29 June 2011
28 June 2011
A trail of illnesses and broken pathways...
A trail of illnesses and broken pathways…..
When Min was born, then when May regressed and eventually Min too regressed, we needed all the help we could get. We were always a little bit envious of parents who didn’t need a maid, we couldn’t cope without one. Well, we could. But we’d be exhausted, the house would be in shambles, the girls would be neglected and we wouldn’t have the energy to nurture our marital relationship. Mums who do it all leaves me feeling just a little bit ineffectual, though I know that it’s because their children are easier. As a friend said, my 2 girls were the equivalent of 4 boys. 4 boisterous, hyper, angry boys. That was one of the sweetest things anyone has ever said to me, because it validated what I felt at times. When it got too overwhelming and the feeling of despair because I couldn’t manage just one small child.
Sitting on the pier
So for us to go on the family holiday together, without a maid and actually enjoying ourselves was an entirely novel experience. There was no stress, no anxiety and no dramas. We coped very well, we didn’t miss the extra pair of hands and no one cried. We followed the natural rhythm of island life and chilled out. Just like what a vacation should be like. One day, after a rainy afternoon, the hugest and most glorious rainbow came out, rising out of the ocean. It brought to mind the first rainbow Maya ever saw in Singapore. That fateful day when May said “Look Mummy, there’s a rainbow in the sky!”. We sat at the pier and watched the rainbow for the longest time.
3 island beauties
I am eternally grateful for where my girls are right now, their future is brighter than anyone ever thought possible. But it tears me up that they are so sick so often. They never seem to get a break healthwise. Many are under the mistaken belief that everything is rosy perfect in our home now, because the girls no longer have autism. Yet I still feel like I’m fighting a dirty long drawn-out war even though both parties have called truce. The clean up job is taking longer than the actual war.
I’m mindful of friends with young babies, most of the time I have to cancel a playdate because one of my girls are always either just about to fall sick, are in the middle of an illness or just recovering from one. I wouldn’t want to pass on the virus to another child, I feel a strong social responsibility. I absolutely hate it when people come to my home or a social gathering and don’t have the decency to mention that their child is having a high fever or the flu. Though dragging a young child around town when he is sick boggles my mind. Or worse, when they themselves are sick and they try to kiss and hug my girls! A little bit of common sense goes a long way ya know?
Feeding the fishes
Anyway, with the girls’ impaired immune system, every little infection turns into a long drawn out period of illness, more often than not turning into more severe infections. If we’d exercise a bit more hygiene practice, perhaps we will need less vaccinations. After all, most of these infections occur through contact or airborne transmission. If you or your child are sick, stay home. Please don’t send a snot-bucket, drippy-nosed, hacking up, vomitting, feverish, phlegmy kid to school.
We are now doing classical homeopathy after a brief fling with functional homeopathy and no longer do any diets or biomed supplements. I can’t predict whether it will be 100% successful, just as no one can predict if a particular course of treatment will work for your child. I have a sinking feeling that at some point I may have to crawl back to mainstream allopathic medicine or biomedical sciences. But for now, I have to hang on and stand true.
Min has been battling a cough for the past 2 months. Allopathic medicine gives me the shudders right now, it’s at the point where all we hear are steroids and the dreaded word ‘suppressing’. As if suppressing the immune response is something to be proud of. I feel that I’ve tried everything, though I know I haven’t. Can you just hear the exhaustion in my voice?
Getting a foot massage
As a mum I will continue to seek better health for my children. Yes, they are recovered from Autism the diagnosis. But no, they are still a trainwreck of immune dysfunction, gastrointestinal disorders, respiratory illness and failure to thrive just to mention a few. No more worries about language, social impairment or cognition though- must remind myself to count my blessings every single day. But still a bunch of health issues, which if left unchecked will give rise to bigger and more serious medical illnesses. The healing is taking a long time, it requires more work and cracking my overburdened mind for inspiration and smarter solutions that most times are hard to come by.
I don’t have the luxury of wallowing in denial, in disbelief, in remorse or the myriad of emotions we are flooded with daily. If I could, I would hand over the care of the girls’ health to someone better, smarter, stronger. But I can’t, I’m their mother, it is my sworn duty. I can’t wait until I get a 100% endorsement from whomever, to guarantee me that a particular treatment will work. No one can predict the future. For better or for worse, I keep trying. Even when Autism still kicks us in the ass. I pick myself up and I keep going. For the sake of my children.
I am still fighting for the girls’ better health, constrained by geography, bureaucracy, finances and personal conflict. In spite of all that, I will never shortchange my daughters, they deserve the best. If we can beat the autism diagnosis, we can beat the medical fallout that autism has left us.
As a Warrior Dad friend recently wrote, Autism leaves a trail of ruined memories. Another Warrior Mum said that her husband can’t get in touch with his sadness, for it feels bigger than an ocean. For me, I haven’t had the time or the energy to look back at the collapsed hopes and dreams that I had for my girls. What I see is a trail of illnesses and broken pathways…..But I force myself to look away from the destruction that Autism has left us. For right now, they are sitting quietly and drawing together. They are happy, contented and wonderful little girls. It’s a beautiful day. Until nighttime, when May’s anxiety and negative thought process comes to the fore (again) and Min’s coughing and congestion is so bad that I fear one night she won’t be able to breathe. And I’m back looking at the trail of illnesses and broken pathways…..
22 June 2011
A Silent Walk in the Night
Thursday June 23, 2011
Walking in solidarity
CHILDREN and youths with learning disabilities will walk together during “A Silent Walk In The Night” event on July 2.
To be held at Central Park Bandar Utama 1, the focus of this event is to celebrate milestones and help integrate special children into the community.
The event is organised by volunteers made up of care-givers, educators and members of the public, with the support of Dignity and Services Bhd, an advocacy movement for persons with learning and intellectual disabilities.
All smiles: Yim (centre) with special children at a performance recently.
Calling themselves “Raise Voice @ Dignity and Services”, the volunteers want to emphasise on reinforcing awareness, greater support for consultation and advocacy, more interaction with special children and parents/care-givers, and fundraising — for continuous awareness programmes like this.
“Through an event such as this, we wish to remind society that these children with their own aspirations can shine brightly if given a helping hand,” said Rebecca Jane Thomas, an educator who works with children with learning disabilities.
“We all have a responsibility towards creating a change and making a difference in the lives of special children.
“The struggles and difficulties faced by this community and their care-givers cannot be ignored.
“We should strive more to empower and integrate them into society.
“The walk provides an opportunity for everyone irrespective of age, colour, creed and status to participate, emphasise and get to know children and youth with learning disabilities.
“Anyone who has a heart can participate and by doing so will be supporting caregiving, education, advocacy and research,” she added.
“A Silent Walk In The Night” will showcase several musical performances by special children.
There will also be entertainment by guest artiste Brian John Yim, games, creative and educational activities.
The carnival-like atmosphere will kick off with registration at 3pm and finish at 8pm.
In the last hour, there will be a 60-minute walk in silence with lights such as candles, lanterns or torches to show support towards enhancing the lives of children and youths with disabilities.
Prizes will be given to the most creative lights. To participate in the walk, the public have to pay a minimum registration fee of RM10.
For details, contact Rebecca Jane Thomas (016-220 7091), Neena Raina (017-875 9456, Chrissy Loh (012-267 1783), Aishath Amira (012-350 9362 or Vanaja Dhanan (012-219 8161).
Walking in solidarity
CHILDREN and youths with learning disabilities will walk together during “A Silent Walk In The Night” event on July 2.
To be held at Central Park Bandar Utama 1, the focus of this event is to celebrate milestones and help integrate special children into the community.
The event is organised by volunteers made up of care-givers, educators and members of the public, with the support of Dignity and Services Bhd, an advocacy movement for persons with learning and intellectual disabilities.
All smiles: Yim (centre) with special children at a performance recently.
Calling themselves “Raise Voice @ Dignity and Services”, the volunteers want to emphasise on reinforcing awareness, greater support for consultation and advocacy, more interaction with special children and parents/care-givers, and fundraising — for continuous awareness programmes like this.
“Through an event such as this, we wish to remind society that these children with their own aspirations can shine brightly if given a helping hand,” said Rebecca Jane Thomas, an educator who works with children with learning disabilities.
“We all have a responsibility towards creating a change and making a difference in the lives of special children.
“The struggles and difficulties faced by this community and their care-givers cannot be ignored.
“We should strive more to empower and integrate them into society.
“The walk provides an opportunity for everyone irrespective of age, colour, creed and status to participate, emphasise and get to know children and youth with learning disabilities.
“Anyone who has a heart can participate and by doing so will be supporting caregiving, education, advocacy and research,” she added.
“A Silent Walk In The Night” will showcase several musical performances by special children.
There will also be entertainment by guest artiste Brian John Yim, games, creative and educational activities.
The carnival-like atmosphere will kick off with registration at 3pm and finish at 8pm.
In the last hour, there will be a 60-minute walk in silence with lights such as candles, lanterns or torches to show support towards enhancing the lives of children and youths with disabilities.
Prizes will be given to the most creative lights. To participate in the walk, the public have to pay a minimum registration fee of RM10.
For details, contact Rebecca Jane Thomas (016-220 7091), Neena Raina (017-875 9456, Chrissy Loh (012-267 1783), Aishath Amira (012-350 9362 or Vanaja Dhanan (012-219 8161).
14 June 2011
Father Knows Best
A father's dedication to his disabled child
15 June 2011 |
| Chong is his happiest when he is with his children. |
By WONG LI ZA
Photos by AZHAR MAHFOF
Chong Yu Xi n was born premature at six-and-a-half months. Her mother’s water broke while she was mopping the floor, resulting in an emergency delivery.
Now 10, Yu Xin suffers from spastic diplegia, a form of cerebral palsy where the person’s arms and legs have abnormal stiffness. Her right arm is also shorter than her left by about one foot (0.3m). She also has attention deficit disorder (ADD) and very poor eyesight. She wears leg braces and walks with the help of a walker.
Yu Xin and her brother Kai Jet, eight, are taken care of by their father Chong Hoi Khow, 42, who operates a noodle stall in Ampang Tasik Permai in Selangor.
Their mother left when they were younger but now visits them two or three times a month. She also takes Yu Xin for her medical checkups.
Currently, Yu Xin can converse in English, Bahasa Malaysia and Cantonese. Her voice is soft and she breaks into a smile easily. It has been six years since Yu Xin started going to the Special Children Society of Ampang (SCSOA) in Selangor – the not-forprofit organisation where she learns to read and write. She also undergoes an hour of physiotherapy every morning, as well as hydrotherapy and fine motor skills training. Her father pays RM300 a month for all the sessions and lessons.
“Since going to SCSOA, she has become more talkative and sociable, and has learnt to speak English and Bahasa Malaysia. The centre has done a lot for her physically, too,” says Chong. When Yu Xin first enrolled there, her legs were crossed over and it took five teachers to hold her during her physiotherapy sessions.
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| Chong takes his daughter by motorcycle to the Special Children Society of Ampang every weekday. |
Chong sends Yu Xin by motorcycle to the centre every weekday morning. After she finishes class at noon, the society’s van takes her to her father’s stall in a coffeeshop, where she waits for him to pack up at about 2.30pm before they head home together.
The girl is a familiar face with the shop owners and patrons, many of whom have a soft spot for her.
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| Yu Xin reads while her dad works at his noodle stall in a coffeeshop. |
“She can be very cheeky. When she hears customers order kopi-o, she will also order a cup. She understands everything and can answer questions posed to her,” says Chong in Cantonese, with a hint of pride.
Home to the family is a rented place nearby, located above a shoplot. Chong shares the small unit with his sister, who works in the hotel industry.
He usually carries Yu Xin all the way up the dark and dank stairway.
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| Chong carrying Yu Xin up the stairs to their rented home in Ampang Tasik Permai. |
He then bathes Yu Xin.
“She loves to take her bath and fiddle with the tap,” says Chong.
After her bath, she plays with simple things like plastic boxes and coins in a container; sometimes she flips through her brother’ s old school books, or watches TV.
“She loves to listen to Malay songs and sing them, too,” Chong adds.
Despite his hardship, Chong maintains a jovial disposition.
His hope for the future is that Yu Xin will be able to walk without aid.
“Most important is for her to learn to walk and take care of herself. The doctors initially told us she should be able to walk by seven or eight years old. Now, she is already 10,” says Chong, in a somewhat dejected tone.
“Sometimes when I think about her future, I will worry,” he says.
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| Chong helping Yu Xin to put on her leg braces. (Below) Chong, after work, with Yu Xin, who also has poor eyesight, and her brother Kai Jet. |
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09 June 2011
The Children
NEW INTAKE JUNE 2011
Name/ 姓名 : Blessing Lian
Age/ 年龄 : 3 month/ 3个月
Bayi lelaki yang mengalami masalah HIE grade 2 (Hypoxic Ischemic Encephalopathy).Ibunya berasal dari Myanmar berumur 17 tahun. Ditinggalkan oleh ibunya sejak lahir.Dilahirkan dalam keadaan normal.Semasa dalam kandungan ibunya berniat mengugurkan kandungan tersebut tetapi tidak berjaya.Selepas melahirkan anak ini ibunya sekali lagi hendak membunuh anaknya dengan menutup mukanya dengan bantal. Pihak Hospital telah menyedari perkara ini dan berusaha untuk menyelamatkan bayi ini. Keadaan bayi pada masa itu sangat kritikal di mana sangat lemah dan kekurangan oksigen. Oksigen juga tidak sampai ke otaknya menyebabkan dia mengalami masalah HIE grade 2.
Pihak PKKII telah mengambilnya pada 08/Jun/2011 daripada Hospital yang diserahkan oleh UNHCR. Kos keseluruhan rawatan dan perubatan sepanjang berada di Hospital selama 2 bulan lebih ialah RM 12 ribu lebih yang di tanggung oleh UNHCR dan Persatuan Tzu Chi. Minum susu Efalac A+ rumusan khas A.R yang berharga lebih kurang RM 90.10 bagi 900gram. Bayi ini perlu membuat rawatan susulan setiap bulan di Hospital. Kami memerlukan tajaan daripada orang awam untuk menaja kos perbelanjaan bagi bayi ini seperti pampers, susu, pakaian dan perubatan.
它是一名患有HIE第二级（Hypoxic Ischemic Encephalipathy)的脑伤男婴。D它的母亲今年17岁，来自缅甸；他一出生就被母亲所遗弃。当它还在母亲的肚子里时，它的母亲已有堕胎的念头；但是最后并不成功。在产下它过后，它的母亲再度动杀机；用枕头盖着它的脸想要使到它窒息而死。院方发现此事后尝试拯救它，但由于它的情况太过虚弱了；氧气无法传送至脑部而使到它脑缺氧，因而患上HIE第二级。
UNHCR于08/06/11从医院将它转交给大马大爱照顾。它在医院住了长达2个月的时间。所有治疗和药物的费用高达12千，全数由UNHCR以及慈济所赞助。医生说它必须饮用Efalac A+ rumusan khas A.R的奶粉。这奶粉的价格相当昂贵，一小罐（900克）就售价大约RM 90.10。它还必须每月回到医院做复诊。
在此，我们希望能够找到善长人翁以赞助它的一切开销如：尿片、奶粉、衣服及医药费。
Name/ 姓名 : Blessing Lian
Age/ 年龄 : 3 month/ 3个月
Bayi lelaki yang mengalami masalah HIE grade 2 (Hypoxic Ischemic Encephalopathy).Ibunya berasal dari Myanmar berumur 17 tahun. Ditinggalkan oleh ibunya sejak lahir.Dilahirkan dalam keadaan normal.Semasa dalam kandungan ibunya berniat mengugurkan kandungan tersebut tetapi tidak berjaya.Selepas melahirkan anak ini ibunya sekali lagi hendak membunuh anaknya dengan menutup mukanya dengan bantal. Pihak Hospital telah menyedari perkara ini dan berusaha untuk menyelamatkan bayi ini. Keadaan bayi pada masa itu sangat kritikal di mana sangat lemah dan kekurangan oksigen. Oksigen juga tidak sampai ke otaknya menyebabkan dia mengalami masalah HIE grade 2.
Pihak PKKII telah mengambilnya pada 08/Jun/2011 daripada Hospital yang diserahkan oleh UNHCR. Kos keseluruhan rawatan dan perubatan sepanjang berada di Hospital selama 2 bulan lebih ialah RM 12 ribu lebih yang di tanggung oleh UNHCR dan Persatuan Tzu Chi. Minum susu Efalac A+ rumusan khas A.R yang berharga lebih kurang RM 90.10 bagi 900gram. Bayi ini perlu membuat rawatan susulan setiap bulan di Hospital. Kami memerlukan tajaan daripada orang awam untuk menaja kos perbelanjaan bagi bayi ini seperti pampers, susu, pakaian dan perubatan.
它是一名患有HIE第二级（Hypoxic Ischemic Encephalipathy)的脑伤男婴。D它的母亲今年17岁，来自缅甸；他一出生就被母亲所遗弃。当它还在母亲的肚子里时，它的母亲已有堕胎的念头；但是最后并不成功。在产下它过后，它的母亲再度动杀机；用枕头盖着它的脸想要使到它窒息而死。院方发现此事后尝试拯救它，但由于它的情况太过虚弱了；氧气无法传送至脑部而使到它脑缺氧，因而患上HIE第二级。
UNHCR于08/06/11从医院将它转交给大马大爱照顾。它在医院住了长达2个月的时间。所有治疗和药物的费用高达12千，全数由UNHCR以及慈济所赞助。医生说它必须饮用Efalac A+ rumusan khas A.R的奶粉。这奶粉的价格相当昂贵，一小罐（900克）就售价大约RM 90.10。它还必须每月回到医院做复诊。
在此，我们希望能够找到善长人翁以赞助它的一切开销如：尿片、奶粉、衣服及医药费。
The Children
NEW INTAKE JUNE 2011
Name/ 姓名 : Loke Weng Chun (Eugene)
Age/ 年龄 : 18 Tahun/ 18岁
Disorder/ 病症 : Asperger Syndrome/ 阿斯伯格综合症
Si kacak ini boleh urus diri sendiri.tahu bercakap dalam bahasa Melayu, English dan Mandarin. Pernah bersekolah. Suka buli bapanya dan akan pukul orang kalau orang pukul dia. Emosi dan kadang-kadang panas baran. Semasa bersekolah dahulu, dia pernah mencuri duit cikgu, juga mencuri makanan orang lain dan buli kawan yang lain. Suka main Piano.
这位帅哥懂得自己照顾自己，会讲国语、英语和华语。曾经念过书。喜欢欺负他的父亲，会打人若别人先打他。情绪化，性格有时会很暴躁。以前读书的时候，曾经偷过老师的钱，也偷吃过别人的食物和欺负其他的朋友。兴趣是弹钢琴。
Name/ 姓名 : Loke Weng Chun (Eugene)
Age/ 年龄 : 18 Tahun/ 18岁
Disorder/ 病症 : Asperger Syndrome/ 阿斯伯格综合症
Si kacak ini boleh urus diri sendiri.tahu bercakap dalam bahasa Melayu, English dan Mandarin. Pernah bersekolah. Suka buli bapanya dan akan pukul orang kalau orang pukul dia. Emosi dan kadang-kadang panas baran. Semasa bersekolah dahulu, dia pernah mencuri duit cikgu, juga mencuri makanan orang lain dan buli kawan yang lain. Suka main Piano.
这位帅哥懂得自己照顾自己，会讲国语、英语和华语。曾经念过书。喜欢欺负他的父亲，会打人若别人先打他。情绪化，性格有时会很暴躁。以前读书的时候，曾经偷过老师的钱，也偷吃过别人的食物和欺负其他的朋友。兴趣是弹钢琴。
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