Kelly’s story

Kelly’s story

Background

Kelly is 33 years old and lives in Hamilton with her three daughters aged three, five and 14. Kelly explains that her youngest daughter, Hailie, “has complex needs, but the specifics change every time she is assessed. She has sleep disorders, behavioural issues, respiratory disorders, and problems with her left leg as it goes inwards. Additionally, Hailie also has problems with her speech and communication, and a lot of difficulty playing with other children.”

Family life

Kelly is Hailie’s main carer and doesn’t get respite. “Hailie is now three and a half, she became unwell when she was six months old, I haven’t had a break since. She has a severe sleep disorder and hardly sleeps at all. Last year, because of covid, she couldn’t go anywhere because she’s high risk. That’s why even just a little break makes all the difference.”

“The pandemic took a toll on Hailie; she’s become more anxious. We received no help from the council, and I later found out that we should’ve done. Hailie was housebound for the first four months, and trying to get shopping was a nightmare. We’ve only just found out now that we were eligible for food parcels and should’ve been getting those.”

“When Hailie becomes upset, she gets very frustrated and lashes out because she can’t communicate. Hailie is very immature with her speech, and though she can say some words they can be difficult to understand. When she gets angry she finds it easier to act rather than talk. However, Hailie does use picture cards and her oldest sister has been trying to teach her Makaton.”

“Hailie is quite determined. She will go out of her way to show people that she can do what people think she can’t. The doctors said she might not be able to walk, but now she can run. Her occupational therapist has been helping with her ability to walk and run, but she gets so focused on that she doesn’t realise there’s traffic. She doesn’t have any sense of danger. As a result Hailie has to be in a specialist buggy most of the time.”

“Hailie’s still on soft food because she can’t swallow well and I need to help her with feeding. Even though she’s on a soft diet, she can eat for Britain!”

“She started nursery in August, and has either 1:1 or 1:3 teaching. Hailie really likes her teacher and she enjoys it, but she doesn’t try to interact with other children. When she goes to nursery she’ll play in the corner by herself. Her sisters would go up to somebody and ask to play, but Hailie won’t do that, she just hides in a corner. She’s quite happy doing that though.”

Hailie’s condition also affects her sisters. “Hailie’s condition has a big impact on their lives because we have to decide what we can and can’t do based on Hailie. My eldest daughter finds it the hardest because she’s in secondary school and I don’t have time to help her with her work. She’s registered as a young carer because she helps me with Hailie. She doesn’t have to, but she tries. She’s lost a bit of her life being a carer.”

“Hailie’s eldest sister has no health problems, so having Hailie was a real learning curve. But now I’ve been hit further as her five year old sister might have Attention Deficit Hyperactive Disorder (ADHD). Trying to balance the children is not easy for me.”

How we helped

Kelly says “I found out about Take a Break through a friend and their support worker. It was a brilliant process, everyone was very helpful. The man that assessed Hailie was very patient with her, even though she was flying around the room. It was very easy to do and anything we needed help with, we just asked about.”

“We went down to Craig Tara on a Haven break. It was easy to get to and travelling wasn’t too busy. Hailie doesn’t travel very well and she doesn’t like staying in a car seat so it was lovely to be able to choose somewhere close but still felt like we had a break. It was nice, I took Hailie down to the beach because she likes sand and the caravan was only a short walk from it.”

How it made a difference

“Everyone benefitted from it, it was really good. My two older daughters were able to do stuff together, like going to the amusements. That’s something that Hailie wouldn’t have wanted to do, so I’m glad I could let them go.”

“We loved it and it was just at the right time as well. I was climbing the walls during lockdown. Being in an enclosed space was havoc, so it was nice to have that break for everyone.”