Last year we talked to young carer Jessica and her mum Angelika to find out about their everyday life and Jessica’s most recent visit to Honeypot. Angelika has severe epilepsy and has up to 30 seizures a day, ranging from momentary lapses in consciousness to full-blown, life-threatening attacks. We got back in touch with them this week to ask how lockdown was affecting their family – here’s what Angelika told us…
It has been terribly draining trying to keep Jessica busy during lockdown. As an only child, she’s missing all her friends and hasn’t got anyone else to play with at the moment. She loves learning and art, and also wanted to learn sign language so I’ve signed her up for a virtual course which she is really enjoying; but it has been hard work planning and doing lessons and activities with her.
One good thing about the lockdown, though, is that it’s actually brought Jessica and I closer and helped me to understand more about what life is like for her as a young carer.
Although she’s fine at Honeypot and her young carers’ group as she trusts them immensely, she’s so quiet in front of other adults. After talking to a doctor, we have realised that the quietness she has around people is actually very bad anxiety.
It’s horrible to think that she’s been struggling with so much anxiety all this time, but at least now I feel like we can try to help. Her doctor has referred her for therapy that will hopefully be able to start after the lockdown. But it hasn’t always been easy to get that kind of support and understanding.
The thing about having a disabled parent is that the school just doesn’t understand the impact it has for children. Jessica often finds school a difficult environment to be in, for lots of reasons. If she’s having a tough day because of things at home, they don’t really ask about it or offer help. Sometimes when I have a seizure, I’m not able to pick up Jessica from school on time. When I don’t show up, she knows why and she’s able to just go to the after school club – but it’s frustrating because every time that happens I have to pay for the club.
I was struggling a bit before Christmas, and it meant I couldn’t help Jessica with her homework as much as I’d have liked. She was really upset when she didn’t do well on a test in school and I felt guilty that I couldn’t give her the attention she needed. I wish the school understood what my condition means for her.
Jessica loved getting her postcard from Honeypot. Although it’s only a small gesture, it’s a really big thing for a child to get a letter addressed to them. Especially from Honeypot, where she feels extremely safe and always comes back with so many happy memories! She was happy to know she meant a lot to Honeypot and wasn’t lost in the system. Young carers really just need that reassurance of knowing they’re seen.
Next year is going to be a big step up for her going with going into Year 5 and things becoming more academic. In September I’m due a VNS operation which will affect my brain and I’m worried about what that will mean for her starting a new year. But we’re also looking forward to the end of lockdown – Jessica can’t wait to go out for a bike ride with her friends!
I’ve been to Honeypot twice now. I really loved the play area in the forest and making cookies and brownies! After I went to Honeypot I felt kind of happy, kind of sad because it was over. I also got to go to Cadbury World with Honeypot. We wrote our names in chocolate! When we’re allowed to go out I’m looking forward to going cycling or going to the swimming pool with my friend Thomas. And going to Honeypot of course!
Read our original interview with Jessica and Angelika here.