Celebrating World Down Syndrome Day: An interview with the founder of Leamington-based charity The Ups of Downs

But when baby Tom was less than 24 hours old, that world fell apart with the news that he had Down syndrome.

Fast forward 14 years and Nicola’s registered Leamington-based charity The Ups of Downs is not only shifting perceptions of the condition but changing lives.

And it marks a hugely personal journey that’s been inspired every step of the way by Tom himself.

Nicola’s message resonates loud and clear in the name she has given to the charity: ‘The Ups of Downs - Celebrating Down Syndrome.’

And celebration is definitely at its heart.

But she’s the first to admit, it wasn’t always that way.

“Prior to Tom being born we were of the view that we didn’t want a baby with Down syndrome, being brought up in a society that talks about screening, termination, the ‘risk’ of having ‘one of these babies.’ It felt like babies with Down syndrome were a separate entity almost,” said Nicola.

“We’d paid for extra screening tests so when Tom was a day old and the consultant expressed a concern that he may have Down syndrome, we were absolutely devastated because the bottom line is, we may well have chosen the termination route had we known in advance. We were really upset and struggled enormously.

“I took a long time to come to terms with it because, like everybody else at the time, I had a lot of outdated views around Down syndrome. Our world had fallen apart and we were offered no support to rebuild it.”

Those formative months proved incredibly challenging for the parents who suddenly found themselves thrust into a world they didn’t understand and without the support they so desperately craved.

Nicola, 55, said: “When we brought Tom home I didn’t celebrate which was really sad. When we’d had my daughter Emily three and a half years earlier we were euphoric.

"Everything was excitement whereas with Tom it was fear

“I remember the community midwife consoling me as if Tom had died.”

“I remember thinking how people felt sorry for me.

"People were sending flowers who hadn’t sent flowers for Emily.

"I remember the community midwife consoling me as if Tom had died.

"That just perpetuated it all.

"You think, 'this must be really bad'.”

She added: “It took me months to be able to see beyond Tom having Down syndrome and to fall back in love with him.

"I was terrified of the future as I had no understanding of it.”

“It took me more than a year to overcome the trauma I experienced.

"But then I started to wonder why I was so devastated.

"What was wrong with having Down syndrome?

"As I questioned many beliefs and attitudes I held, Tom started to enlighten me, teaching us the true meaning of parenting, which is not about a parent’s hopes and aspirations for their child but about love.

"“He taught us to redefine success, to give and receive the deepest love, to accept and celebrate being who we are and to value and appreciate life.”

Appreciation turned into determination – a determination to dispel the myths around Down Syndrome and re-educate expectant mums. And so the foundations for a charity which today helps more than 70 families were set.

Today The Ups of Downs has one vision: to create a world where people with Down syndrome ‘live their lives to the max as fully included, valued members of society.’

This heartfelt ethos drives all aspects of the charity’s work from birth to teenage years, including weekly Early Development Groups, for pre-schoolers, to Saturday Clubs and Youth

Groups. As well as support and training, on offer is everything from Sing, Sign and Phonics sessions and sensory play through to speech and language therapy and drama, dance and sporting activities.

From the beginning Alison Smith, who is also mum to a young person with Down syndrome, has been involved, in recent years delivering the Early Development Groups as well as weekly after-school maths clubs for teenagers.

She said: “I am passionate about raising expectations of our young people with Down syndrome and know that with knowledge, understanding, and a positive attitude, our children can succeed. It is really important to me that children achieve success, have fun while learning and have the right support to enable them to learn and succeed.

Of Nicola, she said: “She works tirelessly to improve the lives of those with Down syndrome. She is determined to change people's outdated perceptions of Down syndrome and is an amazing advocate for the Down syndrome community.

"She has completely immersed herself in this world and her drive and desire to ensure children with Down syndrome are given every opportunity to succeed and be included in their communities is incredible.”

As the charity continues to grow, so do Nicola’s ambitions for its future and new services continue to be introduced.

A recent addition, thanks to the funding support of Awards for All, are The Ups of Downs Social Inclusion Champions who deliver training to mainstream providers of out-of-school activities such as Scouts, Brownies, dance classes and sports clubs.

The ‘champions’ are appointed to visit providers on a regular basis as well as work with the young people and their families.

“Our Saturday clubs exist because our young people generally struggle to access a mainstream one. It is all about attitude.

If a leader wants it to work they will make it work,” said Nicola.

“If they’ve no experience of having a young person with Down syndrome in their group there is this immediate kneejerk response of ‘no, sorry, we can’t work with them.’

“We invite people to come to training and understand what Down syndrome is because a fear of the unknown is all-too-often the problem.”

The charity also works closely with a host of professional partners in hospitals and schools and can even arrange access to a trained counsellor for those parents who need that emotional support.

Nicola is particularly proud of the charity’s work in supporting inclusion in mainstream education, resulting in the creation of a specialist teacher role which has been key to integrating children with Down syndrome into secondary schools across the Midlands.

As Nicola looks back on the huge strides they’ve made in tackling the stigma around both Down syndrome and learning disabilities over the past 14 years, she still knows there is work to do.

She said: “My ultimate aim is for our children and young people to be included, valued members of their society.

"The biggest issue our community faces is ante-natal screening and I’ll be happy when there is a level playing field and there’s not an assumption to terminate.

“Women who are expecting a baby with Down syndrome are treated with the same care and dignity that any other expectant mum receives and that people understand the reality of the condition.

"If a woman chooses to terminate that is her choice but what I do worry about is the women who don’t have the correct information and support and are making life death decisions without it.

"Our young people are the greatest advocates.

“It is slowly improving.

"The more our young people go through mainstream schools, the greater the impact.

"Our young people are the greatest advocates.

“I’d like to think that as others grow up alongside Tom and anyone with a learning difficulty, it makes us a more inclusive society.

"There is still quite a lot of stigma around learning disability as future generations go to school with people with learning disability, playing with them, doing sports together, socialising together etc. that’s how you get to know people and realise that actually, we all have the same needs.

"Everybody wants to be loved and valued and we all have our own strengths and weaknesses.”

Nicola’s positive message is now spreading wider than ever since the launch of PADS (Positive About Down Syndrome) in 2017 – a website and social media support network accessible to parents worldwide. And she is often to be found at the forefront of campaigning for better antenatal screening.

As well as lobbying Parliamentarians, she has formed a group of advocates who meet regularly with a member from the House of Lords to look at getting legislation updated to ensure equality around antenatal care – and has earned her place as a respected voice for Down syndrome.

PADS literature can be found in maternity units at more than 60 hospitals across the country.

“Our next challenge is to support our older members who are leaving secondary school and moving into further education and work opportunities.

"We want local businesses to see the benefits of employing people with learning difficulties.”

How would Nicola sum up her journey with Down syndrome?

“Fundamentally I’m just a mum, a mum who came from the depths of despair to want to advocate and campaign, to educate and enlighten people about the reality of Down syndrome, to ensure our children and young people are given every opportunity to succeed, are loved and valued.

“I came from a place of tremendous ignorance and it saddens me that, nearly 15 years later, so much fear and ignorance continue to prevail.

“But I do believe attitudes are changing and people are starting to accept and embrace those with learning disabilities. However, the greatest advocates are our young people, Tom continues to educate me and he and his sister Emily will always be my inspiration.”

Like all charities, The Ups of Downs relies heavily on the goodwill of fundraisers to continue its work.

Any individual or business who can help in any way can contact Nicola.

Visit The Ups od Downs at: https://upsofdowns.co.uk