Not Just Resourceful: Life as a mum of a differently-abled child

Mothers of modern Singapore have it hard, real hard. On top of being the primary caregiver, they still thrive to do well at work to bring some bread home, amidst fast paced routines, they squeeze in time for grocery shopping, cooking healthy meals for the family and keeping the home clean. Let’s not forget about spending good quality time with their little ones and showing up everyday with a calm and nurturing attitude to be the best role model for their child(ren). Phew we are out of breath already.

This Mothers’ Day Series- Not Just Resourceful shares the parenting journey of power-packed ladies being mothers in different circumstances. Not just your average mums teaching ABCs, these mums swim the deepest oceans and run the extra miles to raise their children. Odds may seem in their disfavours but what are odds? No one has got time to think about that. They make the best of every day like a real superhero.

*Disclaimer: not saying Dads or other caregivers do not have it hard but it is Mothers’ Day so let’s take some time to appreciate mummies of all shapes and sizes out there!

Hi, I am Wei Shi and I am a mum. My son, Elliot, just turned one, and he has Leber Congenital Amaurosis, or LCA, and he is unable to see. 

Here is my story as a mum:

My husband and I found out that we were pregnant in 2019. We have been trying to conceive for a while and this life in my belly made us so happy. I enjoyed a smooth pregnancy, time flew by and Elliot arrived. He passed all medical checks and we brought him home- ready and excited for our lives ahead.

Three months later, through our interactions with Elliot, we noticed that he was not smiling nor was he looking straight at his toys. As new parents we did not think twice and brushed it off as a delay in development. He will catch up eventually!

Not until one playdate with a friend and her child, same age as Elliot that we got a lot more concerned. Call it mother’s instinct, Elliot’s behaviour felt different, and it was time we visited the paediatrician.

We were referred to several checks and it felt like forever before the results came in. Reality kicked in. Elliot was diagnosed with Leber Congenital Amaurosis, which causes an early onset of visual impairment in children.

Time to hustle!

My husband and I immediately started doing as much as we can to help Elliot develop. We researched hard and fast, we read articles, we googled for resources locally and overseas. We reached out to many agencies and as many contacts as we can to understand the situation thoroughly. 

But we all know, there will always be some nights, when we look at Elliot sleep and couldn’t not cry hard thinking about the what-ifs. 

Once the next day began, our practical sides started work again. We connected with communities, we joined numerous mailing lists of relevant agencies, we arranged for meet ups with visually impaired individuals to understand what growing up was like to them. We also met parents of children with visual impairment to learn from their experiences. I’m so thankful for their willingness to share. Hearing their stories taught us so much.

My motivation:

ELLIOT! Watching him progress through therapy sessions and developing new skills through audio and tactile stimulation- that really motivates me. Elliot has taught me so much. He has altered my perspective and my biases as an adult born with five sensory inputs. His growth has brought me that much needed “aha!” moments that Elliot just requires a different way of learning. He is just like any other kid. 

My day goes like this:

I work full-time so together with my Mum, we take care of Elliot in the day. Thankfully, I get to work from home at the moment and spend mealtimes with him.

With the free time I have in the evenings, I try my best to help him with physiotherapy and other developmental activities that we have learnt from his therapy sessions. To me, doing something is better than nothing so I squeeze in as much time as possible to be with him.

Me now vs Me then

After Elliot got diagnosed, I knew work cannot be my utmost priority. Elliot needs me more than work does. I work hard but at the back of my mind, I know I cannot just focus on work all the time anymore.

It has also made me see special needs differently. I used to not pause to think about it, and I know many who still do not, and I do not blame them. It is only with exposure to Elliot’s condition then was there awareness, then empathy and a deeper understanding of people with different needs and abilities.

My hopes for my son and for society:

For him to lead a fulfilling and purposeful life! I know discrimination may happen, especially harsher in his teenage years but I wish he will be a confident person, overcoming those challenges and not be defeated by them. 

I wish for society to recognise that people with special needs are different and not incapable. I wish for society to be more inclusive as a whole, which could translate to equal opportunities for people with disabilities in terms of education, employment, etc. Things have improved in Singapore over the years, but I wish for us to become a more inclusive society.

An example would be the normalisation of a guide dog. While guide dogs are permitted at public places, they are still commonly turned down by shops and private hire drivers with the view that they are “pets” that should not be allowed entry.

They are in fact essential companions to enhance the safety of our friends with visual impairment.

Hello Mums out there in similar circumstances!

I believe the first step is to agree on the same goals as a family. For us, our goal is to help Elliot achieve what he hopes to. By having a common goal, we would minimise disagreements on our plans for our baby. Just like how we reached a consensus to accept this interview readily, as we want to work towards advocating for greater awareness for a more inclusive society. More importantly, the unity of the family will make your kid strong!

To be a friend to Wei Shi and to join her in her journey of motherhood, add her on instagram at @blindandshine

Written by our volunteer writer, Valerie Ong.

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