Sara Ryan says the protective instinct in any mum of a disabled child is always on overdrive.
“You’re so aware that there’s different expectations attached to them and you’re forever fighting that,” she says.
Sara’s fight for her son Connor Sparrowhawk started when he was as young as two-years-old, after a paediatrician wrote him off as a child she’d “probably need respite from in the future”. But it’s also one she has had to continue for more than four years since his untimely death at a specialist NHS learning disability unit.
On 4 July 2013, Connor was left unsupervised in the bath at the Slade House unit, run by Southern Health Trust. He suffered an epileptic fit and drowned. He was 18.
At the time the trust said Connor died of “natural causes”. But an independent investigation found his death was preventable, and an inquest ruled neglect had contributed to his death. It was only last year that the organisation accepted full responsibility, and last month it pleaded guilty to breaching health and safety laws.
Sara recently published a memoir, Justice for Laughing Boy, which documents the family’s fight for justice, but also “the cool kid” Connor was. A boy who loved his family and their dog Chunky Stan, London buses, heavy haulage trucks, human rights, sitting in the sunshine, and reading Horrible Histories.
“I wanted to write the book to present a picture of Connor as the boy he was, rather than the dead, disabled teenager he is flagged up as in local media,” Sara says.
“I also just wanted a record of what an enormous part of our family he was.”
‘It was always Mum’
Sara says in their family, Connor was everyone’s favourite, they all loved him and wanted to hang out with him, and he was an “absolute delight” to be the mother of.
“He was so cute as a baby,” she says. “He was one of those babies you could just eat, with the chubbiest little face and a laugh that was just hilarious.
“It was only when he got diagnosed [with autism] that the whole ‘system’ thing kicked in, the statementing, special schools, and endless appointments with people who don’t do anything. At home, he was just Connor.”
She recounts the times in those early years where Connor would be in pieces when she tried to reverse the car – “you don’t realise how much you reverse a car until you can’t” – or howling in the supermarket. But between the age of 11 and when he became unwell, Connor was just “so happy, content and lovely to be around”.
For Connor, “it was always Mum”. As he approached 15, Connor instigated ‘just you and me Mum’ birthday trips to London. When the vacancy for the chief of the metropolitan police came up, he told Sara: ‘Mum, you’ve got to apply for it’.
“Once he realised I was his Mum, which took him a while to work out, he looked to me for everything I think, which makes what happened really difficult,” Sara says.
“When he went downhill, he started to attack me and that was really shocking for all of us. I think that was when we realised he was seriously unwell.”
‘Chilled to the core’
Connor’s decline in health was unexpected and sudden, and he changed so much, Sara says. For three months, the family “limped on”. Sara and her partner Rich alternated working at home, while Connor spent most of his days lying on the floor of the downstairs toilet, with a wrench, fiddling around with the plumbing.
Sara recalls feeling “absolutely fearful” during this time. Fearful that Connor would hurt himself or someone else. Fearful that he would end up in the criminal justice system, where the percentage of learning disabled people is already “awful”.
“There should have been a well-trained team, used to dealing with this, who would come round and hang out with Connor, figure out what the problem was, make sure he wasn’t a danger to himself or anyone else, and work with him and us,” she says.
But there wasn’t. And when Sara’s friend told her about the unit, just down the road, with specialist staff and almost one-to-one care, she felt this was the only option.
“I remember being on the bus on the way home, I’d written the number down, and I was just absolutely chilled to the core that I was going to start this process. I didn’t stop shaking for ages… you’re about to admit your child into a unit. I had no idea at that point what was going to kick in, I just knew it was such an awful thing to do.”
Sara didn’t know at this point that the unit wouldn’t be anything like it had been described. She remembers it now as a place where she had to ask permission to visit her son, how it always took a long time for the door to be opened, with no reason why, and where sometimes you would be greeted with silence, not a hello.
“Yes, [I felt shut out]. They said that because Connor was 18 it was his choice what he did, and they made out like I was ‘just interfering’ basically.
“I was absolutely petrified by that. I was really worried that I was going to ring up to visit him one day, and they’d say oh he’s decided to go and live in a shared flat in Didcot…when actually he was a schoolboy who was part of a family.”
She says it was heartbreaking to see Connor drugged in his early days in the unit, and turning up to find him asleep, with a plate of cold food on his bedside. He chose not to eat in there, and they let him, she says. His BMI dropped to 15.
“I was saying to them, you can’t just let someone not eat. This whole choice agenda and the way it is manipulated by health and social care, I find that really alarming.”
When Sara visited Connor in the unit, they did what they always did. They used to chat about all the things she knew he liked, like cows, and trucks, and make lists for his haulage company, how many tyres he’d need, and that he’d need a yard.
“He didn’t say this to me ever, but when we got the notes it was documented in loads of places that he was saying ‘My mum is going to come and take me home’.
“When I got those notes back two or three weeks after he died, god it was almost like the tears were just…I wasn’t even crying down. It was terrible, so distressing.”
In the weeks, months and years that have followed Connor’s death, Sara hasn’t had what she refers to as a “peaceful grief”. She remembers thinking at first that at least it was an NHS service, so everything would be properly dealt with.
Sara was quickly warned by a human rights barrister, who had been a reader of her blog ‘mydaftlife’, that Connor’s death may not be investigated properly. Then a solicitor was saying, “get the records, check the postmortem”.
“Everything they said might happen, happened. I was absolutely reeling. So reeling from his death, but I just couldn’t believe these things wouldn’t be done properly.”
The battle for justice that followed is something that Sara describes as a “terrible unpacking” of the events that led to Connor’s death, where the family have found out “more and more the level of how bad things were.” To make matters worse, Sara has also found herself being blamed by health and social care services.
She writes in the book that pinning the blame on ‘Mum’, rather than openly trying to establish what went wrong, is something that has “consistently floored” her over the past few years. The book includes examples of the ‘mother-blame’ concept from briefings, staff witness statements, and the records disclosed to the family after Connor’s death.
“For all the blame chucked my way, I’ve got a whole storage cupboard of guilt about what’s happened, obviously he died, I shouldn’t have taken him there, and all the rest of it.
“He shouldn’t have been admitted…I was like a block of ice, I don’t think I stopped shaking for about eight days after admitting him. That’s why this mother-blame thing is really painful as well…it’s not like we took him there on a whim.”
‘He got that from me’
Today, Sara feels that with the support of so many different people, her family has “achieved the unachievable” in the fight for justice for Connor. She says an awful lot of people have got in touch to say they are now fighting for inquests, and that she keeps hearing that within health and social care, his death has had an impact.
She adds that it’s really ironic that everything that’s happened since Connor died, is all the stuff he absolutely loved. He loved human rights and the law, he dreamt of owning buses and now there are three that have his name on them, as well as a truck.
“When I was writing the bits in the book about Connor’s strong sense of justice, I was thinking ‘he got that from me, he got that from me’…I was just thinking God, if you were here Connor, you would just bloody love this…
“That really does give me some comfort. He was always so special to us, he was always such an incredible young person, and I feel that’s become known in a way that I never dreamt it would do. We’ve done him proud.”