Mum on charity’s lifeline support for son: ‘It feels like a miracle’

The call when it came was a welcome surprise but, according to Roisin Gilmour, has led to something even more unexpected.

“It feels like a miracle,” she said. “Three years after the phone rang, I am seeing things I thought I would never see again.”

The call three years ago was from Aberlour, the leading children’s charity, offering specialist residential support for Roisin’s son Ashley, 21, who has severe learning disabilities, non verbal autism, and epilepsy.

It would lead to him leaving a residential unit in England to move into a bespoke flat in Scotland where he lives with specialist support provided by Aberlour and funded by Fife Council.

Roisin said: “Aberlour had already thrown our family a lifeline once before when they offered us respite care when Ashley was in his early teens.

“They kept in touch even though they didn’t have to but just because they cared.”

“Then, after all that happened, they came to our rescue again.”

Before Aberlour intervened, Ashley had spent three years in Doncaster receiving tailored and intensive care and treatment unavailable in Scotland.

He had been forced to leave his home in Fife after being sectioned when his self-injuring behaviour worsened.

His time away spanned the pandemic when Roisin would drive 260 miles from Scotland to see him through a fence because of lockdown restrictions.

She said: “His self-injuring became so bad that we were told that he might not survive another incident. We were told to prepare for the worst.

“But the psychiatric and psychological support that might have helped him were not available in Scotland

“The few services with the expertise to help him did not have space. The specialist treatment just wasn’t here.

“Ashley can’t be cured, of course, but there were services in England that helped him that were just not available here.

“It was more focused on specific autistic behaviours like self injury, specific medications, diet, they just seemed to understand Ashley’s condition better.

“The behavioural analyst in psychiatry really helped too but that kind of support didn’t seem to be available in Scotland.”

Then, in 2021, Jacqui Kirk, who managed the Aberlour service in Fife and had worked with Roisin, husband Graham and youngest son Daniel, when arranging respite care, called to say the charity was planning four bespoke flats for young people with exceptional needs. She wanted to help Ashley come home to Scotland.

Roisin said: “Jacqui had never forgotten us and I don’t have the words to express how much that meant.

“The staff at Aberlour are just another level and allowing us to bring Ashley home to Scotland was literally life-changing for all of us.

“What they do is so important and so badly needed. The services they provide, like respite care, can be the difference between families being able to take a breath or burning out.

“Slowly, Ashley has been brought out of his shell, out of darkness and into the light.

“He has a life now.”

“This is a boy who never left his bed for nine years. He never had a life and now he is leading a fulfilling life. I never thought it would happen.

“Aberlour saved our family.”

Liz Nolan, Director of Children and Families at Aberlour, said Ashley’s experience only underlines the need for more specialist support services in Scotland.

She said: “That kind of care and support remains very limited.

“When Ashley went down to England, it was really the only option and there continues to be a real need for specialist provision particularly for young people who struggle in group living.

“Even if they could manage, there are very few residential spaces for children and young adults with disabilities.”

“The funding is difficult, because there are not the same options for young adults as there are for children and the options are limited for children.

She admits Ashley’s behaviour was so challenging when he returned from England that there were times when it was not clear if he would be able to stay.

But, after settling in, he is now thriving in the Glenrothes complex.

Nolan said: “Ashley was very unwell and the first two years were extremely difficult.

“But it’s not just about the facilities, it’s about the staff, their dedication, determination and love to ensure Ashley could stay.

“There was so much commitment to making this work for him.”

Aberlour worked with Glen Housing Association to deliver the four purpose-built flats for young people with learning disabilities or autism with staff providing 24/7 support.

Opened in 2022, the flats are all self-contained with a communal area with Fife Council funding around the clock support and Aberlour working closely with NHS Scotland and social work teams.

Nolan said: “We knew there was a need for this type of accommodation and that idea has led us here.

“It was completely new and based on us knowing the young  people, often since they were children.

“It’s heartbreaking when we see youngsters who we really want to support but can’t because the specialist services are just not there.

“We have known Ashley since he was a tiny little boy and watched as his needs grew more significant.

“So it was really all about how could we support Ashley to come back and be part of their community and we had a huge amount of support.

“We need individual flats that young people can go into, where we can support them, and they have a level of independence whatever that looks like for each of them.

“They can be on their own if that’s what they choose but there’s a central area where they can see each other, go on outings together.

“They are living as individuals but are near their family and part of a community.

“It is just phenomenal now to see these young people with profound difficulties enjoying life again.

“It is challenging and can take years to build these relationships but the rewards are immense.”

Nolan believes the Glenrothes flats could be template for similar services elsewhere in Scotland to extend the specialist support for young Scots with profound learning difficulties and avoid them having to travel to England like Ashley.

She said: “This service is small but replicable and is what children need as they become young adults.

“We want to see children back in Scotland living their best lives because that is what Ashley is doing, he’s living his best life.

This article was written for The Sunday Post and published on Sunday 23rd February 2025