A Tidal Wave Amidst the Peace

WARNING: FRUSTRATED MAMA RANT AHEAD.

Today has been a pretty low day for me.

Just to update, Raiyan has been having a few “social” problems whilst adapting and settling into Year 1, so much so that we had to shift him to another class so that he can be together with Fadhil which means that Jo (who also shadows Fadhil) can eye them together instead of separately if they are in different classes.

Things seem to be going well this week. Every day when I pick Raiyan up from school, the teacher kept reassuring me that everything was okay and he was doing relatively well. I do know however that Raiyan still has problems with his loud voice, in particular when he shouts out in class, either to get attention or worse, when he’s frustrated about something. Nevertheless, every day of the week I was reassured that everything was ok, so I was grateful, relieved and was beginning to feel confident again about his future in the school after a rather tumultuous start to the year.

But today, I suddenly get news about Raiyan’s teacher receiving “complaints” from other parents about Raiyan’s shoutings. I don't want to go into detail about what I heard for I don't want to put anyone in a difficult position, but simply put, a lot of troubling thoughts and questions were running through my head the whole day. Venting to my fellow Learning Ladders Ladies was helpful but unfortunately was not helpful enough. To say I was enraged is an understatement.

I accept Raiyan to be autistic but in this country where there is a 99% level of ZERO understanding of what autism is, sometimes and especially lately with him having improved so much, the label of autism has only proven to be a nuisance for Raiyan for it has at times led others to have the worst but unnecessary preconceived notions about him. Some people really have absolutely no idea that autism is a spectrum and that not all autistic individuals are alike. Some people are completely ignorant of the fact that autism is treatable. Some people either dont’ know or just forget that Raiyan IS able to read, IS able to write, IS able to mildly socialise with others, IS able to communicate a lot of things, IS able to be calmed down when he is upset, IS able to be told what to do and IS able to try new things. But what happens instead is the MINUTE he does ANYTHING remotely different, people think of the autism and SHUTS THEIR MIND AND ACT HELPLESS.

It would be so easy for me to just throw in the towel because we have seriously been working so hard on Raiyan’s social skills lately. There is not a day when we are not reminding him about not interrupting others when they talk, about the need to learn sharing with others, about the need to keep his voice low (this has been going on for months! If there is some surgery where I can permanently lower the volume of his voice, I would take it but what can we do? He is BORN with those vocal chords!), about the need to wait for his turn and about the need to raise his hand if he wants to say something. And along the way, I’ve been doing it with a heavy heart because I can’t help feeling like he is being overloaded with all these new rules every single day ON TOP of his school work and his therapy. And what still happens? A shout or two still led to make us feel that Raiyan is not good enough to be in the class, despite him improving in everything else. Who wouldn’t feel frustrated? I mean I know I said I wanted to deal with Raiyan's autism journey "peacefully" and I really try to not ignite touchy debates through my posts, but I really feel the need to voice out the reality of what we autism parents have to face when it comes to our attempts in wanting to educate our children in Brunei. Let me break the news, handling others' prejudices and narrow mindedness makes up such a big chunk of it all. With the law providing for inclusive education, ALL schools are obligated to accept special needs students. Hence, by right, us autism parents should never be made to feel like our children are not good enough or do not belong in this or that school. But the sad fact is that either our children are made to feel that way OR they just end up being neglected simply because others do not know how to handle them.

This is why I am NOT going to give up. Because to give up would mean taking him out of school and letting him stay home and therefore denying him a possible independent future. And to give up would mean further instilling the current typecast Brunei has on autism when I know for a fact from reading so many stories of improvement and even recovery that there is so much more hope for these children than the extent of what those in Brunei thinks.

I accept this challenge wholeheartedly and tonight I went a step higher in trying to get through to Raiyan about handling his frustrations better by way of modelling instead of just telling him. When I tried to explain that it is not good to take things away from Alisha, I purposely demolished his lego zoo to which of course he got incredibly distressed. I immediately took that opportunity to tell him that how he is feeling there and then is how others feel when he takes something away from them or when he doesn’t want to share things with them. And lo and behold, he immediately stopped crying and really looked like he understood what I was saying and vowed to try and not do those things again. Of course I expect to reinforce this more later on but this occasion really did feel like a breakthrough compared to previous times.

So what happened today is probably a stronger kick in the butt for me to work even harder with Raiyan and to remind me that this journey is NEVER going to be easy. Then it occurred to me that life is NEVER going to be easy anyway, so I am just preparing my child to cope and handle this ugly world as early on as I can. AND after today’s incident, I am sorry to say that after witnessing such intolerance by others towards anything slightly different together with constantly seeing what seems to be people’s increasing needs to strive for superficial perfection, the world’s just going to get uglier.

But the beauty with Raiyan and all autistic individuals is that they are completely oblivious to all these superficial crap. It's just me that has to learn to not let all this crap affect me so much :-P