A ‘Different’ Journey

October is Down Syndrome Awareness Month. I write this post in the city where my daughter Kirsty who has Down Syndrome was born in 2001. She was 5 months old when we left London. We haven’t lived here for almost 19 years but have continued to visit family or attend modelling events and auditions several times a year- pre Covid 19, of course.

The nature of our visit this time isn’t a social one sadly. However, I am reminded once again about our time in London all those years ago, driving past the borough we lived in; pointing out to Kirsty where we bought her first car seat and the park we took her to the day before she was admitted for her cardiac surgery at Great Ormond Street.

In my book ‘Our Family’s Journey Through Disability and Cancer’ ,which was released on the 19th of October , I share our moments from when we were first told Kirsty had Down syndrome and her time through childhood to reaching adulthood last year.

When I was growing up, I remember getting to know a young lady with Down Syndrome. I can’t remember her name but I often saw her at church. I used to think to myself why would anyone treat her differently. I was a teenager then. She was a young lady like any other young lady I knew. I saw her as someone with a great personality and content with her life. She also had a supportive family.

However I also remember driving past a ‘house’ or a ‘centre’ as people called it, on my way to school. It was a place where children and young people with Down Syndrome spent their days. I never visited it but I just remember people referring to it as a day care centre. My impression of it was, that the kids in the centre did not go to school and were there for the day as their parents went to work. They were seen as kids with a learning disability and therefore not able to be educated or hold a job in the future.

When Kirsty was 4 years old, Neil and I took Kirsty to this centre. We were in Kuala Lumpur, Malaysia. The city I grew up in. The work the centre did impressed us. It wasn’t only a ‘day care centre’, it was a centre where children with Down Syndrome received physiotherapy , play therapy and where education was introduced. I was so pleased to see that attitudes had changed from the time I lived in Malaysia. I have lived in the UK for 26 years.

Have attitudes really changed? I struggle to answer that question in 2020 and living in the Uk.

My husband Neil and I still remember the day we were ‘told off’ by an emminent doctor for not wanting to terminate our pregnancy. This doctor told us if Kirsty survived she would be terribly brain damaged. This assumption was mainly based on her diagnosis of Down Syndrome. This was 19 years ago.

We also remember going around a primary and secondary school for Kirsty. Both headteachers at the end of the visit made it clear they did not want Kirsty to attend the school. Neither of them had met Kirsty and once again a decision was made without meeting her. This was 16 and 7 years ago respectively.

‘Don’t Screen Us Out’ https://dontscreenusout.org is an organisation that protects the rights of people with Down Syndrome and aims to encourage the medical profession to provide updated and true information on how people with Down Syndrome are able to lead healthy and happy lives. The organisation is currently campaigning for the government to change its rules on the Abortion Act. An abortion after 24 weeks of pregnancy is currently illegal unless the fetus has a disability. This means a baby with Down Syndrome can be terminated up to term.

There was also the controversy over the recent T shirts that were discrimanatory towards people with Down Syndrome. It was shocking that propaganda encouraging hate was so easily accessible. Quite often there are negative posts on social media towards people with a disabilities, including those with Down syndrome.

As a mum whose daughters are in the performing arts, people with disabilities are definitely under-represented in the arts. Kirsty’s agent submits her for several jobs but the ones she gets shortlised for are the ones needing a person with Down Syndrome specifically.

Terminology used towards people with Down Syndrome or any other disabilities can be derogatory, offensive and outdated. Sometimes these terminology is used in an innocent manner and not meaning to cause harm. However it is important society is informed on what words could upset someone.

The Down Syndrome Association created a document to help educate the public on what words were acceptable and those that are not. I would encourage anyone to look at this document. https://www.downs-syndrome.org.uk/about/terminology-guide.

I want to use this month to tell you how much I have learnt not just from my daughter but from the other young people with Down Syndrome and their families, who we have got to know and who have become great friends. The photos in this blog are Kirsty’s friends whom she has known since a very young age. The group photo is one with her friends from her dance group, Dancestars and the other is of friends whom she has known since she was 3 years old. Sadly for most of this year she has mainly communicated with them through facetime.

We are honoured to have met and made friends with people we would not have known if we didn’t have Kirsty in our lives. We treat each other’s children as our own. Kirsty has such lovely supportive friends who have been there for her through her treatment with leukaemia. She has developed close supportive friendships that are selfless and supportive. The sort of friendships that my younger daughter Melissa, who is 13, has with her friends. Melissa and her friends at school do not have a disability. Melissa’s friends are always so supportive of Kirsty and show her so much care and love.

People with Down Syndrome are able to make friendships, value their friends and have a fun and active social life.

My husband and I have recently enjoyed seeing Kirsty and Melissa spend most of their days together, especially since Kirsty came home from hospital. They have watched several of their favourite films together, played board games or sometimes just giggled and cuddled together.

Most siblings of people with a disability are not ‘burdened’ by their siblings like traditionally thought. Instead they are proud of each other and learn so much from each other. Of course this can change at difficult times or as they get older. Sibs Uk, recently released a report that indicated that younger siblings of children with a learning disability were not able to have their parents’ attention during lockdown. With schools shutting and families not getting the usual support package they had during lockdown, parents have had to channel their attention to their child with a disabilty.

New report – “Coming second all the time”: Life in lockdown for siblings of disabled children.

Sibs UK also released a report about adult siblings who found it difficult working and caring for their siblings and elderly parents during the pandemic. Sibs is the only UK charity for children and adults who are growing up with or have grown up with a disabled brother or sister. They provide information, support and training to siblings, families and health professionals.

The impact of coronavirus on adult siblings

However, there is also research indicating that more than 96% of siblings have said that they had affection toward their sibling with Down Syndrome. Also 94% of older siblings
expressed feelings of pride. Please see full report on this link.

http://brianskotko.com/wp-content/uploads/2015/12/AJMG-Siblings-Final-Article.pdf.

Melissa has never been treated differently at school due to her sister’s disability. However I am aware that some siblings can face discrimination or bullying at school because of having a sibling with a disability.

Organisations such as the Down Syndrome Association https://www.downs-syndrome.org.uk/, Mencap https://www.mencap.org.uk/ and Sibs UK https://www.sibs.org.uk/ can provide the necessary support.

Sometimes, these times of discrimination could be used as an opportunity to educate young individuals on showing respect towards other human beings.

As a society we have definitely progressed in our attitudes towards individuals with a disability; there are more opportunities for education, being in the work force and independant living. However there is still so much more work that needs to be done in educating the general public and health professionals on the lives people with Down Syndrome could lead today and in the future.

I remember thinking to myself and saying to my husband when pregnant with Kirsty, ‘If we don’t have hope and expectations for our own daughter, how can we expect others to feel the same’.

I would love to hear from readers. Please feel free to contact me via my website

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