Archive for autism

I’m a Coward.

It has been known that Dale has been afraid of a handful of things. The rain was the first which surfaced. Until now, when it rains, I always think if Dale is doing okay in school. I have been worried for almost seven years now. I cannot help worrying over him, especially when I am not with him.

That is, until today.

When we were about to watch the Dolphin show at Ocean Adventure (Subic), one of the coordinators approached us and asked if we were willing to let Dale be a volunteer for the Dolphin Encounter portion. Of course, I have to ask Dale first. He thought for a moment and said yes. I told the coordinator that we’ll give it a try.

I was worried about the ramp where he is going to walk on because it’s just some sort of a float. But he walked slowly but bravely, and told us he can do it. I caught him on video practicing the moves he would have to make. Still, I cannot help worrying. You can hear me saying his name on video, worried that he might go over the fence, spinning like he was. I went back to my seat, because I’m not allowed to be with him, and then waited, wishing that everything will be fine.

Then, as if God was making fun of me…. it rained.

I ran back to the holding deck and told the coordinator that Dale was scared of the rain, so if she can please let me in, and that if she can find someone else.

And then I thought, maybe this is not God making fun of me, but God pushing Dale to go further showing him that there is nothing to be afraid of.

I then told her to talk to Dale first if he’s willing to get wet in the rain. She came back with a smile and said that Dale thought for a moment and said yes.

With more than a hundred people about to watch my son… they started watching me as I prayed. I said, please do not make it harder for him than it already is…. watching the other side of the sky… seeing the rain falling harder there… about to come to us still…

He came on the ramp without a care.

He went almost on the edge possibly without fear.

He touched the dolphin with careful hands.

He snapped his hand back when they said he could touch the dolphin’s tongue.

He made them dance. He made them dive.

All of these he did without me by his side.

At that moment, it felt like God was laughing in the heavens and telling me… “See? There really was nothing to be afraid of.”

Because at that moment, I realized, I was the one who was scared.

Dale was there to make me brave, because he already is.

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.

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 Communiation 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.’

Effective Communiation 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

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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.

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

More about Autism? You may read my friend, Joel’s post.

House, MD

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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.

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

More about Autism? You may read my friend, Joel’s post.

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.

Asperger’s Syndrome and My Little Rain Man

I posted this on Multiply and sent this as an email to all my friends and relatives, sharing the good news about Dale… this has a more happier tone to it, that’s why i’m posting it here, too.

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

Hello.

Yesterday, we went to a Developmental Pediatrician to have Dale assessed for the second time. The first time if you remember was when he was almost 3 years old.

He was diagnosed as having Autism Spectrum Disorder. I know mahirap siyang intindihin… ako rin nung una, nalilito nung pinagaralan namin ito sa UP.

Nasa ibaba ang medyo scientific na page-explain ng differences ng AUTISM per se, at ng AUTISM SPECTRUM DISORDER (ASD), in which Dale falls.

Ngayon, under ng ASD, meron pang ibang categories, kaya tinawag na spectrum (meaning range).. which u can also find below.

Since bata pa masyado si Dale noon, hindi pa talaga pwedeng ma-pinpoint kung talagang AUTISTIC si Dale or under lang siya ng ASD.

Ngayong 6 years old na siya, the Dev Ped pinned it down to Asperger’s Syndrome, which they also call high-functioning autism.

He has certain qualities or characteristics as that of an autistic child, but he has normal or even above average intelligence, and can express himself using the appropriate language.

Whereas, pag autistic, low ang intelligence (in all aspects, or is exceptional to only one–autistic savant) at hindi rin marunong mag-express ng feelings.

If you are thinking if it makes a whole lot of difference, the answer is very much so. Coz people with Asperger’s Syndrome, with the right intervention, can live a normal life in the future.

he may finish school, and land a job. These aspects, I was very much worried about before.

So when the doctor told me that what Dale had was Asperger’s, I could’ve jumped for joy… natanggalan ako ng napakaraming tinik sa dibdib…

Today, all my colleagues told me I looked it… and I told them it’s because i really was happy.

Even if I didn’t jump for joy, I settled to treating the kids with pizza yesterday. Hahahaha. I told them that we have to celebrate that day for Dale.

Masaya din ako because konti lang talaga mali ni Dale sa assessment. When he was asked to draw a man, he drew a stick figure. when he was asked to draw a woman, he drew another stick figure, but this time, it had two curved lines on its head resembling pigtails, and it had a skirt on. meaning: he can distinguish. even if it did looked like an ant to me.

when he was asked to draw a house, all of us cracked up. Coz he drew it complete with a chimney with smoke coming out of it.

the doctor was impressed. all of us where. nagulat din ako coz he answered questions when i didn’t know he could do so. nagulat ako kasi alam pala niya yung mga bagay na yun.

Now to tell it all… syempre happiness is coupled again with some small problems…. all can be remedied with money. hahahaha.

intervention needed was behavior modification therapy which costs about 500 per session… which the doctor told us will be at least once a week depending on the therapist… so if the therapist decides that it’s twice or thrice a week… it resembles an arm and a leg to me. haha.

the therapist’s assessment (2500) is different from the Dev Ped’s assessment which cost us 1500. the therapist’s assessment is more thorough and for 3 consecutive days.

and the Dev Ped decided Dale can already be mainstreamed into a regular school… but not next year. and not in the nearby public preschool. She wants it to be done NOW. in a private preschool with only 10-15 students (Prep level). this will be done together with SPED school. so parang 2 schools ang aatenan niya… pero less na sa SPED.

these are some problems i am facing right now… but i know i can cope with it in some way.

i will be talking to his teacher on my day-off and we’ll start from there. kasama rin kasi ang teacher niya sa pagpa-plan ng intervention for him.

for now, ninanamnam ko ang happiness. ayoko munang isipin ang mga kontra. hahahaha.

As i’ve said before, in terms of Dale’s condition, God gives me happiness in small servings… but now, God gave me more than I could swallow.

my little Rain Man Please join me in thanking God for this big miracle.

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

Autism is a developmental disability that affects a person’s ability to communicate, understand language, play, and interact with others. Autism is a behavioral syndrome, which means that its definition is based on patterns of behaviors that a person exhibits. Autism is not an illness or a disease. It is not contagious and, as far as we know, it is not acquired through contact with the environment.

Autism is a neurological disability that is presumed to be present from birth and is always apparent before the age of three. Although autism affects the functioning of the brain, the specific cause of autism is unknown. In fact, it is widely assumed that there are most likely multiple causes, each of which may be manifested in different forms, or subtypes, of autism.

Autism Spectrum Disorder (ASD) is an increasingly popular term that refers to a broad definition of autism including the classical form of the disorder as well as closely related disabilities that share many of the core characteristics. ASD includes the following diagnoses and classifications:

(1) Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS), which refers to a collection of features that resemble autism but may not be as severe or extensive;

(2) Rett’s syndrome, which affects girls and is a genetic disorder with hard neurological signs, including seizures, that become more apparent with age;

(3) Asperger syndrome, which refers to individuals with autistic characteristics but relatively intact language abilities, and;

(4) Childhood Disintegrative Disorder, which refers to children whose development appears normal for the first few years, but then regresses with the loss of speech and other skills until the characteristics of autism are conspicuous. Although the classical form of autism can be readily distinguished from other forms of ASD, the terms autism and ASD are often used interchangeably.

Asperger’s Disorder is the term for a specific type of pervasive developmental disorder which is characterized by problems in development of social skills and behavior. In the past, many children with Asperger’s Disorder were diagnosed as having autism, another of the pervasive developmental disorders, or other disorders. While autism and Asperger’s have certain similarities, there are also important differences. For this reason, children suspected of having these conditions require careful evaluation.

In general, a child with Asperger’s Disorder functions at a higher level than the typical child with autism. For example, many children with Asperger’s Disorder have normal intelligence. While most children with autism fail to develop language or have language delays, children with Asperger’s Disorder are usually using words by the age of two, although their speech patterns may be somewhat odd.

Most children with Asperger’s Disorder have difficulty interacting with their peers. They tend to be loners and may display eccentric behaviors. A child with Asperger’s, for example, may spend hours each day preoccupied with counting cars passing on the street or watching only the weather channel on television. Coordination difficulties are also common with this disorder. These children often have special educational needs.

Although the cause of Asperger’s Disorder is not yet known, current research suggests that a tendency toward the condition may run in families. Children with Asperger’s Disorder are also at risk for other psychiatric problems including depression, attention deficit disorder, schizophrenia, and obsessive-compulsive disorder.

The outcome for children with Asperger’s Disorder is generally more promising than for those with autism. Due to their higher level of intellectual functioning, many of these children successfully finish high school and attend college. Although problems with social interaction and awareness persist, they can also develop lasting relationships with family and friends.

Asperger’s Syndrome and My Little Rain Man

I posted this on Multiply and sent this as an email to all my friends and relatives, sharing the good news about Dale… this has a more happier tone to it, that’s why i’m posting it here, too.

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

Hello.

Yesterday, we went to a Developmental Pediatrician to have Dale assessed for the second time. The first time if you remember was when he was almost 3 years old.

He was diagnosed as having Autism Spectrum Disorder. I know mahirap siyang intindihin… ako rin nung una, nalilito nung pinagaralan namin ito sa UP.

Nasa ibaba ang medyo scientific na page-explain ng differences ng AUTISM per se, at ng AUTISM SPECTRUM DISORDER (ASD), in which Dale falls.

Ngayon, under ng ASD, meron pang ibang categories, kaya tinawag na spectrum (meaning range).. which u can also find below.

Since bata pa masyado si Dale noon, hindi pa talaga pwedeng ma-pinpoint kung talagang AUTISTIC si Dale or under lang siya ng ASD.

Ngayong 6 years old na siya, the Dev Ped pinned it down to Asperger’s Syndrome, which they also call high-functioning autism.

He has certain qualities or characteristics as that of an autistic child, but he has normal or even above average intelligence, and can express himself using the appropriate language.

Whereas, pag autistic, low ang intelligence (in all aspects, or is exceptional to only one–autistic savant) at hindi rin marunong mag-express ng feelings.

If you are thinking if it makes a whole lot of difference, the answer is very much so. Coz people with Asperger’s Syndrome, with the right intervention, can live a normal life in the future.

he may finish school, and land a job. These aspects, I was very much worried about before.

So when the doctor told me that what Dale had was Asperger’s, I could’ve jumped for joy… natanggalan ako ng napakaraming tinik sa dibdib…

Today, all my colleagues told me I looked it… and I told them it’s because i really was happy.

Even if I didn’t jump for joy, I settled to treating the kids with pizza yesterday. Hahahaha. I told them that we have to celebrate that day for Dale.

Masaya din ako because konti lang talaga mali ni Dale sa assessment. When he was asked to draw a man, he drew a stick figure. when he was asked to draw a woman, he drew another stick figure, but this time, it had two curved lines on its head resembling pigtails, and it had a skirt on. meaning: he can distinguish. even if it did looked like an ant to me.

when he was asked to draw a house, all of us cracked up. Coz he drew it complete with a chimney with smoke coming out of it.

the doctor was impressed. all of us where. nagulat din ako coz he answered questions when i didn’t know he could do so. nagulat ako kasi alam pala niya yung mga bagay na yun.

Now to tell it all… syempre happiness is coupled again with some small problems…. all can be remedied with money. hahahaha.

intervention needed was behavior modification therapy which costs about 500 per session… which the doctor told us will be at least once a week depending on the therapist… so if the therapist decides that it’s twice or thrice a week… it resembles an arm and a leg to me. haha.

the therapist’s assessment (2500) is different from the Dev Ped’s assessment which cost us 1500. the therapist’s assessment is more thorough and for 3 consecutive days.

and the Dev Ped decided Dale can already be mainstreamed into a regular school… but not next year. and not in the nearby public preschool. She wants it to be done NOW. in a private preschool with only 10-15 students (Prep level). this will be done together with SPED school. so parang 2 schools ang aatenan niya… pero less na sa SPED.

these are some problems i am facing right now… but i know i can cope with it in some way.

i will be talking to his teacher on my day-off and we’ll start from there. kasama rin kasi ang teacher niya sa pagpa-plan ng intervention for him.

for now, ninanamnam ko ang happiness. ayoko munang isipin ang mga kontra. hahahaha.

As i’ve said before, in terms of Dale’s condition, God gives me happiness in small servings… but now, God gave me more than I could swallow.

my little Rain Man Please join me in thanking God for this big miracle.

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

Autism is a developmental disability that affects a person’s ability to communicate, understand language, play, and interact with others. Autism is a behavioral syndrome, which means that its definition is based on patterns of behaviors that a person exhibits. Autism is not an illness or a disease. It is not contagious and, as far as we know, it is not acquired through contact with the environment.

Autism is a neurological disability that is presumed to be present from birth and is always apparent before the age of three. Although autism affects the functioning of the brain, the specific cause of autism is unknown. In fact, it is widely assumed that there are most likely multiple causes, each of which may be manifested in different forms, or subtypes, of autism.

Autism Spectrum Disorder (ASD) is an increasingly popular term that refers to a broad definition of autism including the classical form of the disorder as well as closely related disabilities that share many of the core characteristics. ASD includes the following diagnoses and classifications:

(1) Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS), which refers to a collection of features that resemble autism but may not be as severe or extensive;

(2) Rett’s syndrome, which affects girls and is a genetic disorder with hard neurological signs, including seizures, that become more apparent with age;

(3) Asperger syndrome, which refers to individuals with autistic characteristics but relatively intact language abilities, and;

(4) Childhood Disintegrative Disorder, which refers to children whose development appears normal for the first few years, but then regresses with the loss of speech and other skills until the characteristics of autism are conspicuous. Although the classical form of autism can be readily distinguished from other forms of ASD, the terms autism and ASD are often used interchangeably.

Asperger’s Disorder is the term for a specific type of pervasive developmental disorder which is characterized by problems in development of social skills and behavior. In the past, many children with Asperger’s Disorder were diagnosed as having autism, another of the pervasive developmental disorders, or other disorders. While autism and Asperger’s have certain similarities, there are also important differences. For this reason, children suspected of having these conditions require careful evaluation.

In general, a child with Asperger’s Disorder functions at a higher level than the typical child with autism. For example, many children with Asperger’s Disorder have normal intelligence. While most children with autism fail to develop language or have language delays, children with Asperger’s Disorder are usually using words by the age of two, although their speech patterns may be somewhat odd.

Most children with Asperger’s Disorder have difficulty interacting with their peers. They tend to be loners and may display eccentric behaviors. A child with Asperger’s, for example, may spend hours each day preoccupied with counting cars passing on the street or watching only the weather channel on television. Coordination difficulties are also common with this disorder. These children often have special educational needs.

Although the cause of Asperger’s Disorder is not yet known, current research suggests that a tendency toward the condition may run in families. Children with Asperger’s Disorder are also at risk for other psychiatric problems including depression, attention deficit disorder, schizophrenia, and obsessive-compulsive disorder.

The outcome for children with Asperger’s Disorder is generally more promising than for those with autism. Due to their higher level of intellectual functioning, many of these children successfully finish high school and attend college. Although problems with social interaction and awareness persist, they can also develop lasting relationships with family and friends.

Asperger’s Syndrome

Yan ang diagnosis ngayon kay Dale… Nung una siyang in-assess ni Dra. Alexis Reyes, ang diagnosis ay Autism Spectrum Disorder… meaning hindi pa sigurado kung anong klase o nasaang kategorya si Dale… mahirap din kasing mag-diagnose agad kasi bata pa….

Kanina, masayang masaya ako kasi una sa lahat, sumama si Ronald sa assessment… Naghalf-day ito sa pagiging store manager ng Jollibee sa may BF Parañaque… AT! siya ang nagbayad ng 1500 pesos na assessment fee. bwahahahaha.

Pangalawa, dahil konti lamang ang mali ni Dale sa mga tanong ng doktor… kulang pa lang siya sa comprehension, pero ang intellect at reading abilities ay pang-Grade 1 na…

At napatunayan na nga na si Dale ay nasa kategoryang Asperger’s Syndrome… parang high-functioning autism…. na kapag naalagaan… naalalayan… ay pwedeng magawan ng paraan…

ang ’sakit’ na ito ay panghabang-buhay… ‘labeled’ na ang anak ko na may ganitong ’sakit’. hindi ko man ito gustuhin, andito na. ang tangi na lamang naming magagawa ay sundin ang mga mas nakakaalam para ‘gumaling’ siya… para kahit paano ay mabuhay siya ng normal…

nung sinabi na sa amin ang kelangang gawin… hay… pagkatapos kong mabunutan ng maraming tinik, isang malaking kutsilyo na naman ang tumarak sa dibdib ko…

sabi ng doktor, pwede na siyang ilagay sa isang regular school as a ‘mainstreamed’ student. hay…. salamat po….

kaso lang, gusto niya, ngayon na. hindi next school year. as in, NOW NA.

unang problema: saan?

alam naman natin na ang eskwela ay nagsimula noon hunyo pa.

pangalawang problema: saang kamay ng Diyos ako kukuha ng perang pang-tuition?

sabi ng doktor, kelangan daw siyang i-therapy… behavior management… nag-refer siya ng center sa may Parañaque… ang gusto niya once a week.

tinawagan ko ang center…

pangatlong problema: meron pa palang assessment ulit doon for 3 consecutive days, sa halagang tumataginting na 2500 pesos. Dun din sasabihin ng therapist kung pwede nga ba ang once a week lang o kelangang mas marami pa (mga mukhang pera!!!).

pang-apat na problema: ang therapy mismo ay 450 pesos per session.

taena, di ba?

sa lahat ng bagay, kakambal ang pera.

pera, pera, pera!

gustuhin ko mang tulungan ang anak ko, pano ko naman gagawin yun? Ito pa lang pangaraw-araw naming gastusin sa bahay, hindi ko na mapagkasya ang sinusweldo ko, eto pa?

iniisip ko, bakit sa amin pa binigay to, bakit si Dale pa, eh hindi naman kami mayaman para matustusan ang mga pangangailangan niya? Minsan, maiisip mo tuloy, is God really merciful? Is He playing fair?

Pero naiisip ko rin naman lagi, ano na lang ang nararamdaman ng mga pamilyang mas mahirap pa sa amin na may anak ding tulad ni Dale? Pano kung mas malalang kundisyon pa ang ibinigay sa amin ng Diyos?

Pero, pinalaki ako ng mga magulang ko not to dwell on irrelevant things and to always give thanks to everything that comes our way…. Kaya, eto, alam kong pagkatapos kong mamighati ng sandali… hihinga ulit ako.

hay… ba-bye na… tumutulo na ang luha ko. bukas na ako hihinga, promise.


Asperger’s Disorder is the term for a specific type of pervasive developmental disorder which is characterized by problems in development of social skills and behavior. In the past, many children with Asperger’s Disorder were diagnosed as having autism, another of the pervasive developmental disorders, or other disorders. While autism and Asperger’s have certain similarities, there are also important differences. For this reason, children suspected of having these conditions require careful evaluation.

In general, a child with Asperger’s Disorder functions at a higher level than the typical child with autism. For example, many children with Asperger’s Disorder have normal intelligence. While most children with autism fail to develop language or have language delays, children with Asperger’s Disorder are usually using words by the age of two, although their speech patterns may be somewhat odd.

Most children with Asperger’s Disorder have difficulty interacting with their peers. They tend to be loners and may display eccentric behaviors. A child with Asperger’s, for example, may spend hours each day preoccupied with counting cars passing on the street or watching only the weather channel on television. Coordination difficulties are also common with this disorder. These children often have special educational needs.

Although the cause of Asperger’s Disorder is not yet known, current research suggests that a tendency toward the condition may run in families. Children with Asperger’s Disorder are also at risk for other psychiatric problems including depression, attention deficit disorder, schizophrenia, and obsessive-compulsive disorder.

Child and adolescent psychiatrists have the training and expertise to evaluate pervasive developmental disorders like autism and Asperger’s Disorder. They can also work with families to design appropriate and effective treatment programs. Currently, the most effective treatment involves a combination of psychotherapy, special education, behavior modification, and support for families. Some children with Asperger’s Disorder will also benefit from medication.

The outcome for children with Asperger’s Disorder is generally more promising than for those with autism. Due to their higher level of intellectual functioning, many of these children successfully finish high school and attend college. Although problems with social interaction and awareness persist, they can also develop lasting relationships with family and friends.

my own little Rain Man.

i watched Rain Man a couple of days back…. and in the middle of the movie, i felt the familiar tears streaming down my cheeks.

the movie brought back my worries…. my doubts… my confusion… my fear of the future for my son, Dale.

On the 20th, he will be assessed again by a Developmental Pediatrician… and i’m currently feeling like he was gonna take the board exams… what if he ‘fails’? what if the doctor says that he still cannot be transferred to a regular school? what if she says he cannot live a normal life?

But just like what my cousin told me… just like the board exams, you get to have another try…. if not next year, then we still have the next.

there’s not a day that i do not think of Dale’s future… will he be able to finish school? will he be able to get a job? will he be able to get over his fear of rain? marry and have kids?

don’t get me wrong…. Dale is not like the children with autism you see on tv… he does not have too many peculiar traits… he does not rock back and forth… he does not look like one at all…

but he does get scared when it rains… even when it isn’t raining yet… he slams the door shut, closes the windows, and draws the blinds down when he sees the sky turning gray…

he says it’s gonna rain… like a weather man.

and it always does.

and he cowardly lies down the sofa and covers his ears with a pillow, or with his fingers… and just lie there for hours on end.

and when i remove his fingers he will start screaming at me.

i asked him once why he’s scared of rain… he says because it brings thunder… and he’s scared of thunder… that it hurts his ears…

and the thought of how much it hurts him hurts me, too.

How long will this go on? How much more pain will my son endure? Why him? Why this?

But everyday, I still thank God for his successes and failures… days when he reasons out… days when he talks to me on the phone… days when he looks at me when he talks… days when he does not get sick… days when i wake up in the middle of the night and i see him breathing… days when he says something funny, and knowing that it was… days when he tells me what date it was yesterday, today, and the next day… days when he remembers how many of his classmates were absent the day before… days when i ask him something about the peculiar things he does, and he reasons out, and then i, feeling like a fool and ashamed of myself, finally understands why he does them, because it wasn’t really peculiar to him at all… days that go by that he does not have a seizure…

Even with all the bad things that happened to me and my family… I still am grateful.

…everyday I thank God for my own little Rain Man.

What You Get

by Kristin Youmans

“This child has autism.” That’s what she said. “This child.” My child.
My two-year-old little boy with blue eyes so bright they look like they
have backlighting. “Has autism.” Like he’d caught a cold, and not a
life sentence. My brain went hollow, all thoughts and questions and hope,
silent – stunned. She expected me to break down and cry. She held her
breath and waited to see what I would do. Her glasses reflected the
fluorescent lighting and I couldn’t see her eyes, only the two reflected
orbs of white neon staring back at me. The word echoed through the room
of the “evaluation” office that was filled with children’s toys my son
was wandering through but apparently not playing with in the correct
way, according to their scales. My son’s pediatrician had recommended that
I take my son to be evaluated because he wasn’t picking up language at
the rate most kids do by age two.

I didn’t know what to do. So I pretended that I hadn’t just had my soul
pulled out and murdered and decided to remain as calm as possible.
Maybe I was just misunderstanding her, “Okay, autism. When I think of
autism I think of Rain-Man. That’s not my son.”

She and the other “specialist” (though neither of them were doctors)
began pelting me with descriptions of what autism is. It felt like having
darts repeatedly thrown at my body from all directions:
“Inability to understand emotion.”

“…not interested in our world – autistic people live on their own
planes.”

“They don’t pick up language – that’s usually the first sign.”
That night in bed I tried to watch TV to keep my mind empty. It wasn’t
working. I got up and poured a big glass of wine. I sat in front of the
television and still the word “autism” kept repeating louder and louder
in my ear. I didn’t know what to do with that word. I couldn’t fix this
with a pill or an ice pack. I couldn’t even hope to change it. My baby
was hurting in the most profound way possible and I had no way to make
him better. I knew that much.

When I was a little girl, about four, I would play hotel manager. Not
house – not wife or mother, but hotel manager. I had a play cash
register and I would take the guests money and assign them to their room and
play all kinds of scenarios in my head about which guest would end up in
bed with which other guest. I don’t think I knew what they would do
once in bed, but I figured it had to be something good. Once everyone was
checked in I transformed from front desk girl to a guest. I was always
a beautiful foreign woman (French probably) who had a lot of money. I
probably always wore big turquoise earrings. I was fabulous.

Autism. Autism. Autism. I read and read and read. I spent weeks reading
every book available that said anything about autism. I wanted to know
everything there was to know about it. I wasn’t searching to learn
about my son’s problem, I was searching for a way out of it. I was looking
for things about autism that my son didn’t have. I watched him
constantly. I was perched on the edge of a cliff that always ended in the
hopeless cave of autism. He would pace and I would say, “Oh, that’s it.
She’s right. He’s autistic.” And I would fall off the cliff.

I felt compelled to tell everyone that I met that my son didn’t talk
yet. I never mentioned the autism though. I never wanted that look of
pity or that awkward silence where they wouldn’t know what to say to me.
Everyone I talked to had a nephew, or a cousin, or someone they knew who
didn’t talk until they were three or four. This was comforting. But
there were things beyond the lack of vocabulary that twisted my gut.

Once a woman said to me, “Just trust your gut. It’s always right.” I
knew that. I just didn’t want to admit that my gut was telling me
something I didn’t want to hear. He doesn’t talk. He doesn’t say mommy, daddy,
or anything really. He speaks in a language all his own. He rarely
makes eye contact, and he’s generally unaware of his surroundings – he’s
wrapped up in his own mind. When strangers attempt to talk to him in
public, he doesn’t notice. They always look to me, and I don’t look back at
them. I don’t feel like explaining.

When I was about 8, in a video store with my parents I wandered away
and found a movie called “Angel”. It was about a beautiful woman who was
a hooker by night, and something else by day that I don’t remember – a
cop maybe. It was the hooker part that stuck out to me. I figured that
that being a hooker wouldn’t be all that bad of a job. You could have
sex, which everyone seemed to really like, and you could get paid for
it. What’s wrong with that? Though I also thought being a nun had its
bonuses too, nobody messes with nuns – they can do whatever they want and
people won’t question them. I was into watching “The Flying Nun” reruns
at the time obviously. I figured that could be my day job – nun by day,
hooker by night. It was the best of both worlds really. I had high
aspirations.

The speech therapist was at my house. This was the same woman who told
me that he “had” autism. She was holding him down in her lap and trying
to force his hands to do the – put the ring on the stick – game she’d
brought with her (how this helps autism is still a mystery to me). He
was screaming so loudly that he’d reached the point where there was no
sound. His body was arched – one big muscle, fighting to get away from
her with every ounce of his being.

Every nerve in my body was standing at attention. My adrenaline reached
a point I felt I could black out. She was repeating in a sort of crazed
voice, “Put the ring on the stick Jeffrey.” He fought and fought. I
stopped it. I stood up, pulled him out of her arms and walked him upstairs
to his bedroom. He lay on his bed and cried, calming down.

I walked down the stairs. She began to stammer about something else
that he needed, or that I needed to be doing. I told her she needed to
leave my house. I didn’t say any more than that. Whatever else she said I
ignored. The blood flowing in my head was louder than her voice. She
left. I slid down the back of the door and sat. I couldn’t move, couldn’t
think, and couldn’t breathe. I was failing him.

When I was ten I thought my uncle Rob knew the secrets of the universe
because he would take me hunting for fossils. We would hike through the
foothills of the mountains and at certain points, low points, he would
stop and we would start digging. We found rocks on which you could
clearly make out ghosts of seashell formations on their surfaces – in the
middle of the desert. He would tell me the history of the land and how
it all used to be an ocean. He’s a geologist.

That Christmas Eve my whole family was together. My cousins were
whining about wanting to open presents. I sat quietly, trying to seem mature
- above wanting silly things like presents.

When the adults gave in and the rest of the kids (all boys – I’m the
only girl) were tearing into their gifts like a pack of dogs on a fresh
kill, my uncle handed me a present and smiled. I looked up at him, and
tried not to act too excited (I had a reputation to think about).

I opened it – a book on Astronomy. He knew I loved the stars and had
decided that when I grew up I wanted to be an astronomer. My parents
laughed at me and said things like, “okay, this week an astronomer, and
next week it will be a lawyer or veterinarian again.”

His gift meant that he took me seriously. I read the book cover to
cover. I spent nights in my backyard lying on the diving board, staring up
into the stars, learning everything I could – dreaming about being an
astronomer – but mostly about being “grown up.”

I stood up and looked out the peephole to make sure the speech
therapist was gone. I half expected to see her staring back at me through the
peephole with a crazed look in her eyes, like something out of a horror
movie. But her car was gone. I walked across the hallway to the
staircase and felt the room dim and brighten, as the blood surged through my
brain. It was like all of my emotions were trying to squeeze through my
heart in that moment. All of my worry, all of my pain, all of my self-
blame and frustration had reached the peak. I was doing everything
“they” told me to. I was following all of the rules and it wasn’t working.
It was making things worse. Any light at the end of the tunnel turned
out to be a mirage.

I walked up the stairs and opened the door to Jeffrey’s bedroom. He was
lying in the same spot I left him in crying moments before, asleep. He
was exhausted. My heart stopped and felt the squeeze that I always get
when I look at him. He is the most beautiful thing I have ever seen.

I was lying in bed next to my husband three years after we were married
- officially grown up – I had a husband, a job, a mortgage and dogs – I
was fully cooked. He was snoring so loudly that I couldn’t sleep.
Something felt like it was pulling on the back of my spine – a thought that
refused to exit my brain, so it traveled it’s way down my back and made
camp, unwilling to give up.

I couldn’t ignore it anymore. I got up and dug the pregnancy test out
from underneath the sink. We’d decided to start trying to get pregnant
maybe two weeks before. I wasn’t even late. But I knew, so I sat and
aimed at the stick – following all of the directions.

Waiting. It says to wait three minutes. Yeah right. I stared at it the
whole time, watching to see what it would do. Two lines equals
pregnant. One line not. The first line appeared quickly. Then, just as quickly
a second line appeared. I checked the directions again. Yes, clearly it
said two lines pregnant one line not. I had two very clear lines. I
waited the three minutes to see if the second line would disappear, change
its mind. It didn’t. The overhead light felt like a strobe, blinking on
and off with the blood rushing through my brain.

Dizzy. I walked back into the bedroom, looked at my husband snoring
happily. Why is it that men can fall asleep so easily and then sleep
uninterrupted?

I couldn’t wake him up – too anticlimactic. I decided to plan a
creative way of telling him -something good I would figure out later, I knew
he was going to be ecstatic. I got into bed. My heart was beating so
hard my head felt like it was bouncing up and down on the pillow. I was
happy. But then, after I thought about it for a minute I was horrified.
Me – a mother? I couldn’t even keep my own bedroom clean, how was I
going to be responsible for a life besides my own? What was I thinking? I
needed to quit smoking – right then. I needed to be someone else
completely. My life was over as I knew it. MY life was no more, now I was two.
I didn’t know if I could handle it. For the first time in my life I was
actually truly terrified. I lay silent, unable to sleep as I stared at
the ceiling.

At some point my body gave in and I slept – at least for a few minutes.
In that time I dreamt that I was at a huge dinner – with my entire
family even my grandma who’d died my freshman year of high school. We were
seated at tables covered in white tablecloths and at some point during
the dinner I looked under my table and found a blue eyed little baby
boy smiling up at me from a carriage. I decided that I would pretend he
was mine so I could keep him.

Tears fell as I watched him sleep, unaware of the turmoil already
surrounding his short life. I heard the door open and the dogs start their
happy dance for my husband getting home. I walked down the stairs,
avoided looking at him – I couldn’t talk without screaming. I grabbed my
keys and passed him in the hallway his voice trailing behind me, “What’s
wrong?”

I got in my car and tore out of the neighborhood – past all of the
perfect cookie cutter homes with competing perfectly manicured lawns – past
the jogging trail with the perfect families holding hands and pushing
strollers after dinner. I thought about driving up on the sidewalk and
slaughtering them, but decided that would be a bad idea. I just wanted
to inflict as much pain as I felt.

I never wanted any of this. I never wanted to be married, or have kids
- how did I get here? How did I let this happen? The neighborhood faded
into woods, and I just kept going, without any clue where I was going.
I drove as fast as the curves in the road would allow. I wanted to
drive so fast that I could burst the bubble of my life – somehow stop the
walls from closing in.

I was getting lost, on purpose. My phone rang. I looked down at the
number – home. I threw the phone to the floor, wanting to break the tether
that dragged me back. I looked up and saw a tree in the headlights. I
slammed on the brakes, pulled the wheel to the left and fishtailed, into
the trees, the car skidded and I heard wood cracking as the car left
pavement and crashed into the forest – somehow managing not to hit
anything except underbrush.

I sat – stunned, silent, embarrassed even though I was alone. I’d lost
control – of everything.
I wept until it hurt to breathe. The phone kept ringing. I finally
picked up.
“What?”
“Where are you?”
“Nowhere”
“What happened?
“He’s not okay and there’s nothing I can do about it.”
“He’s fine.”
“No, he’s not.”
“He’s going to be fine.”
“How do you know?”
“I just do.”
“No, you just hope.”
“Well….”
“Well, what?”
“Well – whatever he is – or isn’t – it doesn’t matter. We’re not going
to love him any less.”

I was lying in Jeffrey’s bed a couple of months before his third
birthday, having just read him his bedtime story. I stared off into space, as
he looked through the book again – quietly – both of us sunk inside
ourselves. I was thinking about the bath I planned on taking as soon as he
was asleep. Who knows what he was thinking – Elmo and Big Bird dreams.
We always do this – I read him his story, usually at least twice, (he
indicates he wants it read again by turning back to the first page and
putting my hand on the words) and then I lay and hold him for a few
minutes, more for me than him, and then I say goodnight.

“Okay baby, I’m gonna’ go. You sleep good and I’ll see you in the
morning.” I always say that, and then I lean over and give him a kiss on the
cheek, which he takes quietly with no response. Then I get up, turn out
the light, and close the door behind me saying, “I love you.”

But that night things went differently. I was leaning down saying “You
sleep good” reaching for the kiss, then as I pulled away I felt his
hands reach up and grab my cheeks. He pulled me towards him – for a second
I had no idea what was going on. It happened so quickly I didn’t have
time to think. He just pulled me by my cheeks down towards him, kissed
me on the lips. Actually he put his lips to mine, pulled away and then
smacked his lips and said, “omma” (close enough).

I almost passed out. He still held me by my cheeks and stared into my
eyes smiling – giggling a little – waiting for my reaction. He’d never
called me momma before, or kissed me back, and then suddenly for some
reason he chose that night to do both.

I started laughing. I choked on my tears and laughter all spilling out
at once. We laughed together, staring into each other’s eyes. The fog
had lifted for a moment, long enough for us to connect and understand
through our eye contact and our laughter – everything.

What You Get

by Kristin Youmans

“This child has autism.” That’s what she said. “This child.” My child.
My two-year-old little boy with blue eyes so bright they look like they
have backlighting. “Has autism.” Like he’d caught a cold, and not a
life sentence. My brain went hollow, all thoughts and questions and hope,
silent – stunned. She expected me to break down and cry. She held her
breath and waited to see what I would do. Her glasses reflected the
fluorescent lighting and I couldn’t see her eyes, only the two reflected
orbs of white neon staring back at me. The word echoed through the room
of the “evaluation” office that was filled with children’s toys my son
was wandering through but apparently not playing with in the correct
way, according to their scales. My son’s pediatrician had recommended that
I take my son to be evaluated because he wasn’t picking up language at
the rate most kids do by age two.

I didn’t know what to do. So I pretended that I hadn’t just had my soul
pulled out and murdered and decided to remain as calm as possible.
Maybe I was just misunderstanding her, “Okay, autism. When I think of
autism I think of Rain-Man. That’s not my son.”

She and the other “specialist” (though neither of them were doctors)
began pelting me with descriptions of what autism is. It felt like having
darts repeatedly thrown at my body from all directions:
“Inability to understand emotion.”

“…not interested in our world – autistic people live on their own
planes.”

“They don’t pick up language – that’s usually the first sign.”
That night in bed I tried to watch TV to keep my mind empty. It wasn’t
working. I got up and poured a big glass of wine. I sat in front of the
television and still the word “autism” kept repeating louder and louder
in my ear. I didn’t know what to do with that word. I couldn’t fix this
with a pill or an ice pack. I couldn’t even hope to change it. My baby
was hurting in the most profound way possible and I had no way to make
him better. I knew that much.

When I was a little girl, about four, I would play hotel manager. Not
house – not wife or mother, but hotel manager. I had a play cash
register and I would take the guests money and assign them to their room and
play all kinds of scenarios in my head about which guest would end up in
bed with which other guest. I don’t think I knew what they would do
once in bed, but I figured it had to be something good. Once everyone was
checked in I transformed from front desk girl to a guest. I was always
a beautiful foreign woman (French probably) who had a lot of money. I
probably always wore big turquoise earrings. I was fabulous.

Autism. Autism. Autism. I read and read and read. I spent weeks reading
every book available that said anything about autism. I wanted to know
everything there was to know about it. I wasn’t searching to learn
about my son’s problem, I was searching for a way out of it. I was looking
for things about autism that my son didn’t have. I watched him
constantly. I was perched on the edge of a cliff that always ended in the
hopeless cave of autism. He would pace and I would say, “Oh, that’s it.
She’s right. He’s autistic.” And I would fall off the cliff.

I felt compelled to tell everyone that I met that my son didn’t talk
yet. I never mentioned the autism though. I never wanted that look of
pity or that awkward silence where they wouldn’t know what to say to me.
Everyone I talked to had a nephew, or a cousin, or someone they knew who
didn’t talk until they were three or four. This was comforting. But
there were things beyond the lack of vocabulary that twisted my gut.

Once a woman said to me, “Just trust your gut. It’s always right.” I
knew that. I just didn’t want to admit that my gut was telling me
something I didn’t want to hear. He doesn’t talk. He doesn’t say mommy, daddy,
or anything really. He speaks in a language all his own. He rarely
makes eye contact, and he’s generally unaware of his surroundings – he’s
wrapped up in his own mind. When strangers attempt to talk to him in
public, he doesn’t notice. They always look to me, and I don’t look back at
them. I don’t feel like explaining.

When I was about 8, in a video store with my parents I wandered away
and found a movie called “Angel”. It was about a beautiful woman who was
a hooker by night, and something else by day that I don’t remember – a
cop maybe. It was the hooker part that stuck out to me. I figured that
that being a hooker wouldn’t be all that bad of a job. You could have
sex, which everyone seemed to really like, and you could get paid for
it. What’s wrong with that? Though I also thought being a nun had its
bonuses too, nobody messes with nuns – they can do whatever they want and
people won’t question them. I was into watching “The Flying Nun” reruns
at the time obviously. I figured that could be my day job – nun by day,
hooker by night. It was the best of both worlds really. I had high
aspirations.

The speech therapist was at my house. This was the same woman who told
me that he “had” autism. She was holding him down in her lap and trying
to force his hands to do the – put the ring on the stick – game she’d
brought with her (how this helps autism is still a mystery to me). He
was screaming so loudly that he’d reached the point where there was no
sound. His body was arched – one big muscle, fighting to get away from
her with every ounce of his being.

Every nerve in my body was standing at attention. My adrenaline reached
a point I felt I could black out. She was repeating in a sort of crazed
voice, “Put the ring on the stick Jeffrey.” He fought and fought. I
stopped it. I stood up, pulled him out of her arms and walked him upstairs
to his bedroom. He lay on his bed and cried, calming down.

I walked down the stairs. She began to stammer about something else
that he needed, or that I needed to be doing. I told her she needed to
leave my house. I didn’t say any more than that. Whatever else she said I
ignored. The blood flowing in my head was louder than her voice. She
left. I slid down the back of the door and sat. I couldn’t move, couldn’t
think, and couldn’t breathe. I was failing him.

When I was ten I thought my uncle Rob knew the secrets of the universe
because he would take me hunting for fossils. We would hike through the
foothills of the mountains and at certain points, low points, he would
stop and we would start digging. We found rocks on which you could
clearly make out ghosts of seashell formations on their surfaces – in the
middle of the desert. He would tell me the history of the land and how
it all used to be an ocean. He’s a geologist.

That Christmas Eve my whole family was together. My cousins were
whining about wanting to open presents. I sat quietly, trying to seem mature
- above wanting silly things like presents.

When the adults gave in and the rest of the kids (all boys – I’m the
only girl) were tearing into their gifts like a pack of dogs on a fresh
kill, my uncle handed me a present and smiled. I looked up at him, and
tried not to act too excited (I had a reputation to think about).

I opened it – a book on Astronomy. He knew I loved the stars and had
decided that when I grew up I wanted to be an astronomer. My parents
laughed at me and said things like, “okay, this week an astronomer, and
next week it will be a lawyer or veterinarian again.”

His gift meant that he took me seriously. I read the book cover to
cover. I spent nights in my backyard lying on the diving board, staring up
into the stars, learning everything I could – dreaming about being an
astronomer – but mostly about being “grown up.”

I stood up and looked out the peephole to make sure the speech
therapist was gone. I half expected to see her staring back at me through the
peephole with a crazed look in her eyes, like something out of a horror
movie. But her car was gone. I walked across the hallway to the
staircase and felt the room dim and brighten, as the blood surged through my
brain. It was like all of my emotions were trying to squeeze through my
heart in that moment. All of my worry, all of my pain, all of my self-
blame and frustration had reached the peak. I was doing everything
“they” told me to. I was following all of the rules and it wasn’t working.
It was making things worse. Any light at the end of the tunnel turned
out to be a mirage.

I walked up the stairs and opened the door to Jeffrey’s bedroom. He was
lying in the same spot I left him in crying moments before, asleep. He
was exhausted. My heart stopped and felt the squeeze that I always get
when I look at him. He is the most beautiful thing I have ever seen.

I was lying in bed next to my husband three years after we were married
- officially grown up – I had a husband, a job, a mortgage and dogs – I
was fully cooked. He was snoring so loudly that I couldn’t sleep.
Something felt like it was pulling on the back of my spine – a thought that
refused to exit my brain, so it traveled it’s way down my back and made
camp, unwilling to give up.

I couldn’t ignore it anymore. I got up and dug the pregnancy test out
from underneath the sink. We’d decided to start trying to get pregnant
maybe two weeks before. I wasn’t even late. But I knew, so I sat and
aimed at the stick – following all of the directions.

Waiting. It says to wait three minutes. Yeah right. I stared at it the
whole time, watching to see what it would do. Two lines equals
pregnant. One line not. The first line appeared quickly. Then, just as quickly
a second line appeared. I checked the directions again. Yes, clearly it
said two lines pregnant one line not. I had two very clear lines. I
waited the three minutes to see if the second line would disappear, change
its mind. It didn’t. The overhead light felt like a strobe, blinking on
and off with the blood rushing through my brain.

Dizzy. I walked back into the bedroom, looked at my husband snoring
happily. Why is it that men can fall asleep so easily and then sleep
uninterrupted?

I couldn’t wake him up – too anticlimactic. I decided to plan a
creative way of telling him -something good I would figure out later, I knew
he was going to be ecstatic. I got into bed. My heart was beating so
hard my head felt like it was bouncing up and down on the pillow. I was
happy. But then, after I thought about it for a minute I was horrified.
Me – a mother? I couldn’t even keep my own bedroom clean, how was I
going to be responsible for a life besides my own? What was I thinking? I
needed to quit smoking – right then. I needed to be someone else
completely. My life was over as I knew it. MY life was no more, now I was two.
I didn’t know if I could handle it. For the first time in my life I was
actually truly terrified. I lay silent, unable to sleep as I stared at
the ceiling.

At some point my body gave in and I slept – at least for a few minutes.
In that time I dreamt that I was at a huge dinner – with my entire
family even my grandma who’d died my freshman year of high school. We were
seated at tables covered in white tablecloths and at some point during
the dinner I looked under my table and found a blue eyed little baby
boy smiling up at me from a carriage. I decided that I would pretend he
was mine so I could keep him.

Tears fell as I watched him sleep, unaware of the turmoil already
surrounding his short life. I heard the door open and the dogs start their
happy dance for my husband getting home. I walked down the stairs,
avoided looking at him – I couldn’t talk without screaming. I grabbed my
keys and passed him in the hallway his voice trailing behind me, “What’s
wrong?”

I got in my car and tore out of the neighborhood – past all of the
perfect cookie cutter homes with competing perfectly manicured lawns – past
the jogging trail with the perfect families holding hands and pushing
strollers after dinner. I thought about driving up on the sidewalk and
slaughtering them, but decided that would be a bad idea. I just wanted
to inflict as much pain as I felt.

I never wanted any of this. I never wanted to be married, or have kids
- how did I get here? How did I let this happen? The neighborhood faded
into woods, and I just kept going, without any clue where I was going.
I drove as fast as the curves in the road would allow. I wanted to
drive so fast that I could burst the bubble of my life – somehow stop the
walls from closing in.

I was getting lost, on purpose. My phone rang. I looked down at the
number – home. I threw the phone to the floor, wanting to break the tether
that dragged me back. I looked up and saw a tree in the headlights. I
slammed on the brakes, pulled the wheel to the left and fishtailed, into
the trees, the car skidded and I heard wood cracking as the car left
pavement and crashed into the forest – somehow managing not to hit
anything except underbrush.

I sat – stunned, silent, embarrassed even though I was alone. I’d lost
control – of everything.
I wept until it hurt to breathe. The phone kept ringing. I finally
picked up.
“What?”
“Where are you?”
“Nowhere”
“What happened?
“He’s not okay and there’s nothing I can do about it.”
“He’s fine.”
“No, he’s not.”
“He’s going to be fine.”
“How do you know?”
“I just do.”
“No, you just hope.”
“Well….”
“Well, what?”
“Well – whatever he is – or isn’t – it doesn’t matter. We’re not going
to love him any less.”

I was lying in Jeffrey’s bed a couple of months before his third
birthday, having just read him his bedtime story. I stared off into space, as
he looked through the book again – quietly – both of us sunk inside
ourselves. I was thinking about the bath I planned on taking as soon as he
was asleep. Who knows what he was thinking – Elmo and Big Bird dreams.
We always do this – I read him his story, usually at least twice, (he
indicates he wants it read again by turning back to the first page and
putting my hand on the words) and then I lay and hold him for a few
minutes, more for me than him, and then I say goodnight.

“Okay baby, I’m gonna’ go. You sleep good and I’ll see you in the
morning.” I always say that, and then I lean over and give him a kiss on the
cheek, which he takes quietly with no response. Then I get up, turn out
the light, and close the door behind me saying, “I love you.”

But that night things went differently. I was leaning down saying “You
sleep good” reaching for the kiss, then as I pulled away I felt his
hands reach up and grab my cheeks. He pulled me towards him – for a second
I had no idea what was going on. It happened so quickly I didn’t have
time to think. He just pulled me by my cheeks down towards him, kissed
me on the lips. Actually he put his lips to mine, pulled away and then
smacked his lips and said, “omma” (close enough).

I almost passed out. He still held me by my cheeks and stared into my
eyes smiling – giggling a little – waiting for my reaction. He’d never
called me momma before, or kissed me back, and then suddenly for some
reason he chose that night to do both.

I started laughing. I choked on my tears and laughter all spilling out
at once. We laughed together, staring into each other’s eyes. The fog
had lifted for a moment, long enough for us to connect and understand
through our eye contact and our laughter – everything.

The Curious Incident of The Dog In The Night-Time

i was surprised when Caloi, my former supervisor, approached me in the office lobby and gave me a book to borrow. It was “The Curious Incident of the Dog in the Night-time” by Mark Haddon.

He told me about it before, and I already told him that i’ll borrow it. He gave it to me yesterday, with one question before he let go of it: “Kelan mo sosoli pag pinahiram ko sayo ngayon?”

I said, “Two days.”

I returned it to him today, with one statement before I did: “3 hours and 27 minutes.”

Yes, I read it within 3 hours and 27 minutes straight, with one pee break. It will be an understatement if i say that it was moving.

I’d say that I hated it.

I hated it because I can relate to it.
I hated it because it was an ingenious book, and the writer was brilliant.
I hated it because since it was an ingenious book and the writer was brilliant, I saw Arolf in it.
I hated it because I saw how Arolf’s mind works.
I hated it since because of it I saw how Arolf’s mind works, I realized that it wasn’t how it should work.
I hated it because it made me worry about what will happen to Arolf when he gets older.
I hated it because it made me realize that if Ronald and I part ways, something like this can happen to Arolf.
I hated it because it was supposed to be some sort of a funny book to most people, and I found myself in tears.

There were a lot of reasons why I hated it… but mostly, I hated it because it made me weaker.

People look up to me as someone who has gone through a lot. Whether it may be with my personal life, or with Arolf’s condition. I always see to it that people do not see me as someone who cannot take what life gives me. I hate it when I cry in front of someone else. I hate it when I admit that I need help.

But in reality, I do need help. In all aspects of my life.

Anyway, I’d still suggest that you buy and read it, ‘coz i know that not everything is about me.

p.s.
my fingers are cold.

NOT UNTIL DALE KISSES ME FIRST

October 11, 2001
4:24 P.M.

To my dearest family, relatives, and friends,

It has been a very long time since I wrote a very deep letter. Maybe because most years of my life, I have been so content that eventhough I was sad and had problems, I have learned to cope and shut up.

Early this year, we went to my son, Dale’s, pediatrician for treatment of his cough and colds. We went to a new one, because his former pediatrician went abroad. This new doctor, told us, in all honesty, that we have to take Dale to a developmental psych. She suspects something is wrong with him.

I thought, WHO THE HECK IS THIS DOCTOR? WHY IN THE WORLD WILL THERE BE SOMETHING WRONG WITH MY SON? But of course, I just thought that. Being brought up by my parents as a respectful person, I just listened to her.

When I got to the office, I don’t know why. Without anything going on, I just turned on the PC, opened the browser, and searched for a topic. AUTISM. I typed in the search field. I picked a site, and went on reading. I read almost every topic on that website, and feeling like a zombie, reached for the office’s wireless and called my husband. Upon hearing his voice, I cracked up. I told him, my son has autism.

How did you know? Calm down. Where did you read it from? No, it can’t possibly. Stop crying. We’re not sure of that. Those were his words. I just passed him the information from what I have read, the symptoms, possible causes and whatnot. Saying it in barely recognizable phrases because I could not control myself. I have never cried as hysterically as this before. I thought everything I have achieved in life, even if it was only bearing three wonderful children have been trashed.

I kept on asking myself, WHY MY SON? HAVE I DONE SOMETHING GRAVELY WRONG? HAVE I NOT PRAYED EVERYDAY OF MY LIFE? Everyday since then, I have silently hoped that I was wrong. I have told my cousin, and she told her mom, who in turn gave me the contact number of this SPED teacher. I consulted her and she recommended me to Dra. Alexis Reyes of Makati Medical Center.

A lot of people since then went on telling us that they didn’t think that Dale has autism. They think that maybe he’s just not disciplined. They kept assuring me that there were normal kids who are just delayed in development like speech. But it wasn’t just his not talking. It’s his eye contact, it’s his strange behavior. His inability to point and recognize danger. His inability to listen and look at me when I call his name. It was everything.

Whatever consolations they point out, I did not feel any better, because deep inside me, I have accepted the fact that he really has autism. The signs were all there. I don’t know if that would make me a bad mother, but it helped me now.

I then set up an appointment with Dra. Reyes which was June, but was then rescheduled to March of next year. Then just two days ago, her secretary called and said the doctor will see us yesterday.

It was exactly 2:00 P.M. when the doctor went out of the office and called us. She asked for Dale’s history, and assessed him for 45 minutes, played with him and made him sit still. We were having difficulties then because Dale saw that the doctor has a packet of Pringles, and he kept on getting it. He started to cry then and would not stop crying. But when the doctor asked him to do something like
play with a puzzle, he completes the puzzle while crying. He stacked thirteen blocks on top of another, making sure the blocks were all aligned before he placed another one. (Later on the doctor told us that it was a good sign, most kids she assessed could only stack 4 blocks)

After the assessment the doctor asked me to sit down with my husband and she explained things to us. I found myself asking her: “So, what are you saying? Is it positive that my son has autism?” And her reply was the most hurtful 3-word sentence I have ever heard: “Yes, he is.”

I did not cry. I did not shed a single tear. I just listened to what she was saying.

She gave us information on how to deal with this and referred us to the CENTER FOR AUTISM AND RELATED DISORDERS. She just gave us a slip of paper as a referral when we go to CARD, stating that my son has Autism Spectrum Disorder.

When it was over, my husband who rarely carries him, scooped him up and hugged him and carried him until we got to the lobby. He kissed him and hugged him all that time. He got the car from the parking lot while we waited for him in the lobby. It was raining a bit, but my husband was taking quite a long time getting the car, I noticed. When he finally came by, when we got in the car, my husband was crying. He cried while he was driving. I did not.

When I told my mother that night, I saw her tears building up in her eyes. Mine did not.

You could ask me why I did not cry, and my answer will always be this:

I really believe that everything that happens to our lives has this certain purpose or reason. The problem is, what is it? And how do we take it to our advantage?

I only know then and now that I LOVE MY SON. I love him so deeply, that I would give him everything, and sacrifice everything just to give him a normal life even if it was just at a certain point.

And I believe that if my husband cries, my mom cries, the whole family, and everyone else cries, then what would these tears do for my son? Will he get better? Will these tears be some sort of a miracle for my son? I did not think so. What I thought was, I have to be strong for my son. I have to keep strong faith that HE WILL get better. Because I’m done with crying. And it did not do me or my son any good.

So, this morning, I placed Dale on his younger brother’s crib. He hates that. He kept on asking me in hand gestures to bring him down. I did not. Not until he kisses me first, I told him. Until his dad came down and wanted to get him out because he pities him, I told him NO.

NOT UNTIL DALE KISSES ME FIRST, I told them.

Dale would have to exhaust himself from crying but I WILL NOT bring him down. Sadist? No. It was because I love him. He has to try to listen to me and understand. After a painful (for me and his Dad) 2 minutes, he finally kissed me. FIVE TIMES.

Now, then I could have cried. Because, for the first time in months, I am now SURE that my son, AROLF DELANO, will be okay.

I love all of you,

Achie