Alyana the repeat

We were able to watch Alyana sa UP Diliman Film Center... hay... layo! kasama ko si mama, tony, at Dale... ang kukulet! pero at least we met MiranaMedina, the one who made the movie... the first part was about the deaf community... Breaking Down The Barrier yung title... naku, tawa ng tawa si Dale! Funny kasi yung first part...

Nung Alyana na, medyo naiinip na rin... when he saw himself, he covered his eyes... he also said naman that he was a moviestar na daw...

Mirana gave us a new poster with his name on it...

We weren't able to finish it coz it's too late, and it was too cold! the kids started sneezing, so we had to leave na rin before the show was over.

we took a cab na lang... it was funny pa nga, coz at first we told the cab driver that we were gonna go to Quezon Ave only... kaso tinamad na si mama bumaba, so sabi namin, Makati na lang... eh tinamad na rin, so hanggang bahay na lang kami... hehe.

International Women's Day

In celebration of International Women's Day, there will be a film showing of ALYANA, a documentary film about AUTISM, on March 8, 2007, 7PM, at the UP Diliman Film Center.

Admission is FREE.

Please come and support Autism awareness.

hello.

sorry about not posting for so long... i have been busy with other things... i'm moving stuff here for easier and more organized posting... check it out!

Please Watch Alyana

My son, Dale, is on the film.... read about it here...

==================================

Autism Society Philippines Metro South Chapter Activity for September:

FILM SHOWING ON ALYANA - A Study of Autism in the Philippines

Schedule:

September 30, 2006

*First Screening - 2 pm
*Second Screening - 5 pm

Venue:

Ann Arbor Montessorri Learning Center Auditorium
# 390, El Grande Avenue, BF Homes, Parañaque City

Ticket Prices:

P 150.00 - ASP member
P 200.00 - non-member

For further inquiries, please contact Mr. Evert Malapad (Chapter President) @ 09176424290 / 09215666192. You can also inquire at ASP - National Office (9266941 / 4368713)

for more information, visit Autism Society Philippines.

thanks!

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.

A cure for autism?

from an egroup that i am a member of:

======================

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


===================


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.. =)

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...





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



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...



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.



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.

Arolf's Family Day

It was Arolf's Family Day in school (San Isidro Catholic School) today. We came in late coz it was raining hard here. My mom bought the puto at kutsinta that was the 'toka' of Arolf. She bought it from the market and placed it in a bilao.

Mom and Anea went to church first. It was just me, Arolf, and Tony who went to the gym. As soon as we got there, most of the kids shouted Arolf's name. Clearly, he's popular in school. A lot of kids came up to me and complained about him, like this one kid who said Arolf cut his bag or his notebook. Tsk! Tsk! Kawawang mga bata, naiisahan ng anak ko.



Girls and boys alike went out to greet him, even kids from other sections! I didn't know how to feel. The only thing that lacked was the attention from the parents. I have never been friendly with other parents from school, even with Anea's classmates.

I still dunno how to react if they will ask me why Arolf behaves in a certain way. I dunno if I could say that he's special.

Anyway, he had a great time at first... running about, playing... dancing...



but then it rained hard and he tried to cover his ears... i had to embrace him and tell him that everything will be fine and he should take off his fingers from his ears because people are beginning to stare. He did. He then just sat on my lap and wanted to go home already.

After eating, there was another game of Palayok and all the players were already chosen... He got into a tantrum since he wanted to play. I didn't let him coz I said he had to learn to accept realities.

We went home immediately.

All-in-all, it was ok. Tony even had so much fun.



He got the experience we wanted. I saw his classmates' reaction towards him. I'm sure everything will be fine in time.

Alyana

About a year or so ago, a letter came to me asking for permission to 'show' Arolf in a film documentary entitled Alyana. They said that they will show him in a positive light.

The first thought that came to mind was, will it have a negative effect on my son?

As an advocate for special children, I signed the paper.

I am not and will never be ashamed of Arolf's condition. I am so proud of everything he has accomplished, even little things like putting his trash in the waste bin properly without us ordering him to do so.

I thought, if this will shed light to other parents who are going through the same emotions I have everyday, then so be it.

I forgot all about the movie. As I said, it was years ago.

Then when I heard about it to be shown, I thought, it sounds familiar... and I wanted very much to see it... Though I got sick, and UP Diliman is quite far for me, I really wasn't going to.

Until the conference where T'Mila, his former SPED teacher, advised me to get my 2 complimentary tickets for Alyana and explained to me that it was the film that asked for my permission before.

OMG. hahaha...

So, I got the tickets and watched it with my mom.

They said Arolf will just have a bit part, like showing him cleaning something. So I said, OK... Eventhough it was a bit part, he's still on it, and it's a documentary film, very informational. My mom would better understand Arolf's condition when I bring her with me.

Of course, i invited Arolf's dad first, but he said he had a prior commitment. He should've been the one who needed more information about his son.

The movie was 2 and a half hours long and in fact they have to cut it into 2 parts so the people watching can have a break.

The first thing that got me excited was one of the posters... Arolf's name was on it! My mom saw it, and after the show she got it from the walls without even asking someone... hahahaha! That's my mom.



Since I didn't know when he's gonna be on, I had to take out the digicam and wait like crazy pushing buttons and changing batteries... It's a shame that I didn't get the first part of the credits coz Arolf's name nga was on it pala.

When I saw the part where T'Mila was already in, I pressed record and got his first appearance. Pity it ain't clear.

He was washing a chair... and very much like he knows how to! My mom had to laugh coz we never thought he could do that... he's so lazy around the house!



We were considering not finishing the movie since it was already late and we have to commute to go home, but I insisted we finish it.. We didn't know that he will be shown 3 more times! It's like he really IS into the movie, and not a bit part.. I wasn't able to capture the rest on video, coz we really didn't know when he'll show and it's always in passing.

The next scene, he was shown walking to the board to tell time, only his back was shown.
And then when he was in the church, close up.
He was asked to write something on the board, side-view.

I was so psyched. My son is a movie star. Hahaha.

I really have to grab a hold of a copy of that movie... not just because Arolf was on it, but I wanted to give copies of it to people for their own understanding of the truths and myths of every child who has it.

The hardships and emotions that parents go through everyday. The clinical, medical, educational, and other aspects of the disability. The many adults who has the same condition living a normal life. How they think with much more sense that us 'normal' people.

And of course, it's permanence. That this condition will never go away.

That is one of the reasons I wanted now to go into a business. Because when I got sick, I realized, if I had died, what will happen to Arolf? Surely, he will be neglected by his father's family... I am sure of it. He might not get the proper education, maybe institutionalized.

I wanted to give him a start in life... I wanted him to get into business like a computer shop or food business where he can work on his own time, be his own boss. Just live and earn and not have to wait on someone to give it to him.

That is one of the reasons I teach Anea and Tony to love their brother everyday. Siblings play an important role.

I realized now how much more I have to teach him... how much more understanding I have to provide... how much more time I have to provide.

I realized everything with one excellent documentary film by MiranaMedina.

Conference

...was a disaster.

it was like a clash of super powers.

arguments...

bashing of their titles.

"i'm a clinical psychologist!"

"ayun naman pala eh, seminar mo mga teachers niyo."

it all boiled down to one thing--strict discipline.

that's all that was helpful.