"The support has been absolutely phenomenal. And it's not just what they've provided initially. It's the knock-on effect from that, as well.”
Now thirteen years old, Lloyld is thriving in a new environment, where he is a part of the local community and helps run a shop selling things made from the plants he and his mum grow in the garden. Vanessa shares her story here.
“Our son had meningitis and septicaemia as a baby and due to some after-effects, he found school very difficult. At the time we didn't know what was going on, so we couldn't help the teachers to help him because we were just as confused as they were.
“Year 1 seemed to be really difficult for him and he was badly bullied.
“Our doctor suggested we homeschool Lloyld for a while but because of his experience at school he had such bad anxiety that he would throw up and he went nonverbal for quite some time.
“It was just horrific. So, we decided to move from the busy area where we were living because we felt like Lloyld was overwhelmed and constantly in fight or flight. We started to look for somewhere to move and we ended up where we are now, which is in the middle of the country, six miles from the nearest town.
Time to Decompress
“As soon as we came to view the house Lloyld ran out into the garden and sat in the far corner, just staring out at the view. He hadn't spoken all the way because he was very nervous but he walked up to us while we were speaking to the previous owner of the house and said, “I'd like to live here.”
“We saw him look so relaxed and thought this was what he needed. Some peace and time to decompress and unwind.
“From there we decided that I would home-educate Lloyld. But he wouldn’t join any groups or socialise with other children. We tried our best, but he was petrified and really didn’t want to go.
“The doctor said that it sounded like he was agoraphobic and to let him unwind. The best I could do was to always make sure he had fresh air and exercise, so we'd go for a walk in the countryside, and we visit the sheep and the cows, and we have our own chickens.
Community Support
“We had support from a Meningitis Now Community Support Officer who was so helpful. I had given up my full-time job which, obviously for me, as the parent, was very lonely and quite isolating at times and having that support was just amazing.
“I had been so lost. I used to be an additional needs teacher, but it’s so different when your own child is going through something and it was something I didn’t understand. It wasn’t just how Lloyld was presenting with these symptoms and behaviours, it was how other people were reacting to that which I didn’t expect.
“Some people, including family, friends and his school, acted in a really strange way.
“As a result of meningitis Lloylld has an acquired brain injury (ABI). Acquired brain injury and the behaviours that you get as a result of meningitis can be so hard for people to understand because it's not like a broken arm, they can't physically see it. It’s all cognitive and developmental.
Vital support
“The Community Support Officer really stepped in and even though we only met twice in real life, she called regularly. She was so supportive and always told me to go at Lloyld's pace and don't worry about any of the peer pressure that I was getting. And that's just that's what we did.
“It was really nice because no one else seemed to understand to the level she did. Every time I spoke to her, it reaffirmed to me that I was doing the right things to help him.
“Meningitis Now really have been the only support we've had. So, it's been really, really vital to us.
“I also found support by attending one of Meningitis Now’s online Keep Connected events with some other mums who had children with ABI’s as a result of meningitis. It was really helpful and reassuring to hear the experience of other mums to children who have had meningitis.
Felt proud
“After some time out of school Lloyld became open to start learning things. And because of the nature around us, I started teaching him the names of plants and herbs and we started learning how to forage. He learned about the seasons and trees and, anything that I could teach him would help him with writing, literacy or other subjects.
“And he absolutely loved it. So from there, we started making infused oils with herbs that we were finding and cooking with wild garlic and whatever seasonal things we could find.
“I just had to find whatever education was around us. Lloyld was learning how to grow plants from seed, so we started growing flowers and vegetables and made teas and oils from plants he had grown. It really gave him confidence because he realised that he could create something and felt proud of himself.
Setting up shop
“Then we started making up boxes with all the things that he had been growing and taking them to the older people in the village. This was great during lockdown because we could just leave them on people's doorsteps, and they would sometimes leave us out some homemade cakes or bread or apples. It was so lovely.
“We also began making soaps which we gave as presents but people kept asking for more so we started an Etsy shop. And of course that was an amazing business studies idea for Lloyld.
“As we came out of lockdown Lloyld started to miss stocking up the boxes and seeing people so we took a little position in town where they have lots of local crafters selling their produce. We put the soaps in there and then Lloyld and I would work a day in the shop.
“Then we found a shop in town that was quite small so the rent was really reasonable.
He’s come a long way
“It’s been an amazing journey over the last six years and it's really, really brought him out of the shell, from the little boy that moved here, that wouldn't speak.
“The after-effects of meningitis are all still there, but the biggest turn around is the fact that he can now tell me how he feels.
“And he didn't know how to express that in the beginning. So he has come a long way.
“He was even the youngest person in our area to take the national Beekeepers course and now is a Beekeeper and now has his own bees.
Rebuilding Futures Fund
“Meningitis Now also provided us with some financial support through the Rebuilding Futures Fund. At the beginning of our journey we applied to the fund for a polytunnel which allowed Lloylld to learn about plants and gardening and what started giving him confidence.
“The Rebuilding Futures Fund also provided us with funding towards twelve sessions of play therapy. Every Friday we brought Lloyld for an hour of play therapy with the most amazing lady. Those sessions were also the only time my husband and I would have an hour to ourselves, and we'd go for a coffee and it was like a breath of fresh air.
“The play therapist really brought him out of his shell and gave me lots of advice on how I can continue to help Lloyld. And if we didn't have that funding from Meningitis Now I never would have had that support.
Changed our lives
“The Rebuilding Futures Fund also supported ten driving lessons so that I didn’t have to rely on my husband to drive me and Lloyld places. The lessons gave me so much confidence and I have since learned in an automatic car which I have found much easier. Within two lessons it felt as if I could actually do this.
“This has also helped my husband, who, due to a recent injury, sometimes can't drive for an hour without feeling uncomfortable. So the lessons have had such a knock-on effect in how they’ve helped our family. It's absolutely amazing.
“I really hope that parents can read this and have hope, to keep going and to believe in themselves, because I think as parents, we need to follow our own instincts. We know what's best for our children.
“Meningitis Now has literally changed our lives and maybe saved our lives in some ways.
“The support has been absolutely phenomenal. And it's not just what they've provided initially. It's the knock-on effect from that, as well, it's created connections for us to find other avenues of support too.”
If you have been impacted by meningitis and are looking for support you can contact our nurse-led Helpline by phone on 0808 80 10 388 or email helpline@meningitisnow.org.
