Adele’s story

Adele’s story

Background

Adele is 38 years old and lives in Perth with her husband, David, 42, and daughter, Holly who is seven years old. “Holly has an official diagnosis for hypermobility and sensory processing disorder. She also has autistic and ADHD traits which she’s currently going through the formal diagnosis process for at the moment.”

Family life

Adele explains, “Holly has sensory processing disorder. Sometimes she struggles to put clothes on and it can take hours to get her dressed. Also, she will occasionally wear the same clothes for three or four days in a row because of her anxiety and sensory processing issues. Additionally, Holly finds it difficult to eat certain textures because she’s hypersensitive”.

“Holly can be quite sensitive. Her mood changes daily depending on what’s going on. If there’s a change, for example, if I were to get a new bath mat, for Holly it’s like changing the whole bathroom. As a result, life is very structured.”

“I plan our days and print off a two week itinerary during the school holidays so Holly knows what we’re doing each day. The morning and bedtime routine is always the same so that’s predictable for her. If we were to go on holiday then we have tell Holly the route that we’re taking and what we’re going to do each day. When we plan days out we have to make sure that there’s a quiet place for her to go to if she needs it and that there’s food that Holly will eat because she’s quite restrictive. It can occasionally cause arguments because Holly can sometimes take three or four hours to get ready, and sometimes she even struggles to leave the house, usually because she’s hypersensitive due to her sensory processing difficulties.”

“It can be quite difficult when Holly is having a sensory meltdown because I just want to give her a cuddle but she doesn’t want to touch or talk. It’s upsetting to see her getting stressed. She thinks it’s her fault even though it’s not.”

Holly attends a small mainstream school as Adele explains, “School is hit or miss for her since she suffers from anxiety and doesn’t cope well with change. She has an education plan in place which helps and she’s doing a lot better than last year. However once she gets a new teacher and classroom she will find it difficult to adjust.”

“Holly is sociable but her social skills cause arguments with her friends, especially when she needs time out. When children are aged seven and eight they want to make sure that you’re okay, they don’t understand that you might need some time to yourself.”

“When you give Holly instructions you have to stand right in front of her and repeat it nine or ten times, and you can’t tell her it all in one go, you have to break it down into chunks. It can be quite difficult at times.”

Adele says, “Holly is a wee character. She’s a lovely little girl who is really kind, caring and fiercely loyal to her friends and family. She’s very outgoing and likes to be outside, being active is an understatement. Holly loves doing arts and crafts. She’s also sporty, we take her to play tennis and she does swimming and horse riding. Holly is absolutely obsessed with horses.”

But Adele explains how difficult it can be to find time for herself. “I don’t get much respite. Due to my own health issues I have to go to my own appointments. When Holly is at home you can’t do anything around the house because she needs constant attention. Sometimes she will sit and play with her horses for a little bit, but she will still need me to do things. Holly also suffers from separation anxiety so that makes it hard too. If I were to go to the shops by myself then I see that as a break but Holly wouldn’t want me to go and will constantly ask me how long until I’m back and will want to video call.”

“Being a parent to a child with a disability has taught me to just keep going. You don’t get any days off. It’s changed my approach to everything. I’m more laid back compared to other parents and I’ve realised that if something won’t work then that’s okay. It can be stressful keeping up with constant appointments and sometimes you have to battle with professionals. I’ve also realised that people’s judgements don’t matter.”

“Being a parent to a child with a disability has taught me to just keep going. You don’t get any days off. It’s changed my approach to everything. I’m more laid back compared to other parents and I’ve realised that if something won’t work then that’s okay. It can be stressful keeping up with constant appointments and sometimes you have to battle with professionals. I’ve also realised that people’s judgements don’t matter.”

How we helped

Take a Break has provided Adele with a couple of grants. “I’m a bargain hunter so we managed to do a lot of things. Family days out can cost a fortune and sometimes it can go to waste when the child is having a meltdown and you need to leave. It feels like such a waste of money. However, it was good to have the grant money and know it wasn’t coming out of our pocket, so if anything were to happen, we know it wouldn’t be as financially bad for us compared to normal.”

“We used the grant money to go to the cinema when it was quiet in the morning. Taking Holly to the cinema can be difficult at times because it depends on how she’s feeling, and even with ear defenders the noise can be overwhelming for her. We also went to Deep Sea World and ice skating. Additionally, we used the money to pay for horse riding lessons for Holly, and then we put the rest of the money towards the Polar Express experience, where they tell the polar express story on a train with refreshments.”

“The activities were relaxing because usually on these days we’re stressed about whether or not Holly will enjoy it, if she’s going to have a meltdown, or if it’ll be too loud or busy. We do worry about the financial aspect about it so the grant really took the pressure off and allowed us to spend time as a family without the fear of wasting money. I enjoyed all of the activities, especially the ice skating as I used to do speed skating many years ago. Holly also loved it. It’s moments like these where you’re glad to see that she’s enjoying herself.”

“The Take a Break scheme is a lifeline because we don’t always have the money to have many days out and the grant gave us the opportunity to do a lot more together. It has been really great and we’re so thankful. It’s helped us a lot and it takes the pressure off families that might not be able to afford these things or are put off doing certain activities because they’re raising a child with a disability. It definitely helps people to relax a lot more.”