NEW BOOK CELEBRATES TWO NI CHILDREN WITH DOWN’S SYNDROME
As a beautiful new book celebrates the lives of people across the UK with Down’s syndrome, Leona O’Neill asks two families from NI who feature on its pages why they decided to take part
Lyn: ‘I‘m so proud of David... he sprinkles his own magic wherever he goes and he changes people’s perceptions
❝ David goes on his own path... he might take the scenic route, but he still gets there
❝People still get the ‘I’m sorry’ response, but there’s nothing to be sorry about
Anew book highlighting the many positives of having a child with Down’s syndrome, also known as trisomy 21, has just been launched and features two very special Northern Ireland children.
Wouldn’t Change A Thing, which includes 61 families, mainly from across the UK, aims to give parents with Down’s syndrome children an insight into the experience that lies ahead, focusing on the positive side of the learning disability rather than the negative stereotypes. Every new mum who has a baby with Down’s will receive a copy of the book and the stories of two local children, Maisie Colhoun and David Steele, will provide courage, strength, hope and inspiration to each family as they embark on the adventure.
Portadown mum-of-three Lyn Steele (50) and husband Darren were shocked when their son, David, was diagnosed with Down’s syndrome. They also met with a great deal of negativity as they began their journey.
“It was a totally normal pregnancy,” Lyn says. “I went into labour exactly four weeks early and he was born within an hour. Nobody mentioned anything about Down’s syndrome to me then, but they did ask me if he looked like my other children.
“It was while they were doing his discharge medical that they noticed he had a single crease on his hand and said that it could be an indicator of Down’s.
“A consultant was called in and a blood test was done. That con- firmed that David had Down’s syndrome. It was a big shock and how I was told probably wasn’t the nicest way (for it come out). This is something that the Wouldn’t Change a Thing charity is trying to change for new parents. The way I was told was that the registrar came into my hospital room waving a piece of paper and said ‘I hate having to do this’. Then he told me.
I can’t remember what was said after that, but I was handed a photocopy of a Down’s Syndrome Association leaflet which had an out-of-date number on it — and that was that. I feel that it was just so negative.
“I was told everything that David was not going to do. I was told that David wasn’t going to be able to stand until he was four, or walk until he was five, but David was running around when he was two years old. It’s just (about) the negative perception of Down’s syndrome and the whole thing about terminations. There are countries that are trying to eradicate Down’s and that is frightening.”
David has few health issues beyond a hearing problem and learning disability. He has brought an enormous amount of “magic” into his family’s life.
“David goes to a mainstream school,” Lyn says. “He is in primary seven now and, although his work is a little less than that level, he is doing well.
“He is Ulster Rugby’s biggest fan and got to be their mascot in September, which was just amazing. We were so proud of him. He plays rugby with Portadown Panthers, the learning disability tag rugby club.
“I just want people to know that there is absolutely nothing to be scared of. People with Down’s are a part of the population who deserve to be celebrated and that is what the book is doing.
“The book is going to be given to hospital units and maternity units to try to put parents’ minds at ease.
“When you look at it, our kids are just amazing, they really are. I wish we’d had something like this book when our child was born. I want parents to look at these beautiful children, look at what they have achieved and see how amazing they are.” Lyn decided to take part in the book because she wanted to inspire and encourage other parents and challenge mindsets.
“I wouldn’t change a hair on David’s head,” she says.
“He is just amazing how he is. We have our challenges, but don’t all parents? I’d advise other parents who are starting off on this journey to get in touch with the Down’s Syndrome Association.
“I would urge them to get relevant information. In my experience, the medical professional can still be negative and will tell you about what can’t be achieved, not what can.
“I know that there is a university lecturer with Down’s, a top model and many others blazing a trail. Don’t accept that there are any limitations because there aren’t. The more you encourage your child, the more that potential will come through.
“The most important thing is not to be afraid. There is always support out there. It’s too easy for society to write off children with Down’s. That attitude needs to be smashed. Our children and young people are smashing through every obstacle that’s put in front of them. Society will get to learn, but it is just taking so long.”
Lyn is immensely proud that, through taking part in the book, her son is making people think twice about the condition.
“Nobody ever tells you the positives,” she says. “David sprinkles his own magic wherever he goes and he changes perceptions. He just doesn’t take no for an answer and he will have a go at anything.
“To have David’s story in the book makes me so incredibly proud of him, of everything that he is doing and everything that he has done.
“Even in his school he’s the first pupil with Down’s in 38 years. He goes on his own path, but he gets there. He might take the scenic route, but he still gets there.
“He enjoys everything that life has to offer. We could all take lessons from that.
“Children with Down’s just see the joy in life. I wish there were more people like that — it would be a happier world.”
Mother-of-three Dawn Colhoun (44) is from Newbuildings in Londonderry and is married to Allistair. Their six-year-old daughter, Maisie, had a bumpy start to life and needed open heart surgery but is now thriving — and her mum couldn’t be more proud of her.
“I had a brilliant pregnancy and everything went great,” Dawn says. “I worked as a midwife support worker at Altnagelvin hospital.
“We didn’t know anything until she was born. Whenever she was born, Ally cut the cord but Maisie didn’t make the transition to breathe. The crash trolley was in the room and everything went mad.
“Because I knew all the midwives, the sister whispered in my ear that Maisie was very, very sick and that they thought she might have Down’s syndrome. She was ventilated straight away and taken to the neonatal intensive care unit (NICU).
“The Down’s syndrome aspect didn’t bother me. It was the fact that she was so sick (that did). She had two holes in her heart and her lungs were doing the work of her heart.
“She also had another valve condition which meant that the blood was being directed to the wrong place. She was very, very ill.
“We couldn’t hold her when she was in NICU. We got to hold her one day and she ended up really sick. We thought she had gone into heart failure and that we were going to lose her.
“The NICU staff were amazing. Dr Armstrong, our paediatrician, is the most amazing person in this world. Dr
Dawn: ‘Maisie lives life to the full and we encourage her every step of the way ... this book is a celebration of her and her friends’
Sands, a cardiologist from Belfast, was amazing too. They kept us going the whole way.”
Maisie had to have open heart surgery in Birmingham Children’s Hospital when she was just 18 weeks old.
“She was on oxygen as a baby and would take episodes when, if you were holding her, she would go limp and turn grey,” Dawn says. “I could never get to hold her. As a mummy, that was really hard — it was horrendous. It was a really difficult and scary time.
“We had to sign a waiver before her surgery that said things could happen and she could die. That really hit home for me. I was really positive and really strong until I had to take her down to the operating theatre. There was no way I was going to let her go down without us. It was really emotional.
“The surgery was five hours long and they were the longest five hours of my life. I cried for the first two hours... I just couldn’t cope with it.”
Maisie, who has a moderate to severe learning disability and is now starting to take a few independent steps, came through the operation. Once she was out of the danger zone, Dawn and her husband settled into the adventure of life with their beautiful daughter.
“We loved her from the very beginning and Down’s syndrome didn’t come into it because she was our little princess,” Dawn says.
“My friend lived across the street from us and her sister had Down’s syndrome. We had all grown up together. She was doing Makaton, the sign language, and I had always wanted to learn it, I remember. I wasn’t concerned about her Down’s syndrome at all. I was happy.
“My family and my friends have been amazing throughout all of this.
“My husband is my rock and my two boys are amazing with Maisie. They have fun with her and are always there to help out if needed. I have a great bunch of mothers who are so supportive too. You just need people around you.”
Dawn decided to share her family’s story in the book because she wanted to inspire other parents in same position and highlight the positives of having a child with Down’s syndrome.
“I remember when I searched the internet, if I ever wanted to know something or show the boys anything, it was all doom and gloom,” she says.
“There was nothing happy or positive about it (Down’s), so that was the main reason I wanted to do the book. I think it will help alleviate fears (and show) Down’s is not a bad thing.
“I think people are still getting the ‘I’m sorry’ response when they are told their little one has Down’s, but we are looking to change that. There is nothing to be sorry about. It’s a little baby and those parents have been waiting on that baby for so long. People should be celebrating and congratulating them, not feeling that the baby is doomed.
“I wouldn’t change a thing about Maisie. Sometimes things are challenging — I’m not going to say that they are not — but we always get there in the end and there is always someone there to talk to if you’re having a hard time.
“This book will show amazing families, their kids and adults who have Down’s syndrome and will encourage parents that there are friends out there to support their journey every step of the way.
“Maisie and her friends are like everyone else. They want to learn, succeed, have friends and have adventures along the way. This book proves they do. They should be celebrated because what we take for granted, they work very hard at.
“It will show new parents not to fear what’s to come, but to celebrate every step of the way. It will show fun, love, excitement and families who love and adore their kids.
“A life with a child with Down’s syndrome brings ups and downs, like any other child, but it also brings love and happiness and celebrates the triumph of achieving every little thing, of taking time and appreciating everything in life.
“It also comes with the usual behaviour tantrums, mischief-making and everything other kids do.
“Maisie lives life to the full and we will encourage her every step of the way. This book is a celebration of her and her friends.”
Wouldn’t Change A Thing is published by a parent-led organisation of the same name that exists to correct negative, outdated perceptions of the capabilities and quality of life of people with Down’s syndrome. It was created for hospitals to help support new and expectant parents and maternity units across the UK. You can order a copy, priced £6, by visiting www.wouldntchangeathing.org/ product/wcat-book-by-celebrate-t21