be the writer of the lives we choose to live by - By Diana Lim
“Only we ourselves, can be the writer of the lives we choose to live by. As a special needs caregiver, I choose to embrace it with an open mind and a willing heart.”
When my elder son was born, the entire family was practically on cloud nine as he was the golden grandson, the precious one. Any hint of suspicion that this precious boy might be facing any developmental delays or falling out of “range” was brushed aside. However, as the issues persisted, the instinct to quickly start speech therapy, occupational therapy and customized educational program took over. Imagine doing all this while holding a big tummy with number 2 in tow…
I would never have imagined that I would be blessed with not one, but two special needs children!
For many of us who often questioned why our child is so different from other special needs kids, take it from me when I say that autism is indeed a broad spectrum. With the same home and school environment, same parenting style, the two brothers were polar opposites when it came to their tolerance level to schedule changes, learning preferences, cognitive abilities, and many others.
I’ve since then learned to unlearn the so-called correct ways of handling autistic challenges. To put down my expectations as a mother so deeply invested in their well-being. To let them be themselves so they can gradually carve their unique identity as special individuals in spite of their neurological impediments. To have a willing heart, and an open mind.
These are some pointers that I can share as a caregiver, someone who has been blessed with good spousal and family support, practical and emotional resource pool, as well as a great network of people who simply understands.
- Always look for the simple things to be thankful for despite how the day or ‘night’ has turned out to be.
- Learn from others to see if their strategies are applicable to our children/dependents at their current stage. At other times, be ready to let go of things which do not fit into their psyche.
- Find several support groups that can serve various needs – it can be like-minded friends, parents support groups, playdate groups, hangout groups, etc. And just like friendships, they may come and go as our seasons of life change. It’s okay; be open to forming new ones.
- It’s okay to not be okay. It’s absolutely normal to feel vulnerable. By being able to rough out bad times and reach out to lifeline help available to us, we are in turn building our own emotional resilience. Imagine what a good real-life experience it would be when we share how we coped and learned from our past experiences with our special needs loved ones!
As special needs caregivers, conquering the day is not always about this amazing feat or that significant improvement. It is more often than not, being able to achieve some form of peace in the never-ending daily noise and action.
For all the caregivers out there, we see you care. And we care for you, too. For all the professionals who are out there, thank you for coming together with caregivers to learn and grow together.
A wonderful 3,000 caregivers and their loved ones joined us at the CARECarnivals, at Enabling Village, Kampung Admiralty, Heartbeat@Bedok
Practical tips to help caregivers and special needs children transit from preschool and EIPIC to primary school
The Purple Parade 2023, held on November 4th, was a heartwarming celebration of inclusion and support for individuals with special needs, their caregivers, and supporters.
You cannot pour from an empty cup; self-care is a necessary part of being an effective caregiver. It is perfectly okay to pamper yourself to something you’d like to do, prioritise rest and lean on others when you feel weary.