One mother reveals two decades of her lonely struggle against the disabled care system


Alison and Louis as a young boy.

“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.

Alison and Louis. Photo: Courtesy of Faber & Faber

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.

Alison and Louis in a friend’s garden. Photo: Courtesy of Alison White

“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 …read more

Source:: New Statesman


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