All smiles at the dining table before Yee Sang.
- Alexander was born premature
- He survived two serious pneumonia at nine months old
- The reputable Montessori preschool rejected him
- Now he has a home-based training bakery
Lately, I have been exploring and researching about down syndrome, a task given to me by my superior. And I couldn’t help but observe a central theme cropping up from every family who has a down syndrome child. They tend to stay close together, more so than normal families.
Hardship and pain tend to bring people together. A down syndrome child requires more love and attention from their parents, who need to work as one to tend to his or her needs. When we are healthy and lacking the challenges of life, we become complacent, and hence, drift away from each other. In other words, our curse can be our blessing, and our blessing can also be our curse. Perhaps these are the words that best describe Ashley Pang and her family.
I had the privilege to meet them at their home in the living room. And there was Alexander Wilhelm, perched at his mother’s feet. He was all smiles, holding on to her hand as though she would go missing at a moment’s notice.
Ashley was the one who did all the talking, and between conversations, she would glance at her son like a proud mother. I couldn’t help but feel envious of their relationship.
The truth hurts, but living with it hurts even more
Alexander having the best moments on his birthday.
For many families, the birth of a child brings untold joy and happiness. Mother and father get to love and dote over the new baby, and families converge to welcome in the next member of the clan. For Ashley, however, the arrival of her child brought along a tidal wave of emotions.
Alexander was born premature, and after approximately 10 days in the newborn intensive care unit, the doctor identified that he had down syndrome and sought permission to perform a genetic test. Her first reaction at the clinic was a flood of tears.
“Both the doctor and my husband were busy passing me tissue paper. I continued to cry for several weeks. It can be quite bad during the evening,” Ashley said, shaking her head. “After enough crying, I decided I have to be strong for my son and my husband.” With an arm, she drew her son closer to her and rested her cheek on his head. Alexander blushed, squirming against her.
I am a strong proponent of people becoming what they think, and this is true with Ashley and her husband, for this change in mindset changed the course of their lives. Instead of wallowing in self-pity or denial, she and her husband delved into the subject of down syndrome, doing ample research and intervening early on with their son while awaiting acceptance to the Kiwanis Down Syndrome Foundation National Centre.
“I think I can do a PhD out of it,” Ashley said with a laugh, “But back then, about 12 years ago, information in general was negative about someone who is born with down syndrome.”
Thankfully, they were prepared for the approaching storm, for the first five years of their lives were filled with challenges. Alexander suffered twice from two severe pneumonia at about nine months old, but fortunately managed to pull through.
Starting at a small age, Alex is bound to take the baking world by storm.
To make matters worse, the family had to go through the hassle of sending him in and out of the hospital due to heart and kidney conditions or developmental delays. Alexander grinned widely as we discussed his past, which was filled with lengthy medical treatments.
He also required various therapies, such as physiotherapy, occupational therapy, speech therapy, and brain gym, not considering the neuro-vision therapy for the last three years. Back then, he was also a fussy eater due to sensorial challenges and weak muscle tone.
“Now he is a good eater,” Ashley said, casting another affectionate glance at her lovely son, “He eats almost anything I serve now. He trained me to be a very creative chef, a fun and interactive home therapist, entertainer and teacher too.” Alexander nodded his head dramatically while he smiled, acknowledging her claims.
I hesitated, for here comes the toughest question of them all. When the words left my mouth, Ashley pondered for a moment. Her face was slightly down, and I could see that she was trying her best not to cry.
“This question was asked by our obstetrician during the counselling session,” she started. “My answer then was that we would choose not to have him, if we knew about it earlier. Six months after the session, I told my husband one day that I wouldn’t change a single thing, and he is one of the best gifts in my life. This answer remains the same till today. Raising any child is hard work, I must say. Raising a child with Down Syndrome will only make you a better parent and teacher.”
One of the saddest moments she ever experienced as his mother was an upfront rejection by a reputable Montessori preschool. This was done without any form of assessment, but purely due to his look and the condition he was born with.
“That was the first time I felt really hurt, that my son was being discriminated against so unjustly. Luckily a few months later, we found a wonderfully inclusive and very child-centric Montessori playschool for him,” Ashley said, tears forming in her eyes.
The life of the family
The parents who give Alexander the love and strength to conquer all impossible things.
But there was so much love in Alexander. One of the best things is having him open the door and give them a big hug and kiss whenever they return from work or outside. Alex has assumed his role as the family entertainer, bringing great joy and fun into their lives.
“Of course, there were several special moments, such as seeing him walk for the first time at about 29 months and calling me mama at about 36 months,” Ashley said, wiping tears from her eyes. But that changed after the Covid-19 pandemic. Now they only allow him to hug after having changed and taken a shower.
“The morning and evening hugs and lovely kisses we receive daily. That joyful face and attitude of his, those are truly wonderful daily boosters of our lives,” Ashley said, cuddling her son.
Her son is now in year 5, in an inclusion school (a school that accepts and integrate typical children with different abilities children) in KL that follows the British Curriculum.
If he excels academically, then he will continue with his IGCSE pathway like his other friends. Otherwise, he will join a vocational-based pathway. Currently, he has a home-based training bakery, where he practices his living and motor skills while learning to be an entrepreneur.
“We want him to be independent and well prepared for his journey of life. We are still exploring his interest and abilities while exposing him to various opportunities in life,” Ashley said, adding that he has his own bakery. The family has every intention to create a bigger awareness about inclusive community, education and employment for children born with Down Syndrome. Those inclined to follow his development can visit him on Facebook at Alex Bakery Malaysia.
With her intimate experience in raising a child with down syndrome, I couldn’t resist asking her if she had some advice for families who shared a similar fate.
“Believe in your child. If you have a newborn, start intervening early. If you have a child in primary school age, start cultivating their independent skills as soon as possible,” she said. Ashley also advised that parents allow their children to join a local community and become active members of the neighbourhood instead of just being a passive recipient.
“Never underestimate their true potential and ability. Give them your best love and support as parents,” she concluded.
