v.Sad & heartpain: the anguish of a mother with an autistic son

"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"

My heart feels raw, and my throat has a lump that will not go down, even as I type this.

This was an sms my wife received from a mother whom she communicates with from time to time. They don't know each other, and they have never met, but they started exchanging text messages and words of encouragement, because of some therapy questions that this mom had some time ago, and someone referred her to my wife. Two women, total strangers, united by a common challenge.

It is exactly 3 sms-lengths long, and despite the economy of words, and concise nature of the message, you can feel her anguish as she struggles with her son's autism. While it doesn't do her words justice, I will try my best to paraphrase:

"I am so envious of your daughter who can attend the Asian Women's Welfare Association's (AWWA) Special School. My son must wait for two years to get in. And these few months, I have been very sad because his need for a rigid routine is getting worse.

For example, when I take him home, he wants to take the lift twice. One day, I refused and he cried for an hour. At night, he woke up at 4am and WANTED TO TAKE THE LIFT! He had already woken up three nights in a row, insisting on doing things we did not let him do during the day.

He can't express himself, and I feel he is such a poor thing. I am so worried that with so many speech therapy lessons, he still can't talk. Sometimes, when he wants something but can't express it, he will keep crying. I feel the urge to open that bottle of Kirkman vitamins (usually B6 which some believe autistic children are deficient in) for him to eat.

I feel very sad and it pains my heart."

There are more than 300 children with autism, waiting for their turn to attend a special school. Many of them are on a two to three-year waiting list because there are not enough special school places, trained special school teachers and generally not enough 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 diagnosed, put on a two-year queue, and maybe get into a special school equipped to help them, it is no longer early.

Meanwhile, the right to have compulsory education remains only for "normal" children, and the training of Special Ed teachers does not come under the Ministry of Education's (MOE) purview, but comes under the Ministry of Community, Youth and Sports (MCYS).

Children with special needs require highly trained teachers 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. They certainly are not child minders or pre-school teachers, even though their charges are young and below normal schooling age.

The reason their charges are young is because these kids need to be given intervention and therapy as young as possible, in order to even learn the most basic of things, like how to learn.

But no, the MOE is only responsible for "normal" children of Primary school age and above. So the formal training these special teachers need is not under their care, nor is the syllabus. No, these special children so young, so must be under MCYS, because the kindergartens and childcare centres are its responsibility, which the ministry does its best to carry out.

When I read of another premier junior college 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, I cannot help but think of my daughter's school, whose new premises has been delayed indefinitely because their contractor went bust, and her small pool of special teachers who are stretched, like butter over too much bread, trying to cater to as many special kids as they can.

I recall the PM's speech, where he said that he wanted an "open and inclusive society", where no one will be left behind, and I feel hope.

But I also recall another speech he made where he announced some important measures the Government is taking to help the disabled. In that speech he also said, "Together with the support provided by NCSS, this will provide SPED schools with nearly 4 times the level of funding of mainstream primary pupils."

While I am thrilled to hear numbers like this, I cannot help but imagine Government officials saying to special needs children:

"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."

"...But in doing more for these children, we should not inadvertently divert so much professional resources and attention away from the normal children as to affect the quality of their education.

"We have to maintain a judicious balance in allocating resources and setting priorities, so that we can improve the quality of education for all our children. That way our future as a society will be brighter, our economy will be stronger, and ultimately the resources we have to help the disabled will be greater."

Ah, there is the "B" word I see so often — "BURDEN". While I know PM means well, using the word "burden" only reinforces the belief in normal people that the disabled are a burden that society must bear. It is an attractive-sounding idea, to fund the "able" so that they can help the "disabled". But it only adds to the alienation that the disabled feel.

One of my readers, who is a deaf special education teacher who teaches primary school deaf kids, once said:

"No no no, the deaf/hearing-impaired/hard of hearing/whatever and people with other special needs are definitely not a burden to society just because of our disabilities. please don't think that way.

"I will never ever tell my students (all of whom have profound deafness) that they are burdens. Yes, it's true things are harder and discrimination is rife for those with disabilities, but we make the best of what we have and think positive.

"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."

A fair, fighting chance in daily life. That is what we all want for our children, isn't it? Be they "normal" or special.

Many moms, like the one above, struggle and deal with their autistic kid alone. I say "kid", in the singular, because many of them stop having children after their firstborn is found to be autistic. Partly because of fear, as studies have shown that there is at least a 1 in 20 chance of a sibling having the same problem. And partly because raising one autistic kid is like raising a full brood of regular kids. It is probably harder.

In fact, so many parents refrain from having more children after having one autistic child, geneticists even have a term for it: stoppage.

Not many are like my wife, who has a deep support structure of family and friends, and the courage and stamina to have a second child (who provides another dimension of parenting, and anchors her), and a deep-rooted faith.

Nobody is asking for a handout. Just a little more hope, a little more understanding, and a little less heartpain for those of us with special kids.

In their sms chats, Ginny suggested some things she does with our daughter Faith to reduce her self-stimming 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 sorry needed. We are always happy to listen. We know how hard it is to want sometig cant expres keep cry.