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Unedited: Life as a parent of a child with Down syndrome

Posted on April 27 2023

As we celebrate World Down Syndrome Day, Motherswork speaks to home baker and founder of Upcakes Aaron Lee, whose seven-year-old son Andrew has Down syndrome.

 

Down syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21.

 

Inspired by his son’s love of food, Andrew and his wife Elaine, started home-bakery Upcakes in 2020 (www.upcakes.sg). He wanted to start a business that not only allowed him to spend more time with his son (as kids with Down syndrome can become more dependent as they get older) but would also be something sustainable that could be passed on to him in the future.While his wife focuses on her full-time dentistry job, Aaron, a former chemical engineer, bakes the cakes and handles Upcakes’ day-to-day operations.

 

Aaron says he hopes that Upcakes can be a doorway for people to see those with Down syndrome in a positive light.

 

Special discount at Upcakes for all motherswork members:

Use code <Motherswork> to enjoy a 10% discount on all purchases made in Upcakes (www.up cakes.sg). Offer is valid until 30 June 2023.

Q&A


Q: What are some fears you faced when you first found out about Andrew having Down syndrome?

 

A: I was worried there would be no future for Andrew. That it would cost a lot of time and money to bring him up and that he would not be independent.

 

Now, though the future is still uncertain for Andrew, we understand that we can’t predict the future for any of our children, so I have learnt to do the best I can with what I have and tell myself not to worry about what has not happened yet.

 

It does take more time and finances to raise a special child, but there is also a lot of support from available from the Government and hopefully with time, Singapore can also grow to be a more gracious society that is more willing to take things slow for those who need it.

 

Q: What are your hopes for your Andrew?

 

I hope Singapore can be a more inclusive society that makes room for those who are differently abled from most of us. I hope that schools will be open to allowing children of all capacities to learn together, not just in academics, but in life.

 

That children can learn to accommodate each other and learn that finishing together happy is better than finishing first alone.

 

I hope that Andrew will make friends who are accepting of who he is, and be willing to offer help when needed. That they will not see him as less-than, but recognise that he is unique just as everybody is precious and unique.

Q: What are you pet peeves on the perception others have about those with Down sysndrome?

 

A: People often confuse Down syndrome with autism. They try to comfort parents by saying that their children will have ‘other talents’. What they don’t understand is that most Down syndrome kids will be slower than the typical child. Whereas with autism, there are some on the spectrum that can be very intelligent.

 

People also often try to comfort you by saying ‘oh but it looks like it’s mild for him’, but actually there is no spectrum of severity for Down syndrome unlike autism.

 

Q: What are some of your biggest challenges as a parent?

 

A: Being patient, because Andrew learns slower than others. He usually struggles with speech too so communication is challenging.

 

We also spend a lot of time bringing him for various medical check-ups, which adds to our busy schedules.

 

It is also tough to remind myself not to compare and feel sad when I see other kids of the same age who are doing so well.

 

Q: What keeps you going?

 

A: Andrew is a joy bomb! His smile can melt a thousand worries.

 

Seeing him make progress slowly but surely, and bringing smiles to everyone around him, also makes the journey easier.

 

My faith in God, who is a good Father, also helps me hold on to hope that it will be alright in the end.

 

Q: What do you love most about your child?

 

Andrew is very affectionate and he forgets his unhappiness very quickly. He does not hold grudges and is always ready to move on to happiness again!

 

He is very squishy (Down syndrome children have low muscle tone), so he feels like a soft baby although he is already seven-years-old! It’s absolutely wonderful to hug him and be hugged by him!

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