Sense Scotland: a lifetime of support
Nicky and his family owe a lot to charity
When a new charity shop opened its doors across the road from Norma McGarry’s Mount Florida home in 1990, it began an association which would transform her life.
The new mum did not know much about congenital rubella syndrome (CRS), the condition her baby had just been diagnosed with. But Sense Scotland, owners of the new shop, did.
And when their signage went up announcing them as the “national deafblind rubella association”, Norma rang the phone number and the connection with the charity began.
Norma’s son Nicky has been involved with almost all of Sense Scotland’s Glasgow- based services at every significant stage of his 30 years.
Today he lives in his own flat supported by their staff, enjoying daily outings and even, prior to lockdown, a part-time job at their TouchBase Glasgow hub.
But as mum Norma explains, it has been a long and challenging journey to get Nicky to this stage – which would have been impossible without the lifelong support the family has received.
She said: “Where he was to where he is now, we couldn’t have done it on our own.
“Every step has been with Sense Scotland. It’s always been about him, and about us as a family.
“Nicky would not be where he is today without them.”
Nicky’s story began when he was born two weeks early by emergency C section in Rottenrow in January 1990, weighing just 4lbs 2oz and covered in a rash.
He was taken immediately to intensive care, where staff did tests and told Norma and husband Stephen that Nicky had been in contact with rubella.
While the rash had disappeared and Nicky had no symptoms, they warned his anxious parents that could change.
Nicky developed a cataract on his eye and he was taken to Yorkhill Hospital, where it was confirmed he had contracted CRS, becoming one of the last babies in the west of Scotland to be diagnosed with the condition.
He was having difficulty breathing, crying constantly and not feeding very well. But despite numerous trips back and forth to the hospital, the seriousness of the condition wasn’t acknowledged.
Norma said: “We were worried and told the hospital about the CRS, but they kept saying it was just mucus in his airways; they didn’t really take on board where we were coming from.
“We phoned Sense Scotland and were put in touch with Gill [ Morbey, one of the charity’s founders and first CEO] who came out to the house to see us.”
This relationship grew and became crucial weeks later when Nicky fell seriously ill over Easter and almost died.
Norma explained: “It was Good Friday and he was going blue so I got a taxi up to Yorkhill. He had double pneumonia and his oxygen levels were erratic – in fact he was so ill the priest came to christen him.
“He was so poorly Stephen and I refused to take him home – the hospital had to see what was happening; that over long periods of time he wasn’t well.”
It meant the start of a fourmonth hospital stay for young Nicky, and visits with a difference for Norma.
She said: “I used to take his pram up to the hospital so I could take him into town for walks and fresh air with his oxygen tank underneath, but when the levels fell I had to go back.
“I would see Gill often – the charity’s main office was in Dumbarton Road, two minutes from Yorkhill, and I’d just phone and she’d pop round.
“We didn’t really know what to expect when we were sent home; it was all very overwhelming.
“The consultant was brutal. He said, ‘I don’t know what I’m giving you back.’ We knew it would be difficult but didn’t appreciate the severity of Nicky’s condition. We knew he might not walk or talk, but there was so much else.”
It became apparent that Nicky was blind in one eye, had hearing difficulties and was unable to eat on his own.
In 1991 Sense Scotland secured a grant from Children in Need and opened their Family Resource Centre in Newart Drive, Glasgow. They also appointed a family advisor.
Norma said: “The guys there all worked really hard with him. Every Friday Nicky would go to Newart Drive and he’d have a total sensory experience in the play room.
“He had baths with tomato soup, jelly and squishy cream. He’d love it.”
It also gave Norma and Stephen time with their daughter Emma.
When Nicky was five, it was time for school and, on Sense Scotland’s advice, he attended Carnbooth, the only school in Scotland for children with complex needs.
At weekends he’d be involved with the charity’s Children and Families service, getting picked up from home by bus.
Norma said: “He’d be sitting at the window waiting. He really enjoyed it, and loved the outings and the activities they did.”
It was when puberty hit for Nicky that a whole new set of challenges emerged.
Norma added: “All hell broke loose. Nicky damaged the house, breaking windows and flooding the kitchen by leaving the taps on. He went for me a couple times, pulling my hair, and it was just horrendous.
“We managed to get the right medication, which helped, but once again Sense Scotland stepped in to support us.”
When he turned 16 Nicky was able to attend adult day services at Sense Scotland’s Durham Street building, where he took part in activities including music, arts and woodcraft.
His support workers were instrumental in managing Nicky’s behaviour, using distraction and diversion techniques. When things got too much for the family to cope with, they could access respite to ease the strain.
Norma said: “The guys supporting him were fantastic. They got to know Nicky and he got two-to-one support; I don’t know what we would have done without them.”
Another challenging period was Nicky’s transition to independent living, which was a lengthy process.
Norma said: “We couldn’t have him here. We couldn’t get a suitable council home.
“Gill and the head of operations, John, kept on advocating for us and we managed to get him his own tenancy, with Sense Scotland staff helping him to live within his own flat.”
After Nicky got the keys in July 2015, Sense Scotland worked with him over six months to build up to him living there full-time.
Norma said: “We had a wedding to go to at the end of August that year, and we arranged it so that Nicky had his first sleepover at his flat that night.
“It was the first time Stephen, Emma and our other son Adam were able to do anything like that – something all together.
“We worked it so that he gradually spent more and more time at his flat, more than at home.”
For the past five years home has been where it happens for Nicky.
His 24/7 carers Robert, Simon, Pier and Jackie support him to do the activities he loves like swimming and visiting places.
During lockdown, Nicky coped well, apparently not being too bothered about missing his work in TouchBase Glasgow or even seeing his mum and dad.
“I’m not sure he even missed us, which is a bit galling,” laughs Norma.
“A parent can only do so much. Carers don’t give in, they know what’s right for that person, they’re so professional and so good at what they do.
“They go above and beyond just meeting Nicky’s needs. Sense Scotland meet the person’s needs – this is what families require.
“We’ve had a lot of heartache along the way, but look at him now. He’s such good fun!”
The baby for whom the future looked so bleak has lived a lovefilled and wonderful life.
Visit Sense Scotland’s charity shop in Castlemilk or go to www.sensescotland.org.uk/ for further details about its work and services.