My Favorite Time of Day

It has been well over a 3 weeks that Garret has been without a caregiver. And things have been as you might guess, quite in a state of change. To meet our son's needs, we have to rearrange our schedule throughout the day. Without question. My work schedule particularly, has to coincide with his Sped Classes in the morning. Or therapy in the afternoon, by which time work is mixed with "me" time which I so seldom have these days. Thankfully, my partner is a wonderful father and an excellent disciplinarian which makes our routine flow like clockwork, half or most of the time (wink!).

At around noon to 3 p.m. is our scheduled nap time for Morgan and rest time for Garret. I say "rest time" because he does not nap anymore and prefers to just lie down on the bed and sing or hum or settle in his thoughts. During this time I lay beside him and it is I who usually falls asleep to his humming and singing. What I did not mention in a previous post before where Garret gave me that much needed rest was that apart from the singing and humming and letting me be, he caresses my cheek and hair as I close my eyes in a slumber. And when he does so, he smiles and giggles quietly. It is no different now. He seems really happy that it is his mama who stays beside him during nap time and not a caregiver anymore. And maybe because of his joy, he expresses it by showing his affection not unlike how a mother does to her child. During these moments, my heart melts knowing he is showing his love to me in his own gentle, non-verbal way. During these times, I am the child and he is the parent, giving me time to rest and be re-energized. And maybe, naughtily and unwittingly, he gives me this time to rest knowing how he can be a handful the rest of the day.

A handful, actually, can be an understatement most of the times. I am sure Autism parents can relate to this. Times where we just want to shout, " why will you not stop screaming??? or crying? Or Why can't you understand that you need to stop playing with the water already???" Or simply, times where we just need to shout a very loud and long "AAAAAAAAH" to get all that stress and frustration out of our chests. And just when we are tired out of our wits from dealing with our kids, they come to us and smile the most disarming smile as if nothing--NOTHING happened at all. And what do we do? How do we react when this happens? Of course, our anger just dissipates into thin air and we are grinning from ear to ear. And we're back to the drawing board, where all action starts from an abounding vessel of love and nothing else. I jokingly tell the therapists and to anyone who would listen, "What can I do? I'm a victim of love. " (with the "v" in victim pronounced as a "b" for emphasis.) I watched a documentary once where mothers cuddled with their newborns right after several hours of intense labor. One mother in particular whispered to her baby in one line what all mothers in the world truly feel, " You will never know what you're gonna do with all this love around you." With all the love we have for our children, regardless of all the tantrums and manipulative behavior and "drama" episodes we might have, in the end our heart is just so full of love that even we ourselves don't know what to do with it. This may be the reason why our own kids with Autism with their heightened sense of emotions and all know how much they are loved and sometimes just test the limits of our love for them.

These beautiful "payback" times where Garret comes up to me and makes me feel like I'm the most beautiful person in the world, when he makes me feel like the most fragile child who needs to be taken cared of at siesta time, is my favorite time of the day. Because I know in my heart it is where the walls of Autism are broken down, even if it is just momentary. Because at these times, he reaches out to me from the depths of his secret world. He is able to let go of the bars of Autism and hold my heart in his hands. Many times before I often become overwhelmed thinking about the future, the what if's and all that. What if Garret can never talk? Well, now, honestly, it doesn't really matter anymore, because he speaks to me volumes and volumes of language. And apparently, the universe is teaching me that the only language that matters is that which conveys messages of joy and love and real human emotions. What are empty words and phrases perfected to the most excellent of grammar and sentence construction when they are full of pretense and hypocrisy? I am blessed because every single day, my Little prince conveys to me the most beautiful language, where I am wrapped in this safe cocoon of his gentle and prince-like embrace and I am brought to an hour or so of peaceful rest and respite.

When evening comes and it is time to go to bed, it is my turn to caress his cheeks and gently ruffle his hair and kiss his cute little lips and sing to him a lullaby. The roles are reversed just like it should be now, I am his mama now. And he is the baby seeking a good night's sleep. I close my eyes and whisper "Thank you, Garret for everything you have taught us. I love you so much, you just have no idea how much." Then I pray, or rather ask God, " Could this be Garret' favorite time of day too, God?" Nothing answers me except the heavy peaceful breathing and snoring of my little royalty of a prince, Garret. Oh, and since Morgan sleeps later than his older brother, he with all his feistiness, escapes from his caregiver from his bed and climbs up to me and asks to be cuddled just like a newborn baby too. I rock him and sing to him, "this is the way we go to sleep...." After a while he does not move and is fast asleep as well.

Right now I am training a new caregiver. But I think I have come to love being a more or less a full-time mom what with all of Garret and Morgan's magic moments. Still, balancing out motherhood, wife-hood and womanhood is a challenge. I know I need to be productive and healthy emotionally, physically and intellectually most importantly for my own children. So right now, I think what I'm trying to say is that I am just grateful for what my two boys are constantly teaching me especially now that I am given the time to really be with them most of the time. Priceless lessons and expressions of love are coming my way every day. And I think my favorite time of day may not be singular anymore. I may have to add a lot more time slots to my favorite list of times of the day. Autism may be the greatest teacher in teaching me to see the greatest of blessings in the thickest and most confusing of disguises after all.

With a Skip in My Heart

Morgan just discovered a new, more fun way of getting from point A to point B-- skipping! This was a week ago. We were having our home program at the guest room. When he saw our new spring bed installed, he skipped! With his chinese-y eyes already disappearing and all of his teeth showing in delight, he climbed on the bed and began to skip and jump. His smile was so contagious and he had so much fun I had to join him too.

Our feisty king is a character all on his own. So different from Garret. He seems to have a plan all mapped out in his head that nothing or no one could ever try to stop him if he decides to do things or not to do things. Every time he is asked to do something, whether it is in sped class, therapy or normal everyday things at home, he seems to have this perpetual skeptical look that seems to ask, "What's in it for me?" Of course, his teachers and therapist does not let him get his own way. Work needs to be done and he needs to learn. He certainly is one feisty king. Morgan started his Sped Class last December. And it is only for the past two weeks that he has finally learned to sit down and comply to the tasks given to him without the tantrums, whining, crying and all. What an amazing relief and achievement, my feisty king has reached. The only problem is, once he has set his mind to do the things in sped class or practice for their performance for the program tomorrow, he does not like to rest. He just wants to go on and on even it is scheduled time to rest. Morgan has come so far. And I am so proud of him. My heart is skipping every single day that he goes to class behaved and compliant but most of all happy learning things.

By this time, those of you who have read my previous notes must know already what a sentimental mother I am, maybe o-a to an extent, making the little achievements of my kids exponentially amazing. Well, one of the lessons, I've learned as a mother-- nothing is ever small, mundane and ordinary when it comes to my kids. Ever heard of the term, "Love my own"? Well, I am one very good example. I am fiercely proud of what little progress my kids make. Be it learning how to skip, or blow bubbles, or learning how to sit down and comply to tasks without a hint of crying, whining or complaining-- I celebrate it all. I celebrate my children every single day.

Yesterday, a fellow parent expressed her concern how she wished her child would also learn how to behave like our kids as her own child was still newly enrolled in our sped program. Really apprehensive whether her child could ever learn to sit down and wait quietly, I could see the desperation in her eyes. I responded to her, "We will get there, Ma'am. You will get there. Your child will get there soon. Patience is all we need to have and of course consistency in discipline at home and in school." I added, " We have special children so it goes without saying that the challenges we have in parenting our children are special as well. Our parenting skills are greatly challenged and put to the test. The most important thing you need to know is that you can do this. Your child can do this." She seemed appeased for a little while. But like I said, like all mothers, I know she will always worry. When we love someone more than life itself, there is no question why we worry the way we do. Eventually, though, I know her worries will be dissolved little by little, one day at a time as she sees progress one step at a time. And she will learn to celebrate all the little things. And she will learn that when it comes to her child, there are no small things, only great possibilities. And her heart too will be skipping with joy and no longer with doubt and fear.

Today after our practice at the Superdome for our performance tomorrow together with the Toddlers and Playgroup Class, we brought our boys back to the center for a little session with Teacher-Mama, yours truly. Morgan was still so hyped-up that I made him do obstacle courses; slide, jump on the trampoline, tunnel crawling and end task shape sorting. He complied readily smiling his toothy grin. Garret on the other hand did some table top shape sorting activity as well. Who would ever think, in a million years that I could handle my two boys with two separate activities one after the other in one session? We have certainly come so far. Another cause for celebration. Oh and when it was time to sort the heart shape object, Garret uttered the word---"heart". And oh, how my heart skipped!!!

My boys, together with the other 11 kids at the Sped Center will be performing a prayer song entitled, " If I were a Butterfly" to open the Toddlers and Playgroup program tomorrow morning. And it will be held at the biggest venue in our city. Garret is the fish and Morgan is the worm. And they'll each be thanking God tomorrow that they can giggle with glee and be squirming like they should be....Here are the lyrics, so you'll know what I'm talking about:


If I were a butterfly,
I'd thank you, Lord, for giving me wings;
And if I were a robin in a tree,
I'd thank you Lord, that I could sing;
And if I were a fish in the sea,
I'd wiggle my tail and I'd giggle with glee;
But I just Thank You Father, for making me - ME!
'Cause you gave me a heart and
You gave me a smile
You gave me Jesus, and
You made me His Child
And I just Thank You, Father
For making me - ME!
If I were an elephant,
I'd thank you, Lord, by raising my trunk;
And if I were a kangaroo,
I'd hop, hop, hop, right up to you;
And if I were an octopus,
I'd thank you, Lord, for my good looks;
But I just Thank You, Father, for making me - ME!
If I were a wiggly worm,
I'd thank you, Lord, that I could squirm;
And if I were a crocodile,
I'd thank you, Lord, for my big smile;
And if I were a fuzzy-wuzzy bear,
I'd thank you, Lord, for my fuzzy-wuzzy hair;
But I just Thank You, Father, for making me - ME!

After all is said and done, after all the processing and denial, acceptance and intervention, we will all realize that we are made the way we are for a beautiful purpose. And to be simply alive is reason enough to be thankful and to celebrate. I think this may be the greatest lesson my kids have taught me, what Autism has taught me.

Today, tomorrow and everyday, I thank and celebrate the Giver of Life for my boys, for my partner, for the life I have been given...with a smile on my face, not unlike the charming kind my little prince gives and just like how my feisty king expresses his joy, skipping--with a skip in my heart!

The Most Beautiful Music

It was lunchtime for my two boys. "Garret, come.", I called to him. He is happily engrossed playing with his bottle of body oil and he does not come to me. I call out to him again this time changing the intonation and pronunciation, "Gar-reet, come". He looks my way and comes to me. I am amused and told him, "Do you like the sound of "Gar-reet" better, kuya?" I get no response of course as he returns to his bottle of oil happily stimming.

"Does he come when called? Does he respond when you call out his name?" These are two of the the first questions a developmental pediatrician or therapist asks when parents have their child evaluated. At this point, the parent senses that sinking feeling at the pit of her stomach and realizes for the first time that come to think of it, her child does not come when called and when is called by his name, does not respond. Automatically she answers, " Well, when he is so focused on his toys or cartoons..." The parent does not bother to finish her sentence because she knows better. Deep down in her gut, she knows that something is wrong, was wrong the first few times she calls out the name of her child and he does not respond. And it is not because he can't hear. The doctors' questions only prove her gut instinct right. There is no going back now. And it is finally time to face the truth.

I know this all too well. From personal experience and from the parents I encounter at the center. I wish I could fully comfort the mothers who come knowing I've been through what they are going through. I wish I could assure them that when the questions come it is where the hardest part is but just like everything else in life, once the hardest part is over-- facing the problem, confronting the truth, then freedom begins, and the load will be not easier but at least less heavier to carry.I hope it gets through them. I hope they are consoled and comforted somewhat. I tell them, the progress of your children won't come overnight. It happens one day at a time. Just as acceptance does. Everything is a process. It requires so much courage to face the truth. And it requires even more audacity to embrace it.

Name calling. Remember how ecstatic you were when your baby first recognized his or her name? You realize, " My child knows his own name. He knows he is Juan, or Pedro. What a beautiful thing!"

By now, you must know that for us autism parents, it's a whole different story. Our kids need to be guided, physically guided and taught to recognize their names. The Sped teachers and therapists at the beginning of the class or therapy sing, "Where is Garret? Where is Morgan?, there you are, there you are...", complete with the hand gesture tapping my child's chest...Eventually the teachers no longer sing but call out simply, where is Garret? Where is Morgan?. And eventually, they tap their chests by themselves signifying that they are present.

I don't remember exactly when Garret started to consistently respond when his name was called, but I remember vividly the first time he clearly acknowledged when I called him. I think it was in the middle of his first year of therapy. I arrived from work and he was sitting on the sofa of our family room watching his favorite cartoons. I entered the house through the kitchen and when I saw a glimpse of him in the family room, I called out, "Hi Garret!". He turned to look at me and didn't break his gaze for several seconds. It was heavenly. At that point, it was my turn to be ecstatic. " Garret finally knows his name! "

The reason why name calling is one of the many first things that is given focus in therapy or in sped class is because when a child is able to turn when called, it means he is ready for the next step, which is focusing on a given task. Of course tasks start simple, simple instructions--"Garret close the door, Garret, pick up the ball." which will then move on to much more complex tasks which the environment, the world inevitably offers and constantly bombards everyday.

No one will ever really know what goes on in the world of autism. The sensory overload that most likely causes them not to respond to their name being called is one of them. Why their brains are wired differently is a mystery. The world outside their safe cocoons is just too much for them to handle. But the hard truth is that the world does not adapt to their eccentricities and needs, it is the other way around. This is where the challenge rises. This is why we have to teach our children the very basic, practical things in life in order for them to survive, starting with responding appropriately when their name is called. To respond to one's own name is elemental to survival. This much we have learned not to take for granted.

Ever since Garret was diagnosed and we went through the whole process of confronting the reality and finally acting on an intervention for him, every single day has been a day of celebration for us. The little achievements our little Prince makes are everything to us. The day he turned to me when I called his name was the beginning of a greater appreciation of the simpler more basic things in life.

It has been said that the most beautiful music to one's ears is the sound of his name.

Garret's name comes from Germanic origins which mean "strength of a spear" or "strong and brave". I don't know if he will ever understand the meaning of his name but clearly, he exudes strength and courage. My little prince is strong and brave every single day as he strives to live in a world that has the least understanding for his own world, as he strives to learn in his own way, as he seeks for his joy in the smallest things despite the chaos his brain creates. Garret may not be able to say to me, "Mama I feel so good when you call my name." But when I call out his name, it is definitely the most beautiful music to my ears. Because I am reminded how strong and brave he is. More importantly, it encourages me how strong and brave I need to be as his mother every single day. What music could be more beautiful than the sound of my child's name resounding strength and courage? And what experience could be more beautiful than my little Prince responding to his beautiful, beautiful name?

My little Prince Garret, how strong and brave and beautiful you are! Today and everyday, I celebrate your strength, courage and beauty. Once again, thank you Autism for bringing out Garret's strength,courage and beauty. Thank you for teaching me how to see it with the clearest heart. And thank you for bringing out the best of me as a mother.

For all the other mothers and fathers out there just starting the process of facing all of Autism, just hang in there. Don't give up. Hang on to hope. Believe. Miracles happen. Miracles are right before your eyes, your children are your miracles. Soon, they will hear the most beautiful music to their ears. And soon you will hear the beautiful music that Autism teaches too.