For My Morgan

There are days when my mind and my heart gets too...tired (too exhausted to look for stronger term). So I do what I do best. As all autism parents or special needs parents do best, we cope and we become adept at coping. We get used to breaking and we become strong in the broken places. We learn that to be strong is not to carry it all. But to let some things go. So, on days when Morgan goes into one of those seemingly unexplainable tantrums, I just let him be, let him cry it out, and if he allows me to, carry him and cradle him like a newborn child and he cries some more. After 15 minutes, half an hour or almost an hour, he quiets down. And all is well with our world again.

This is for you my Morgan. Mama loves you come peaceful or stormy seas.

There, there now my feisty king,
Mama is here...
I'll hold you tight till the bed bugs won't bite.
I'll hold you close till the thunder in your heart stops.
I'll hold you singing till the clouds of chaos in your mind clears.
I'll hold you, just hold you till the rain in your eyes dries.
I'll hold you till the skies of your thoughts turn from gray to blue.
I'll hold you till the sun in your smile breaks through.
It's okay now, my feisty king,
Mama is here
I'll keep you here in my arms
Until you need me to
Remember,
You are feisty, brave and strong
You are stronger than all the storms.
You are infinite, unconquerable.
Be sad if you need to
Be scared if you have to
Be angry if you are
Spill those tears to
soothe your heart
And I'll catch them
with my own beating heart
It's alright my feisty king
There, there now,
Peace will come
Soon you will find your calm...

Perhaps, during the most unlikeable moments that we have living with autism or with life, all we really need to do is to go through it, acknowledge it, feel every sting of it, weep if we have to, lash out, let it go, stop trying to control what is uncontrollable, sing a little song, hum a little tune and yes, expand our hearts and love a little more.

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!

The Beautifully Bittersweet

Yesterday, I had to play the antagonist again in my Little Prince's world. I had to disturb Garret's place of calm and peace and routine. After his sped class in the afternoon, we went to the big school together with Morgan. Morgan, with his naughty little butt decided to take a nap by 4:30 p.m. When I say "decided" I mean, whining and crying and wanting to be carried, and just one step before full-volume crying occurs. So I had to say to Garret who was already so at peace in the social hall, sitting on the table, taking in all the hustle and bustle of the students playing, etc., "Kuya, we have to go home na. Morgan is sleepy. We need to go home na in a while ha..." As expected an adamant "ah!" met my requesting of him. I won't go into the details of what happened next but let's just say a lot of heads turned and one of his cousins asked very concerned, "Why tita? what happened?"

Ever had one of those moments when you were single and you saw a parent and a child in a mall or grocery store, and the child acted out and you judged immediately why the parent could not discipline her child? Well, this time, I wasn't the observer. I was the unable-to-handle-her-child parent. But this time, I knew Garret was not acting out. It was just a case of "It had to be done" kind of thing. I had to force him out of his peace bubble because Morgan wanted to sleep already. And lately, his little brother's sleeping pattern has gone berserk that I don't know what else to do to make him sleep well at night. Garret yelled and slapped my arm. Morgan scared of his kuya's yell, cried all the more. All that went through my head was " Okay, don't panic. Just breathe.Don't mind the stares of the people around you. Focus, keep calm. Hold it together." Garret slapped me one more time after which I held his shoulders and emphatically said, "GARRET!". He fell silent and whined. I almost forgot, autism does that to my boys.

Of course Garret couldn't understand why we had to go home so early when in fact he was so used to going home by the time all the students in the big school went home. He couldn't understand why he had to go home when the final bell did not ring yet. He couldn't understand why Morgan had to cry, why Morgan had to sleep in the middle of his "big school time". Morgan, on the other hand could no less understand why his body just wouldn't sleep during his usual 1 pm nap time. He couldn't understand why even at 12 midnight, he still couldn't sleep. And he couldn't understand why no amount of bouncing on the vestibular ball and rocking on the rocking chair with mama could not make him go to sleep.

All the way home, Garret sobbed. I could just see and feel his disappointment and it tore my heart apart. When we arrived home I held him in my arms and we stayed in the rocking chair as I tried to soothe him, telling him, "It's okay Garret...I'm sorry. I'm sorry." It took about half an hour before he finally calmed down and fell asleep. When I transferred him to his bed, he woke up already calm and seemingly comforted. After another half hour I prepared his dinner and I kept telling him, "Sorry Garret ha..." He just sat down on his chair and softly echoed my words in a sing-song voice, "sorry, sorry, sorry, sorry, sorry." Yes, 5 times. I didn't know what to make of it. I just felt relieved somewhat. Maybe it was his way of saying, "it's alright, mama."? I want to believe that it is. He may not understand all the reasons why we had to go home earlier than his usual routine, but I want to believe he understands me saying sorry I had to do that and he had to be frustrated and disappointed.

And what of Morgan? Of course, sound asleep till 7 p.m at which time I had to force him to wake up, me thinking, so he wouldn't stay up too late later that night. And of course, when we put the lights out at around 11 p.m. and I drifted of to the REM stage of sleep, he began whining again and the whining turned to crying. I flipped the lights on and put on Barney. He then got his wooden shapes puzzle and got all the shapes and put them back again, over and over, which amused me somewhat because I thought, "well, at least something productive can come out of this episode. He'll be able to master his shape sorting skills." On the other hand it was as if he was just doing this to tire his eyes out. Again, I won't go into the other details of what transpired next. Suffice it to say that he finally climbed into bed on his own accord at 2:30 a.m. and me finally succumbing to sleep at 3 a.m. I wanted to berate something, someone, anyone, anybody so badly, autism, specifically, the universe next with my adamant opposition to this whole sleep deprivation that autism does to my little boy. But I held back, thought twice. Nothing good really could be gotten out of it. Just breathe. Don't panic, I told myself. Then I remembered something a friend wrote a year ago in her blog. I remembered her strength and resilience and her resolve to face the sleep monster of autism head on one sleepless night. And I thought to myself, " If she can do it, then I can too." I drifted off to sleep, albeit restless, but sleep nonetheless.

So this morning, as you can imagine, light-headed and disoriented, I woke up at 8 a.m. already planning to spend the day in my pj's. At 9:30, king Morgan woke up went out of the room and he approached me wanting to be cuddled. I told him, "Kiss mama first." I puckered my lips and he followed suit giving me the sweetest kiss ever and only after looking at me in the eyes and smiling his toothy grin. Of course the lightheaded sensation wore off almost immediately. And the disorientation was replaced by something clear and apparent as the morning sun---true love, my friend, Kary told me.

This is what will get me through times like this. This will make me defeat this sleep monster and frustration monster of autism. My love for my boys. I will carry everything with fortitude. I will be strong for my boys. I will not complain. I will think positive thoughts. I will not care about what other people will think of my parenting skills. I will parent my boys as I see fit. I will give them all the love and support they need. I will keep calm. I will not panic. I will breathe deeply and I will carry on. And if my little king needs me to stay awake with him till 3 a.m. , then I will and tell autism to its face, "Show me what you got 'coz I'm ready for you."

These are just a few of the bitter sweet moments in our day-to-day life, living with autism. Thriving with it, actually. I say thriving because every dark moment has been an opportunity for discovery and learning, about myself as a mother, as a partner, as a woman,and simply as a human being. Every monster we face, we have overturned it to become a source of strength and understanding and knowledge and empathy for other parents who are going through similar difficulties. Every experience that drive us to the brink of our patience and ability to keep it together make me solidify the belief to be more accepting and nonjudgmental of other parents, other people for that matter because we each are facing our own battles.

Frustration, sleep deprivation, bitter moments they are, but beautiful, what with the lessons they bring and the strength and character they draw from the very core of my being.

For all autism parents out there, I hope you too shall allow yourselves to be strengthened and not defeated by whatever monsters will come out to face you. I hope you shall choose to be positive. I pray you will have the grace to keep it together, not panic and be calm. I pray that you will in turn have more empathy not just for other people but for yourselves as well. You are doing your best. And your best is enough for your children, for your family.You are strong and even if you feel as if you have lost your balance and center, you are still okay. And you will carry on.

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.