by Ashley Pang
My name is Ashley, and this is the story of my son, Alex, a 12-year old boy with Down Syndrome. Alex came into our lives in a dramatic fashion, and right from the start, we had plenty of challenging times. But we have come a long way since those difficult early years.
As we grew along with him, our story together became one of hope, resilience, and yes, lots of joy. As part of IBU’s Down Syndrome Awareness Month, I would like to share the lows and highs of our life with Alex.
Let’s take a trip down memory lane and start from the beginning.
What is Down Syndrome?
Down Syndrome is a condition (NOT a disease) where a person is born with an extra copy of chromosome 21. Every child who has the condition is different from one another, but they all share developmental delays as a key common trait.
Today, there is a lot of material on the Internet about the condition, as well as all the measures available to help a person with Down Syndrome live happy, productive lives, realise their aspirations, and become valued members of their communities.
Some other great reading resources about Down Syndrome include:
Alex’s Birth Story
Alex during the newborn days
My husband Bruno and I already knew there was some abnormality with the fetus, early on in my pregnancy. But we didn’t know he had Down Syndrome until he was 10 days old, when we got the official diagnosis.
That was one of the most intensely emotional periods of our lives.
We had been abruptly thrust into new parenthood when a routine prenatal checkup suddenly became an emergency C-section, ending with us welcoming our firstborn into the world way ahead of schedule.
On top of that, Alex was born with myriad issues including a heart condition, blocked eye ducts, low muscle tone, neurovision challenges, and just one functioning kidney.
So when we heard the news, all I felt in those first raw hours was shock and sadness. I remember leaning against Bruno and crying what felt like a whole bucket of tears. On his part, he took it calmly and was my pillar of strength.
Growing up with Alex
Alex has always had a happy disposition!
Indeed, we needed all the strength we could summon for the first few years of Alex’s life. He struggled with developmental delays in many areas, including with his gross motor movements, feeding abilities, speech development, physical coordination, and sensory reaction to his surroundings.
He also experienced abnormal sleep patterns, which included multiple night wakings, sometimes with night terrors as well. Thinking back, Bruno and I were pretty much high-functioning zombies for the first few years!
We adapted to our little boy, and grew to understand him well. Alex absolutely thrived on a strict routine, and this meant eating and sleeping at the same time (regardless of time zones!), doing the same daily activities and eating the same food.
Family holiday travels were akin to moving house for us, because we would have to pack a lot of extra clothes (he would throw up after each meal when he was younger), extra food, have a fully-stocked medicine box on standby, as well as his regular activity packs.
And when it came to dietary challenges, well, Alex had rather severe solid food rejection. He refused any kind of solids, so I had to cook, puree, and freeze his food, whenever we had to travel.
But you know what? In hindsight, I realise now that this particular challenge was a blessing in disguise for us.
Because I had to pull out all the stops to find creative ways to introduce solids to him, this process transformed me into a better cook, and a more creative baker. Little did I know how important this skill would become in a few years time!
MCO Blessing in Disguise
While we understood the necessity of strict movement controls back in 2020, it was a nightmare for our routine-loving Alex.
We couldn’t bring him for outdoor activities, or his regular therapies. Confined to the house, he started to throw things out from the windows and balcony. He once managed to “escape” from our building’s common area (during the CMCO) but we soon found him with the help of our neighbours.
Juggling full-time parenting with self-employment was incredibly tough. But something magical happened during one of his online learning sessions. He learned to bake soda bread with his teacher, and it was the first time he had EVER enjoyed playing with dough.
From there, we further improved upon the recipe and started baking bread regularly for our own consumption, with Alex joining in on each baking session.
It turns out, bread making is wonderful for purposeful occupational therapy, executive planning skills, self-regulation (at the beginning, we had flour all over the place when he became frustrated), speech development (we chat a lot during baking), and concentration training.
Birth of Alex’s Bakery
Baker Alex about to make some delicious banana muffins
On May 1st, 2021, we launched our home training bakery, called Alex’s Bakery, featuring our budding young baker. We planned to sell bread to friends and neighbours, as well as use the Facebook page to share Alex’s life story.
The proceeds from the baking went to raising funds for a non-profit school. And from one single cause, we somehow ended up completing 15 community projects within 12 months!
We raised funds for KDSF and various other NGOs, and also sent out Happy Packs filled with fun items for children with cancer at several public hospitals. This was part of Alex’s Project Kindness to help others whenever we could. Honestly, we were amazed at what we accomplished in that year and very inspired to continue our efforts.
During this time, Alex also completed two personal projects. He bought his very first laptop after working and saving for 11 months, and he paid for his first school residential trip.
That's a lot more than what most regular 11-year olds achieve, and we are proud cheerleaders for his ambitions.
Treadmill Success!
MCO Milestone: Learning to use a treadmill with Daddy!
Physical training has always been a big part of Alex’s therapies. We often experiment with new methods to see what will hold his interest and acceptance.
Besides weight training sessions with Bruno, we decided to try teaching him how to run on a treadmill during the COVID-19 lockdowns.
We got the treadmill second-hand and started lessons. Today, Alex is able to run a personal best of 1.6km in 12 minutes. 🤩
It’s a big deal for us - he never crawled as a baby, and only walked at 29 months. He also had difficulty climbing staircases due to knee lock and neuro vision (which we discovered when he was 8 years old) challenges.
Preparing Alex for his Future
Alex with his primary years Graduation Certificate, Oct 2022. He will move on to a 4-year
pre-TVET (Technical & Vocational Education and Training) programme next.
Today, Alex is a happy-go-lucky 12 year old, an incredibly loving and caring son who is unreserved with his hugs and kisses. With the birth of my daughter Clarissa in September 2022, he has blossomed into a proud and attentive big brother.
However, an inescapable reality and major concern of parents with special needs children is this: How to ensure our child is independent and can look after himself or herself after we pass away?
For our part, we are taking proactive steps to prepare him for the future. We taught Alex various living skills including baking, and now Alex’s Bakery sells bread, muffins, cookies, and tarts. We introduced entrepreneurial skills to him with an online merchandise store, so he could use his artwork to create practical merchandise.
Part of the revenue will go to supporting NGOs focusing on special needs children and those with life-limiting diseases. The remainder is used for Alex’s periodical Project Kindness, and for his savings.
We hope that he will soon be able to manage his own website and online store using the lessons he has received from school.
One of Alex’s dreams is to go to University. He knows that Down Syndrome does not define him, it is just a part of who he is.
A Message of Hope & Inclusion
Bruno, Alex, and Ashley celebrating Valentine's Day 2021
Since we started sharing his life journey via Alex’s Bakery, we have received numerous positive messages from parents of special needs children, especially those who have newborn or very young children, and are neck deep in the challenging early years.
To them, I would like to say, you can do this. You are not alone. There is a growing inclusive community who stands ready to support you, and a growing public awareness and acceptance about people with Down Syndrome.
We are very fortunate and grateful for the great community we have. When Alex was younger, we used to bring him to IBU House for activities. He has always been loved and well taken care of by his teachers, neighbours, friends, and even their parents. Acceptance and inclusion mean a lot to children born with special needs.
How can YOU be part of an inclusive community? It’s simple:
Be a friend to someone with different abilities/special needs.
Involve those with different abilities/special needs in daily activities and give them job opportunities.
Understand and accept their developmental delays and differences.
Educate others, especially children, about the importance of an inclusive community.
Bruno and I hope to see that every child who is born differently abled will be given an equal chance to try and excel in life. We hope our story helps you, whether you are in the midst of dealing with what we have, or just an onlooker looking in.
Thank you for reading.
UPDATE 2023
To teach Alex independence, to encourage his entrepreneurship, Alex's parents recently started the Alexo Store, merchandise with his artwork. Proceeds of any sale goes towards the Kiwanis Down Syndrome Foundation National Centre (KDSFNC) and other NGOs that support special needs children.
To purchase the merchandise, click here
*All photos belong to Ashley Pang and are used with her express permission.
Comments