Changes to routine can be stressful for Libby. We have to make sure that we prepare Libby as much as possible for new situations. If we go out somewhere then I have to let her know in advance and we use calendars so she can visually see the plan for the days ahead. Essentially, we try to make sure things are the same as much as possible for as long as possible. If she becomes overwhelmed and has a meltdown, then timeout and sensory rooms work really well to calm her down.”
Nicola says, “I have to make sure that Libby’s food is on time and that I’m able to support her with washing, dressing, and hygiene. Also, when we’re out and about, I always have to keep a watchful eye on her. I wouldn’t be able to send her down to the local shop unsupervised, as I would be able to do with my younger son John without a problem.”
“I don’t get much respite from my caring responsibilities. It’s only when Libby is at college or out with her support worker that I get some time to myself. Additionally, looking after Libby can be difficult for her brother John, since a lot of my attention is focused on her.”
Take a Break Scotland
The Take a Break Scotland scheme, which is administered by Family Fund, has supported Nicola on several occasions by providing a break away.
Nicola says, “We’ve received three Take a Break Scotland grants over the years and we’ve used all of them to visit Haven Seton Sands Holiday Park. Libby absolutely loves Haven! It’s her favourite place in the entire world. The staff are amazing with her. We enjoy swimming and walking on the beach.”
“Even though Libby was with me, it still felt relaxing and a break for me away from day-to-day life. We often plan our trip to coincide with my sister’s family so that we all get to spend time together. If I need some time to myself then my sister will be able to look after Libby.”
“Family Fund and the Take a Break Scotland scheme is an amazing service! I tell everyone about it, including social workers. It’s been a bit of a lifesaver! It’s great to have a break away and not have to worry about the financial burden.”
