“It’s hard when you’re on your own, and I felt like it was always going to be just me.” Danielle
When I speak to parents of disabled children, there’s one theme that comes up again and again – so much of the time, there’s no one to talk to when things are tough.
Not long ago I met Danielle, who spent years struggling with her six-year-old son Aaron’s challenging behaviour. He was eventually diagnosed with autism, but for a long time nobody could tell her what was wrong.
“I can’t even emphasise how dark it was,” says Danielle.
“I’d go to work and I’d cry, I’d come home and I’d cry, I’d go to bed and I wouldn’t sleep for crying.
“I didn’t want to be here anymore. As awful as it sounds, if it wasn’t for Aaron I wouldn’t be here. I just kept saying to myself: he’s got nobody else.
“It was just an absolutely atrocious time. I wasn’t even leaving the house – I’d take Aaron to school, go to work, come home and we would stay in every night.”
Things changed for Danielle when she got involved in Scope’s Face 2 Face scheme, which matches parents with a trained befriender who has a disabled child, or children, of their own
Danielle’s befriender, Julie, offered unconditional emotional support – and a chance to talk, without fear of judgement, to someone who had been there already.
“It was having somebody for me. When Julie comes round, she doesn’t turn round and say, ‘How’s Aaron doing?’ She says, ‘How are you doing, what’s going on with you?’ I think sometimes you need that,” Danielle says.
Julia, a Face 2 Face Coordinator, says some parents don’t always realise they might need emotional support.
“They’re doing all right, ‘why do they need it?’ It’s seen as a weakness: ‘I’m fine, I can manage’”, she says.
Julia’s 18-year-old daughter is disabled, and she was supported by the scheme herself before becoming a befriender and later, a co-ordinator.
“It (Face 2 Face) really supported me, having that place to go where I could talk about how painful things were, things I couldn’t say to anybody close to me, and that my friends couldn’t possibly understand. I’m mindful of that when I meet families now,” Julia says.
For Danielle, it was the practical as well as emotional support from her befriender which made a difference. From her own experience as a parent, Julie suggested places Danielle and Aaron could go, and services on offer.
“Aaron and I go places now – we’ll go to farms, we’ll go to play centres and things like that, which I would’ve never have done before”, says Danielle.
“I never left the house, I was stuck with Aaron 24 / 7. Now I have a social life, Aaron’s got friends – I’m just a different person.”