Nicky Laitner, however, was not able to take back those words. Charlotte – who has Down’s syndrome – would lead a full and happy life…

Mother and daughter on Charlotte’s graduation day, June 2021

Mother and daughter on Charlotte’s graduation day, June 2021

 Nicky’s Story

Nicky Laitner (53), is an administrator assistant and a running coach. Her husband Steve is a General Practitioner. She lives with them in St Albans. Their three children are Charlotte (22 years old), Jess (20 years), and Sara (16).

Charlotte was only a few hours old at the time when I received a suggestion from a nurse that she could be left at the hospital so that I could continue my own life, leaving Charlotte behind. It was the first but not the last time I felt pitied to have a child with Down’s syndrome.

Her words roused me from the fog of shock and worry I’d been in since giving birth ‒ when it was immediately obvious Charlotte wasn’t the baby I thought I was having ‒ and fired up in me a fierce sense of protectiveness that has never left me.

I was 29 when I had Charlotte and, apart from the routine scans, I opted not to have any testing for chromosomal conditions including Down’s syndrome. I wouldn’t have had a termination so I didn’t see the point; and because of my age I’d no reason to think I was having anything but a ‘normal’ pregnancy.

Charlotte’s features were different from my own. I noticed it the moment I met her. When the midwife ran out of the room in tears, I turned to Steve in confusion, and he told me he thought our daughter had Down’s syndrome. It was that instant I felt my entire world fell apart.

I’d never known anyone with the condition and my mind leapt to the very worst stereotypes of people living in institutions, dependent on others. I remember having the most bizarre thought of ‘will we ever be able to go on family bike rides together?’

Even though this was my first child, I’d felt confident I’d know what to do and how to care for her. But with Charlotte’s diagnosis, despite the deep love I felt for her, I was plunged into uncharted and unexpected maternal territory, and I was scared.

With the wisdom of a wise paediatrician in our ears, we brought her home the following day. ‘Charlotte is healthy and will do what Charlotte will do,’ he’d told me when I naively asked how ‘bad’ her Down’s syndrome was. He told me to just enjoy every day and not worry about her. As any mother of a child with this syndrome will tell you, no matter how much you cherish them, it’s hard to block out the negativity of the world around you.

We received sympathy cards in the post, old friends crossed the road to avoid us because they didn’t know what to say, and I was repeatedly asked why I hadn’t had tests ‒ the implication being this was my ‘fault’.

When other mums I met at baby groups moaned about being tired and frazzled, I didn’t join in. Although I tried my best to remain positive and optimistic, it was tiring because I was concerned about having to share the typical challenges of motherhood with other mothers.

People’s pity only made me more determined Charlotte would lead a full and happy life ‒ and grow up believing she was more than just her diagnosis. She was just as important as every other child and I hoped that others would also see her value.

Nicky with Charlotte aged eight months

Nicky, Charlotte at eight months

At 18 months, she had her second baby, Jess. She was then born four years later. I’d never wanted to have an only child, plus I wanted Charlotte to grow up with siblings, and to have a support network when she was older.

They grew up as close friends and became a cohesive team. I loved Charlotte more than their friendship, because she was less certain. I was unsure if she would crawl or walk. Would she talk at all? They would, as I was certain with the other children. With her it wasn’t a linear path, but at each stage, she dispelled my anxiousness, reaching milestones in her own time, including crawling by 13 months and walking at the age of two. Charlotte was a joy to be around, full of energy and a charming and sociable personality. She was definitely the bigger sister.

Charlotte attended a mainstream school where she received great support and then left with GCSEs. Although she had the academic skills to handle school, her experience in social life was more valuable.

Those years weren’t without their challenges. Her bullying was quite severe and I realized that I could never fully protect her from the cruel comments. Life felt endlessly complicated at times. She had to attend many appointments and meet with educational professionals in order to get the assistance she required.

Charlotte was a natural performer and had amazing comedy timing. I can recall Charlotte singing and dancing to Cheryl Cole numbers at school assemblies. At the age of 11, she was accepted into Chickenshed, an inclusive theatre for young people and children. She was 16 when she was invited to the BTec program. There she excelled and was awarded a 2:1 BA in inclusive performance. This June

Her graduation made me cry with pride. Beautiful, confident and happy, it’s hard to believe expectations of her were so low it was suggested I abandon her or, even worse, that I should have ended her life before she was born.

Charlotte is living a similar life to 22-year olds today. Charlotte works in a local cinema and enjoys going to the pub with her friends. She’d like to have a boyfriend one day and have a place of her own.

Parenting a young adult with Down’s syndrome, I walk a fine line between wanting her to be more independent and live her best possible life, and remaining pragmatic about her vulnerability. She needs help managing money ‒ she’s very trusting, which could make her a target ‒ and when she wanted to learn to drive, I had to say no because it wouldn’t be safe. That was very hard – no mother wants to stand in their child’s way, but I have to be realistic for her sake.

I’ve never wished for Charlotte to be anyone different; I wouldn’t change a thing about her. She’s funny, compassionate and driven. She is unaffected by any self-consciousness and her outlook is clear. This is refreshing. I’m the mom she meant to make, she is exactly who she is.

Charlotte’s Story 

Charlotte Laitner lives in her hometown and works at a local movie theater.

I love to take Mum out to lunch, and also pay the bill. It’s just a small thing, but it matters a lot to me. To work, to earn my own money, to treat Mum – it all reminds me I’m a grown woman, making my own way in life, no different to anyone else my age. I have Mum to thank for fostering that attitude, and my reluctance to live up to some people’s very low expectations of me. She’s never pushed me further than I’m capable of going, but she’s always known what I’m capable of, and helped me reach that point.

My life is very ordinary and yet I know, because of the negative perceptions that still exist about people with Down’s syndrome, some things I do might be considered quite extraordinary. I’m sporty – I run four to five kilometres daily, and play netball and rugby.

Charlotte performing in one of her theatre company’s shows

Charlotte performing in one of her theatre company’s shows

I have lots of friends, both with and without special needs, and love going out for drinks or to see a show in London’s West End. My part-time job allows me to enjoy baking and my mom is addicted to Shetland.

When I run, I am often met with astonished faces. My hope is that by being visible, and proud of who I am, the next time that person won’t be so stunned to see a woman with Down’s syndrome living a normal life. I’ve been bullied in the past at school, and mocked for how I speak and look. Although it was very upsetting, Mum always comforted me and assured me that my problems were being caused by the bullies.

It is my dream to be an actress. Mum encouraged me to have goals and work hard to reach them. Why shouldn’t my dream be to perform on Broadway? She’s always encouraged and believed in me, and loved me for who I am.

Charlotte is what I see when I look into the mirror. I happen to have Down’s syndrome but it doesn’t define me – it’s a small part of who I am. It was something my mother taught me, and I have never let it stop me.