2 steps forward, 1 step back

Okay, perhaps I might have spoken too soon in my previous post because today has been quite a challenging day for Raiyan and me. He came back from school crying and wailing over his ABA who he saw whilst she was picking up her daughter and it went on for almost an hour with him repeatedly calling out her name. I was already feeling really tired from the morning taking care of Alisha and Addin so starting out on a bad foot with Raiyan didn’t make the rest of the day “entertaining” him very appealing.

So it variably went on like that for the rest of the day, sometimes he would follow an instruction as easily as has been in the last week but there were times when he would scream and shout for something too. I think it was partly my fault too as I was admittedly too tired to entertain him continuously (as that is what we are expected to do as autistic children get bored very easily) and the more overwhelmed I was, the more depressed I got.

So to avoid giving false impressions that everything has been going fine and dandy for the last week, I also have to be honest about the regressions that happen too. Today, he cried out for his DVD for almost an hour, he refused to share his toys with Alisha and kept shouting at her and he refused his milk in a glass before he went to bed.

I definitely have to accept that we have to take one day at a time. Here’s hoping tomorrow will be better than today.

3 comments:

pinkilili said...

Hi honey! I feel bad bc I was one of the people who said that Raiyan was just developing at his own pace!!! But not having ever met him in person I guess it's a bit hard to know. Anyway, I'm amazed that Raiyan went for speech therapy and preschool but still no-one noticed anything, it's quite absurd that his therapist and teachers didn't have a clue. I guess here in Finland it's the opposite, we are overly careful and involve special education kindy teachers and other professionals after the smallest hint that a child might be autistic, have a learning disablitiy, etc. But that way those who do need help, get it early on. Anyway, you're so brave and such a good mother, I'm proud of you! It's wonderful how you're trying to raise autism awareness in Brunei, it really sounds like it's much needed. Raiyan such a gorgeous little boy and progressing so wonderfully! Hugs and love, suvi xx

Pweshes Mama said...

Hi honey!! Yeah you shouldn't feel bad at all because you never met him and from all the pictures that you've seen of him, he looks completely fine right? Even the child psychologist we saw said that in Raiyan's case bc he is high functioning, it is difficult to tell before the age of 3.

Wow! It's so great to know that in Finland everyone is cautious because it's so important that everyone especially the schools's involved. over here, sometimes I just feel like it's really just up to me and Jeff to be carry all the burden. I'm already getting so paranoid about Addin! And it's scary cos after what happened to Raiyan I cant rely on anyone else to help spot any hint early on too.. but I pray that Addin is ok! :D
Thanks for your support so much sweet heart and I'm soooo sorry for not having written in a while. I still enjoy reading your mails though.. I'm just so crap at replying! Hugs and love back!!

pinkilili said...

Does Raiyan go to an international school? Maybe they're more open to helping children there?

I can't believe you're not getting any support!! Over here, it's kind of the opposite, parents are in denial and won't face the facts. So it's up to the school/kindy to try to make them realize that therapy, etc. is for the GOOD of the child. So I'd say that Raiyan is very lucky to have you and Jeff for parents, bc at least you're out there getting help for him! Which I'm sure isn't the case for many autistic children in Brunei!!

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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