Enough

This is a photo of Garret doing a Farmer's Carry with a 10-pound kettlebell in each hand, for our functional movement exercises this afternoon. He started with a 7-pound kettlebell just barely a month ago. Now he can carry 3 pounds more in each hand. But what is more astonishing is how he responded to what I requested of him. I asked him to pick up the kettle bell one last time so I can take a good photo of him. Without hesitation, he picked up the kettlebell looked at the camera, stood still and after I clicked, he put down the kettlebell and went back to our room. 

"Come, Morgan. It's time to climb. And we'll hold on for five seconds, okay?" Morgan quietly and willingly approaches the wall, positions his hands and feet on the holds and held on for a solid five seconds. With no help from Mama. Morgan's understanding of the world has expanded clearly shown in the quickness and relevance of his responses. 

Since May this year, we've decided to take the personal reins of our two boys' education as our sped center has reached its final journey. And now more than ever, never have I been more fulfilled as a mother. This is not to say that it is easy. It never is. If any, the challenges become harder. But one thing is certain-- our joys AND ponderous moments are richer in meaning, realer, deeper in purpose. 

I remember the day Garret was first diagnosed. I broke down. Wept in the doctor's clinic. The barrage of questions came. How will we endure? How will we overcome?  There were no answers, only a certainty that the future arrives one day at a time. Today, I remember  this is how we decided to live our lives from then on, to do the best we can one day at a time. 

I reflect now too that in order for us to have arrived to this day, doing the best we can meant we gave value to the present moment, to value presence. To be with our boys in the real sense of the word. To eliminate what is not important, what does not add value to our lives. To focus on what does.

So when my vision of the road ahead blurs as it surely will now and then, I only have to remember how we have come to this place, this very moment-- Presence. When I am present, I am able to see with so much clarity how much Garret and Morgan have come so far. When I am present, I am able to know what they truly need. When I am present, I am reminded that what they need, what we need is what we have right now. When I am present, I know in my heart that what we have right now and what is in store for us in the days to come is and will always be enough.

The Song of the Skies

My baby sings with all his might
singing with the sun, the moon, the stars
with all the sounds of the earth
under the majestic, heavenly skies
No matter there are no words
deciphered, only hums and drums
but still he sings
with all the wonder in his eyes
Our child explores
for the first time,
it seems
Our face, our voice, our love
in the most concrete of ways
Our words of " I love you's"
no longer disappear into the
universe's dust,
he hears us,
he bids us,
"Come mama, come papa"
Come into my world,
This is why he sings
This is why we sing
the symphony of the heavens,
the song of the magnificent
magnificent skies...
Thank you great sun, thank you!

Of Hearts, Stars and Independence

Recent events have opened an avenue of opportune moments for us in our family. Most especially for our Little Prince and Feisty King. It has forced us to face several facts, head-on, unblinking. For one, Our boys need to learn how to be independent as soon as possible. Two, because the hope of ever finding reliable help (yaya) seems to dwindle by the passing days. And three, in the end, after all, what and who the boys will have after all the "help" has come and gone, is our presence, our love, our unconditional acceptance for who and what they are, and in the end, the only thing constant in their lives is their mama and papa.

In my previous post, I noted how I was postponing teaching Garret to really sit down while finishing his meal. Well, guess what? I finally did it. Correction, Garret finally did it, with a little guidance, urging and prodding. Now, whenever it is time for meals, he motions me to prepare their mickey mouse table set so he can already eat. As I watch him scoop his food with the spoon and fork, brow furrowed in concentration, careful not to let any morsel of rice and pork chop fall off, I cannot help but be proud of him. I have to stop myself from kissing his cheeks which would otherwise interrupt his process of scooping and eating. Oh I am a hopeless mother who delights in every little thing my son achieves. :-) (in the vernacular, "perteng mabawag kalipay.") But I don't care. That's just where my joy lies.

Morgan, on the other hand, "sipat" (naughty) that he is, has consistently been showing how a little grown-up he has become as he removes his crocs and places them on the shoe rack, all on his own. This is a milestone for him. Oh, and during his speech class, he articulated, "yeeee" as his teacher indicated the color yellow, and "geeee" for the color green. When we look at his favorite app on the iPad, when he sees the photo of a turtle, and I say, "turtle", he says, "ttt-h". His pointing has been more pronounced lately too. His joint attention has been clearly observed as well. Whenever his teacher asks him to "get red triangle." He looks at the flashcard first, then at the teacher, seemingly waits for the teacher's confirmation and then gets the red triangle.

A little tidbit about Joint Attention in Autism: Joint Attention is a prerequisite skill in developing social cognition and language-- the ability to perceive and understand what others are thinking and to therefore to be able to engage in social interaction and communication. Clinical research indicates that autism is characterized by chronic, pronounced impairments in initiating joint attention. In other words, autistics show a lack of spontaneous sharing experiences with others. Mundy also points out that individual differences in joint attention are related to the intensity of social symptoms, responsiveness to interventions, and long-term social outcomes in children with autism.(http://www.sciencedaily.com/releases/2007/09/070926111521.htm)

I realize that while I am getting a little scientific here, and may be boring the reader, this is an effort on my part in explaining why my son's particular achievement means so much to us. So I do hope you all bear with me.

But back to where I was going with this post. My two boys have been accomplishing these remarkable milestones. Little they are not. They cannot be quantified as such because whatever they have achieved and will keep on achieving are equivalent to enormous medals for us. Again, I am a hopelessly proud mother of my boys. And they are my joy.

I read in one of the wall posts of a public figure here on Facebook:

"Here is something I have learned about achievements...the joy lies in the person you are and that you have become in trying to achieve them."

While losing the "help" may have created this opportunity for us to really push Garret to be independent, feed and dress himself among other things, while this may have allowed Morgan to be more self-reliant in his own way, in and by itself, this is an achievement for both of them and for them. As of the moment, while they still cannot verbalize what joy they have in their own accomplishments, I can, as a mother, as their hopelessly proud mother. This is what I would like to articulate-- I would like to think that I have come to rediscover how I am content with simplicity and all the blessings and challenges I have been given. I would like to think that I have become a more grateful person, more grounded to the earth, more thankful to the universe. I truly, truly have found my joy-- not just in my boys but in who I have and have chosen to become because of them.

I entitled this post as "Of Hearts, Stars and Independence", indicating the words my dear Garret has consistently uttered in the past few weeks and the independence that we are trying to inculcate in both him and Morgan with clearly positive results, really. But then, it's just not really about what my boys have achieved or what situations drove us to reach these milestones, more than anything else, I am realizing that this is also about my rediscovering who I am and what I have become from the situations that have been given to me. And as much as I am a mother to Garret and Morgan, if there is anything I've learned for the past 8 years of my life, it is that who I am as a woman, as a person is equally important to my role as a mother, among other equally important roles as well. To be a strong, brave and resilient mother, I first have to be a woman of strength, courage and fortitude. This is why I should never ever stop learning, discovering and searching for enlightenment, enhancement in whatever aspect in my life. Whether it is from the most mundane of things in what my boys do or from a search for educational and personal advancement, what is important is the person I have become in each of my achievements. Therein lies my joy.

So I was thinking of another title to this post, but then I realize, there could be no title more fitting than this. As Isabel Allende emphatically cited in one of her insights from bearing one of the Olympic Flags in Italy many years ago, "While skill and luck are what comprises winning, it is the heart, the passion that wins the gold medal." The heart I have inside me as I mother my boys and to be the woman I ought to be is what will enrich my life. For this, I thank the stars, the heavens, the universe, God for everything that has happened. With the passion I have in my heart, with utter gratefulness to life itself, I know my boys will, in time, be able to proclaim to the joy in what they have achieved and be independent men, capable of facing whatever life has to confront them with head on as well.

A short post script to this post... I am so happy and proud to announce how two of our kids at the center, Marc and E.G. will soon be mainstreamed, integrated in the regular Kinder class this month, in addition to Gabby who was already mainstreamed last December. Thanks to the passion and dedication of our Sped Teachers, Teacher Pol, Teacher Loize and most especially to the unwavering strength of heart of their parents. :-) To the parents of Gabby, Marc and E.G. , what your kids have achieved are amazing. Your kids are amazing. But you, parents are BEYOND amazing. To all parents at the center and all the Special Parents out there, I urge you never to lose heart, never to lose hope and to always be grateful to the heavens.

Dinner, Speculations and a Dose of Reflection

I have some hesitation in writing this particular post. I fear I may be too judgmental of parents or families who have neuro-typical kids. And that I may be contradicting my own mantra of refusing to criticize my neighbor until I have walked a mile in their shoes. But then, when I think about it, when will I really get to walk a mile in their moccasins? Literally? Never. After all we are given different life circumstances and resources to go with it. I can only imagine and speculate what I would do if I were in their situation. Pretty much like everyone else, I think.

What I can do though is to bring out memories of my neuro-typical childhood and upbringing, examine my own values and philosophies borne out of my present circumstances and create a scenario and solution had I been given other parents’ predicament. The predicament I am talking about?

My partner and I were out for dinner last night and beside our table was a family finishing their meal. This was the scenario—the father and another adult, the uncle perhaps and the mother were talking animatedly, exchanging stories, etc. There were three kids—all boys. 2 were most likely in their teens and the youngest probably 9 or 10 years old. The 9 year-old was busy eating his food. The older boys were busy. Busy playing games on the iPhone. Both of them were crouched over, silent and totally engrossed in what they were playing. There was no conversation exchanged. When it was time to go, the father announced a faint, “Let’s go.” The two older boys stood up, but their heads still on their respective iPhones, even while pushing back their chairs. Still no words uttered. Not even a “thank you, Dad or Mom for the dinner.”

Or maybe they said thank you in the car…attention still focused on the game on the cellular phone. Or maybe they didn’t.

I thought to myself when they left the restaurant, “ What a waste of time and money. And the boys! Wow, they have postures of a 90 year old man all hunched over.”
So why this post? I think maybe because these are the times when I imagine myself in the shoes of “normal” parents. And how I imagine it to be! So if you would be so kind to allow me my “musings”.

If I were in their shoes, when I take my children out to dinner, NO PHONES ALLOWED. ONLY TALKING—face to face. What to talk about? ANYTHING! Under the sun. And eating of course—enjoying the flavors of the dish served on the table.

If I were in their shoes, I would ask endless of questions to my kids. If they get annoyed by my constant pestering, I would pester then some more just to elicit a meaningful response so we can have a meaningful conversation.

If I were in their shoes, I would encourage my kids to ask questions. Endless questions. I know some parents complain how they tire out answering their kids’ questions to the point of annoyance. Again, I can only imagine. But maybe if I were in their place, I would stop the barrage of questions only when it is time to sleep. Even if my answers would eventually turn out to be silly, maybe I wouldn’t mind and maybe they wouldn’t mind. I know it would feed their souls as much as it would their intellectual abilities.

If I were in their shoes and the kids ask me why the sky is blue and the sea green, the sun bright yellow, gleaming and glaring and the rain comes pouring out in torrents and why the stars twinkle in the night sky, I would surely answer them to the best of my ability until they are satisfied until the next question pops in their head.

If I were in their shoes, I would ask them how their day went, who’s going out with who, what’s the latest fashion trend or computer game or television show or what’s trending nowadays, What or who’s following, etc... And when they do answer, I would listen, really listen.

If I were in their shoes I would encourage my kids to ask me questions about my life, how I came to be, my parents—their grandparents, how I am the mother they see everyday. I would tell them my story. The stories of their lolos and lolas (Filipino for Grandmother and Grandfather), their ama’s and angkong’s. (Chinese for Grandmother and Grandfather) I would tell them my dreams—accomplished or yet to be realized, lessons learned along the way and experiences that could never be bought or taught in the classroom. Even if they seem to be uninterested, I would make them be interested because there are lessons to be learned and values to be taught.

If I were in their shoes, I would ask my kids “What do you want to be when you grow up? What do you like to do? What are your dreams?” And it would not matter if their answers were silly or not. What would matter to me is that they spoke of their dreams. And they have stories to tell.

If I were in their shoes, there would be hundreds of stories to tell, even thousands. And my kids would hopefully learn to look people in the eye when they speak, confidently and sure of themselves because they are more than what meets the eye. They have stories to tell. Real ones. And they know how to communicate it to the world.

So anyway, enough of my musings. Let me wrap it all up with this—If only I were in their shoes. But I am not. My life is a whole different universe. My boys are worlds apart from theirs. And I am not saying, my boys are any less than theirs intellectually. They’re just differently-abled. But here’s the thing about being different, we live in one and the same world. What I do know is that in our world, to be able to communicate—to speak is essential for survival, and not just to voice out one’s needs for food and water. Because we are social beings, we thrive on relationships. No man is an island. And for relationships to even begin is to learn how to make a good conversation, to tell stories, whether real or fiction. And how do you expect a 14-year old to establish good relationships if half the time, his body posture is crouched over a gadget? They are able to speak. Let them speak, even if it would annoy you to bits. I know I would. If only I were in your shoes.

Over and above all my speculations of what I would do if I were to walk a mile in other “normal” parents’ moccasins, I have come to accept that Autism has given my kids a language of their own. A language that goes far beyond words and semantics. A language that speaks volumes louder than words. I have learned to see the beauty of it. But most of the times, it creates hard challenges for us parents, and most especially for our boys as they strive to live in our world…as you can only speculate and imagine as well. This is why for them to even utter a single word is absolute heaven for us. This is why if I were in your place—parents with “normal” kids, I would be grateful every single minute that my kids can speak… and not only a single word, they can speak stories, volumes and volumes of stories that emanates from their heart, minds and souls.

So maybe, when the times come when your kids pester you relentlessly with their questions, and you get annoyed, maybe what you can do is to imagine yourself in my shoes and in the shoes of all the Autism parents out there and to speculate what you would do if you were to walk a mile in our moccasins. Maybe then, this time, you would react differently to your kids. Maybe you would realize how blessed you are to have kids who can express their thoughts, feelings and emotions in a clear understandable manner. And maybe then, your kids will be able to set aside the iphone for a dose of good conversation with you. Maybe they will have better postures this time around, sitting straight and relaxed looking people in the eye. Maybe this time when you eat out, the bill you pay for dinner and time spent with your kids will be well worth it.

The Greatest Love of All

No, this is not a tribute to the late singer. Far from it.

Many years ago, I attended a First Holy Communion ceremony of my nephew in a parish in Mandaue City. As it was Daniel’s turn to receive communion, I looked over his mom, who was my cousin. She had tears in her eyes that she tried to conceal by dabbing the corners of her eyes. When my nephew approached her, he innocently asked, “nganung hilak man ka, Ma?” (Why are you crying, Mom?”) His mom responded, “Big naman ka. “ (Because you’re grown up already.) My “kulit” nephew insisted, “ Unya, nganu man diay ug big nako, hilak diay ka?” (So what if I’m grown up already, why would you cry?”) I remember she answered, “ You will only understand when you will have kids of your own…”

Now, fast forward to the present. I attended our Preschool Graduation ceremony yesterday. The motions of receiving the diploma and awards and such flowed like clockwork. The moms and dads beaming with joy as their 6-year olds received their certificates of graduation, ribbons and medals. The graduates in their dainty graduation dresses and long-sleeve barongs—all a wonderful sight to see. The day marked a milestone for them--how much they have achieved and how far they have come academically and perhaps in all other areas of development. I was present during the ceremony as part of the administration although realizing how very little participation I contributed in the process compared to the past years when the sped center wasn’t founded yet. It was one of those many programs in school for the past year where I found myself being more of an audience than an organizer this time. I was able to just sit back and enjoy the whole process just like all the other parents in the venue. Then a thought came across out of the blue, “Now I’m a parent too.” Of course not like the others who had kids marching on that stage receiving their diplomas and awards. But like them, I was happy for their children. As sentimental as perhaps all mothers can be, I am the worst of them all. I fight back the tears as each child smiles proudly holding his diploma for all to see while the photographer clicks his camera away. If a K2 student were to approach me and ask me the same question my nephew asked his mother many years ago, I think, my answer would not have been any different from how my cousin answered her own son.

It’s not hard to understand how our boys may not have the “normal” usual graduation experience with the diplomas and awards and all. They will have a different kind of milestone celebration. Correction, they are having a different kind of milestone celebration every year if not every day. One of the wonderful things in living with Autism is the fact that I am given the opportunity to always be grateful for what little or big achievement my boys have made. I am grateful every day for every single thing they are able to do, ask properly for a cookie without throwing a tantrum, hold a pen with the proper tripod grip, gesture to an adult that they need to go to the bathroom, fold their clothes properly, pack away things without getting frustrated, all these little details that are so easily mastered by the “normal” kids without a glitch. As for the future, planning for college, applying for work, living an independent life, this reality is still far away. But a very real reality, if there is such a term, nonetheless. We face it with all the courage and strength we could muster one day at a time.

So when the graduation march blasts through the speakers in the graduation hall, and the little ones march on stage, in my heart of hearts if I could speak to all the parents candidly, I would say to them,

I hope every single day without fail; you tell your child he’s doing a great job.

I hope every single day, you tell him that he made you proud he achieved all these things, learning to read and write and speak volumes of stories.

I hope every single day you tell your daughter she’s doing just great behaving and listening to the teachers.

I hope every single day, you tell her “Good job, darling” for willingly going to school happy and excited to learn new things.

I hope when your son brings a test sheet scoring an 80 out of a 100, you tell him, “Well done, my son. For as long as you have learned something, then that is all that matters.”

I hope when your daughter brings a test sheet scoring a 97 out of a 100 this time compared to the perfect 100 the last quiz, you tell her, “you are still amazing, no matter what.”

I hope that even when your child does not belong to the top 10 of the class you still tell him, “You are my son and you are a wonderful, wonderful son.”

I hope that when your child comes home all sweaty and dirty and out of breath, school uniform in disarray, you tell him, “I am happy you had fun at school.”

I hope that when your child comes home and bothers you with all his chitchat about all the friends he or she met in school, you stop what you are doing and tell him or her, “ okay, little one, tell me about your friends. Better yet, tell me about your day.”

I hope that during weekends or summer break, when school is out and he has nothing to do at home, and he is getting bored and keeps wanting your attention, you don’t get annoyed. Instead you tell him, “Come, and let’s do something fun together.”

I hope that when she has nothing to do but ask you endless questions about the universe, the earth, and everything under the sun, you don’t make her keep quiet, but instead, you say, “I love it when you ask these questions, so I could get to know you better and you get to know me better and you learn about this life you have been given.”

I hope that when he goes to bed at night and see him still fast asleep in the early hours of the morning, your first thought is not what things he should be achieving, what medals he should be reaping, what he should be when he grows up, what sort of wife he should be marrying, how much money he should be making. I hope your first thought would be, “Thank you God for my child for all that he is and all that he can be.

So, to answer the question why I got emotional during the ceremony, it is because, I realize how Garret and Morgan have grown. They have come so far. In their own way, they have reached their own individual milestones. They may not have medals or diplomas to show off but just their very existence—their joy, their exuberance for life, and most of all the lessons they teach me every day is worth more than any piece of ribbon or plaque. With wonderful awe, I realize I do have two children of my own now. Now I understand.

And the other reason my heart is twisted in knots is because I am reminded that regardless of what Autism brings to the table, I am still blessed. For normal parents out there, I say this to you—you are blessed. No more or no less than us Autism Parents, actually. But maybe, if I may speak in behalf of all the autism parents out there, our challenges are different maybe even greater in most aspects. There are dreams for our children that we needed to let go of more than you. Your children have every ability, capacity and talent and resources to be who they want to be in the world. Root them to the ground as you show them you are grateful for what and who they are no matter what, as you show them they are loved no matter what. And this will give them wings to be what the universe wants them to be.

Being an autism mom does not give me the necessary credentials to be an authority on parenting. I am well aware of that. After all, we are all different, in situations, in coping mechanisms, in emotional and financial strengths and resources. But I think when it comes to being an authority on gratitude; I may be a qualified candidate. So all I am saying is, I hope, as I am constantly sharing my beautiful and the not so beautiful experiences that Autism brings to my life, I am able to impart and maybe engrave in your hearts that attitude of living a thankful life. Simply because you are blessed—blessed with children who are beautiful the way the Creator made them, healthy and happy. Simply because you can do the things you are doing, your children are enjoying their childhood and soon their youth. Simply because you are alive.

After the school director’s closing remarks and reminders for the coming school year, the Kinder 2 graduates stood up and got ready to sing their graduation song. Facing their parents, the beginning notes of possibly the most beautiful love song resonated through the graduation hall. And the little boys and girls with all their innocence, joy and exuberance sang,

I believe the children are our future
Teach them well and let them lead the way
Show them all the beauty they possess inside
Give them a sense of pride to make it easier…..

Because the greatest love of all
Is happening to me
I found the greatest love of all
Inside of me
The greatest love of all
Is easy to achieve
Learning to love yourself
It is the greatest love of all

Michael Masser couldn’t have written the lyrics any better. I said before that for me life is love exemplified. Well what is love? And what is the greatest love? Garret and Morgan are teaching me every single day, without fail, that to be grateful—to appreciate them for who they are, their individualities, their eccentricities, their beauty, their strength, their frailties and their triumphs-- to live a very thankful life is the greatest love of all.

One last admonition to all parents out there; I hope as your child wakes up every morning, your first words to him or her would be this; “You are enough. You are amazing. You are beautiful. And you will be who you want to be. And no matter where life takes you, you are loved. I love you.”

So, you see this is not a tribute to the late singer or the songwriter. This is a tribute to all the children, all our children.

This is for you, my Garret and my Morgan, my Little Prince and Feisty King. You are enough. You are amazing. You are beautiful. You will be who the universe wants you to be. Mama and Papa love you so so much.