Latest TODAY column: v.Sad & heartpain: A mum's anguish
My wife said, run this story for the paper, and knowing that she is the wiser half, I listened. In fact, here is a recent SMS from the same mother:
"No use,u koe i even email to Lee Hsien Loong sep? His 1st secretary reply (cc to LHL) apologize hv not forsee tis prob earlier,now govt pump $ build special,forward my email to MOE,in e end,we stil muz wait 2 yr& MOE ask us send him AAS while wait special schl,tats y i say yr girl V.lucky"
And another one:
"realy huh?! I cant remb wat i write,of course u can use it, but juz curios yr girl oledy in AWWA,u r fightg right 4 yr other friend kids? When publish, can sms me? TKS 4 WRITING IN 4 US, i M V.Touch yr help"
Excerpt:
Autistic children require highly-trained practitioners who have the skills, the heart and the stamina to give these kids a shot at a functional future. In fact, the kind of training these special teachers need is at least as rigorous, if not more so, than those involved in teaching gifted students at tertiary-level schools.
My daughter, Faith, was 2 when she entered the programme. The reason they need to start so young is because they need to be given intervention and therapy as early as possible, in order to even learn the most basic of things, like how to learn. This is not kindergarten stuff.
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Full column:
v.Sad & heartpain: A mum's anguish
"I so envy yr girl in AWWA,my son muz wait 2 yr & tis few mth i v.Sad cos he rigid worse,eg brg him hm he want take lift 2 times,1 day i refuse he cry 1 hr,at nite he wakeup 4am WANT TO TAKE LIFT! He oledy wakeup 3 nites insist do tigs we refuse him do during daytime,he cant expres i find him so poor thing,so wory w so many speech terepy he stil cant talk,sometime he want sometig cant expres keep cry,i hv urge open tat kirkman let him eat,v.Sad & heartpain"
This was an sms my wife received from a mother whom she communicates with occasionally. They don't know each other, and they have never met, but these two mothers started exchanging text messages and encouragement, because someone referred her to my wife about available therapies.
It is exactly 3 sms-lengths long, painstakingly typed. Each word is a cry to express her anguish over her son's autism, and his need to follow a rigid daily routine.
More than 300 autistic children like him await their turn to attend a special school, like AWWA’s (Asian Women's Welfare Association). Many of them are on a two-year waiting list because of a lack of special school places, trained teachers and resources.
The irony is, experts agree that early intervention is one most effective ways to help kids with autism. But by the time these kids are identified, put on a two-year queue, and enrolled into a special school equipped to help them, it is no longer early.
Meanwhile, the right to a compulsory education remains only for "normal" children, six and above. Children with disabilities are kindly exempted. So the training of Special Ed teachers, and shaping of syllabus, does not come under the Ministry of Education's (MOE) care, but lies with tireless VWOs, and the Ministry of Community, Youth and Sports (MCYS) who also takes care of kindergartens and childcare centres.
Autistic children require highly trained practitioners who have the skills, the heart and the stamina to give these kids a shot at a functional future. In fact, the kind of training these special teachers need is at least as rigorous, if not more so, than those involved in teaching gifted students at tertiary-level schools.
My daughter, Faith, was two when she was entered the program. The reason they need to start so young is because they need to be given intervention and therapy as early as possible, in order to even learn the most basic of things, like how to learn. This is not kindergarten stuff.
I hear that a premier junior college is moving into their new "sprawling 8.6ha campus in Bishan" with a new "buffet-style A-level curriculum" being offered to their top-scoring O-level students.
That’s nice, my daughter's school looks like a sprawling abandoned primary school from the 70s. Their new building has been delayed indefinitely because the contractor went bust, and the small pool of special teachers are stretched, like butter over too much bread, hardly an all-you-can-eat buffet.
I am hopeful for PM’s "open and inclusive society", where no one will be left behind.
I am also thrilled to learn that, "Together with the support provided by NCSS, this will provide SPED schools with nearly 4 times the level of funding of mainstream primary pupils."
But I hope one day we will not also hear officials say:
"I am sorry, but we already spent nearly four times more on you than the mainstream kids. And your disability, according to our calculations, is only 3.4 times more of a hindrance to normal life, and your contribution to society is only 0.7 times of a normal Singaporean. So we cannot increase your funding or we will be over-subsidising you."
PM also said, "In helping the disabled, we must take a fair and practical approach, one that can be sustained over the long term, and will not impose too heavy a burden on society as a whole."
Ah, there is the "B" word — "burden". I know PM means well and wants “to improve the quality of education for all our children”. But “normal” people should not be encouraged to see the disabled as a “burden” that society must bear. It only adds to the alienation that the disabled feel.
One of my readers, a deaf special education teacher who teaches primary school deaf kids, once said:
"People with disabilities ask not for patronising pity, charity, welfare benefits or freebies from the public and government. we ask for understanding, empathy and just that bit of basic human decency. and a fair, fighting chance in daily life."
Many moms like the one above, struggle to give their kid “a fair, fighting chance in daily life”, and deal with their autistic kid alone. I say "kid", in the singular, because so many parents refrain from having more children after having one autistic child, geneticists even have a term for it: stoppage.
I am blessed to have a wife who has a profound faith, the support structure of family and friends, and the courage to have a second child.
In their sms chats, Ginny suggested some things she does with Faith to reduce her self-stimulatory behaviour, and the mother replied:
Maybe girl more tame,i try many ways distract him but fail,therepist say if he wakeup nite tis q.Serios,but to giv in to him make him more rigid,i can't imagine how life 4 him if he cant talk,sory u muz listen my prob..."
No problem, no sorry needed. We are always happy to listen. We know how heartpain it is to want sometig cant expres keep cry.
mr brown is the accidental author of a popular website that has been documenting the dysfunctional side of Singapore life since 1997. He hopes to hold his daughter’s PSLE results in his hand one day, regardless of the grades.
