Dealing with epilepsy, ADHD, and being misunderstood
“Some kids find it hard to connect with her and she has suffered with a lot of bullying. Girls can be cruel to each other at this age.”
Eden, 6, struggles with epilepsy and is often misunderstood, making life even more difficult. Her story is a lesson to everyone to be mindful that you may not be aware of what some people have to deal with.
Life with epilepsy and a form of ADHD isn’t easy for six-year-old Eden of Gore.
Eden was diagnosed when she was four and has since been on twice-daily medication.
“She’s also developed facial tics, which can be difficult for her because she makes expressions she has no control over. She’s been told off for making faces, which is really sad,” her mum Kristy said.
Eden’s seizures are largely managed thanks to her medication but that can present its own problems.
“If she has a breakthrough seizure [one that occurs after a person has controlled their condition with medication], they can last weeks.”
Eden struggles with epilepsy and is often misunderstood, which can make life even more difficult.
“Unfortunately, only people close to her may know this and she can appear disrespectful or ‘naughty’ to some, as she spaces out and exhibits some unusual behaviour,” Eden’s mum said.
School presents its own challenges and, due to her type of ADHD, Eden struggles to maintain focus while working and has found it difficult to fit in.
“Some kids find it hard to connect with her and she has suffered with a lot of bullying. Girls can be cruel to each other at this age.”
Eden has also developed a picking habit, which can leave the skin around her fingers raw, bleeding and sore.
“She doesn’t even realise she’s doing it. She’s given herself a staph infection a few times, so it’s a serious problem.”
Despite her challenges, her school has been brilliant, and Eden is on her way to finding her place among fellow students, Kirsty said.
“One thing that helped her connect with other kids was via the Colouring In Club at lunch. She loves it and she’s made a few friends along the way.
“The best thing is, she wouldn’t have connected with them without it, as they’re a little older, but they share similar struggles at school.”
As a pick-me-up HELL Pizza’s Satan’s Little Helper programme sorted Eden with a few items “to make Eden’s days (and nights) a bit easier”.
She was sent a new nail polish kit, some fidget toys, a weighted plushie and some extra art items for her to use when she’s colouring in.
“The weighted plushie has been a favourite; she takes it everywhere. It has been a good distraction in the car and she’s not picking at her fingers as much because she plays with fur on the plushie and the weight calms her,” her mum said.
“At night, it’s awesome. Her picking can amp up when she’s unsupervised but, having her plushie in bed helps. It also means we can avoid putting her on medication to help her relax at night, so it’s a brilliant outcome for us.”
Kristy said Eden’s fidget toys have been a priceless addition in the classroom because they help keep her focused.
Eden also used her pizza voucher to have a fun family outing and make some cool memories with a trip to Invercargill.
They were grateful of what Satan’s Little Helper has done.
“It might seem like a small thing to give but they’re luxury items for us, as we’re on a strict, single-income budget. I can’t work because I need to be available 24/7 in case she has a seizure.”