Questions, Courage, Truth

Our lives with autism.
When will this be not an uphill battle?
What's the point?
Why does it feel like I'm left behind?
Why does it seem that my boys are left behind while the rest of the world moves on?
Is there no getting out of this?
What is the purpose of all this?
Why my boys?
What does the future hold for us?
But most importantly, for them, when we are gone?
Why other people and not us?
Why other kids and not my boys?
Where and when is our salvation?

This barrage of questions invading my peace. But somehow I am compelled to ask the most difficult questions because the answers compel courage to come forth. And it's almost easy to fall into the trap of self-pity and to an extent, despair. Almost. Until just moments ago, Garret approached me out of the blue, gazed at me with eyes holding the most indescribable, incomprehensible tenderness and Morgan, cheeks all rosy pink from jumping on the mattress grinning, all teeth and gums showing, grinning at his momma--- there's my answer, this right here, my truth. And it is just so much easier to fall back into a state of grace, gratitude and peace. :) And yes I am truly glad I was not afraid to ask the questions.

Insights from Another Contintent

Some days are good and wonderful and some not so great. And then there are days where you meet people who let you see the world in a different light, allow you to reach deep within your soul and illuminate even the darkest corners of your mind. I am so blessed to have come across a fellow autism parent from another continent, a father who is undoubtedly and utterly devoted to his son. I have him to thank for the insights I gained for the past two weeks.

My boys, Garret and Morgan, are sent to save me from myself.

Mark Twain once said, "The two most important days in your life are: the day you are born and the day you find out why." In the most wondrous of days where miracles happen, when my two boys reach certain milestones at their own pace, my heart soars. When I see the joy in the faces of the other parents at the center because of their own children's milestones achieved, all the more joy. It is at this point that I reach my own milestone. There is that one clear, true thing that resonates within my soul-- I know now why I was born--So I can parent my two boys. To be a mother to Garret and Morgan is the greatest gift the Universe has given me. My purpose in this life is a gift from the universe. And the other reason is so that I can help other parents, families, children afflicted with autism. My boys are sent to save me from myself so I can serve a purpose greater than myself. So that I can be bigger than who I am. The universe has given me the greatest gift. And this gift is my salvation.

My two boys make our lives doubly blessed, double the strength, double the resilience, double the joy.

Everyone reaches a breaking point. I did three days ago. I went to the safest place I could find and wept. I asked all the unspeakable questions that you're not supposed to ask. And I allowed myself the mistake of self-blame and self-pity. I just had to let it out. Somehow detoxifying myself from all these negative thoughts. Purifying my soul somewhat. And two of the kindest people I know provided me a sense of comfort. They prayed for me right there and then, even cried with me. I cannot thank them enough. When I was relieved from all that ugly pain, I pulled myself together and with a newer, stronger resolve, I said, "Despite everything, I am still blessed." We are not given crosses we cannot carry, so they say. That is why I know with my two boys, I have been given double the strength, double the resilience, double the love, double the grace and double the joy.

"Having children of any kind is a privilege that not every adult gets to enjoy. It's our duty to those people to appreciate our children fully and never take the experience for granted." -Pete Owens-

No need for explanation, really, for this third insight. Life is really,really good to me. Thank you, life. Thank you, Pete Owens.

Lastly,

One of the great purposes of autism is so that we will never forget our shared humanity.

The Talmud says, the highest form of wisdom is kindness. We are but one in experiencing the complexities of life. We each carry our own burdens, we each have to climb our own mountains. Autism may have been brought to our lives so that we may know how to value people more, be less judgmental, be more accepting of each of our individual eccentricities and plain differences. As we rally on the advocacy of spreading autism awareness, we must not forget the basic premise of our earnest admonition-- kindness. We are pleading people to be kind to our children by having an open mind and open heart, be more accepting of them, be educated enough to help them the right way, and if they choose to be, they can be advocates themselves of our children and other children with special needs. We are but one humanity, regardless of race, nationality, country or continent. We draw strength from each other. We draw wisdom from each other. And that wisdom, of the highest form, is kindness.

This particular day, all I can say is that the Universe certainly knows what it is doing. Autism at the top of the list.

More than Okay, More than Enough

A hectic day yesterday at the sped center, with the neuro-developmental pediatrician doing 9 evaluations on children. In the afternoon with the evaluations still going on, our kids had to go to the main campus to have their group class/ birthday celebration of one of the kids. I, being the coordinator slash mother slash parent counselor slash organizer of both equally important activities had to do the best I could to somewhat facilitate both activities. So by 2 p.m., I had to leave Garret with his teachers and classmates during group class. With a crying Morgan, who had no intention of joining the group class, in tow, off we went back to the center. I had to check with how the evaluations were going. At around 3:15, I was finally done with explaining to the parent who was already done with the evaluation, our sped program at the center and her options for therapy. Explaining and part counseling actually. So anyway, we went back to the main campus and when I entered the room the kids were already seated eating their Jollibee spaghetti and hamburgers. I scanned the room for Garret and asked the teacher, "Teach, was Garret a good boy?" The teacher responded, "He did okay ma'am." I smiled relieved. I felt guilty leaving him even if it was just for awhile. And hearing the teacher's answer that he did okay, was more than enough to ease the guilt.

What does "okay" mean? If we take it literally, it means satisfactory. Not exceptionally good, but satisfactory. Same with the word, "fine" which in turn means again, satisfactory or in a pleasing manner.

Whenever a therapy session or sped class ends, the parent or caregiver usually asks the teacher or therapist, " Kumusta man akong anak, teach?" (How did my child do in class?) If no tantrums or meltdowns and he complied with most of the tasks given to him. Then the teacher would reply, "Okay man siya ron ma'am" (He did okay today). Or if the child did exceptionally well, a variation of "Okay kaayu siya karon mam." (He did very okay today). I pondered on this thought on why our sped teachers use this term. Why not say" he was a good boy today"? or Why not "he was a bad boy"? If indeed the child did not cooperate that much in class. I don't know if it is just us Filipinos who start teaching the very basic precepts of right and wrong by using the term "good" and "bad" actually assuming that if the child misbehaved or was not compliant, he is immediately labeled as a "bad" boy. Is it universal? I don't know. Anyway, the point that I am trying to get across is that, I think the term "okay" is actually turning out to be the most appropriate and best way to describe a child's performance in class or therapy. Obviously, it is the least of our kids' concerns to purposefully behave in a good or bad manner. Our kids on the spectrum are trying hard everyday to deal with the normal environment that their neuro-typical peers get adjusted to quite easily everyday. So when they do go to their therapy sessions or sped classes, they are doing the best they can with what skills they have in an environment they have no control of. There's this adage that says children never lie. And that they have the purest of souls. I believe this to be true. More so with our kids on the spectrum. So it is unfair to label them as being a "good" or "bad" boy or girl. It is just not right.

I was sharing to our senior high school students last week about how sometimes or even most of the times when kids with autism have tantrums or meltdowns especially in a public place, what we parent really want to say to those who are looking at the "scene of the crime" with judgmental eyes is this, "My child is not misbehaving. He has autism. Please understand." Our kids are not being "bad". They are trying hard. And maybe the times when their coping mechanisms are not enough, that's when they behave inappropriately. And to use the words bad, undisciplined, or other worse labels on them is unthinkable and simply unfair to our kids and to us parents who are doing the best we can.

In reality, this use of "good" and "bad" is like second nature to maybe most parents. Personally, I know I am making a mistake every time I do this. But it just rolled of my tongue quite easily when I asked my son's teacher whether my little prince was a good boy while I was back at the center and they proceeded with group class. When did I realize all this? After we got home and I bathed Garret. He was close to tears because he was already too tired and just wanted to lie down on his bed. The thought just struck me. Because I knew right there and then that he really did well in group class and was already tired. He did the best he can. (Naningkamot jud akong anak.)

Here's the full version of the teacher's answer:

"Was Garret a good boy, Teacher?"

"He did okay, ma'am. He just sat down and took his snacks. He got his biscuits and water from his own bag and sat down. Then he wanted more biscuits but he couldn't find any. He didn't complain but instead played happily with the door knob of the bathroom."

So the easing of the guilt was actually just a mere fraction of what I actually felt at that moment. I was elated, happy, overwhelmed, happily overwhelmed at the thought that my Garret did very well on his own, eating on his own and sitting down without complaining and everything! With everything going on, our little prince once more has shown how far he has come. He did okay. He did very very okay. I take back my question. Because I know that no matter what my son does, however he behaves, however he copes with everything in his environment, however he deals with the normal world, he is a good boy. No matter what. He did the best he could that afternoon. And it was enough. But how he did yesterday afternoon is never a measure of whether he was a good or bad boy. Because again, no matter what, my Garret, my little prince is and always will be a good boy. And if the situation was otherwise, if he had tantrums, or had a meltdown, I know in my heart that my son did the best he could with whatever strength and courage he had, with whatever coping mechanisms he had. To think of him as being bad if this were the situation is unthinkable, unfair and just not right.

Four days ago, I took photos of my little prince while he was playing at the koi pond. I wanted to capture his pure soul and innocence on camera. And when I looked at the 50 or so photos I took, only a handful even came close to what I wanted to capture. Maybe you really can't replicate such purity and innocence on a photograph. Maybe you just have to see it for yourself, in person, experience it yourself with all your heart , mind and soul. In the same manner, I should stop using the words "good" boy or "bad" boy when it comes to my boys. They are good souls, the purest ones. And these souls can never be measured by any label.

Garret did okay yesterday. Very okay, in fact. My boys are okay. This is enough. Pleasing manner or not so pleasing, they are doing the best they can. They are doing fine. They are strong, and brave. That is more than okay. This is more than enough joy for me.

What a blessed life I have!

Days Like These...

It's just one of those days where I'm in the "why" zone. One of the many moods and zones I go through being an autism mom. Right now I don't even want to call myself "warrior mom" as I profess myself to be. I'm in that place where nothing seems to make sense and I am on the verge of having a nervous break down even if I don't have time for it. And even thinking that I am still blessed and fortunate than many others, does not even seem to change my perspective. Judge me if you want. It doesn't make autism go away anyway. I am just asking the question, "why?". Why my boys? Why the task avoidance, why the frustration tolerance? Why the heightened sensitivities? Why?

"If your path is more difficult, it is because of your high calling." I read this on an fb wall of a fellow autism mom. And she commented to this effect, "Is there such thing as a low calling? Because if there is, I would very much take that over anything else right now." This exactly what I feel right now. If I could just scream like hell into a pillow or an empty room in the hopes that some logical answer might come. By logical I mean, something that could radically shift my mood, alter my "why" zone right now into the "What can I do about it? Because I will do it because I'm a warrior mom" zone.

Last night as I rocked my feisty king in the rocking chair so he could sleep, for the first time in a very long time, I prayed not for strength. I prayed for help. Literally asking all the angels looking out after us out there to help me. Because my load is too heavy. I did not ask for a strong back but for the load to be lifted literally off my aching tired shoulders. I am not complaining. I am just saying that I am tired. So could somebody, anybody, out there please help me? Because I cannot do it all. I cannot keep it together all the time. I cannot always find a reason to be grateful. I cannot always see the blessing behind the ugliness of autism. I just cannot. My prayer was not even that of letting go and letting the higher power do its work. My prayer was a demand to the heavens that please, if you could just spare me a little help down here, do something!!!

I'm a bit ashamed of what I am going through right now. Because there is so much to be thankful for. And I always have a choice-- to focus on what breaks me or what holds me together. I know that in my head, a bit too much, and in my heart, all too well. But you know how it is, knowing is different from actually doing it. Applying the theory, because of so many variables. So what else is there for me to do right now? Nothing. Because there is nothing I can do about autism. It's there. It's something I deal with, we all deal with everyday--tantrums, meltdowns, manipulative behaviors and all. I forget, there is one thing I can do just like what I did last night. Take out all the human variables and reasoning and logic. and Pray. I can pray.What to pray for? I don't even know anymore.

Can you pray with me and for me and for all the autism moms out there? I hope you do because we need all the answers we can get especially to the questions why, what and how. Why Autism, What can we do about it and how do we carry on? Prayers move mountains, my mom constantly reminds me. I know this. Maybe it's time I stop the knowing, the logic, the reasoning and start doing. And start praying.

Because maybe this thing that moves mountains will get me back on track and radically revert me back to my "warrior mom" mode. And I think I should stop the "maybe" thing going and start believing. Faith, yes, what I need right now, especially on days like these...

So This is What Motherhood must be...

A distant but very vivid memory...Elementary 1990. After a long day at school mom would pick us up and on our way home, when the rain would beat down and fog our car windows, after boring myself with drawing letters and shapes with my forefinger from the inside of the car, I would usually fall asleep on my mom's lap at the backseat. Her hand would gently stroke my hair and she would sing and hum as I would fall into a nap. With the traffic of Don Jose Avila Street to Cabangcalan, Mandaue, I had pretty much had a quite amount of time to enjoy my slumber.

Fast forward to college. 1998.In between classes I would usually kill the time at the library. Yes, I'm quite the geek, thank you very much. But not really, the library was just the most conducive place to hang out what with the air-conditioned facility with big tables, books, quietness. Did I mention big tables? This was not only for studying, you know, sleeping was one of the activities done in this conducive place for learning. Anyway, I'm getting off track here. Memories do that when they come in a barrage of flashbacks. Moving on. In my free time I would keep at it with my "poetry" or just writing words I felt like writing on my blank journal. Yes, there was no facebook yet during that time. Blogs were like from outer space for me. Internet was even an obscure concept for me. So journals and diaries were the ways to express my "creativity". In one of my presumably created poems, I wrote about how I would become a mom myself in the future and my little girl after a long day of playing at school would fall asleep on my lap and I would hum her a little song that would carry her into a deep slumber. At the time, I merely imagined what it would be like to finally be a mother. To hold a child in my arms. One to call my own. I read it again a few years ago, already with Garret in tow that time and I was amused at how cheesy my choice of words were. But at the same time I was amazed at how the emotions that brought forth that writing back then were as clear as they were in the present. Somehow I think even before I knew one of the things I wanted to be when I grew up was to become a mom.

July 2012. Last week. With Morgan's sleeping pattern gone awry and completely unpredictable, we have tried every possible strategy. Don't let him take naps in the afternoon so that he would sleep straight in the evenings. We'd have heavy work activities in the afternoon so that he would tire out. We would let the caregivers sleep beside the boys so that they won't have a chance to whine and make "langi" with mama around. Sometimes it worked, other times it just wouldn't. I've exhausted all reasoning, blaming all this on autism or is it just one of those "youngest sibling" syndrome manifestations that my little one wants all the attention. I don't know which is which already. Anyway, in one of our "strategies", with no nap for my king, we drove around the city. And what do you know? Morgan's eyes were getting droopier by the minute until he finally fell asleep. I positioned him gently on my lap. He curled up like a baby, breathing deeply. Snoring even. We drove around till the sun went down.

I realized, this is exactly what I wrote about many years ago in that college library.Having a little one curled up asleep on my lap. How deeply different it is to be the mother this time. How wonderfully different it is to be the one who lulls your child to sleep. I read once that one of the most beautiful joys you can ever experience is having a child fall asleep in your arms. Very true. I think it has something to do with that amazing power, that intuitive ability to be able to allow your child be in a restful state, to see your child in his most peaceful aura, to see one of the most defining moments of what you define as joy and the very purpose of your life as you know it. But most of all, I realized all at once this profound yet simple declaration, "I am a mother now." Of course it has been 8 years since I've been a mother. I realize that every single day. But to remember my musings way back when I had the least maturity and now with this reality. I am amazed. Mostly because motherhood has been so beautifully fulfilling, albeit bittersweet at times but beautiful always. One of the most amazingly life-changing experiences in a woman's life. To be able to care for another human being with all your heart and soul, body and mind (lawas ug katarungan). And more than anything, I realize with my heart in my throat this time, how blessed I am to mother my boys, Garret and Morgan, my two handsome, amazing pieces of royalty. They live and breathe the very essence of life itself-- mystery, uniqueness, pride, humility,kindness, compassion, courage, fortitude, love, above all. And to witness these every single day in my boys' faces asleep or kicking about in the day-- the Universe has been, and is, so good to me.

Even before I knew I was going to have a family of my own. Even my close friends from high school predicted that among the four of us, I would be the one to go through this journey first. How right they were. I knew that. They knew that. But what I didn't know was how my life was going to be changed so deeply, so profoundly, so resonantly, by being a family woman, by being a mother. And what I didn't know was that even if I was given a chance to change one thing in my life, this would definitely NOT be it. Even with autism in the picture.

Last night. July 6, 2012. I finally found a way to make my feisty king sleep. I carried him in my arms and bounced him as usual on the vestibular ball, but this time I sang to him a lullaby..."Rock a bye baby on the tree top...." It didn't matter that it was already past 12 midnight. Morgan finally fell asleep in my arms, breathing heavily, snoring just a bit. Transferring him to his bed, I breathed deeply. As I closed my eyes I once again thanked the universe for everything in my life. Looking over at my two boys, Garret on his bed on his tummy, Morgan on his back, the most peaceful look on their faces, just like a new born baby. So this is what it feels like to finally be a mother. Heavenly.

Postscript... We beat the sleep monster of autism last night...So this is what it is like to be a mother-- to find all ways and means to beat the crap out of whatever hurts or disturbs my boys' peace. Whether you call it autism or by some other name, motherhood beat the crap out of it last night. :-)

In Loving Memory

Morgan was fussing about a very leafy plant of one of the tombstones and I was cajoling him to begin our exercise. Bianca, our chocolate dobe, Garret and Andro were already starting the usual rounds of walking when I noticed a girl dressed in a pretty dainty white dress and wearing a medal around her neck. Her brother snapped photos of her while she posed happily. The rest of the family gathered around a tombstone talking quietly. I  figured maybe this family came from the little girl’s graduation ceremony and decided to visit a loved one.

This is what I love about our Asian culture. Strong family ties-- the closeness that goes beyond death. I don’t really know the real story of the little girl’s family I observed earlier but what I could sense strongly was how they wanted the loved one who passed away to share in their joy and pride. Don’t we all?

Tomorrow is the big day. Garret will turn 7. Although among the Chinese, Garret will be turning 8 tomorrow. A child’s first birthday is counted as his 2nd year. When you think about it, it is actually seeing life with a forward thinking kind of perspective—a certain optimism to it. It is like saying, “Today starts my 32nd year of life.” Or in Garret’s case, tomorrow will be the beginning of day 1 of his 8th year in this world.

I digress. So we were at the memorial park visiting my father-in-law’s grave, Papa Ching and doing our usual exercise with our boys and our dog. Andro and I often say things like, “If Papa Ching were alive, I think he would never get enough of the boys. Maybe we won’t even get to see them because probably he would insist in having the boys over at their house all the time.” And I would add, “ Well, if my Papa Suy An were alive, the boys would already have been brought to the Chinese temple and hundreds of incense sticks would have been lighted for them for good fortune and to ward away unkind spirits.” We both badly wish how our fathers have been alive to see our boys, their faces, their healthy and robust bodies, their naughtiness, their achievements, and their uniqueness, their vibrant personalities. We imagine many times how much their faces could have beamed with joy everyday in seeing their grandchildren up and about their business of just being who they are—Garret being delighted like crazy over our newly built koi pond, thanks to his papa and Morgan with his constant skeptical look framed in his eternally knit eyebrows and pouty mouth. And tomorrow will just be one of those days. I wish Papa Suy An were here to see his prince of a grandchild turn 7 years old, or rather starting day 1 of his 8th year of life. I wish he was here alive right now. I wish it so badly sometimes it hurts.

Maybe love is really like that. When you love a person so badly, even if they pass on, the celebrations you have in this lifetime will never be truly complete without their presence, or at least without making them a part of your triumphs and joy in whatever way. That’s how family is to us-- thriving on a love that is so much stronger than death. So I truly understand the scenario I witnessed this afternoon of the little girl with the white dress and medal and her family. We have our own kind of graduation. Not the typical one with the medals and ribbons and certificates and all. But something definitely worth celebrating, not just during this time of the year, but all year-round—good health, great job going to school and therapy without complaining, doing tasks with little verbal or physical cues, understanding 2-step instructions, humming nursery rhymes in perfect tune, plunking piano keys to the tune of Old McDonald, butterfly kisses and tightest possible hugs with eyes crinkly, Chinese-y, learning to be independent, brushing own teeth, dressing oneself, carrying one’s bag, learning to cope even when mama is not around. All these things are worth celebrating. Every little milestone is a graduation in itself. And every single day, how we badly wish Papa Ching and Papa Suy An were here to witness it all with their own eyes. So in our own way, we make them a part of our everyday celebration, our everyday graduation.

They say we channel our loved ones’ character traits, mannerisms, philosophies and values when we miss them the most or to keep their memory alive so that it may seem like they are still right here with us. They say children are an extension of oneself, grandchildren all the more what with the third generation theory that the “lolos” and “lolas” (grandparents) are seemingly replicated among the “apos” (grandchildren). Morgan has this trait where he examines and observes all things before accepting it as worth his time. He has a mind of his own, a plan of his own all mapped out in his head. Garret is so easy to please, more compliant and more flexible than his kingly of a brother. When I ask Morgan for a kiss, he will kiss me only 3 times full on the lips, no more and no less. When I ask Garret for a kiss, he willingly gives his chubby cheeks or cute lips all the time. While Morgan has physical features that resemble Papa Ching, save for his light complexion and his eyes that disappear when he grins, Garret has ears that stick out like his beloved Chinese grandpa.

So what do we know? Papa Ching and Papa Suy An are here, right here beside us after all. They are seeing with their own eyes our beautiful boys’ life. They are witnessing our boys’ graduation every single day. They are both celebrating with us everyday.

The term “commencement exercises” that is always used in graduation ceremonies spelled out in Styrofoam cutouts embossed on every graduate’s stage backdrop means the beginning, to start anew. New possibilities. Optimism. Forward thinking. And coincidentally, as I am proudly 75 % Chinese, today, I choose to channel my father’s philosophy—Garret begins his first day of his eight year in this life tomorrow. I am ready for wonderful possibilities for him. I anticipate only amazing things he can achieve. I am optimistic that I will carry on. I will be strong for my little Prince and Feisty King. I will not let myself be easily discouraged or frustrated when people judge or criticize me. For every problem that is presented to me, I will look beyond the fingers and focus on the solution. And I will choose compassion, kindness and love above all things.

Whoever said parenting ends when life draws its final breath? I refute this. Apparently my papa is still teaching me, parenting me, loving me through his most potent channels of life and love, his grandchildren—Garret and Morgan. Papa Suy An is right here beside me. Right here in my heart. I must dare not forget this fact.

Thank you Papa Suy An for showing me what life is really all about—Compassion, Kindness and Love. And in what better way to show me all these three values than in the persons of your grandchildren, Garret and Morgan.

I miss you every single day, Papa. With all my heart, I love you with all my heart. And forever until I draw my last breath, I will always be your princess.