“Kayleen is just like any other 6-year-old girl. She’s bubbly, active, and yet a handful at times. She is loving, sociable, enthusiastic, but she also tests our limits.
She has her good moods and lousy days. She enjoys music and sings along happily even to an unfamiliar tune. She used to love the movie Frozen and would request to listen to the songs over and over again. Her current fave is The Pirate Fairy (a Tinklebell series) which she will get her older brother to put on the TV for her.
Kayleen gains smiles and high-fives from passers-by with her friendly personality. She is generous with her kisses and hugs. She brightens my every day. She is highly in tune with people's emotions and she will always be one of the first to offer comfort when she senses that someone is sad or hurt.
Kayleen has Down Syndrome (DS). She has come a long way, having overcome many big medical hurdles which many of us adults have never gone through. She amazes and inspires many of us who know her personally or have read about her through my blog.
There are five of us in our family – I’m Mary, a secondary school science teacher and I’m currently on no-pay leave as a stay-at-home mom. My husband Chee Young works in the civil service, and we have three children, Kayleen, 6, Lucas, 9, and Charlene, 12.
We enjoy simple pleasures - like a ‘movie night’ at home on Friday evenings with our pillows in our arms, and ‘special nights’ where the kids bunk in with us on Fridays and Saturdays.
We always prayed for a healthy baby even though I had secretly hoped that she would not have the condition at birth.
Charlene, my firstborn, is more mature than most of her peers. She is the big sister of the family and helps to take care of and play with Kayleen. Lucas is the loving brother who annoys his sisters with his high energy. Kayleen, of course, is the baby of the family, doted on by everyone.
Each of my pregnancies was different and more difficult than the one before – this could be due to my age. When I was pregnant with Kayleen, I had very bad morning sickness which lasted the whole day, throughout my entire pregnancy. I had to take anti-nausea pills before my meals so that I could keep my food down.
We were told about the possibility of Kayleen having Down Syndrome (DS) at the fifth month detailed scan. Abortion was never an option, and through my pregnancy, we always prayed for a healthy baby even though I had secretly hoped that she would not have the condition at birth.
Mary tells us about Kayleen’s birth – next!
I gave birth to Kayleen naturally, without an epidural. I was exhausted from the labour and when Kayleen was placed in my arms, the first thought that came into my mind was "hmm, she is not very beautiful, so red and wrinkly!" But I was very relieved to see her behave just like any other newborn.
I wasn't worried about her having Down Syndrome yet, but I did scrutinise her face to look out for the telltale signs, and I suspected she might indeed have it.
There also were more compelling issues to worry about shortly after. I realised she wasn't brought in for breastfeeding like in my previous deliveries. Her paediatrician came to me late that night and informed me that she had polycythemia which caused the oxygen levels in her blood to be slightly lower than the desirable level. She had to be given a partial blood transfusion.
She was diagnosed as having Down Syndrome after an emotionally tiring week of being kept at the neonatal intensive care unit for eight days.
Kayleen's paediatrician had called to confirm her diagnosis, and tears just flowed down my face after the call. I cried inconsolably for a long time because that hope for a "healthy" child was completely dashed.
It took a lot of self-determination to stop thinking of the depressing unknown future and to channel that energy elsewhere in a more constructive way.
I was emotionally drained the entire week after the diagnosis. I would research about DS from online sources. Even while shuttling between home and the hospital to visit Kayleen, worrying over when she would be discharged, and dealing with post-partum hormonal changes, I would read about the challenging or sad parts of the parenting journey, often breaking down in tears.
On the other hand, my husband kept his calm throughout the whole period. Thankfully, he was able to get time off from work to help out at home. Life had to carry on and he tended to the needs of my older ones, as well as sent my breastmilk to the hospital for Kayleen.
The hardest part was overcoming the grief and guilt that I had. It is so easy to blame myself, or blame God when your child is not "normal".
It took a lot of self-determination to stop thinking of the depressing unknown future and to channel that energy elsewhere in a more constructive way. This included learning how to help Kayleen to breastfeed, and how to support her with gaining more muscle function with the physiotherapist's help.
I might have appeared strong outwardly, but I felt so helpless and emotionally drained from all the crying. I hated myself for that. I would cry after reading an emotionally written article about someone's child, or hide in the toilet to cry over nothing.
Perhaps the fear for the future for our family added to the grief. Eventually, I told myself to just snap out of this whole "feeling sorry for myself" state and live my life like how I should.
How did the rest of the family deal with Kayleen’s diagnosis? Read on…
I taught Biology in school, so I knew the basic facts of Down Syndrome, but on hindsight, what I could have done more was to find out about the possible medical complications and what to look out for while I was still clear-headed, instead of waiting till the post-delivery diagnosis.
After it was confirmed that Kayleen had Down Syndrome, I read the children's story We'll Paint the Octopus Red by Stephanie Stuve-Bodeen to my older kids to help them understand that their baby sister is a little different from them. We don't particularly emphasise that Kayleen has Down Syndrome because there is no need to. We play the same way. We talk to them in the same way.
I also read books gifted by my close friends which are written by parents of children with DS. Their stories were so encouraging and inspiring that they made me cry happy tears.
It takes a village to raise a child, and a bigger village with bigger hearts to raise one with special needs. After Kayleen turned one month, we alerted our church community about her condition before bringing her in for Sunday school because the church is like our second family.
Our family’s lifestyle is pretty much still the same as it was before Kayleen’s arrival. We still meet up with friends, bring our kids out to play on the weekends, attend Church weekly. But we are more careful in the places we visit and we try and avoid crowded places. When we know someone nearby is sick, we will move away to prevent Kayleen from contracting the germs.
The only time our lifestyle was drastically changed was between 2013 and 2015, when Kayleen fell ill. She suffered from pneumonia infections three times – once in 2013, and twice in 2014.
We don't particularly emphasise that Kayleen has Down syndrome because there is no need to. We play the same way. We talk to them in the same way.
In 2013, she was rushed to the hospital after I spotted her fingers turning blue. She was so critically ill that we were told to stay close in case she couldn't overcome the ordeal. She stayed in the ICU for 5 weeks.
In February 2014, she required a high risk procedure known as ECMO as a last resort to save her life. Her blood was pumped out to the ECMO machine, a heart and lung bypass machine that takes over the functions of her own heart and lungs, and drawn back to her body. She also required kidney dialysis.
For her third admission, she required very high levels of oxygen and nitrous oxide gases to support her breathing. After being discharged that time, she had to be on oxygen support 24/7, and fed through a feeding tube. That meant that her mobility was affected as she was connected to two machines.
Each time, she was close to death. She needed to be intubated and supported by a ventilator, while being infused with many medications and drugs. Either my husband or I would take turns to stay at home to look after her. We also wore face masks and consciously kept ourselves healthy so that she would not fall sick because of us. It is definitely a huge relief that we are out of that dreadful period.
When she was on tube feeding, she seemed very conscious about herself. She would look down and often hid her face. There were times when people stared rudely at her, maybe out of curiosity, but I didn't think she noticed. But after the tube was removed, the difference in her self-esteem became evident. Her school teachers observed the difference – she became more cheerful and confident.
What challenges do Mary and her family face? Click ahead.
Every child with special needs is different, hence each one has her own unique needs and requirements.
For us, financial support is a challenge. Medical care in Singapore is already expensive for a healthy person, let alone a child with special needs who requires regular medical reviews. Also, a special needs child requires various therapies to support her development.
The strain on family finances is even greater since I have to stop work to provide the best care and attention to all my children, particularly for Kayleen. For now, we save more and are prudent with our spending.
She also has day-to-day challenges, such as in gaining muscle strength and tone for crawling and walking (she has yet to master jumping and running), learning to vocalise and communicate with people, and staying healthy enough to avoid another hospital admission.
Kayleen is 6 this year and soon we will have to decide if she is suited for mainstream primary school education or special needs education. If we decide on the former, I worry because there are limited resources put in place for children with special needs, on top of the heavy education demands they have to meet. Kayleen might not thrive well in that environment. We will have to weigh the pros and cons for each type of education carefully.
I worry about the social stigma that Kayleen may face when she becomes older and less ‘cute’.
Our society has yet to reach true inclusion in every aspect. There is still a social stigma that many hold about people with intellectual disabilities – that they are "mentally retarded" and incapable of doing much. Because of such stigma, access to services, community space, schools and jobs are few.
I worry about the social stigma that Kayleen may face when she becomes older and less ‘cute’. How will people view her? The last thing I wish for her is social isolation imposed either by herself, or by society.
I do what I can to advocate for her and people with special needs through my work at Special Seeds SG, and through Kayleen's stories on my blog. Through these avenues, I hope that at least those around me will see people with special needs in a positive light. It is also comforting to see the recent changes and improvements put in place by our government for people with special needs.
Hopefully, when Kayleen is an adult, the mindsets of our society would have improved so that this world will be a more empathetic and inclusive place for her.”
Mary Heng, 40, a teacher who is currently on no-pay leave, is married to Goh Chee Young, 42, a civil servant. They have three kids, Kayleen, 6, Lucas, 9, and Charlene, 12.
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