Motherhood means something different for everyone. There are no right or wrong answers when we try to define what a mother is, and what motherhood means to someone. For these four ladies, motherhood certainly took a different and an unexpected turn. Yet, they each took it in stride.
They are the epitome of grace, resilience and unconditional love. Siew Phaik, Hanizan, Cordelia and Zaharah were among the recent recipients of the Anugerah Ibu Kiwanis 2024, an initiative that honours mothers who have children with special needs. These are their stories:
1. Siew Phaik and Kenny: Learning to Embrace Life
Kenny Loke Downe’s journey, as shared by his mother, Professor Dr Loke Siew Phaik, is a testament to resilience and the power of support systems. It underscores the importance of acceptance, faith, and continuous efforts in overcoming challenges. Kenny’s progress and contributions to his community inspire a message of hope and determination for all families navigating similar paths.
Kenny’s current endeavours
Kenny Loke Downe is currently a café trainee at Ray of Hope Ipoh. His work extends beyond this role as he actively contributes to Keen’s Lunchbox and Keen’s Cookies, a home-based business run by a girl with autism. His involvement in these ventures showcases his dedication and ability to integrate into different work environments.
Navigating the challenges
Kenny’s primary challenge lies in his expressive language difficulties, which significantly impact his social skills. His sensory issues manifest through behaviours like rocking, hand shaking, and jumping, especially noticeable when he was younger. These behaviours sometimes draw unwanted attention and stares in public. However, social stories have been instrumental in helping Kenny adapt to new environments and experiences.
Despite ongoing efforts to develop his expressive language, Kenny mainly communicates using words and short phrases. A special routine before bedtime includes reading and singing, which encourages him to open up and engage in conversations. Questions like “How was your day?” or “What did you do at school?” help him articulate his thoughts and experiences.
Lessons from the journey
Parenting Kenny has taught his family profound lessons about life’s unpredictable nature. Acceptance, although a tough lesson, is essential. The journey has its ups and downs, and leaning on faith and gratitude has been pivotal. Embracing every moment and striving for a meaningful, fulfilling life despite challenges has become the family’s goal.
Acknowledging the struggles
His mother shares that her hardest moments have involved witnessing Kenny’s struggles. “It is heartbreaking to see him trying so hard, while his disorder or disability limits his progress. The love and support offered can’t eliminate the challenges he faces, making these moments particularly painful,” she adds.
A message to other mothers
To mothers striving for inclusion for their children, the message is clear: be strong, courageous, and resourceful. Taking the first step to seek help, connect with others, and try new approaches is crucial. If efforts are not made, opportunities for success remain nonexistent. Advocating for inclusion requires resilience and determination, but the rewards of seeing your child thrive in a supportive environment are immeasurable.
2. Hanizan and Alya: A Journey of Inclusion
Alya is a vibrant and healthy adult who, despite having an average weight and no conditions like diabetes or heart problems, has faced significant health challenges. In 1998, in England, Alya contracted a severe case of pneumonia, which led to complications requiring the insertion of many catheters in her right leg. Unfortunately, this resulted in the loss of circulation and necessitated the amputation of her leg above the knee. Today, Alya uses a prosthetic limb. Her mother, Hanizan binti Husin, shares more about their journey together.
Tackling early challenges
Even though Alya faced early life health challenges, she has shown remarkable resilience. When she was just three months old, she was enrolled in an infant stimulation programme by the Kiwanis Down Syndrome Foundation (KDSF) in Petaling Jaya for rehabilitation. Hanizan, who was the former President of the Down Syndrome Association of Malaysia, worked closely with fellow parents like herself, and ensured that Alya was integrated into society and educational settings from a young age.
By the age of two, Alya was participating in programmes designed for children with Down’s Syndrome. These early interventions laid a foundation for her continued growth and development. The organisation not only supported children with Down’s Syndrome but also provided counselling and activities for their families, creating a robust support system that included strategic partnerships with government agencies, corporations, and individuals.
Family support in navigating life
Alya has successfully navigated her adult life, maintaining her independence and communicating effectively with those around her. Being the sixth child in her family, she benefits from the understanding and support of her siblings; three brothers and three sisters. They have learned to understand her needs and abilities, treating her with the special care and discipline required for her to thrive.
Despite her disability, Alya leads an almost normal life. Her family has been a pillar of support, ensuring that she receives fair treatment and opportunities, just like any other family member. This fairness extends to all the grandchildren and nephews, fostering an environment of inclusion and understanding.
Involvement in school and community
In school and various community activities, Alya has been an active participant. Her family ensures that she contributes meaningfully to any situation, teaching her to accommodate others while also managing her own unique needs and occasional tantrums, which are typical for individuals with Down’s Syndrome at any age.
The journey of inclusion for Alya has been broad and multifaceted. It involves assessing her abilities and supporting her interests, giving her explicit roles, and ensuring that teachers and trainers understand her specific needs. It’s about character-building and showing the community that individuals with Down’s Syndrome have the right to be included and highlighted.
Alya’s story is a testament to the power of resilience, family support, and community inclusion. Her life journey illustrates that with the right support and opportunities, individuals with Down’s Syndrome can lead fulfilling lives, contributing positively to society and overcoming the challenges they face.
3. Cordelia and Patrick: A Story of Hope and Advocacy
Cordelia Lee relates her journey of raising a child with multiple health challenges, and has become a beacon of hope and advocacy for others. Her story, marked by strength, creativity, and unyielding love, offers valuable insights into navigating life with a child who has special needs.
Patrick’s current health and challenges
Patrick is a lively, talkative, and healthy child who loves painting, singing, dancing, and running. He has collected over 25 finisher medals in the past year alone. Curious about life, he frequently asks his parents about various aspects of life and human behavior.
Patrick is a liver transplant survivor since 2019 and has regular follow-ups at the University of Malaya Medical Centre (UMMC) in gastroenterology, ENT, dental, and cardiology. Recently diagnosed with dyslexia, he postponed his primary education to attend dyslexia therapy sessions. Observations suggest he may have mild ADD/ADHD and possibly mild autism, which are under further investigation.
Overcoming difficulties as a mother
The hardest moment for Patrick’s mother was the fear of losing her child to his health condition. Diagnosed with Alagille Syndrome through genetic testing at two months old, Patrick’s severe condition led to a period of depression and hopelessness for her. However, she decided to focus on creating cherished memories and moments of love, meaning, and joy with Patrick, despite the uncertainty of his future.
The power of music
Inspired by her son’s journey, Patrick’s mother began writing and recording songs like “I Love Life” and “Never Give Up” to encourage and empower him. These songs inspire Patrick to appreciate life’s blessings and persevere through his health challenges. Her song “With You and Me” was a comforting reminder of their bond during hospital stays.
“We are the Queens,” inspired by her friend Elena Tong’s journey in the Miss Plus World Malaysia 2022 pageant, celebrates women’s empowerment and marked a milestone in the Malaysian Book of Records for featuring the highest number of women in a female empowerment music video. Encouraged by other mothers, she professionally trained as a singer and released her songs on platforms like Spotify and YouTube Music under the name “Cordi Li.” A new single dedicated to families with special needs children is set to release this year.
Advocacy through action
Patrick’s mother involves him in hospital visits where they distribute handmade soft toys and gift bags to children in the wards. This initiative started when Patrick, at nearly two years old, saw his mother preparing these gifts and wanted to help. Together, they visit paediatric, cancer, surgery, and daycare wards at UMMC, with Patrick often dressed as Spiderman to bring joy to hospitalised children.
This act of kindness instills in Patrick the values of empathy, compassion, and advocacy. Mothers of children with similar conditions often express how seeing Patrick healthy and active gives them hope for their own children’s futures. Patrick’s mother hopes that through these activities, Patrick will grow up to be an advocate for kindness and inclusivity.
A message to mothers advocating for inclusion
Patrick’s mother encourages mothers striving for more inclusion for their children to join NGOs and participate in activities that promote awareness and inclusion. Her son is a member of Little Fighter Runners/Persatuan Pelari Anak Luar Biasa, an organisation that advocates for inclusion through running events. She believes that once children understand their conditions, they can become advocates themselves.
She advises parents to seek understanding and information about their child’s condition through research, support groups, and medical professionals. By educating themselves, parents can better advocate for their children and combat ignorance and misunderstanding in society. Reflecting on what they would want if they were in their child’s shoes can be a powerful motivator for parents. This perspective helps them to fight for their child’s rights and opportunities. Patrick’s mother encourages parents to share their journey openly and learn from others facing similar challenges.
Cordelia’s message is clear: you are not alone. By seeking support, sharing experiences, and staying informed, parents can foster inclusion and acceptance for their children, paving the way for a better tomorrow.
4. Zaharah and Naim: Championing the Cause
Zaharah binti Ali is the proud mother of five remarkable children, ranging in age from 20 to 34 years old, who have all carved out distinct paths in life. Each child brings something special to the family dynamic, contributing their skills and experiences in ways that enrich their lives.
Naim: A vibrant and cherished family member
One of Zaharah’s children, Naim, has Down’s Syndrome, and his presence brings immense joy to his siblings and mother. Naim’s siblings have shown remarkable support and involvement in his care. They demonstrate love, patience, and understanding in ensuring that Naim feels included and valued in their family activities.
Their dedication is evident in how they actively participate in his daily routine, providing assistance and companionship. This support system is crucial, not just for Naim’s well-being, but also for fostering a sense of unity and strength within the family.
Tailored interventions for growth
Naim thrives in an environment where he is surrounded by love and encouragement. He enjoys engaging in activities that bring him joy and fulfilment. While he continues to receive interventions tailored to his specific needs, these forms of support are designed to help him reach his full potential. It is heartening to see how these interventions, combined with the unwavering support of his siblings, enable Naim to grow and flourish.
Hope for Naim’s future
Zaharah’s hope for Naim’s future is filled with optimism. She aspires for him to continue growing, learning, and experiencing the multitude of opportunities that life has to offer. She envisions a future where Naim can lead a fulfilling and happy life, surrounded by individuals who appreciate and embrace his uniqueness. It is her dream that he is met with love and acceptance at every turn, and that the world recognises and celebrates his potential.
A message of solidarity for mothers
To all the mothers out there who are striving for greater inclusion for their children, Zaharah extends a message of solidarity and encouragement. The journey towards a more inclusive world can be challenging, but it is a path worth pursuing. It is essential to keep advocating for children’s rights, pushing boundaries, and celebrating the diversity that makes communities vibrant and dynamic.
As Zaharah shares, collective efforts can lead to significant changes, ensuring that every child, regardless of their abilities, is given the opportunity to thrive. She encourages everyone to continue to champion the cause of inclusion, ensuring that children are seen, heard, and valued for who they are. By doing so, the way is paved for a future where diversity is not just acknowledged, but celebrated.
Motherhood is a long and winding road
For most mothers, our journey is lifelong. We never stop being mothers, regardless of the circumstances. These four ladies have demonstrated amazing grit in their respective journeys. Despite the many life challenges they have faced, they’ve never given up, continuing instead to advocate, not only for their children, but for their children’s community.
We celebrate them, and the power in the community. By coming together with the mission of inclusion, it is our belief that we can make this world a better place.
By Desiree Kaur
Desiree Kaur was in PR for over 8-years until she found her true calling in the education line. After her son was diagnosed with autism, she decided to pursue her Masters in Special Education. She enjoys writing and advocates inclusion for children of all abilities in every little way possible.
