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‘You can either be bitter or better’: How Elsie Normington became champion for the disabled after coming to terms with son’s condition

Elsie Normington
Elsie Normington

A defining moment in Elsie Normington’s life came in the early days of her setting up a support group for parents with disabled children.

She said: “I was reading a ‘Thought for Today’ message, which was about when you are going through difficult circumstances you can either be bitter or better.

“I found it very poignant. Being bitter eats you up inside and, as you let go of negative emotions, you become a better person.”

It’s hard to imagine negativity ever winning a battle of wills with someone synonymous with being so relentlessly upbeat and enthusiastic.

The energetic driving force behind many causes for good went from being a piano teacher to a national influencer and lobbyist for improved facilities for families.

Lockdown only encouraged her to become more innovative and reinforced her desire to make progress on her most ambitious project, a £4 million centre in Inverness for children with multiple and complex needs.

Tendering is due to start in the next few weeks for The Haven centre which will be the first fully integrated facility of its kind in Scotland, and serve people across the Highlands.

Living in isolation

Mrs Normington is passionate about creating the facility, not just to support children, but also their parents and siblings, having herself lived the heartbreaking but life-changing experience they are going through.

She said: “The pandemic has further emphasised the desperate need to support families living with disability.

“We constantly hear about isolation and the effect on mental health and I understand and appreciate people are hugely emotionally impacted by it.

“But just imagine if you were living with that all the time, trying to care for a severely disable child.

“That’s what it’s like for a lot of the families we want to serve. They live in isolation because their child cannot be included in mainstream society.

“That’s why we need this specialist centre. We will be serving the most severely disabled children, with severe and complex needs, whose parents have a huge and challenging task every day.”

Mrs Normington’s son Andrew was four when he began taking seizures. His condition was later diagnosed as Lennox-Gastaut syndrome, a severe and intractable form of epilepsy. Now aged 36, he lives independently with 24/7 care.

She said: “I had years of seeing my lovely wee boy regressing, rather than progressing.

“It’s a very sad journey.

“In the early days it’s a terrible shock when you realise your child has learning difficulties, and Andrew had seizures every day of his life.

“It was very scary and, like most parents, you can fall into grief and feel very very down because your child is not developing as you expect, and like all the rest of the kids in the class.

“You then realise that they are in a different category, especially as they grow and the gap gets wider and becomes more and more distinct. It’s then a problem finding appropriate places for them to socialise with people like themselves.”

Elsie Normington

At that time, she had a successful and enjoyable career as a piano teacher.

“I thought I was going to do that for the rest of my life, but then the wind of change blew across my life.”

She turned her own experience of coming to terms with Andrew’s condition into a book The Silent Doorbell and she soon began to notice the lack of appropriate services.

In 1995 she started a parent support group in Drummond School in Inverness, which led to setting up the Special Needs Action Project (SNAP) which she ran for five years.

In doing so, she not only changed career but realised a calling to help and support people.

“That was a crucial and defining project as there was nothing like it in the area,” she added.

“Suddenly children with severe learning disabilities had somewhere to go and have friends. Apart from that, parents could meet other parents because you need moral support in that journey.

“When we build The Haven these will be integral foundational values of our centre in terms of providing safe supported play in a care environment and support for parents.

“There will also be opportunities for siblings. My daughter thinks back to when she was a teenager coming to play sessions where siblings played together. It helped them understand they are not the only family with a disabled brother or sister.

“We will have family sessions in The Haven for that reason, for parents and siblings who are often forgotten in the journey.

“We will look holistically at the family, it will be like a little community. I’m so excited about it. I can’t wait to see it up and running.”

Mrs Normington subsequently developed other charitable groups including the Highland Children’s Forum, Prospects Inverness and Women Influencing Change.

She received the BEM in 2017 for her community work, shorty after losing her husband to cancer.

She also became a development officer with the Merkinch Community Centre, building it into a facility with 62,000 visits a year.

Her piano and singing skills, showcased at a 90th birthday party, led to the creation of the Singing for Pleasure group, which has run for 18 years, and the staging of concerts.

During lockdown, she made sure contact with the community continued by moving Singing for Pleasure online, as well as the Rainbow Singers, for people with learning disabilities, and gospel sessions.

While other fundraising events were affected by the pandemic, she also took part in Christmas carol drive-ins to help raise money for The Haven appeal.

So far £2.6 million has been raised of the £4 million needed for the new centre.

Mrs Normington added: “I find it so affirming and reassuring there is so much support for something that we desperately need. That’s what keeps me going.”

Centre will be a Haven for children with complex needs

The Elsie Normington Foundation, the charity behind The Haven centre, lodged plans with Highland Council in December 2019 and was awarded planning permission in April last year.

The project has been making some strides this year and the scheme will go out to tender in the coming weeks.

The Foundation aims to develop a specialist multi-purpose facility for children and young people up to the age of 30 with multiple and complex needs on a derelict site in the Smithton area of Inverness.

It will provide support for people across the Highlands – where there are 1,679 children with additional needs in school and 722 children who are registered disabled.

Artist’s impression of The Haven centre

It is proposed to build three two-bedroomed respite houses, a community café to be run as a community enterprise, specialist play centres – both indoor and outdoor – as well office space, a number of meeting spaces and a community garden.

It is estimated that 40 jobs will be created during construction and that The Haven will operate with 19 full-time and 11 part-time workers. There will also be significant opportunities for volunteering.

In July The Haven centre received a “game-changing” £1.1 million grant from the Big Lottery Community Fund.

Welcoming the funding, Mrs Normington said at the time: “This is absolutely wonderful news for the trustees of the foundation and all those involved in the Haven Appeal.

“We have worked so hard on our application. The project will deliver for the children in our society who most deserve our help.”

The Haven will transform the site previously occupied by the Culloden Court Care Home which was destroyed by fire in 2010 and has since lain derelict.