“I’ve been on my own with my son since day one. I always found him hard work, right from the beginning. I thought it was because I was a rubbish parent and just not really cut out for it.
“When Kenzo was five his behaviour really deteriorated. He became verbally and physically abusive. Every single day he was hitting, kicking, spitting, biting, shouting, and screaming under tables at the adults at school.
“This lead to a couple of years of a really terrible time at the school. Weekly meetings; constant exclusions; visits from educational psychologists. The headmaster – along with multiple other professionals – told me I was a bad parent and I’d spoilt him, that it was all my fault.
I believed them – they were people who supposedly
knew what they were talking about.”
This, along with a very stressful full-time job with its own problems, and the anxiety and depression Sophie has dealt with since her teens, lead to what she now considers a breakdown.
“I couldn’t cope. I reached that point where – and I’m saying this as a proud person – I was just asking everyone and anyone for help. And once I took that step it was like the floodgates opened. Once I had
made that change from being private and proud and ‘coping’, to realising that I just wasn’t, I recognised that it’s more important to get help than keep struggling on.”
Sophie contacted the Family Information Service (now SEND Partnership) and it was the first time a professional suggested to her that Kenzo’s problems might be rooted in something more than bad
behaviour and poor parenting.
“Through a long process of self-referrals and persistence, I finally got my son diagnosed with Autism Spectrum Disorder with a profile of Pathological Demand Avoidance. I’ve since had a couple more labels to add to him – but I see that as a positive as it helps me and others understand and manage him.”
It was during this time of reaching out for help that Sophie came across the Carers’ Centre.
“What I really liked is that the support officer came to my home. All my other appointments are always their space, their time — but this was ‘we’ll fit round you’. It was a small thing but it really made a difference. Having to go somewhere and make time for that is just another barrier that stops people getting support.
“My first proper contact with the Centre was at the 2017 Pamper & Picnic day. I really wasn’t sure if I could go. I didn’t know if I would like it, or if I’d feel really awkward not knowing anyone. I decided to pop in for 10 minutes and in the end I think I was one of the last people to leave. I loved it. The people were lovely; the day was
sunny; I took part in lots of activities and got a massage.
“I also met another carer, Fiona, and we have stayed friends ever since.
“Every time I go to the Centre I don’t have a negative thing to say about it. It’s an opportunity to be with other people who get it. You don’t have to talk about your caring because it’s what we all have in common.
“It means to a certain extent you can lift above it for a while and just be you. You can be the person you aren’t for the rest of your life because that’s about making sure someone else is cared for.
“As someone who was – is – very isolated, I really appreciate the opportunity to be me and have someone say, ‘how are you?’ and not just, ‘how’s your son?’”
Sophie also finds it useful that the Centre doesn’t focus on specific conditions or disabilities. “I could find help – although with difficulty – to diagnose my son; understand his condition; find a school for him. I could access mental health support for myself, to a certain degree.
“What I couldn’t find was something that looked at us as a struggling family unit. His autism is difficult to deal with. My mental health issues are difficult to deal with. Put them together and it’s a complex mess of difficulties.
“I wanted someone to ask ‘as someone with depression and anxiety, how do you cope with a child who is demanding and doesn’t act in a normal way?’
“What I like about the Carers’ Centre is that you’re not coming here because your partner has dementia or your child has ASD. You’re coming here as someone with a caring responsibility.
“The approach is much more holistic to deliver a service for a broader range of people – for carers. That is very valuable to me.”
Since joining the Carers’ Centre Sophie has got involved with breaks, wellbeing services and is now a member of B&NES Parent Carer Voice (BCPV). This group helps raise awareness of issues faced by parent carers and works with the council to improve provision for children with physical, learning or medical difficulties.