One mother reveals two decades of her lonely struggle against the disabled care system
Posted on 17/04/2018 by
“There’s no support for adults,” Alison White was told, as her son Louis neared his 18th birthday. “There used to be, but it’s all been cut.”
As Alison White sips tea at a café in the shadow of St Paul’s Cathedral, huddling in her green coat against the early spring chill, she looks like any other visitor enjoying an afternoon in London. But this trip marks one of the first occasions in two decades that the 52-year-old has had a day – or even an hour – to herself. Her son, Louis, who has cerebral palsy and learning difficulties after suffering brain damage at birth, has turned 21 and received funding to attend a residential educational college.
He’s in his second term, and Alison White is finally “coming up for air”.“I feel like I’m looking at things I haven’t seen for 20 years,” she says, holding her mug of mint tea. “A bit like I’ve been in some time machine and popped up and things are different.”
Her life of 24-hour care – helping Louis with everything from chewing his food to using the lavatory, stopping him compulsively thwacking his forehead against hard surfaces, managing his severe allergies, enduring little sleep because of his nightly distress – is chronicled with painful honesty in her recent memoir, Letter to Louis.
The book is both a lament and a battle cry. It describes navigating a state system that is stacked against anyone attempting long-term care for a loved one. “We felt like we were in the dark, going nowhere,” White says, recalling particular ire at a “speech therapist who thought we were deluded and didn’t recognise that Louis was trying to communicate with us”.
We are also introduced to the Glasgow midwife who dismisses what will later prove to be White’s symptoms of pre-eclampsia, the condition that brings Louis into the world eight weeks early by Caesarean and damages his brain; the teachers who ignore him falling from his walking frame; the occupational therapist from the council who insists he wipe his own bottom, forcing his parents to demonstrate, desperately and humiliatingly, that he cannot.
“You’re so exhausted as a parent, you don’t really know what’s out there for you,” Alison White says. “You have to be very, very vocal and pushy, and you’re not able to because you’re so busy with the caring role.”
It wasn’t until Louis was six that White and her husband, Greg, received the results of a scan showing the boy had severe brain damage. Until then, they were told, “your son will go to a normal school” and to “wait and see” regarding his progress. They had two more children, both of whom swiftly overtook their older brother, physically and mentally.
White remembers feeling “completely jaded” when the family took Louis, aged six, to see a music therapist, provided by a charity. “All sorts of people come up to you claiming miracle cures.”
But in one of his early sessions, a pianist sang Louis a welcome song – and he sang his first word back: “Today!”
“The point when he was actually able to speak, that was quite incredible,” White recalls. “He could tell us what it was he was thinking and feeling. A lot of his behaviour was linked to frustration [from being unable] to communicate… it’s fascinating. What I’ve learned is as human beings, we all desire the same thing, whatever your circumstances: you want to form friendships.”
Music was an introduction to Louis’s personality. He’s pitch perfect and plays the piano, guitar, euphonium and didgeridoo (one birthday, he demanded a long-necked Persian instrument called a tambura – “That’s not a tambura!” he yelled in disappointment when presented with a sitar).
White remembers a respite worker offering to take Louis to a concert, and her son’s reluctance when she suggested she could accompany him. “Horror went on his face,” his mother says, laughing. “That actually was a wonderful moment as a mother – that natural thing of being able to grow up. You want to have that separation from your parents when you get to your late teens.”
By the time Louis was nearly 18, the family had seen five social workers in eight months, so often were they leaving their jobs. The fifth one told them the direct payments and respite days (a meagre fortnightly, then eventually weekly: one day and night) to which they’d been entitled would stop after his 18th birthday.
“There’s nothing for adults,” they were told. “There used to be, but it’s all been cut.”
With no social worker available to help them “transition” into the adult social care system, the family was alone. “It was shocking,” White recalls, her eyes betraying her anger. “There was nothing provided for us.”
When Louis was first denied respite care at the age of 12, White’s husband threatened to leave, so great was the strain on their marriage. “You focus on what the child needs first,” White says, shrugging. “That’s hard on an adult relationship, without a doubt. But there was nothing we could do about it.”
They had come close to splitting up before, when Louis was three and they didn’t know the cause of his problems. Describing this moment in the book, White imagines jumping from a cliff with her son in her arms.
Greg stayed, but will not read his wife’s memoir. One has the impression that both parents are traumatised.
“I hope if people read the book they’ll realise you just can’t make cuts in that area at all,” White says. “For our society, it’s important there’s care for the weak and vulnerable, and people who don’t have a voice.”
“Letter to Louis” is published by Faber & Faber