of nightmares and coffee

Today, right at this moment, I'm looking at my son, Dale, sleeping soundly in my bed. In his hand was a plastic toy flower. My mom gave it to him when he had a tantrum. He wanted to buy something from the store, but sadly, the stores were closed. So, in between sobs, he slept, flower in hand.

My mom went to sleep right after. She was exhausted. Oftentimes, dealing with Dale's tantrums can be physically draining, not to mention emotionally tiring. Mom couldn't stand it when Dale does something unusual, like look up at the ceiling and shake his head, or giggle for no apparent reason.

When I look at him like this, peacefully sleeping, I try to visualize what his dreams may be like. Does he dream at all? Does he have nightmares like we all do? If he does, what is it that he fears the most?

I wish he could tell me when he wakes up. I wish he can wake up in the middle of the night and cry and when I ask him he'll tell me "Mamaw!" just like his brother, Anton. But there were never moments like this.

But I'm still thankful and happy, for when he's awake he can now tell me what he wants... he points, and he whispers them to me. He looks for me now when I'm not in the room, shouting "Mommy!" while going to every room.

Two days ago, he woke up at 4:30 in the morning, he tugged at my hand, and I, thinking that he had a nightmare, told him "Ssh... what is it?", and he told me...

"Coffee?"

And then I looked at my son in the dark. I thought, I was wrong. I have to be thankful if he doesn't have nightmares.

You know what my nightmares are?

They're moments that Dale wakes up in the dark, just sitting beside me, staring at me, and not telling me what he wanted because he did not know how...

And they're moments when Dale wakes up in the middle of the night asking for coffee, but couldn't find me in the dark.

I was cleaning my files, and I saw this piece at the back of some of my papers... I'm not sure when I wrote this, years ago, i think.

I still have the same nightmares now and again.

Effective Communication and Sonia Roco

I got an email from MiranaMedina about my reaction about Sonia Roco:

I forwarded your email to ASP President Dang Koe -- NAIYAK SIYA.

I forwarded it to Sonia ROco -- bumalik ang email, permanent failure daw. Siguro sa dami ng nag react sa sinabi nya, napuno na....

I forwarded it to ASP Founding President Cecile Sicam, at ito reaction nya--

"Sa totoo lang, ako I would still vote for Sonia Roco - maybe now more than ever. Why? because she's still one of the most credible people in the roster of candidates (as against the traditional politicians, jocks and celebrities who are running), because she put autism on the political map with her "innocent" comment (at least she knows what autism is) and because now that she knows us, we will have leverage for legislation in the senate (in case she gets elected). Let's turn her booboo into our advantage, right?"

Best regards to you and your Mom! and Hugs to Dale!

Ako? I stand by my decision not to vote for her. I do not know Sonia Roco. I am not judging her whole personality with just one remark on TV. I am judging her sincerity with 2 remarks she said on TV and one she wrote.

I am a graduate of Communication Arts from a respectable college. We studied Effective Communication like crazy. We watched movies and were asked to answer a lot of questions, make endless reviews and compose summaries.

"why did the white handkerchief fall?"
"what was the significance of the white dove?"
"why was it necessary for her tear to fall from her left eye and not the right?"

In the four years I have been in college, 2 years in graduate, a year in a university, 3 seasons of House, and in the 32 years that I have breathed, I learned that EVERYBODY LIES.

I watched her apology on TV, I read her letter.

She might have apologized, she might have known and could grasp a fraction of what it feels like to be one of us.

But she lied.

Her lies were written. Her lies were in her eyes. You cannot fake sincerity. Genuine sincerity is felt.

"The problem with life is that unlike movies, it doesn't have a background music. We never know how we're supposed to feel..."

When we watched her on TV, all we said after was--that's it?

When we read her apology, I noticed her ending--

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.

Sure, you will. With Dang's support? Goodness me, is this for real?

Let's take a moment to reflect on that.

400,000 affected families have been rallying for a more autism-friendly country. 20 years of bringing everything into perspective. Yes, there was the Magna Carta. Yes, there were special schools. Yes, there were politicians who helped us. But it's not enough. You know it's not.

Let's say you're the President. You only have a limited budget. Which sector will you prioritize?

C'mon. Let's be realistic. The government will prioritize the schooling of the 'normal' kids. You know why, don't you? Because it will cost lesser, and the reaping, sooner. Everyone likes the easy way out. They will choose to finance the kid who can be a corrupt senator sooner, than a child with Autism who can paint (and wish that he can be a dreaming, foul-mouthed, corrupt senatoriable so much later?).

When I learned that Dale has autism, and that there is nothing that this government can do to make him better, I decided to take action on my own. The first thing I did was to accept it. If you do not accept the situation, you can never help the child.

The next thing I did was go online and read. I read a lot about it, the definitions, characteristics, the journals, the experiments. Then I read the stories of other people. I read their heartaches, their triumphs, their truths. And as if reading on my own wasn't enough, I enrolled in a university.

While I was doing those, Dale was in a special school. When he gets home, I teach him what I learned.

We didn't go to therapy. We didn't follow the special diet. We just bonded as mother and son.

I am not saying that other parents have not done what I did. I know that all parents did what they could to help their children. Some were successful, others weren't. Or maybe they still were, but were not just aware of it.

My point is, I learned to choose my battles. A battle with the government is a battle with no evident outcome... just empty promises.

And I'm not going to waste my time wishing they could prove me otherwise.


"Clever is when you believe only half of what you hear. Brilliant is when you know which half to believe."



p.s.
quotations are text messages from a good friend--Basti.

I believe that it's all the more better to continue 'talking' about what Roco said NOW. All the more ASP should talk and comment. it's true that we have been 'heard'.. but it shouldn't stop there. People said that we should take this to our advantage... why aren't ASP taking it now? Sandaling media coverage lang nangyari... walang TV commentary about Alyana, about what Autism is, how many families are affected, how they can help us. Ewan ko. Sabi nga nila, 'Strike while the iron is hot.'

House, MD

The first time I've known about this show was when Season 2 was over. I bought a copy of it (yes, pirated) from somewhere, and had the privilege to meet Dr. Gregory House, MD. I was not sure what to feel about him being so... arrogant. But, despite of all the arrogance and air of insensitivity, I've grown to like the doctor.

Who wouldn't? He's brilliant. And even if he doesn't admit it, he has a heart.

I especially liked the Season 3 episode, entitled Lines in the Sand, where he treated a child (Adam) with severe autism.

Here's a portion of the dialogue that got me:

"See, skinny socially-privileged white people get to draw this neat little circle. Everyone inside this circle is normal. Anyone outside the circle should be beaten, broken, & reset, so they are brought in to the circle. Failing that you should be institutionalized, or worse, pitied."

"So, it's wrong to feel sorry for this little boy?"

"Why would you feel sorry for someone who gets opt-out of the inane courteous formalities which are utterly meaningless, insincere, and therefore degrading? This kid doesn't have to pretend to be interested in your back pain or your excretion or your grandmother's itchy place. Imagine how liberating to live a life free of all the mind-numbing social niceties. I don't pity this kid, I envy him."

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

The previous post will remain as is, even if some people would think that it was too much... that I shouldn't judge Mrs. Roco for one wrong comment. I only read one comment about it. Others were from people who felt like me, and have known how me and my family struggled to keep Dale as 'normal' as he could possibly be.

Here are what some of my friends sent me:

you really know how to melt my heart and make me well up.

Got so inspired with what you've written, it brought me to tears ha, galing mo. Pero yeah, i agree in EVERYTHING you've said. And I felt your pain talaga. Dati I cared about things like this, but I guess I just didn't care enough, pero with everything you've said, it really hit me. I guess it made me realized that I also need to make a stand. Stand against people like her- heartless,selfish and insincere. She doesnt deserve to be part of the Senate.

Also, your joy being around Dale, it's truly inspiring and I felt it too...I felt your joys with every bit of description you've provided,hehe=)

Dale is lucky and truly blessed to have you as his mother=) Just as you're blessed to have him as your son=)

Gurl, sobra kong naiyak sa email mo about Roco and Autism. Nandito nga sa haus si roshel at binasa ko sa kanya ang email mo. Sobra ako naka relate kc ung pamangkin ko ay may down syndrome. Ganun ata talaga ang ibang tao, sobrang insensitive. Dati, nung wala pa akong pamangkin na down syndrome, madalas pag may biruan at sinasabing para kang mongoloid, natatawa din ako sa biro. Pero, nung magkaron kami ng kapamilyang mongoloid, masakit pala ang birong ganun. Kasi kung may makarinig na iba at may kapamilya silang may down syndrome nga, masakit na biro talaga un.

Yan tuloy naging serious ako. Ikaw kasi, pinaiyak mo ako...

I am not posting it here to make you believe that what I wrote was great, that I was right. This is not an editorial writing contest or something I do to make me famous. I already have my hands full with being a full-time mother. That was the only reason why I felt strongly about Mrs. Roco's blunder--I AM A MOTHER.

You see, this is an election. One false move, one stupid remark, will make or break your campaign. She said she has relatives that are special, I believe that's all the more reason why she should've kept her mouth shut.

What I've written is my opinion, it's how I felt. I didn't write it to irk anyone or to tell anyone not to vote for her. I believe that everyone's got a mind of his/her own. Go ahead and vote for her, it's not my call.

Do not get me wrong. I have forgiven her for what she said. After all, as I said, she is ignorant of how it is to have a son with autism, so she doesn't know any better.

But do not think that ONE lost vote (mine) will not ruin her chances of winning. My vote might be the only one she'll need to win this election, and I'm sorry to say, it will take more than a TV and print apology to convince me otherwise.


~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Sometimes I think is it evil of me to want my son to be normal? He might not be able to finish school. He might not be able to get a job. He might not be able to marry and have children.

But that's the point. I keep on thinking what MIGHT not happen.

All I'm sure of now is that we love Dale... and until he cannot decide for his own, we are here to make sure he gets the best that we could offer him. He might take it or he might not. But with faith, I'm sure he will.

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 autistic...me 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
President
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.