A parent’s perspective: a musical journey with our child with special needs
#60Stories
Mrs Novel Chee, 44, shares about her parenting journey raising Heidi – her daughter with musical talents and special needs.
1. When did you learn of Heidi’s disability, and what were your greatest concerns then?
When Heidi was a year old, we realised that her development was not on par with other children her age. She was not able to walk on her own and was only able to mumble simple words. We were not concerned at that time as she was healthy and happy. She only learned to walk when she was 1½ years old and still was not speaking much except mumbling simple words. We became more concerned then. Her paediatrician did a check on her development and referred us to NUH Child Development Unit (CDU). At NUH CDU, we were further referred to a genetics specialist and did a blood test with her. To our dismay, we were told that Heidi has a rare genetic disorder – Williams Syndrome, which may lead to developmental delay and mild to moderate intellectual disability. Our greatest concern at that time was how we can help her and also coming to terms that our child has special needs.
Because of Heidi’s developmental delays, one of our biggest struggles was finding ways to help her bridge development gaps against her progressive biological age. It has been a full-time occupation for me to learn about and look for suitable therapies and classes for Heidi to learn to manage her challenges. From speech therapy to occupational therapy, neurofeedback, and educational therapy, we have to keep up with the sessions and carry out activities at home. All these have been a constant challenge and tiring journey. Even finding a school she can go to daily for her school-going years was difficult. We had to put her through tests and assessments before we could find her a place that she could go to learn in a school setting outside home.
2. When and how did you discover Heidi’s musical talents?
When we attend church, all the children gather in front to sing and dance along to songs. We noticed that Heidi loved the music a lot and was always in the front clapping and singing along. We always arrive early, and Heidi goes to take the front seats to enjoy the rehearsals taking place. Although she does not like loud music, she will insist on staying in the front right next to the drums or the piano. She will memorise and sing along to both Chinese and English songs even though she does not understand the words. We also noticed that Heidi’s attention span is longer, and she is more focused when there is music playing.
At home, she plays the songs she hears in church on the piano and hums their rhythm based on memory. This showed us her love for music, and we signed her up for different classes to give her more exposure to different forms of music. In one of the classes, her music teacher saw that she responded to beats very well and was always on cue. She then recommended drumming classes to bring out this talent in Heidi. Through our support group, we found an instructor who could teach students how to play the piano and drums, and had experience teaching children with special needs.
3. What did you do as a parent to develop Heidi’s musical talents and interests?
We immediately signed her up for an introductory class with the music instructor. We were able to sit in for the 1st session and saw how patient the instructor was and how Heidi was able to concentrate and follow instructions well. We were elated and bought Heidi a pair of luminous drumsticks to reward and encourage her. After every session, the instructor sends us videos on Heidi’s progress. Through these updates, we realised that her talent and strong interest in drumming. The instructor highlighted that Heidi is gifted, very determined and was learning very quickly.
After a few more sessions, we purchased an electronic drum set for Heidi to practice with at home. At home, Heidi gravitates towards her drum set and practises on her own. She puts on her favourite music and plays according to her own style and beat. Before drums, she would restlessly idle about at home. Now, playing the drums keeps her occupied and gives her a way to regulate her emotions.
4. What sacrifices have you had to make to support Heidi on her musical journey and in your journey of parenthood?
Heidi always remembers which days of the week she has her lessons and will eagerly inform us after school about it. We take turns as parents to send her to classes and fetch her home. Raising Heidi is not easy as she does not comprehend certain instructions and it could be emotionally and intellectually draining. Putting away career ambitions, making changes, and becoming a full-time mother to take care of Heidi’s growing needs, our sacrifices are more than just time and finances. But we know that no sacrifice larger than the love a parent has for their child.
So long as Heidi enjoys drumming, we will always be there to support her. We want to expose her to different platforms to showcase her talent.
5. What would you say are Heidi’s greatest achievements in her pursuit of musical excellence?
In 2021, Lee Kong Chian Gardens School (which Heidi attends) organised a talent competition for students in the school to showcase their talents. We were encouraged by Heidi’s teachers to register her for the competition and submitted a video of her drumming to a piece of music she was practising at that time. We did not expect much from it but to our surprise, Heidi was chosen to be in the finals. We quickly prepared her for another song, ‘The Road Ahead’, which was the theme song for National Day 2021. She got instructions from her music teacher and practised daily. She learned different styles and changed styles according to the beat of the song. Heidi was very focused and tried many times to perfect her rhythm and beat. When we received the results of her coming in second, we were all so happy. We were so glad that she gained recognition for the hard work she put in; attaining second place in a talent competition after a short 6 months of drum lessons is not a feat that is easily accomplished.
6. What are your hopes for Heidi’s musical future, and how do you see yourself supporting Heidi’s musical aspirations?
So long as Heidi enjoys drumming, we will always be there to support her. We want to expose her to different platforms to showcase her talent. We have been consistently documenting her progress and sharing videos of her recent performances to her teachers, friends, and the music team in church. We believe that in time to come, she will have the opportunity to perform in front of an audience. We hope that Heidi can contribute to society through her passion for music. May her passion and love for music bring hope and joy to anyone who enjoys her music!
We hope that Heidi can contribute to society through her passion for music.
7. What would you like to share with fellow parents of children with special needs?
Rough seas make strong sailors. We know the struggles of being a parent to a child with special needs and it brings out modesty in us. I have been through many different forms of counselling, many different schools, and therapies for Heidi, but I know not to give up and keep trying. Most importantly, we want the child to be happy and do something that will make them happy. The lyrics from 2021’s National Day song ‘The Road Ahead’,
inspires me to keep on going and persevering. Baby steps will grow into big milestones, and though the future might be daunting, I am sure we will conquer whatever comes next on the road ahead. Our faith gives us strength to keep moving forward.
As MINDS celebrates its 60th anniversary, we encourage a deeper understanding of intellectual and developmental disabilities among the community and caregivers.
MINDS provides a holistic environment and inclusive environment for intellectual and developmental disabilities and is committed to supporting caregivers in their journey of enabling PWIDs to live fulfilling and meaningful lives. Find out more about the programmes MINDS offers to support caregivers here.
Be a friend of our MINDS community! Explore volunteering opportunities or consider donating to our cause.
Follow us on Facebook and Instagram for more stories and updates from the MINDS Community!