Dreaming For My Autistic Son

Hello. I'm Mark, and I'm an autism dad.

Today, my son's development pediatrician looked me in the eye and told me that my son is getting worse. He's losing skills on some areas, and he's not developing fast enough on other areas.

No, he said it tactfully. He was straight-forward, humane, far from being impolite. I think he genuinely cares about Mito. This isn't a post that defends a child with special needs from people who don't believe in them. This isn't a post about the triumph of an autistic child over his issues. This is not that kind of post.

Mito has been diagnosed with autism two and a half years ago. Since then, we have not stopped providing him with the interventions he needs. Right now, he has a two-hour, five-days-a-week Applied Behavioral Analysis (ABA) sessions, and twice a week sessions of Occupational Therapy, Speech Therapy, and Physical Therapy. Just this week, we also started him on Oral Placement Therapy. We spend about $1000 per month for his therapies alone -- more than twice the minimum monthly wage in the city. We also recently started him on a gluten-free and casein-free (GFCF) diet to supplement his interventions. We understand it's not a universally accepted treatment method yet, but if it doesn't harm and it has a chance of helping our son, we're more than willing to give it a try.

He has a dedicated yaya, and his grandmother is kind enough to be with him everyday and bring him to his therapies. My wife and I both work, but he is nonetheless showered with attention, love, and intimacy when we're at home. In terms of support, the family is all-hands on deck for him.

And yet, he is not developing.

My wife and I are Christians. Every night, we pray with our little boy and ask the Master Of The Universe to grant us the strength and the resources to support the special needs of our son, and if possible - if He wills it - to grant us the miracle of our baby overcoming this issue. This is our second most fervent invocation -- behind only the prayer that he grows up loving God above all.

So far, the heavens have been silent.

But that is ok. This is not a post raging against God. My wife and I understand the truth of sovereignty. We trust not only in His goodness and in His wisdom, but also in His compassion. My wife and I know deep in our bones that if we are pained by the struggles of our son, God weeps with us. This is a fallen world, and part of that brokenness is the reality that even the sweetest little boys may have afflictions that may hound them for life. This is not a post about that.

This is a post about my failure.

As a father, I understand that I have four major tasks with regard to my son:

• To show him through my life and my words how to love the Lord and follow His ways.
• To bestow masculinity; to teach him real strength; to love his mother
• To protect him from harm
• To empower his dreams

Like all humans still earthbound, I am a work in progress. The first task is something I wrestle with God every day. He is grace-full, and I'm keeping my hands open.

On the second item, my wife suffers through my blunders. But she is a child of her Father -- hence, she is also a creature of grace, and thus, stands by me despite my failures.

We do ok on the third item.

On the fourth... I must admit that I am lost. What dreams may I carry for my son? What hope should I carry for his future? Will he learn how to do simple arithmetic? Will he learn how to read? Will I ever get the chance to share my stories with him?

Will he ever get to know me?

I always tease my wife that if my son doesn't get accepted in UP for college, there is only one acceptable alternative: PMA. She rails against it because she can't imagine sending her only boy in harm's way. It's a joke -- because I know I'd get a rise out of her, and because in all honesty, there's no guarantee Mito would ever go to college.

And there lies my failure. I don't know how to prepare my son for a future where I am unsure of how he can take care of himself. I don't know how to dream of a wife and a family for him because I can't see yet how he'll protect himself from those who would take advantage. I don't know what to dream for my son.

And maybe there's good in there. Without me forcing my own dreams on him, he will be free to forge his own path, make his own dreams, no matter how unconventional they are. Maybe he'd like to take care of seals in the Arctic, happily freezing in the cold. Maybe he'd want to grow up as a musician, strumming his guitar in a different place every night. Maybe he'd be happy flipping a stop sign while children cross the street; maybe he'd even want to become an actor.

But first, I'd have to teach him that it's ok to dream despite whatever hurdles are in his way. And to never let any guy stop him from going after his dream -- even if that guy is me.

Give me my Aji-sarap!

I miss Pinoy and Chinese food. I know it’s only been 4 days, but really, I miss soy sauce and MSG on my food.

I have so far tried only a limited range of Turkish fare, and I have yet to develop a love for it. Last night I had a mixed salad of stuffed eggplant, stuffed tomatoes, kofte, and greens with plain yogurt.

I loved the stuffed tomato, but the rest were just okay.

Today I had baklava for dessert after lunch. It was very very very sweet, but it was somehow reminiscent of turon for me, so I liked it.

I also tried Turkish coffee. It’s served in really small cups – probably the size of a shot glass – and it’s really strong. The first time I tried it I drank almost the whole thing, but the bottom part was grainy, with undissolved coffee beans. The second time I had it someone mercifully informed me that I am really not supposed to finish it, and to just drink the smooth half.

I think there’s still a lot of other local dishes that I haven’t tried, and I have hopes that I will love something soon. But in the meantime let me continue wishing for salt and pepper spare ribs, yang chow, and pork adobo.

Being Away

And so begins what I expect to be the longest 6 months of my life.


It’s my 4th day now in Istanbul, which means it’s the 4th day since I last hugged and kissed my husband and son. I can’t really allow myself to dwell on this because I just might suddenly book a flight home and resign from work.

So anyway, I’m writing this at my husband’s request, so I can tell him the details of my days here without the limitation of the strength of the wifi connection.

This is the hotel I’m staying at now. It’s Double Tree by Hilton, Istanbul-Moda. It’s a nice enough hotel although apparently, the locals hate its location as it sticks out of the skyline of the Asian side of Istanbul.

The room is good, and you can see I have a beautiful view of the Marmara Sea. But after just 4 days, the room is starting to feel a little too cramped for me. I want to transfer to a serviced apartment already. I want to be able to prepare my food, do my scrapbook, wash my clothes. But I’m stuck here for a few more weeks as I think I can’t move to the serviced apartment until I get my residence permit.

I’ve gone around the area surrounding the hotel. I walked by the sea from Moda to Kadikoy. I walked the narrow streets of the busy and touristy Kadikoy Square. There's almost always a street musician performing in the middle of the square, and tonight it was a group.

The language barrier is a challenge. Despite its reputation for being a modern, cosmopolitan city, there still are a lot of Turkish here who do not speak English. I’m trying to learn Turkish, but learning a foreign language is not one of my talents, so it has been a struggle so far. I get by with sign language and what I believe is ESP. The other day I had to ask the cashier at a grocery store about the prices of two different products. He talked to me in Turkish and I shook my head. I spoke to him in English and he shook his head. Then we looked at each other for a few seconds and suddenly he understood what I needed. He scanned both items and showed me the prices.

I have yet to cross to and explore the European side. I’m hoping I can do that this weekend. But it’s just occurring to me that my weekends cannot be spent on leisure and me-time alone. I live alone now, which means I have to take care of me. I need to wash my clothes (unless I’m willing to pay for hotel laundry service which is unbelievably expensive), and then iron them. I wonder how long that will take. And then on Sunday, I plan to go to Every Nation Church in the Levent area in the European side.

I miss my boys so much. I am so not looking forward to the weekend because I think that will make me miss them more. My aloneness might overwhelm me. As it is now, the days don’t seem to end even when I get to the hotel because I don’t have family to spend the evenings with. How much more two full weekend days? Haaaaaaaaaay. I think the next 6 months will feel like a long, straight work-week for me.

A child's childhood

I sincerely believe that I had the best childhood ever.


I didn’t go to Disneyland. My only experience of a theme-park was a trip to the Fiesta Carnival during San Miguel Corp. Bottling Plant’s family day. But my whole neighborhood was an adventure park for me and my neighborhood friends. There was a rice field at the back of our house, and we spent countless afternoons there tumbling, running, flying kites that our fathers made for us. We trekked to the nearby train tracks to make our own musical instruments for Christmas caroling – we laid down the tin caps of beer and soda bottles along the tracks so they’d be flattened when the train passes. And then we’d punch holes in the middle of the caps so we can string them with heavy wire and use like a tambourine.



Mito loves playing ball. 
He has a Little Tikes stand-up basketball hoop,
but it's just him and us who play.



The street in front of our house was the ultimate sports field. We played football, Pinoy style of course, with our mothers actually watching while sharing the daily gossip. We made our patintero lines using water. Heck, we played siyato, which meant we actually stood in position to intercept a thick wooden stick that our opponent was supposed to hit really hard to make it fly really far, and our mothers cheered us on and did not freak out about the possibility - and oftentimes the actuality - of the stick hitting us right smack in the head. We played with marbles, tex, rubber bands, palara. We collected those and stored them in jars at home, and it annoyed my mother to bits that she constantly threatened to cook them and make us eat them. We played with spiders, beetles, dragonflies, (not frogs).

Just another day of exploring. I think this is the day he
learned to make mud. :-)

All the families in our street would sometimes rent a jeepney and go on an excursion; an extra long bangko had to be put inside the jeepney so about 30 people can sit. We’d go to Pugpog, this famous river resort, and “swim” all day while eating the crunchiest indian mangoes. By swim, of course I mean crawl along the water by holding on to the rocks – living in Bulacan, a land-locked province, meant we didn’t have much chance to learn how to actually swim (except in flood waters).

I remember our very first trip to a swimming pool resort. I was about 10 years old then, I think. We were supposed to go to Paradise Resort in Malolos, and it speaks of how simple life was back then that the idea of going to a place that had “paradise” in its name meant days of blissful excitement and anticipation for me. When we got there, the place was packed, so much so that the people were not swimming anymore, they were just standing in the water. We were refused admission. I was absolutely heartbroken. We decided to go and see another place, Fantasy Island, in the next town. All the way to that second place, I kept muttering, “paraiso na, naging pantasya pa.” Mercifully, that resort turned out to be even better than the one we originally intended to go to (or maybe that was how my young broken heart felt when hope was revived). It had lots more trees, less people, and a higher slide. So that whole day, I kept on exclaiming, “fantasy come true pala ‘to!”

I went to our barangay public school, together with all the kids in our street. (Back then it was the few private school students who didn’t fit in – they were rich, and therefore, they cannot be our friends.) I was bullied once by this planet of a 6th grader (I was in 4th grade at that time) who sat me down behind the inverted ice cream cone monument in our school grounds and cursed me and threatened me, all because she heard me singing the theme song to Valiente the day before while we were walking home and we were in front of their house – apparently she was being teased about something related to that afternoon soap, so she lost it when she thought I was in on the teasing. I didn’t cry, and that day, me and my neighbor friends all walked home and sang the song really loud when we passed her house again. And I think that was the first lesson I had on how to handle bullies – can’t show them you’re scared. She never bothered me again after that, except for the occasional death stares which didn’t scare me at all.

December mornings back then were still really chilly. We had contests on who can make the biggest breath rings those mornings. I lost at least four sweaters that I accidentally left in school – I would wear them in the mornings on the way to school but by recess time, I’d take them off to play, and then forget about them completely. Money was a lot harder to earn at that time, so you can just imagine the scolding I got over those lost sweaters. But then it would be Christmas, and then Rizal Day, and there would be a Rizal Day quiz bee among the students of the different public schools in our town, and I would almost always win, so I would be forgiven for the sweaters. In fact, my parents would buy me a new one because I would need a sweater when I get my Rizal Day award during the town celebration on New Year evening.

I grew up singing in our church’s children’s choir. I spent Sundays in Sunday school. We learned to act, dance, draw, write essays in Sunday school and church camps. Our Church would give out Christmas gifts to the church kids every 24th of December, and it was the joy of our Christmas seasons to get those really thick multi-colored ballpens that were almost impossible to write with but were always a good source of bragging rights. (“Sa kin apat na kulay.” “Sa kin anim!” “E wala ka naman purple!”)

He's an iPad expert.

Sigh. Life was so much simpler back then, and therefore so much easier as well to fill with awe and wonder. We didn’t have much, so whatever little extra we had was oh so sweet. We had friends – actual friends that we played with outside. Yes, we did also stay up ‘til really really late when we finally got a family computer, but I think I was already in high school at that time. I don’t think I’ve ever been as busy as when I was a kid.

I don’t know how to do it but it is my mission to try as much as I can to give Mito the childhood he will remember as the best childhood ever. I don’t know if I should adopt my idea of what that childhood should look like to the changing, developing times. But I know that I don’t want Mito’s active play to be restricted to the Gymboree playroom, which is why I encourage him to go out of the house and walk and run around the neighborhood every day. (Sadly, of the 4 kids who live in the apartment row we’re renting, Mito’s the only one who goes out to play. The others have porcelain skin.) I know that I don’t want to buy every single toy Mito wants, and I want him to learn to make his own toys. I know I don’t want to have to drive to the Fort just to teach him about patintero and piko. I know I don’t want him to grow up thinking playmate=Mom, Dad, and yaya.

I have a tough mission – self-imposed, yes, but tough nonetheless. I wish there would be a campaign to encourage parents to help each other give the kiddos a child’s childhood. Seriously, if only my neighbor mommies would let their kids go out, I think a big chunk in my mission would have been accomplished already.

Fun day! Wish more days were like this. :)

Pretty Books All In A Row

I've read two books in the past week and I'm on to my third now. The books struck me in such different ways that I don’t want to forget, so I decided I'd write down what I thought about the books. Here goes:


1. Thirteen Reasons Why, by Jay Asher

This was recommended to me by my friend when I asked her what books to buy from Kindle - the iPad was still new then and I was exploring how to buy ebooks. Once I figured it out, and got loads of free ebooks, I forgot about this book. Typical me. A year after I bought it, though, I saw it in a Top 100 list of teen fictions. So when I had a not so hectic week, I finally got around to reading it.

The book is about a girl who mailed cassette tapes to 13 people telling the story of why she killed herself. Yes, the 13 recipients all contributed to her deciding to commit suicide. Interesting right? I thought so too, at first.

From as early as the second chapter of the book, though, when the dead girl told the story of the first person that got her onto the suicide path, it became all too clear to me that this was really a teen novel through and through - dealing with teen issues, written for teens mostly. It was all about rumors in high school that ruin reputations, friendships that fell through, and...I guess that's that. There was a bit towards the end about rape, but it was just slightly skimmed through, nothing meaty (which in itself was a minus point for the book for me because I thought that bit was the most important part and it was wrong that the author gave so casual a treatment about it).

But what got me glued to the book was the realization that teen issues are as real to teens as adult issues are to adults. And that it is always a mistake for adults to dismiss teen issues as silly non-concerns. And as a mother of a little boy who will eventually grow up and face the same issues himself, it would do well for me to learn to address such teen issues.

I remember a quote I read before, though I can't remember who said it: "we're young, we're supposed to be stupid. You're not young - what's your excuse?" I also seem to recall something that Dumbledore said, to the effect that it’s a common fault of adults, not remembering what it’s like to be young. I hope I never get there; I hope I never get to be so exasperated at the pettiness of teenage issues that Mito will someday talk to me about. I hope I never get to hear him accuse me that I don’t understand.


2. The Kite Runner, by Khaled Hosseini

(It was very wrong for me to read this after Thirteen Reasons Why. When I finished this book, I seriously wanted to find Jay Asher's address, mail him a copy of this with a note that says, "now THIS is how you write novels!")

If I have read something better before - and I do believe I have - I can't remember what it is anymore.

The story is narrated by Amir, an Afghan man, about his life growing up in Afghanistan, his family, his country. I am at a loss as to how to summarize the plot of the book - it was just so wonderfully complex and yet cohesive that I feel I can't summarize without mentioning everything, but if I mention everything, then it won't be a very good summary now, wouldn't it?

So I won't bother to sum it up - I won't find words as beautifully simple and powerful as the author's anyway. Suffice to say that you really, really should go out, get a copy, and read it. It's that good.

To whet your appetite, here's one of my most favorite parts in the book:

I slipped the picture back where I had found it. Then I realized something: That last thought had brought no sting with it. Closing Sohrab’s door, I wondered if that was how forgiveness budded, not with the fanfare of epiphany, but with pain gathering its things, packing up, and slipping away unannounced in the middle of the night.

That description of how forgiveness probably feels just hit the spot for me. I know forgiveness is not supposed to be a matter of emotion, but to have it described that way – “pain gathering its things… slipping away unannounced…” – that just made it so palpable, so tangible. It’s almost physical.

The book's theme line - is there such a thing? - is this: For you, a thousand times over. It wasn't so oft-repeated in the book to make it cheesy, just enough to make you think that these may be the most powerful words of devotion ever said. It's like the line I didn't know to say before, but now perfectly sums up what I want to say to my son. That there won't be any sacrifice that's too hard, no forgiveness that's once too many, no devotion that's too much. That no matter how difficult it may be, I would do it again and again and again. For him, a thousand times over.


3. A Short History of Nearly Everything, by Bill Bryson

I'm only on chapter 4 of this but as early as now, I know this is going to end good.

The book's title sums up what the book is about. It starts with an introduction on why the author wrote the book, which, in gist, was because science interested him when he was a kid but the science books he read didn't quite connect.

Because the book is about everything, it of course starts from the beginning of everything: from when out of nothing - no space, no darkness, nothing - something came to be, and that something, surprisingly, led to us here, now.

I know the book is very good because it talks about science - a topic that's just beyond me - and yet from only the second page of the introduction, I'm hooked.

When the book goes on to talk about gravitational pull, supernovae, Isaac Newton, etc., I have to confess that the science remains lost on me. I still am not able to grasp the concept of light-years, or gravitational position, or the scientific significance of whether the Earth is perfectly round or slightly oblate.

But what I did get from the book is this sense of wonder at these things. For some weird reason, four years in high school did not impress upon me just how big the universe is, or even the Solar System. And yet the book, by simply illustrating that the Solar System if drawn to scale would use up miles of Manila paper, did just that.

I don't understand the significance of Newton's laws of motion, but I am amazed that there are intellectuals such as him, and many others before him, who look at something, wonder at the math behind it, and are able to investigate and come up with mathematical formulae explaining that something. A few weeks ago, while we were on our way back to the city from Bulacan and Moks was driving, he was complaining about the bright lights from the cars behind us. He adjusted the rear-view mirror a bit and then it was okay. A few minutes later, he realized that the lights weren't too bright anymore because what he was seeing was the reflection of the view of the street on the car ceiling. The rear-view mirror was directed at the car ceiling, not the windshield at the back of the car. So we then wondered: how did the windshield "project" the view of the road to the car ceiling? But that was the end of our wondering - we have no clue how to even begin to analyze and try to explain it. (And if you know how and why, don't bother telling me, I won't understand anyway. Haha! Believe me, pearls on swine.)

So I highly recommend this book as well. Hopefully when Mito grows up, he will get to read and enjoy this, and actually understand the concepts Bill Bryson was talking about. In this one aspect, I fervently hope he does not take after me.

Disjointed Thoughts

One.


I have so many things that I need to do today that I don’t want to do. The contract template, the review of the contract templates, the review of the new law, the presentation on the new law. But I seriously don’t want to touch any of them now. So I’m blogging.

Two.

I want us to buy our own house. I’m tired of renting. And it’s not even because of the fact that no matter how long we pay the rent, the house will never become ours (which is what I constantly hear from the grown-ups in our lives). I want a house because I want to decorate. I want to be able to design Mito’s room with stuff he likes. I want to be able to paint a portion of the wall red so the pictures I frame and hang will really stand out. I want to be able to set aside an area for just Moks and me, where we can retreat at the end of a tiring day once Mito’s asleep to just relax with each other.

I am trying to see if we can afford to buy now. We have no debt, we earn well. What’s bad is, the extra money we make we are not able to religiously save. We can be quite lavish on our entertainment expenses. Almost every month I get a credit card bill and I get surprised at how much we’ve spent on “nothings”. So I think it would be better if we spend our money on something concrete that will definitely benefit our family.

I’m looking at the developments in the Sta. Rosa area. I think they are all promising, and I would really love to buy before the prices skyrocket once all the planned developments come in.

But of course it’s scary as well. A 15-20-year financial commitment is no joke. We have to be sure we’re okay to live in the south. What if Mito’s accepted to study at UPIS – I would not want to subject him to the crazy commute from Sta. Rosa to Diliman! And does this mean I don’t get to resign anymore? Finally, can we have another baby as well?

Three.

I want another baby. The sane, thinking part of me says not yet, Mito’s too young, you need to space them properly, etc. etc. But the mother in me just loves its role so much that it can’t wait to hold another little wee-one soon.

Seriously, I don’t know if I’m just weird, but the mothering experience I had with Mito made me a forever fan of that first year of a baby’s life. Breastfeeding – awesome! Late nights – sure! Poop and spit-up and pee and vomit – any day! Because it all means experiencing what unconditional love is, having first-hand knowledge of absolute devotion, and learning how it is to be fully reliant on God.

Mama's boy? Thankfully so.

My little boy is growing up and getting extra clingy to me.

And I am loving it.  I know the opinions of the pediatrics societies, yes.  And I don't care one bit.

One of my worst fears as a full-time working mom is that my son would grow up preferring his yaya over me.  Of course I do want them to have a close bond, because I want Mito to not feel a lack of love despite his parents leaving him every workday.  Still, I dread the day when we'll be in a playground, and Mito will get hurt, and he'll run to his yaya instead of to me. 

So it's such a relief that despite my being away from him for at least 12 hours a day, 5 days a week, for him I am still the primary caregiver.  When I'm in the house, he wants me to be in charge.  Bathtimes, mealtimes, playtimes should all be with Mommy.  I want to believe it means I'm able to make the most of the limited waking time we spend together.


Just yesterday morning, Mito woke up and got down from the bed while I was fixing some stuff in the bedroom.  He must have stepped on something that hurt his foot a little, because he suddenly came to me complaining and pointing to his foot.  I sat down on the bed, asked him what was wrong, and gently rubbed his sole.  After that, he gave me a really really sweet smile, then kissed my hand, unprompted. 

Whenever something hurts him now, he comes to me and cuddles real close.  And I joyfully oblige him by squeezing him in a tight hug and peppering him with kisses. 

At bedtime, he rolls around the bed so much, struggling to stay awake.  When he has nearly exhausted himself, he snuggles up to me and squeezes and squirms as though we are two pieces of a puzzle that he's trying to put together, and finally settles in a position that affords us the most body contact - sometimes he sleeps in the crook of my arms, sometimes on my neck, sometimes on my legs.  I admit there are some nights when I am tired and I hurt from all the wrestling we do, and I try and sneak down from the bed and I ask his Dad to substitute.  But I only need a few minutes of respite, and I sneak back and reclaim my role as his nighttime nest.

I refuse to believe that all this closeness and sweetness is either: (a) making my son such a weakling that he won't be able to soothe himself when he grows up, or (b) a spoiled little monster who will be demanding and clingy all the way to adulthood. 

I only have a few years of this - of him wanting to be with me all the time.  I have a 5-year old nephew who already refuses to be referred to as our "baby", and whose constant response is "I can do it myself."  Just a few years ago he was slinking and clinging on to our legs and exclaiming, "I'm a baby whale", and now all he wants is to show us that he's a big boy now. 

I see my son learning so many new things, getting more and more ready to be independent, and I am proud and panicky at the same time.  He is getting better at eating on his own, he is learning how to undress himself, he runs off whenever we are out and he's walking.  I think, good job, Mito, but not so fast please.

So during these times when it feels like I'm his primary need, I will not balk at the opportunity to pamper him.  When he's still like this when he's 13, I will consider myself lucky.