Friday, April 13, 2007

Sonia Roco and Autism

I learned about it from our egroup at the Autism Society Philippines. To say that I was disappointed was an understatement. When I read the reaction of the running senatoriable, Mrs. Roco, my disappointment turned into fury.

I am not a follower of the election brouhaha.. even before.. i rarely watch news 'coz it makes me feel down.. all the killing, the corruption.. it's sickening to watch.

But, since I was old enough to vote, and I DO vote, I have learned to study the candidates, and how they could help our country. And I'm glad to say that the senators I have voted, have been of great help to this country.

I have been a fan of the late Senator Raul Roco, and his stand on education. I felt a little sad when he died. It was a terrible loss.

That was why I couldn't fathom why his wife would comment like that on TV. An educator, a mother, and a graduate of Ateneo, no less.

To better explain my side, you may read this post:

Dang Koe, President of Autism Society Philippines, sent this reaction to Inquirer soon after senatorial bet Sonia Roco made this comment on national television.......

"Para naman silang mga sariling mundo".

This is what Senatorial candidate Sonia Roco said when interviewed on TV Patrol Monday evening newscast, regarding Team Unity's reaction to poll surveys on Top 12 senators. She followed her statement with a hearty laugh.

But we could not laugh with her.

Coming from a respectable Educator like Mrs. Roco, families of Filipinos with autism could not help but feel hurt by such statement, given the context when it was said. After all, we have worked so hard for the past 20 years to educate Filipinos about autism, and to remove the social stigma associated with it.

We can't help but wonder...if a poll survey is to be conducted now among the estimated 400,000 Filipino families (multiply that please with the number of family members, relatives and professional involved), what would be Mrs. Roco's ranking?

Dang Uy Koe
Autism Society Philippines

and this is Mrs. Roco's official statement:

April 6, 2007

Dear Ms. Dang Uy Koe

The comment was not intended to hurt you or those who have worked hard for 20 years to remove the social stigma associated with autism.

Please allow me to clarify that the statement was uttered in a context not meant to deride or demean those who are suffering from autism and the people like you who care for them.

It was simply a quick answer to the question,"what can you say about the Team Unity claiming they will make 12-0? My reply was " ano ba sila dreaming? para silang autistic, may sariling mundo."

".may sariling mundo" was what I added to my main statement. We are each living in our own individual world, while being members of a whole. That was the only reference I meant, insinuating that Team Unity is so engrossed in their own world that they shut out the realities of the community around them. The answer was directed to Team Unity and to Team Unity alone.

I am sorry. if as you have expressed, the statement hurt you and the 400,000 families you represent.

It might be of help to let you know that I had a sister who was a special child and at that time, she was called "retarded" and all those similarly situated were branded retardates. In Raul's family, his youngest sister was labelled by psychologists as "mongoloid", now termed Down's syndrome or Trisomie. Yes, I understand where you are coming from. as I hope you will understand to whom the commentary was directed to.

I appreciate your feedback. I have learned my lesson. If there is any way I could be of help just in case I make it to the Senate, with your support which I pray you will bless me with, please feel free to contact me anytime.

May this Easter bring us Peace and Understanding.

Thank you and God bless.

Yours Sincerely,
Sonia M. Roco

and after Mrs. Roco have had her say, I still couldn't get over the hurt. My son Dale, now 8, has been diagnosed as having Autism at the age of 3. At the age when we should have started to 'enjoy' him like any 'normal' kid.

Like Mrs. Roco said, she knows how it feels, having relatives who are special. And yet, that was my main point... You know, and yet you use the word "autism" as plainly as it was like a dreaded disease. And you finish off with a 'hearty laugh'?

And you said you were not directing it to the autistic community?

Now, I'm the one giving the hearty laugh.

How could you use the word 'autistic' and not direct it to the autistic community? Do you really know what 'autistic' means?

If I were to tell Mrs. Roco about how I truly feel, I would tell her this:

You do not know what it felt like to hear a diagnostician tell you that your son has Autism.

You do not know how it felt like not having enough money to bring him to therapy.

You do not know how my eyes felt heavy every night that I cried myself to sleep.

You do not know how painful it was to see people looking at your son differently.

You do not know how I turned down all opportunities for a better career so I could concentrate on getting my son all better.

You do not know how I felt when he climbs tables and high surfaces, with him, oblivious to danger.

You do not know how I felt when he couldn't tell me he wanted the cookie on top of the shelf.

You do not know how I felt when he was hospitalized over and over for infantile asthma since he was 4 months old.

You do not know how hurtful it was for me when he couldn't utter a single word at 3 years old.

You do not know how hurt I was when he couldn't even look at me even for 5 seconds.

You do not know how I cried and how I couldn't answer the doctors' questions when we rushed him to the hospital when he seized.

You do not know how many prayers I uttered while I was cradling him in the car, telling my husband to please drive faster, holding Dale firmly, shaking him a little, getting him to stop seizing.

You do not know how blurry your vision gets when you see all the doctors in the ER gravitating on your seizing son, talking in jargons you do not understand, making you scream 'what is happening to my son?!'

You do not know how loud the MRI machine gets when you're in the room with your son, with induced sleep, as the doctors were trying to look at what's wrong with his brain, and after everything, they do not find anything wrong. Not a tiny dot of anything. He just seized because HE JUST DID. Because research says that more than half of 'austistic' children have seizure disorders. You cannot cure it. You do not know when it will happen next.

You do not know how many paces I walked waiting for him to wake up from that induced sleep. TOO MANY.

You do not know how painful it was for me to try to make him drink Phenobarbital mixed in Yakult every day for 3 months.

But then...

You do not know how happy I was when he started talking.

You did not see my cry when he stopped walking on tiptoes.

You don't have a slightest idea how ecstatic I was when he started being patient.

You didn't see him when he graduated from SPED with honors.

You weren't the one who enrolled him to a regular school as Grade One FULL MAINSTREAM.

You didn't see him when he danced, when he recited a poem, when he topped the Math exam.

You weren't here when hugs me and tells me he loves me.

(and these were just a fraction of what I went through with Dale)

You are ignorant. Because you are not me. You are not us. So, don't go on national TV, or write a letter telling us that you understand. That you know how it feels. That you have relatives.

'Coz you do not have my DALE.

When I learned that you were running for Senator, I didn't need to search the internet about you. I thought, 'how bad could a mother, an educator, and a wife of the late Senator Roco be?'

I got my answer.

And you, Mrs. Roco, just lost my vote.

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