Wednesday, August 29, 2012

To Those Who Can

It was the first time I saw frustration clearly etched on my little one's face. He wanted so bad to tell me something, to just blurt out the right words, but he couldn't. And I couldn't understand or guess what he wanted. Picture this, he gripped both my arms so tight, his eyes looking straight into mine, his lips struggling to form words. And all I could do was tell him, "It's okay, darling, what do you want? Show mama." Of course he couldn't tell me what he wanted. And for reasons I learned only later that night, he could not show me. He cried so hard and screamed that I carried him in my arms and tried to soothe him, singing to him, rocking him, bouncing him on the ball. His body weighed heavily on my arms, but at that moment, I felt like I was carrying an 8.8 pound baby that he was four years ago. It took him almost half an hour to calm down. When he finally did, I let him play with his favorite app on the iPad. He then proceeded to carefully place his 3 rubber sharks and 3 straws on top of it. He looked at his arrangement thoughtfully, and started to cry again. A light bulb went on inside my head. Where were his three other sharks? I quickly looked for it, found it and gave it to him. Then I realized, how could he show me what he wanted when he didn't even know where it was? I didn't even know where it was.

It's at times like this that I would like to throw a huge rock in the form of a very specific question at the universe. "Why does autism take away the most important part of human life? Why the language impairment? Why?..."I don't even want a scientific or a spiritual answer. It's just a question that I would like to pose to the entire world. At the same time, it is an earnest admonition to the rest of the human race who can speak, who can communicate, to the parents who complain how their kids can talk non-stop, to the teenagers who are so engrossed now with the techie world, who can't even look you in the eye when you talk, who can send thousands of text messages a day, but cannot answer a simple question with a straight answer.

It's quite simple, really. All I want to get off my chest is this: Please do not take for granted your gift of speech, your ability to verbally communicate your needs, wants, hopes, dreams and aspirations. You can speak. Take care of this gift. It is a gift, a privilege I believe, that many do not realize the value of. Give value to your ability to communicate. Choose your words carefully. If what you are about to say is not even a fraction better than silence, then keep quiet. But when what you want to say is of the utmost importance, say it. Because your brain is fully functional. Your motor planning well-oiled, well-greased. Because you can. Simply because you can. Appreciate what you have-- the ability to speak, the ability to express yourself clearly. Appreciate it because you must. Because there is no other way to give back to the Universe what you have been given.


Monday, August 13, 2012

Critical Thinking, Declaration of Independence, And of course Love...

A brief but meaningful conversation with a grade 4 student. A thread of conversation with an old high school teacher. And an assertion of independence...a declaration if you like.

These three scenarios swirled around my head as we headed for home. Morgan and I. He did so well in his speech class today, articulating the words for his biscuit, "Grr-hmmm" (graham), "eyes", and the sound of his favorite farm animal, goose, "wak-wak". Another blessing. Another wonderful, wonderful moment to be thankful for. While we were nearing our house, a question popped inside my head or more like a question asked by most parents especially when their children are newly diagnosed, reappeared. "Until when will my child need therapy?" The real question and worry behind this question is really about the heavy burden of the finances that go with therapy, special education, check-ups, tests and such. This disorder, after all, do not affect only the "financially able" sector of families. And even with those who are supposedly "financially able", it is still a concern not to be taken lightly. Another reality and perhaps a more important one than money is whether our children will ever be able to recover from autism, will they ever be able to be included in society? Will our children ever be considered "ok" according to the norms of society?

So until when will our children need therapy? Until when will they need help? The answers differ variably depending on the progress of the child. All parents are hopeful that their children will be mainstreamed, enrolled in regular school eventually, included in the normal society, be able to participate productively in the community as relatively "normal" individuals. Some of them do get into mainstream education. Some of them don't. Some of them excel quite well when put in the regular education with ever consistent follow-up at home and from the therapists. And some of them function well even without the mainstream education. And some of them will need therapy varying according to their needs for as long as they live.

Where am I going with all this? Let me describe the three scenarios wandering about in my head right now.

The brief but meaningful conversation with the 4th grade student.

Let's call him Francis (not his real name). Francis used to have socialization classes with us at the center for several months last school year and the school year before that. He was diagnosed to have high functioning autism, commonly known as Asperger's Disorder. As with any "aspie's", he had considerable challenges in socialization particularly on empathy. The ability of a person to put himself in another one's shoes. It would range from as simple as grabbing a pen because he wanted to borrow it instead of requesting permission first to more serious ones such as when he is teased, he reacts to the "bullies" by being physical with them instead of informing the teacher. There was a point in time where we feared we had to advise his parents to transfer him to a smaller school. But thankfully, the parents really did their part in following through at home, being consistent with him with the social skills training. More than anything though, his parents gave him all the love and unending patience and support. And that I think, did it. They willingly persevered. So when I met him again in the main campus, I asked how he was. As bluntly as he could possibly answer, he replied, "I'm okay ma'am Bea. Some classmates still tease me but I tell the teacher right away." "Wow! Good job, Francis!" He smiled. I further said, " We miss you at the sped center. Don't you miss your sped teacher?" To this question, he responded, in a matter-of-fact tone, "No, Ma'am Bea. I don't need her help anymore." At this reply, I smiled with all my might, so proud of him and at the same time so amused at his reasoning and trail of thought in answering my question. Well, yeah sure, clearly, he still has some issues on empathy, bluntly telling me that he needs no help anymore when I asked him whether he missed his teacher. But to actually assert himself, that he's doing alright, that he can already manage, is one big milestone achieved for this 10 year-old kid with Asperger's. Wait, let me rephrase that...This smart 10 year old kid.

Next scenario. A short thread of conversation with an old high school teacher. Let's call her Miss A. She was my World History Teacher in senior year. And she gave me a D in current events the final level of exams. Yes, a failing grade in that itsy bitsy area of learning in Social Studies. But it's okay because I deserved it anyway. I was an apathetic student back then with no intention of learning about what went on in Philippine Politics. She drove us nearly mad with her constant grilling to think analytically, think critically, understand the motivations, understand why kings conquered nations, so on and so forth. In our oral exams which we called "conferences" , we knew better than to sit there and not be able to provide good answers to the questions she bombarded us with. And when I mean good answers I mean, you better know why your answer is like that because she is sure as hell gonna ask you why you came up with that answer even if it was correct. Our recent thread of conversation went on like this:

Me: Miss A, you look as youthful as you did 15 years ago when you taught us World History.

Miss A: Oh no, An, I feel like a hundred years old. Especially with the students here (foreign country, wont' mention where) very "badlongon!" (naughty or undisciplined)

Me: Lupig pa sa ka badlongon namu Miss? (Even naughtier or undisciplined than we were before, Miss?)

Miss: Wa pa tawn mu ka one fourth nila! (You were not even more than one fourth naughtier or undisciplined than them)

I am now nearing 32 years old, I have a family of my own. And my World History teacher is still teaching students, living out her passion, no doubt, drilling into their heads to think analytically, think critically, think well. She is one teacher who never gives up despite the type of students she handles, foreign or non-foreign ones, naughty or well-mannered ones. I will always be grateful to her. I will always remember her gumption and passion. She taught me to find what I love, do what I love and to do it well. And if somebody will ask me if I miss her, my reply would be and emphatic "yes!". Unknowingly, she has become one of my mentors of which I have only realized her true value now that I have my own family,two boys to raise, and autism in our lives to deal with everyday. Because mind you, every single day, I have squeezed my mind like one who squeezes an orange to make orange juice to understand my boys, understand the workings of autism on the brain, understand the motivations of people I deal with almost to the point of being psychic. Now isn't that what you call critical thinking? Thank you Miss A. :-)

Third scenario. This afternoon. One of our students arriving at the center saying, "No more sped teacher. Only Teacher Ingrid and Teacher Mary (not their real names)." This kid was the first one to be mainstreamed from our center. He has done so well in regular class since. But his neuro-developmental pediatrician has not recommended his parents to stop his special education classes yet since he still has some areas to work on. But adamantly so, he feels, like Francis, the smart 4th grader, that maybe he doesn't need help anymore too. Another assertion, declaration of independence. Again, I smile at the thought with pride and hopefulness. I expressed out loud, " We'll get there soon." His mother added, "In God's perfect time." He then went inside upon his sped teacher's prodding.

Francis and our kid at the center asserted that they don't need the sped teacher's help anymore. I miss my old high school teacher. Two very different reactions, it may seem to be. But when I look really deep enough, I think these two kids share the same reaction as mine. Even with autism on the front lines, their assertion and declaration of independence is actually a way of showing their therapists and teachers, " Look what you've taught me. Look how well you've taught me. I can do it now. I can do it on my own." And I think that this is by far a greater show of appreciation for all the teachers and therapists who helped them come so far.

So in the end, while it does matter until when therapy and special education services are need for our kids financially, the bigger question, the bigger reality that matters is how much our kids have achieved right until this very day. How far they have come, how many milestones they have reached, how deeply they have connected with our world with their own hard work and perseverance. Living with autism has taught me one good lesson, and that is to celebrate moments as they happen, wonderful ones even the not so wonderful ones. And it doesn't matter how long therapy and special education is needed for my two boys for as long as they continue to help my little prince and feisty king accomplish everyday milestones.

There's this slogan that I love: "UNDERSTANDING AUTISM IS NOT THAT DIFFICULT. START WITH LOVE AND THE REST WILL FOLLOW."

Start with love, continue with never-ending patience, support, perseverance. End with love and all the questions in the world would not matter. The rest will surely follow--our children's progress, growth and improvement will happen.

I remind myself of this everyday. And I am sure in my heart of hearts, the day will surely come when my two boys will also emphatically and adamantly say, "I don't need help from my teacher anymore." In God's perfect time...

Tuesday, August 7, 2012

Khalil Gibran and the Reality of Autism

A father's toast to her daughter on her wedding day. So wonderfully, eloquently delivered to guests of 300 or so. Maintaining composure all the while fighting back tears with the realization of how powerfully true Khalil Gibran's words were.

On Children
Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable

The first time I read Kahlil Gibran's The Prophet, I was still 22 years old. With all the youthfulness, idealism, excitement and immaturity of that age. I read it and was moved at the poetry of such words. How truth was elaborately worded out in such language! When I read the above passage at the time, I felt a connection with it almost immediately because of how my papa and mom raised me. Never once did I hear them impose an ambition on me. Never once did I feel that I had to be this and be that. They let me be my own person, make my own decisions and face the consequences of those decisions. For better or for worse. And I will always be grateful for them for being that way.

Through many discussions, my mom and I talked about how one of the many wonders of bringing a child in to this world is to ironically care for him, feed him, clothe him, love him as he needs to be loved. And yet, and this is where the irony enters, when he grows up and is able to make his own decisions, stand on his own two feet, literally and metaphorically, you need to let him grow his own wings. Let him explore the world on his own, make goals and dreams for himself, let him work for it, let him live out the values instilled in him and let him face his own failures and successes. So what else can a parent do? What else can a father or mother do? Their roles transform from that of being a caregiver into a soul-giver. A parent becomes a safe refuge, a coming home haven, that no matter what happens, whenever the child needs solace and rest, he can always come home to them, whatever the child's or adult son or daughter's soul needs--wisdom, insight, inspiration, renewal of strength, love, hope, faith. At 22 years old, in many of my aspirations, I looked forward to having children of my own and letting them be whoever they want to be in this world. And I had this concrete picture in my mind of how things would play out.

Of course, things never turn out the way we expect them to turn out. At least not in the way we think. There's a higher power at work.

The second time I was reminded of Khalil Gibran's words was at a relative's wedding, July of this year. And I was jolted from my senses. How differently it impacted me right now compared to 10 years ago.


Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

When I attended an international autism conference two years ago, in one of the plenary sessions on socialization, a parent asked the speaker,"Will our children ever have a chance to marry and have a family of their own?" The speaker responded in a light manner, "Well, the challenges of marriage for normal people are hard enough, how much more for them?" At this, the audience released a series of laughter, of amusement, of nervous realization of reality, of relief? I don't really know which was which. In my case, it was an admission of one of the realities of autism. Looking at it in a positive light, I see it as having that simple comfort that I now have somebody to hold hands with till the end of my days. A life partner in my son. On the starker side of reality, the letting him grow wings, exploring the world on his own, having a family and children of his own, does not seem to be part of the scheme of his life. I have mixed emotions about this. And I am trying to sort it out as I am typing right now.

Sad. I am sad because I so looked forward to letting my own child aspire great dreams, work hard for it,find his passion, find a job that suits his passion, meet his soul mate, marry, have children of his own. I was eager to raise him the way I was raised by my own parents. I looked forward to letting him be his own person, able to withstand the challenges of the world and face it head on, and channel his strength to his family.

I feel enlightened. Is enlightenment an emotion? I think not. Let me try again. I am enlightened. By the fact that my definition of joy, fulfillment and contentment is largely influenced by what society thinks it should be. Whoever said, that the only way to be happy, fulfilled and contented is to follow the "normal" path, is seriously in for a perspective overhaul. I am in for a perspective overhaul. Everyday it seems. A voice deep down inside me is admonishing me that letting my own child grow his wings, exploring the world on his own, being his own person is happening right now as we speak. Everyday I am looking at my little prince doing exactly that. The only difference is that I have the chance to witness it literally everyday. I have to be there. Because Garret needs me to be there for him. To protect him. To care for him. To love him as he is. To let him grow his own wings. Maybe not in the way I mapped out 10 years ago. But in the way the universe wants him to.

I bore my little prince for nine months but he does not belong to me. He is the very manifestation of the universe, of life longing for itself. He is the angel assigned to me by the heavens. I brought him into this world but not for me to own him. But for him to teach me what life is really all about-- Surrender. Letting go.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

I am here on this earth to give them all the love a mother can give. But I cannot teach them to look at life the way I see it. Garret and Morgan teach me everyday to be more patient, to be more brave, to be more kind, to be more resilient. I have to strive to learn the lessons they are teaching me through their own persons. I can only show them the way a parent can. But it is up to them to carve their own path. Whatever the universe has planned out for them, will be. And so be it.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Even as autism breaks to us this reality that our children will always need us literally, until the very end, in between now and the future is what is important. There are lessons to be learned, values to be lived out, lives to be enriched not just our own but the lives of other families. Even if my boys may never follow the path that normal society dictates it to be, they will reach far. They are their own persons. And what is my role? I am a caregiver and soul giver. Always. Until the very end. I am the bow from which my boys will soar wherever the universe may take them. Whatever angle the heavens may bend my strength so that my boys will reach far and wide. I have to be a rock , hard and unmoving and be like the flowing water all at the same time. I have to be the bow that the heavens will bend so my sons will reach their true potential. And at the end of every day, I have to trust in that higher power that he loves my boys so much to know what he is doing. And I have to have faith that he loves me as well. Especially through the toughest times.

So back to that wedding toast. At that moment, it seemed as if I was frozen in time as I listened to every word the father intoned of Khalil Gibran's wisdom. I was no longer awed merely by the beauty of the poetry that struck me 10 years ago. I was moved at how powerfully real his wisdom was...My boys are not my boys. They are of the universe. I am a parent, but I do not own them. I am a caregiver and a soul giver until the time they need me to be. I may not be able to make that toast that a mother gives to his son on his wedding day, but it's okay. Garret, my little prince and Morgan, my feisty king will be whoever the universe wants them to be. This is what joy, fulfillment and contentment means, after all.

Thank you Khalil Gibran. Thank you autism. Thank you universe for giving me Garret and Morgan.