Wednesday, August 30, 2006

Ako Ay Filipino

Arolf's first Sabayang Pagbigkas (Linggo ng Wika)

I got there just in time to watch him perform, sad that I didn't get to catch it on video near enough. He's the one constantly wiping his mouth. Hehe.

Sunday, August 20, 2006

A cure for autism?

from an egroup that i am a member of:

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Sometimes I feel angry when I read about attempts being made to 'cure' autism.

I do not wish to be 'cured' from my autism, and many autistic persons who are able to communicate their feelings, say the same thing.

Autism is not something that I have, it is something that I am. Autism is in every emotion I experience, in every thought I think. Autism is throughout my philosophy, my political beliefs, my religious convictions. Autism affects my choice of job, my taste in clothes, my favourite music and literature, the artforms I like, and those I dislike. I am autistic in my views on humanity, my opinion of individual persons, Everything!

Autism is not a cage, with us as the prisoners. You cannot talk about a person 'emerging' from autism.

If it were possible to remove autism from a person, you would get a different person. A person who, perhaps, fits in better with his surroundings. Maybe a person who abides by the rules of society more. A person who does not stick out. That person will look identical to the previous one, but will be a different person nonetheless.

Another autistic person said that when people talk about curing an autistic person, what they are actually saying is that they wish that instead of this person, there was someone else who is more 'normal'. Naturally that is not a nice thing to hear if you are the person they're talking about.

I'm not against medications which will alleviate some of the symptoms or problems of autism. For example, if there were something which would filter out the 'noise' of a crowded room and let us concentrate on one conversation, that would be very useful. If there were something that would help autistic people make eye contact (some autistics find this impossible), that too would help.

However anything that would alter my mind is so abhorrent an idea that I view it in the same light as homicide. I even find hypnosis horrifying. The idea of anyone else taking control of my mind and manipulating it is unthinkable.

I know that when people talk about curing autism they mean well, but they really don't know what they are talking about. Please keep any such cure away from me. Star Trek fans will understand what I mean when I say I don't want to be assimilated into the collective.

--Author Unknown


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and i say...

i respect people with Autism... especially those who can now think for themselves... i am reacting in behalf of those who still cannot... those, who, maybe, don't know the difference.

i am reacting in behalf of the parents and the family...

the term 'cure' is associated with a disease. since Autism is not a disease, but a disorder, it really is inappropriate to use the term 'cure' for it.

I do use the term 'cure' exactly as it is written here, with quotation marks, since other words for some things you wanna happen, is either too long or incomplete.

if i use a definition for the word 'cure', the internet will provide you with this:

remedy: a medicine or therapy that cures disease or relieve pain

i am not a hypocrite person. don't i want my son to be relieved of any medicine or therapy to better his condition? to find a remedy...

by doing the therapies, the schooling, the medicines, the intervention... aren't you really CHANGING him, into a different person? if you're not, why are we going through all of these? if the adults with autism weren't given intervention, where would they be now? would they be able to write masterpieces like the one above? would they be able to hold a pen, or type on a pc?

in the first place, Autism is still a puzzle for us all. There are bits and pieces where this disorder came from, there are myths, it's genetic, it's not... maybe it's mercury poisoning! who knows?

some methods and interventions apply to others, whilst not to some...

for me, what's important is the future... not just for my son, but for babies who will be born with the same disorder... if they really can pinpoint how to 'prevent' or 'cure' this condition, i'll be elated.

especially if your son suddenly asks you...

"mom, do i have ADHD? it says in the book the kid drives his mom crazy... i drive you crazy, too?"

(he was able to get a hold of my book about it and read it without my knowledge)

or when he asks you...

"what's a special school? why did i go to a special school?"

and when he tells you while he was crying locked in his room, and you're at the door trying to tell him to open it...

"mom, you have to help me... i'm trying to control it, but when i get mad, i don't have patience... when i get mad, my head hurts..."


that, coming from my 7 year old son. i think he's starting to realize that he's a little 'different' than kids in regular school now. when the time comes that he's ready to be on his own and think for himself, then i'd be ready to let him go.. =)

Monday, August 14, 2006

Life Changing Disease

sorry at di nakakapag-update... hehe...

getting sick with a dreadful disease with no assurance of getting better takes a lot of time, patience, and sleep. =)

i was busy getting checked-up, blood tests, getting a second opinion, and all that.. plus my medicines are giving me a hard time concentrating on anything else.

Dale (Arolf) is doing better in his writing in school... i think the teachers are doing a great job... they're getting stricter! and that's best for him...

We're having trouble now with his unexpected fear of the dark... he always shouts when he sees noone is around...

He almost always shouts now, and is a bit troubling for me... yesterday, i have to call him inside my room and gave him a massage, to cool him down... He wanted his sister, Anea, to play the pc and follow his instructions... but Anea, refused. So, he started screaming!

I think I'd better try the Epsom Salt thing that I have been reading from the ASP group.

anyway, here are some recent pictures of Dale.. He's in his gala uniform! He looks so... old! haha...

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Of course, when Tony saw we were taking pictures, he asked his Kuya if he could also wear the gala uniform:

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too big, no? =) btw, last friday, the Daycare center Tony goes to didn't have classes coz the teachers had a seminar on Autism given by ASP... Hooray! At least, some hope in Pasay... I'm still hoping someone could put up a Pasay City chapter of ASP... =)

since i'm sick, i owe a lot to my daughter Anea now... she takes care of Arolf more than I do! I gave her duties and responsibilities... I talked to her, and asked her to love her brother more... to see if he needs anything in school, if he misbehaves, if his assignments were done, if his things were in order...

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Being sick makes you wake up... makes you realize that not everything in this world is permanent... You have to be ready for what can lie ahead... for you not being around all the time... especially if you have a special child... so, you also have the 'duty' to 'make everyone' else matter to your child. You have to make sure he or she will be taken cared of when you pass on.

I know it is very harsh to lay it on a 10-year-old child, but reality bites. Good thing she understands and thinks way beyond her years.

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I wish this disease will just go away... we're all praying that my kidneys will get better... or if i really need more treatments, we're praying that my body could combat any other complications that may go with them, and that we could find the money to finance everything.

Dialysis will be a lifetime event for a person like me, and that's twice a week, for thousands per session. That will be done til i get a transplant which will probably cost from half a mil, up.

Anything could happen. You could get sicker. You could get better. You could die.

I have faith. I am positive that everything will be well.

I have been in and out of the hospital many times now. I've been opened up 7 times. I have been pricked hundreds. I'm sure God will give me more strength and patience for thousands more. And one of God's reasons is Arolf. I'm sure of it.

Anyway, more updates as soon as we get the second opinion over and done with... as soon as we're sure what to do next... i'm just starting to get back on my feet now and doing normal things from time to time like going out with my mom to the mall to get some exercise. i haven't even talked to Arolf's guidance counsellor yet, but his teacher texts me from time to time. good thing i haven't seen a 'sent to guidance for counselling' stamp on his diary since the conference. Hahaha...

God bless everyone.