Few weeks ago, one of the internet celebrities who lives in one of the countries in Europe, whose son is autistic wrote a note on her feed about how complicated life has been, with her son situation.
Few months ago, another internet celebrity, also with an autistic son, moved back for good to her hometown in Bandung after four years lived in London. She said how it broke her heart to lose all the support that had been given enormously to her son there. How they would try to find ways to return so their son could get the support he needs, something that is quite hard to find here.
Although my daughter condition is quite different with them, but I totally could relate to both of them.
How (more) complicated life when you have a special need kid who needs support (no matter how low like mine or how high like them) and how hard and heart-breaking it is to get a proper one in this very country.
What missing here is not a literal support. Therapies centres are available, especially when you are in big cities like Bandung or Jakarta.
The biggest and the most important thing that is absent here, is THE CARE.
In general, many people who works in this field, from the doctor to the therapists, they don’t lack in skill or knowledge, but they have problem with LACK OF CARE AND EMPATHY.
Recently dropped little girl’s therapy sessions in Bahasa Indonesia with very much discomfort. It’s been running for few months with some notes, like punctuality, bad internet connection most of lessons time, and the same material that seems irrelevant. But, I still consider the other advantages too.
Until yesterday when it was almost 10 minutes from the schedule, she was still unavailable. Then I messaged the centre. Few minutes later she was on. Not for long, the connection was off again, and it happened for so many times. The little girl kept calling everytime she answered one question and heard no response. It was so frustrating.
At certain point, I really couldn’t handle myself to give some remarks about how annoying this bad connection was so she could heard it. Worse, her background was so noisy, people kept talking and passing by behind. I wonder if anyone could handle themselves dealing with such situation.
She seemed unhappy with what I did, her tone when she talked to little girl suddenly changed. To calm down a little bit, I started texting the doctor and threw my rant on chats.
Things seemed getting worse when the next thing she asked the little girl to do was making sentence through whatsapp chat, which was totally unless. It is a speech therapy session, damn it!
To add some more, she kept being pushy telling her to type faster. I started recording her facial expressions so I could forward either to the doctor or the centre.
Absurd task still accompanied with bad internet connection. Crazy.
I no longer could tolerate her when once she talked grumpily to the little girl while it was her who didn’t hear any answers she had been given. I snapped telling, “you say it if you think you can’t do it”.
I talked to the therapist right after the session and threw all my rants right in front of her face.
This one is a senior therapist that also teaches in the university for younger ones. How could we have good ones if the example of attitude set for them as low as this old kind?
Instead of being angry, I actually want to cry hard more. This is so frustrating. This is not my first time doing this. I once also threw tantrum in another centre three years ago because almost the whole session, that person didn’t do ANYTHING BUT LOOKING AT HIS PHONE. My blood was boiling watching from CCTV but still refrained myself from smacking the door.
It also happened five years ago when appointment had been made and decided to go home after being stood up for almost an hour. WITHOUT EXPLANATION, let alone apology.
Online consultation was no better. Once had a loooongggggg early morning conversation with one of the centre account which has a large audience, yet, the tone was so demeaning, so disrespectful, as if parents knew nothing and had done nothing.
This kind of thing we have to deal with and the level of care we have here.
I am too frustrated to try again but not doing anything is also not an option.
Let see if someday we could find what we’ve been looking for.
A Penny for My Pensieve 
So sorry you (and perhaps many other parents in similar circumstances) had to go through all this, Mba. There really is something about the general lack of “common sense” in our community that is also perhaps what distinguishes us from developed nations I suppose. I imagine it must be really frustrating that you, as a parent, wants and does try your best for the little one already, but there are still significant things you can’t control like how these people would behave and interact with her. My hope for you is to come across individuals who are compassionate and also are such empaths so that the journey is made easier for both of you! Fingers crossed.
There you said it. Things that considered as basic decencies are still not yet granted here. So, we have to fight not only for the support, but also such basic.
Here, there’s no ‘easier’ way than to keep looking and Alhamdulillah , up until now, there’s always more options than the closed door. Thank you for the kind words☺️☺️