We speak to Alia, mum to Olive, to get the lowdown on Down syndrome. From what it is to the support available in Singapore, plus what we can all do to educate our kids (and ourselves) on the condition.
How much do you know about Down syndrome? If your answer is very little, then you’re not alone. When Mum, Alia Arbisi, found out her baby daughter, Olive, has Down syndrome shortly after birth, she was in the same boat. After experiencing a whole rollercoaster of emotions following the initial diagnosis, Alia went on a mission to get clued up and raise the profile of Down syndrome in Singapore and challenge all the myths that exist out there. Here’s what Alia had to say…
ALIA & OLIVE’S STORY: DOWN SYNDROME DIAGNOSIS IN SINGAPORE
Hi Alia, thanks so much for speaking to us. Can you tell us more about your little girl Olive?
Olive was born here in Singapore and is currently 18 months old. She’s a massive music fan. Her current favourites include Tina Turner, Olivia Rodrigo and The Wiggles! We start every day with a dance and a sing-along. She loves animals too, particularly dogs and lions. Although after a recent visit to the zoo we have realised she prefers seeing them in books and on TV rather than up close!
Since finding out that Olive has Down syndrome, you’ve done so much campaigning to educate others through your IG account. What was your knowledge of Down syndrome before this?
I honestly knew the bare minimum – which is why I know there’s still so much to be done regarding the knowledge and understanding of Down syndrome. I was familiar with some of the physical characteristics common amongst those with DS and knew that there were learning delays associated with the diagnosis too, but I didn’t actually know anyone with Down syndrome. Unfortunately, there seemed to be zero positive stories to do with Down syndrome at all.
Many people might still be unsure or have misconceptions about what Down syndrome actually is. What’s the definition?
Down syndrome is a genetic condition resulting in an extra copy of the 21st chromosome. It happens randomly and can happen to anyone. There are three types of Down syndrome, which people don’t often know. Trisomy 21 is the most common and the type that Olive has. It means she has an extra copy of the 21st chromosome in every single cell of her body. Translocation DS is where the extra 21st chromosome, or part of it, attaches itself to another chromosome. Mosaic Down syndrome is the least common type, accounting for around 1-2% of diagnoses. People with Mosaic DS have an extra 21st chromosome in some of their cells, but not all of them.
How did you feel when you initially received the news that Olive has Down syndrome?
Oh my goodness, I just remember crying… crying SO much. The possibility of her having Down syndrome was mentioned within a couple of hours of her birth. The diagnosis was confirmed via a blood test when she was four days old – I was completely and utterly heartbroken. I was convinced that this meant I was saying goodbye to all of the hopes and dreams I hadn’t even realised I’d had for my baby.
I also remember feeling guilty. Guilty that looking at the beautiful baby in my arms made me feel sad. Guilty that my husband was the father of a child with a diagnosis and like it was somehow my fault. It might sound extreme, but I think I was mourning the loss of the child I had expected to have. Back then, I assumed her diagnosis meant she wouldn’t be able to do ‘normal’ things like travel, take dance classes or date (which I obviously know now is completely wrong!).
Did that change in the weeks that followed? If so, why?
Definitely. I did two things after Olive was diagnosed. The first was to go online and absorb as much information about Down syndrome as I could. Any spare moment I had, I was searching the web. I wanted to know anything and everything there was to know. The second thing I did was go on Instagram and search the hashtag ‘Down syndrome.’ Both things led me down two very different paths. The internet told me lots about the potential health complications and future challenges Olive might face, and, as a new mum, it felt like a very scary place to be.
Instagram led me to a huge community of people who either had DS themselves or had a child with the diagnosis. For those people, Down syndrome was a reality and seeing them living, laughing and smiling in all of their social media posts showed me that my life didn’t need to be a sad, terrible place. It was then that I started to feel a lot less scared about our future and began to just enjoy my baby!
What additional care or medical treatment did Olive need after birth?
Olive was born full-term and a healthy weight. We had a little difficulty getting her to feed (she was an incredibly sleepy newborn), but we went home after three nights and thought all was fine. Unfortunately, Olive ended up on oxygen in the high-dependency unit of KKH at eight days old. She was diagnosed with a congenital heart defect, and we were told she was in heart failure – this also explained her lethargy and the difficulties we had been experiencing when feeding her. Olive was given a nasogastric feeding tube which meant we fed her via a syringe into a tube that went up her nose and directly to her stomach.
My husband was taught to change the tube by the nurses at KKH and would change it for her himself weekly at home! Olive ended up having heart surgery at seven weeks old, and after eight months, we were able to remove the NG tube. It was a very scary time, especially given that we were in the midst of circuit breaker! My husband and I weren’t even allowed to go to the hospital together to see Olive. Seeing her hooked up to machines and recovering from surgery in the ICU all alone was really hard, particularly without the support of our families who were back home in England.
What about now? What medical treatment/appointments does Olive continue to have?
I’m so thankful to be able to say that Olive is absolutely thriving now. Her heart surgery was a success, and she has had no cardiac complications since. Because of her diagnosis, there are a few appointments that Olive will need to attend for the rest of her life as there are some health concerns more commonly found when someone has Down syndrome. For example, she will need annual ear and eye health checks as things like hearing loss, ear infections and cataracts occur more frequently in people with Down syndrome. Olive also has annual blood work taken to monitor the health and function of her kidneys, liver and thyroid. Aside from that, a healthy, active lifestyle is as important for her as it is for everybody.
How does having Down syndrome affect a baby’s development in reaching milestones (crawling etc.)?
The majority of people with DS have low muscle tone (hypotonia) to some degree. This often means they meet physical milestones later than typical children. But as always, a Down syndrome diagnosis is not ‘one size fits all.’ Olive began having physiotherapy at 12 weeks old. Her therapist, Shalini, worked with her on all areas of her physical development: strength, tone and mobility. So far, Olive has met her physical milestones within the typical timeframes, and although this is fantastic, it’s important to recognise that if she hadn’t, we wouldn’t love her any less! I must admit that we do spend more time actively practising the skills she needs to master than my friends have done with their typical children, but I get such a buzz seeing her progress and achieve something new that the time and effort we put into it is so worth it.
What about speech?
Speech can also be an area where delays occur. As it’s a muscle, hypotonia also affects the tongue and can make controlling it difficult. This can often make speaking more difficult for people with Down syndrome. A speech and language therapist helps Olive with her oral motor skills and gives us activities and exercises we can use during our day-to-day lives to support her development. Olive currently uses Makaton (a sign language for people with communication difficulties) to communicate with us. It means she can share her wants and needs with us, and it stops her from feeling frustrated. We’ve been using it since the day she was born, and she used her first sign back at eight months old (she signed milk when she was hungry).
ADVICE AND SUPPORT FOR PARENTS IN SINGAPORE
What advice would you give to parents receiving the news that their baby has Down syndrome?
My first piece of advice is to remember that your baby needs all of the same things every other baby needs: love, cuddles, kisses, songs, food and sleep. I would also recommend getting online and finding a Down syndrome group local to you. You’re going to want a support network ready and waiting during different times throughout your parenting journey. I have found people since Olive’s birth who I know will be in our lives forever and who helped me in the most difficult days right at the beginning, but have also shared with me my joys and successes as a mother too.
Also, please know that so much of what is written online is outdated. In just the last 30 years, life has moved on so much for people with Down syndrome. It’s perfectly realistic for people with DS to live independently, work, go on holidays with friends and get married. It is not at all the life-limiting condition it is often portrayed as!
What support (online or offline) is there for people with Down syndrome in Singapore?
There is actually a Down Syndrome Association here in Singapore! They offer lots for people with Down syndrome, old and young, as well as support and advice for parents too. Before the pandemic, they organised shows and events for the Down syndrome community in Singapore, but obviously, much of this is currently happening online now. I have also found the Facebook group Singapore Special Needs and Parents (SSNAP), a helpful place for local recommendations and advice when it comes to Down syndrome in Singapore. I also love the UK-based group Positive about Downs Syndrome (PADS) which has a Facebook group and website. They have lots of clearly presented, easy-to-understand and current information for parents and family members of those with Down syndrome. They also have helpful presentations and leaflets you can download for schools, teaching staff and caregivers who may be working with someone who has DS too.
HOW YOU CAN HELP TO RAISE THE PROFILE OF DOWN SYNDROME IN SINGAPORE
How can we educate all kids on Down syndrome, and when should we start?
The best thing you can do is include people with Down syndrome in your child’s life from as early an age as possible. There are so many books out there that include characters with Down syndrome and discuss the diagnosis in a neutral and non-judgmental way. We’ll Paint the Octopus Red and My Friend Isabelle are lovely examples. There’s also no reason to wait to introduce differences found in the world to your children – the best time is from day one!
Encourage your children to ask you questions and then research and be informed as a family. Personally, I have always welcomed any questions that people have, but I think it’s also important to remember that some people with a disability don’t want to be questioned or used as a learning aid, so it’s also good to use your own time and resources to research questions you might have. People with a diagnosis are just that… people. Olive is not just a girl with Down syndrome. She’s a happy, determined, beautiful girl who hates avocado and loves swimming. There’s just so much more to her than her diagnosis. It’s so, so important that society recognises that.
What can all parents do to raise the profile of Down syndrome in Singapore?
World Down Syndrome Day is on the 21st of March every year (it’s the third month and the 21st day: three copies of the 21st chromosome, geddit?!). October is also Down Syndrome Awareness Month in Singapore, where people within the community spend the month advocating for the acceptance and inclusion of those with DS and celebrating their achievements. During both of these times, there are always celebrations and events happening that you can attend with your family to show your support and allegiance to the community. On a smaller scale, as a parent, you should try to teach your children that being kind to everyone is important. Show your loved ones that differences are good and they don’t mean someone is ‘less’ than you. In fact, our differences are what makes us unique and should all be celebrated!
We couldn’t agree more – thanks for sharing your story, Alia and Olive!
[This interview was first published on 28 October 2021.]