It's October, Down Syndrome Awareness Month! We caught up with Hidayah, mum to Ayaan, on how they navigate life as a young family in Singapore with a child with Down syndrome.
Life with children is a wild ride – and life with children who have special needs, even more so. But thanks to technology, community and unwavering support from dedicated parents, we’re seeing more and more children with special needs thrive and even grow up to be independent people. That’s exactly what parents like Hidayah Abdullah and her husband want for their child. This Down Syndrome Awareness Month, we shed light on the genetic disorder that occurs in about one in every 700 babies in Singapore and how a young family like Hidayah’s navigates societal pressures and daily life.
Hi Hidayah! Can you tell us a little bit about yourself and your family?
Thanks for having me! My name is Hidayah. I am 30 years old this year and married. Together we have our son, Ayaan, who is very special to us. My husband works as an operations technician while I recently joined the financial industry.
How did you feel when you found out about your son’s diagnosis?
When my husband and I were told about Ayaan’s diagnosis, there were a lot of worries. Because at that time, not only were we first time parents, but we also had no one in our lives who had Down syndrome, so we totally had no prior experience and didn’t really know what to expect.
What helped you cope during such a difficult time?
What we saw on the internet didn’t help. We saw a lot of statistics and things like what someone with DS might not be able to do. So we went on Facebook and Instagram to find other real life families with kids with Down syndrome. One of the first accounts that I came across on Facebook was The Peita Boys. One of the brothers has DS and scrolling through their posts made me realise that kids with DS are able to do what any neurotypical kid can do, just that they may take a little longer. I think that helped flip a switch. Other than that, I am also thankful to have supportive family and friends who were there for us. I feel like we were more ‘settled’ once I learned to take things a day at a time.
Have there been any experiences interacting with other kids or parents who were unaware of Ayaan’s condition?
Thankfully, there hasn’t been a super bad experience so far. But there were rare times where other kids have come up to me and ask about Ayaan. “Why does he talk/act like that?” I just tell them that Ayaan has DS and that’s just the way that he expresses himself and communicates. Afterwards they’ll still play with him, and if they don’t understand what he wants usually they’ll ask me again what he’s trying to say and then I’ll explain.
Has Ayaan ever had trouble adjusting in school?
Ayaan is currently in a My First Skool preschool in the east, and he also attends SPD@Tampines for their EIPIC programme.
I had to quit my job when he turned 18 months because his previous childcare requested for us to withdraw him (he was in infant care then). They said they couldn’t promote him to playgroup due to safety issues as he still wasn’t walking then. I didn’t argue with them about it because I’d prefer to withdraw him from the school than to send him to a centre that was quite unwilling to accommodate to his needs. That was the main reason I quit my previous job.
We continued looking for a school for him, but every time a centre we approached heard of Ayaan’s condition they’d tell me that they don’t have any trained teachers in their centres. It was only when we tried applying for the My First Skool centre (that he’s currently in) in 2023 that the principal asked us to visit the school to attend a school orientation. The principal took Ayaan in even though she doesn’t have any trained teachers for special needs.
I think the bottom line is, it really depends on whether the principal and teachers in the centre are willing to accept children with special needs into their centres. And we were really lucky to have found this centre and principal because they’re so willing and welcoming to Ayaan to this day. I like that his teachers and principal can have discussions with us on how to help Ayaan with his developmental and communication needs, and how they include him in the class activities.
Who would you say are part of your support system? Are you a part of any support groups?
We actually are in a WhatsApp group of parents with kids with Down syndrome, where we share about our kids and information that might be useful for one another. I find that it’s been very helpful and it makes us feel less lonely because we are all going through somewhat similar experiences. Besides that, our family and friends are also always ready to help.
What’s one thing about children with Down syndrome that you wish more people knew?
Children with Down syndrome are just like any other neurotypical child, and that they are their own individuals. They might take more time and need more help to reach their milestones, but they will eventually get there.
What are your hopes and dreams for Ayaan?
Our hopes for Ayaan is for him to be able to do what he wants to do in the future. We hope that he grows up to be kind and empathetic to those around him.
What advice would you give to other parents who have or may be expecting a child with Down syndrome?
I would say have a good support system and take it one day at a time. It might get challenging sometimes, but enjoy the journey together because it is so worthwhile.
Thank you for sharing your story with us, Hidayah and Ayaan! Wishing everyone a wonderful Down Syndrome Awareness Month!
