Having a child with a disability can make parenting different. Some mothers in this situation may not have the opportunity to hear their children call them “Mummy” or tell them “I love you”. However, the profound bond between mother and child is a silent language of unconditional love. We heard from SPD Sheltered Workshop trainee Wai Heng, who has Down syndrome, about how she has already given her mother, Mdm Margaret Yong a Mother’s Day card ahead of this special day. Similarly, Ilhan, who was diagnosed with autism spectrum disorder and was formerly enrolled in SPD@Bedok’s EIPIC, shows his love to his mum Mdm Farah Juwita in his own special way.
UPDATES reconnects with mothers Mdm Yong and SPD Inclusion Champion Mdm Farah to find out what Mother’s Day means to them.
UPDATES: How has your journey as a mother been?
Mdm Farah: I was not expecting to become a mother at a young age and the journey was challenging. Although I had no idea what I was doing at the beginning, I’ve grown to embrace and enjoy motherhood. Being a mother teaches me new things every day, particularly in multi-tasking. Motherhood has also taught me patience and resilience. Even though my journey has not always been smooth, being a mother is so fulfilling as I have my kids, who are a blessing to me.
Mdm Yong: It has been a hectic journey and full of never-ending worries, but it is also deeply fulfilling.
UPDATES: How did you feel when you found out about your child’s diagnosis? What did you do after?
Mdm Yong: I received the diagnosis on the same day that Wai Heng was born. I recalled being frightened and nervous – I was not prepared at all. I was also unsure if I am equipped to provide the care a child with Down syndrome requires. Prior to having her, I never had prior interactions with children who have special needs. I proceeded to find out as much as I could about this condition and how to best care for her.
Thankfully, we were lucky that after a few months, the Down Syndrome Association reached out to us and they provided support and a sense of community. They knew it was important that we didn’t feel isolated or alone in this. I became the 74th lifetime member and we subsequently joined many group activities with her peers with Down syndrome.
Mdm Farah: When I was first informed about Ilhan’s diagnosis, I was heartbroken and devastated. Along with it came the mum’s guilt. I asked myself questions like what did I do wrong, what should I have done etc. I broke down and was crying every day and night. At the same time, I was lost. I didn’t know who to approach, where to get support, or who could answer my million questions. I was blessed that I have my supportive husband and kids who patiently walked the journey with me. We were so lucky we didn’t have to wait long to get an EIPIC placement for my son. SPD@Bedok opened their doors and windows for my family. There, my son was welcomed, my questions were answered, and I felt truly supported.
UPDATES: Can you share with us some of the challenges faced?
Mdm Yong: When Wai Heng was younger, she would throw tantrums frequently. On bad days, she would sit on the ground in public for up to 30 minutes, not willing to move. Those were really frustrating times.
Mdm Farah: One of the main challenges when I first found out about Ilhan’s diagnosis was the lack of knowledge and information on autism. I did not know how to support my son and what to expect. SPD@Bedok shared with me resources and encouraged me to attend talks and training so that I could be a better caregiver for my son.
Another challenging issue that we are still facing up until today is communication. As Ilhan is mostly nonverbal, it can be extremely hard for him and us to communicate and understand one another and that can sometimes lead to frustrations for both parties. Although it has definitely improved a lot over time with training, support from teachers and speech therapists, and also the aid of communication devices. Of course, there are other challenges but we will usually try to work things out with the support of professionals. For instance, Ilhan used to be unreceptive towards trying new food. As he would only eat home cooked food, we couldn’t have family meals outside. SPD’s speech therapist worked with me to coax Ilhan into being open to try new dishes. Now, Ilhan is a foodie and is always open to try new cuisines!
UPDATES: With bad days, there are definitely good days. Can you share a memorable experience that you’ll never forget with your child?
Mdm Yong: Wai Heng is part of the YMCA Y-Stars group. I am extremely proud of her, especially when I watch her dance performances. In those moments, I felt that my efforts were worth it, as I witnessed what she was capable of and was enjoying her time on stage.
Mdm Farah: There have been many memorable experiences with Ilhan such as our movie outings and karaoke sessions. However, there was one experience that I would never ever forget. I was discussing with his teachers on how we could push Ilhan out of his comfort zone further and proposed to bring him to the Geylang Annual Bazaar. Most people know that such bazaars are hot and crowded, with loud music blasting throughout. On that day, I was so anxious and nervous. Armed with a pair of noise cancelling headphones, we went to the bazaar. To my surprise, Ilhan loved it, especially the atmosphere! He even shopped for snacks and finger food, and insisted on walking around the whole bazaar before finally heading home. It was definitely an experience that I would never forget.
UPDATES: If you can give one advice to your past self, what would it be?
Mdm Yong: To press on and persevere, especially during tough times when you feel like giving up – it will all work out for the better.
UPDATES: What is one advice that you’d like to tell other moms of child(ren) with disabilities?
Mdm Yong: It is important to get them to be socially active and interact with other kids. They should have ‘normal’ experiences like you and I, and not be regarded and viewed as different. Most of all, to have love, patience, and kindness for your child and for yourself.
Mdm Farah: I think the most important thing that I’ll remind other mothers of children with disabilities is that you’re not alone in this journey. Reach out to teachers and professionals who will gladly share strategies and knowledge with you. Find support from fellow caregivers who are on the same journey as you and they will be most willing to share their experiences, tips, resources etc. Seek a listening ear from your family or even close friends as they will be willing to help you out so that you can take a breather or have some self-care breaks.
Here are Wai Heng and Ilhan wishing their mums, and all mothers, Happy Mother’s Day!
