‘I’d put on my armour and march out there – nobody in the system was asking how I was’
It took a TSA T-shirt worn by a participant at a fun run to prompt TSC parent Carolyn Bailey to finally reach out for help.
At 47, she had spent the past 18 years battling the NHS, the education system and social services alone - bar for the support of her husband Paul, daughter Holly, 27, and a handful of close friends - on behalf of her teenage son Charlie, who was diagnosed with TSC as a baby.
‘He was fine until one morning when he was 8 months old,’ says Carolyn. ‘He was rolling his eyes and shrugging his shoulders. I took him to the GP who said there was something wrong with his brain. It was terrifying.’
Baby Charlie was rushed to hospital for tests. ‘The hospital did tell us about the TSA after Charlie was diagnosed with TSC,’ says Carolyn. ‘And it might sound stupid to some people, but at that point I was too scared to contact the TSA, let alone look at the website. It was a kind of denial. I wanted to bury my head in the sand - I just didn’t want to know what could be.’
So strong was that initial instinct for denial that when she, David (Charlie’s father), Holly, then aged 10, and baby Charlie left the hospital that afternoon ‘for a few minutes David and I seriously contemplated ending it all there and then. I call it our ‘Thelma and Louise’ moment. All we could see was a really horrible future for us all.’
That feeling, however, passed within minutes, and years of battling with health, social services and the education system began which Carolyn now admits has taken every scrap of mental strength she has.
‘When Charlie was at primary school things were Ok, and he got some support once we got him statemented, although that in itself was a battle,’ she says.
‘But secondary school was a different story altogether and particularly when he got into his teens. Some days Charlie would just wrap himself up in his duvet and tell us that all he wanted to do was to cut the tumour out from his own head. And when he was 14, just at the time that boys are starting to notice girls, he’d be on the receiving end of such cruel taunts from the other kids about the rash on his face. Then some of the boys would just string him along about girls being interested in him - it was awful. Then we had problems when we found out that he’d been receiving texts from someone much older than him. We had to get the police involved at that point. And he’d spend hours and hours and hours online playing games. It was so hard to know where to draw the line between me recognising him as a young man and respecting his right to privacy, but at the same time, needing to make sure that he was safe.
‘Tertiary college was disastrous. They just dumped Charlie on course after course that he couldn’t get on with and just didn’t seem to be able to recognise that they were dealing with a young man with disabilities.’
During the past two years Carolyn has seen Charlie, now 18, suffer such mental distress at times that he has spoken of taking his own life.
‘It has been absolutely heartbreaking,’ she says. ‘So in desperation I turned to the National Autistic Society,’ she says, ‘because at that time, whatever we did, we did not seem to know how to really help Charlie to deal with his feelings. I bought two of their books – Autism: Supporting Your Teenager, and, Autism: Understanding Behaviour – and I have to say they totally changed how we approached Charlie. He needs quiet, lots of eye contact, and headphones help so that he can control what he hears.’
And it wasn’t just Charlie who was finding it very difficult to cope at times.
’‘I was in my own ‘woman cage’,’ says Carolyn. ‘Until now I have always tried to avoid the public side of TSC. Instead of reaching out for help when I should have done, ‘I’m fine’, is what I would say to anyone who asked. I have a few supportive friends without whom I would have gone under, there’s no doubt about that. And Lincolnshire Parents and Carers Forum – well, these guys saved my life, there’s no doubt about that. But I was essentially battling the system for Charlie on my own. Now I wonder why I did that.’
Then a purple TSA T-shirt being worn at the Lincolnshire 10k in June of this year changed all that.
‘I saw this woman wearing a TSA T-shirt, so I tapped her on the shoulder and asked her if it was anything to do with TSC. We got talking,’ says Carolyn, ‘and it was amazing. At last I had found someone else with a child with TSC. She then told me about the TSA Facebook page, and the TSC Mums and Dads Facebook group, and that was it. I liked the page, joined the group, and WOW! I’ve not looked back and now here I am, being interviewed for SCAN magazine.’
Carolyn describes her way of coping as ‘I’d put on my armour and march out there’ and to a certain extent she plans to continue with this. ‘Nobody in the system was asking how I was. You just can’t go under. It’s just not possible,’ she says.
‘But now I have found others in a similar position, and that is incredible,’ she says. ‘Being able to hear what others and going through, and share what I have faced, is liberating.’
And as for Charlie. The family has upped sticks and moved 140 miles West from Lincolnshire to Bolton, where Charlie is receiving specialist treatment at the Christie NHS Foundation Trust, hoping to gain a place at Rumsworth Special School, and slowly, feeling better about himself, partly thanks to Carolyn’s new-found knowledge about how to support autistic teenagers.
‘We’re now in the position where we are looking for something for Charlie to do. He’s a young man with things to offer – but at the moment, he has nothing to do all day and that’s not good for his mental wellbeing at all.
‘It’s a battle and it’s never ending,’ says Carolyn. ’I’ve learned so much. I now know about Healthwatch (consumer champion for health and social care), and I know to ask for a yearly carer’s assessment. I know about the TSA and TSC. I know that things can change, they can get better, and that some professionals and some services are way better than others.
‘But I am still wary. I’ve been let down so many times before. I don’t want to be let down again. And will I get the help I need?’