Nicola Enoch | The Ups of Downs and Positive about Down syndrome | Leamington Spa, UK
In August 2004 when my baby Tom was almost 24 hours old my world fell apart when a Paed asked me if I thought my precious baby ‘looked normal’.
Tom has Down syndrome (DS), I’d been terrified of having a baby with DS, at 39 I knew my ‘risk’ was high & so had paid for extra tests, to this day I’m so grateful they weren’t more accurate.
In January 2006 I realised the need to meet with other parents & so formed The Ups of Downs. 13 years later we work with more than 60 families with a child or young person with DS. At our weekly Early Development Groups parents are shown activities to promote & support development across a whole range of areas in a fun & engaging way that they can replicate at home. Our youngest members have weekly Sing, Sign & Phonics sessions to encourage early communication skills whilst our school age members attend Saturday clubs providing a range of activities pitched so they can excel & achieve, including drama, dance, yoga & sports. Our oldest members have a weekly math club & those at secondary school a newly formed Youth Club.
The Ups of Downs is committed to working towards a world where people with Down syndrome live their lives to the max as fully included, valued members of society. We want people with DS to have the same opportunities in life as their family & friends.
I organise regular training events for parents & the professionals who work with our members. Over the years I’ve developed & fostered good relationships with our LA to promote & support inclusion in mainstream schools. We’ve collaborated to ensure secondary schools are trained & supported so now our members are continuing in mainstream education.
I have worked on an entirely voluntary basis for 13 years running The Ups of Downs and other activities. I’m passionate & determined to ensure folk with DS have every opportunity to develop & flourish. I support new parents who are often over whelmed at discovering baby has DS. I can never recover the months of devastation & despair I experienced when Tom was born but try to ensure new parents celebrate the arrival of their baby with DS.
We know that more than 90% of women terminate when discovering baby has DS. I know I could have been one of those 90%, because I was so desperately ignorant. After receiving a text from an expectant mum who terminated her pregnancy because a doctor had told her ‘baby would suffer’, I decided enough was enough & in October 2017 launched the website Positive about Down syndrome (PADS). Written by parents & young people with DS, the aim is to show the reality of our lives.
PADS has been a huge success, I regularly receive messages from new & expectant parents seeking advice or to be put in touch with local support. I’ve sent out almost 100,000 postcards to maternity units across England & midwives have welcomed the resource.
We support local maternity services to ensure they have a good understanding of DS & I have also delivered training nationally via PHE. I attend midwifery conferences & will be exhibiting at festivals in April & October this year to ensure hcps have access to PADS! I work with Warwick Medical School to enlighten & educate trainee medical students too.
I am a huge believer in not reinventing wheels & 4 years ago created a network of support groups across England & Wales, now consisting of 275 members representing more than 80 groups. We share best practice & resources, ask for advice, motivate & inspire each other. I organise an annual conference each Autumn which is very well attended & arrange for experts to present, including Maggie Woodhouse, Dr Shahid Zaman, Dr Gareth Thomas & this year Prof Sue Buckley will be speaking.
I’ve created several Facebook pages to provide support: PADS new parents, Future of Downs secondary school age support, Going potty toilet training advice & tips. Also pages to disseminate information & encourage peer interaction, for professionals working with children of preschool, primary & secondary ages. Another page in conjunction with Maggie Woodhouse for eye care professionals & one for Research Opportunities relating to DS.
Over recent years I have become actively involved in campaigning; lobbying parliamentarians around concerns many of our community have particularly relating to ante natal screening.
Fundamentally I’m just a mum, a mum who came from the depths of despair to want to advocate and campaign, to educate & enlighten people about the reality of Down syndrome, to ensure our children & young people are given every opportunity to succeed, are loved & valued. I came from a place of tremendous ignorance & it saddens me that nearly 15 years later so much fear & ignorance continue to prevail, but I do believe attitudes are changing & people are starting to accept those with learning disabilities. However, the greatest advocates are our young people, Tom continues to educate me & he & his sister Emily will always be my inspiration.