Speech and general major milestones – after 40 weeks

I actually can confidently tell people that Raiyan is talking now. 10 months after not knowing what to answer to something as simple as how are you or what do you want, Raiyan is at a point when he can actually have conversations with others. Of course, the length of this conversation depends on who he’s having it with. If it’s with me or Jeff or Kerri or Jo or Tracy who spends the most time with him, we would know exactly the kind of words and use of language that Raiyan would understand and we would know how to be creative in asking him something with a more confident expectation that he would be able to answer. For example, when I ask him what he did in school, it is still difficult for him to answer when I ask “what did you do in school?”. This is because it’s not specific enough and he just wouldn’t know where to start. So his answer to that is always something as general as “I’m in Mrs Want’s class” or “I get golden time” or “I play with friends” (which is still excellent by the way!). So to get specific answers I have started to ask him systematically like “Raiyan, after you said bye to me, what did you do?”. Then he can easily say “I play with Fadhil and we make a cake with playdoh” or “ I play with Haziqah and make animal jungle”..That’s how far as it goes for now but it’s a start! :D Remember this post-how far he has come and how far have I come from then huh!

I can even have actual phone conversations with him now which makes me sooo happy! Before this year, he wouldn’t even go near the phone or at best he’ll just sit there holding it and wait until he’s dismissed! When he started talking earlier this year, he would just talk away to himself without paying any attention to what I have to say on the other line. But now, this is my conversation with him just 2 days ago:

(The one day I didn’t go back for lunch because I went beraya to my colleague’s house)
Me: Hi Raiyan!
Raiyan:Hi Mama! Where are you? I think Alisha and Addin are waiting for you. Alisha she’s crying because she waiting for you. You don’t leave us mama.
Me: Oh sorry, I have to go somewhere today but I’ll come back later.
Raiyan: Ooh-kay. But Alisha and Addin she wait for you come back...
Me: Sorry. But only Alisha and Addin? Not you?
Raiyan: Yees, me toooo!
Me: What did you do this afternoon? Before I call you?
Raiyan: I was playing with the computer.
Me: Were you playing with animals?
Raiyan: Whoops! Sorrryyy.. hehe (giggles)
Me: Do you know what I’m going to say?
Raiyan: Too much animals... hehehe..sorrryyyy..

Oh and speaking of animals, I have the most hilarious story about Raiyan and his animals conscience. Jo was telling me that in IT class the other day, she left Raiyan alone with the computer whilst she was accompanying someone to go to the toilet and when she came back, she saw he quickly minimised a box that was open on the screen. And when Jo came closer he kept wanting to cover the screen and tried to distract her by asking her “Jo, do you want to go to toilet again?” and “Erm, I think Fadhil need your help.”(!!HAHA!!). Of course Jo just ignored him and insisted to open the window on the screen and of course it was none other than animals. But the pweshes thing was Raiyan totally pretended to be shocked and said “Hah! Who put that there?!!”

Can you imagine the cheekiness?!!! All this time, I really thought that autistic children can’t lie but look at what Raiyan has achieved! I say achieved because even though I instinctively got worried and thought “omg my son despite the autism is still a liar!”, Jo said that the thought process that goes behind it is a lot for an autistic child so really this is actually a massive improvement for Raiyan. Plus she assured me that typical kids do this kind of things all the time too (little white lies), so I relaxed and took the positive side of it-Raiyan is clever enough to lie! Hahaha!

I have never on this journey wanted or even expected for Raiyan to turn out “normal” and I’m not saying that he is actually typical now but I have to say, none of us expected for him to improve so much within the last 10 months. Maybe it’s just Raiyan, maybe it’s the ABA, maybe it’s both. But nobody can deny the benefits of the hard work and perseverance of everyone around him, especially his pweshes therapists that have led Raiyan on this wonderful journey all the way to this wonderful point. Sure he still has his challenges in the social aspects and his language is not 100% there, but I swear when we went around for Hari Raya in the last 2 weeks, either no one suspected he was any different because they don’t know him or for those who know him, they just couldn’t believe to see how much he has improved.

We still have stuff to work on and I don’t expect that these things will go away forever. For a whole day filled with going to 8 houses for hari raya, I still had to tell him at the beginning and talked the whole day through to him. He still needs to be coaxed to finish his meals or try out new things. He still has difficulty confronting large crowds of people. He still wails when others touch his toys. He's still needing full support in class. But to me, the biggest hurdle has been crossed because at least he understands us when we explain to him why this or that needs to be done. And at least now he’s able to tell us his feelings so we don’t have to second guess him anymore.

I know it seems like Raiyan’s journey is too good to be true and even when I read back this blog and think back to how he was like before his diagnosis, I just think it’s so unbelievably amazing how much he has progressed. But I also know that other children within our society have improved too, all in their own individual and equally wonderful distances.

I just really really want to assure any worried parents out there that there is still so so so so much hope after receiving that diagnosis. Learning Ladders are working really hard to make more available and more accessible the therapy that we are providing our children because it just breaks our hearts when we hear of other children with such familiar stories and still not being able to communicate after 3, 4, 5 and even 6 years old.. It frustrates us because we know now that something can be done and these children can improve. Maybe not to the extent of the speed of Raiyan’s improvement but at least some improvement and within time, lots of improvement and that’s something worth trying for at least right? I pray for the day that no parent in Brunei needs to be terrified or be in constant denial about getting that autism diagnosis anymore. It’s vital that everyone understands that the earlier a proper diagnosis is made and the earlier an effective intervention strategy that uniquely caters for the child is started, insyaAllah the chances of this child to be able to lead an independent life in the future will be good. And these children with their amazing abilities can actually be given the opportunity to extend valuable contributions to Society and to Brunei as a whole- I think it just might be possible for Raiyan to open Brunei’s first zoo one day! Amin!

4 comments:

Nisa said...

What a touching post! Raiyan really has come a long way. And that cheekiness is too adorable! Heehee! I'm sure a lot of parents will be highly inspired by Raiyan's story. =) Congratulations!

MimeL said...

Hahaha! That story about Raiyan and jo at the IT room was soooo hilarious! Kan kepisan ku ketawa.. Yup! How did it get there at the first place..hmm..i wonder! *grin* I imagined how he looked like masa nya tekajut ah..
Raiyan is really so adorable. Proud of him very much!!
Can't wait to hear more about him soon.

Pweshes Mama said...

Thanks my dear cuzzie! And thanks for all your support all this time :D

Pweshes Mama said...

Hi mel! Awwuu caaalliieee kan cerita nya sama si Jo atu.. layak banar bah.. kalau ko meliat sendiri cara si jo mendescribe lagitah lakak2 ko ketawa!

Bah nanti kerumah ah!

Love, Riana

PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

Amin.
 
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