In the Right Direction

This morning as Garret was lining up with his classmates outside the classroom, getting ready for their 10 am class, one of his classmates remarked to him, "Hoy, dako!" I was nearby when I heard it and my chest immediately tightened. I inhaled deeply before telling the kid as calmly as I could, "His name is not 'Dako'. His name is Garret."

"Dako" in our vernacular means big.

Garret attends Kinder 1 classes. He is 9 years old. His classmates are 5-6 year-olds. Obviously he is physically taller and bigger than his classmates. But this is where his level of cognition and social skills roughly are. So we decided to place him in the level where he is most adaptive, and can relatively cope with the lessons and simply put, happy.

At this age it might be safe to say that these kids have no concept of discrimination yet. Yet. This is why at this very age, it is important to veer their perception of "differences" to the right direction before the discrimination escalates into plain bullying.

The kid's remark, "Dako" to my son clearly proves how he acknowledged that Garret was different, being bigger than the rest of them. I wonder with this acknowledgement, how much of it he understands or interprets as being, good, not good, acceptable, okay, not okay. Of course, it is not his fault if he perceives the being "big" as something not good because what he sees most of the time may be according to society's so-called "norm". The norm here being, his classmates in K1 should be of the same height or physical build. And who knows what else he considers the "norm" as he is taught at home and in other places.  I do hope though that he perceives "dako" as interesting, to begin with.

My mama bear instinct shot up upon hearing that kid's remark. Even though I was aware at the time that it may be my own interpretation of how the kid perceived his own words, I still felt compelled to defend my son and in the process educate his classmate.

What happened today may be my cue that it is the right time to talk to the entire class about their "big" classmate. If I'm lucky enough, their young minds may still be in the level where they indeed see something different as interesting. Where they see "not like them" as something to be curious and to learn more about.

Having said all that, what then could be the right direction where we could steer the ships of these youngsters' perception? Or for the rest of the population who are not young anymore but are in need of a change in perception?

Perhaps we could start with acknowledging the different. Acknowledging means not ignoring. How many of us have been taught that it's rude to stare at people? What happens instead of staring? We ignore people, don't look at them in the eye especially the ones who are "different". It's like the elephant in the room. Everybody knows it's there but nobody wants to acknowledge it. Now, what does that achieve? Nothing really, except awkwardness and discomfort. As an autism parent, I have had my fare share of stares in public places whenever I bring my boys to the grocery. What do I do? I look at them in the eye and smile at them. They have no choice but to smile back. Whether it was out of embarrassment that I caught them staring or whether they understood our predicament, I don't know. All I know is a smile is one way of breaking the "rudeness". It gives us autism parents a feeling of communal understanding, an assurance that even if our kids are having a meltdown at the mall, nobody is judging us or our kids. And especially during those times where we really don't have the strength anymore to smile at anybody, when a stranger shows us a kind, understanding face, it takes a fraction of a load off our shoulders. On this note, however let me say that there is a huge difference between acknowledgement and judgment. I think this is self-explanatory.

After acknowledging what is different then maybe we could move on to knowing more about the different.

Ignorance is not always bliss. It hurts our kids. It hurts the autism parents, the family members of the kid with autism. What is strange scares us. What is unknown brings anxiety. And the only way to eradicate fear and ignorance is to confront it. Google it, Autism, Down Syndrome, Global Developmental Delay, Cerebral Palsy, Mental Delay and all else. If you don't have internet connection, which I highly doubt, ask a pediatrician. Or ask us, ask the parents. Don't worry we won't bite. We would appreciate it even if you ask about our kids. Kindly, of course. But we will bite those who make snide, purposeful, ignorant remarks about our kids and our lives.

With knowledge comes a shift in paradigm. In perception. In beliefs. Which we hope will open the way to acceptance. If not acceptance, then tolerance to begin with. The shift in paradigm that we hope people will have when they know more about what our kids' disabilities are is the realization that all human beings are indeed created different. And that different is okay. Different is not something to be feared. Different is not something to be chiseled into the "norm". Different is the source where we voraciously learn from each other.

The ultimate direction that we hope people can arrive at, that kids can arrive at is celebration. A Celebration of the Different. To not only acknowledge, know and accept our children. But more importantly to marvel at their individual differences. Their own individual differences. That even we members of the neurotypical / normal race are remarkably different. To give value to all the quirks and various physical, cognitive and social facets of our children. Verbal or non-verbal. Restless or behaved. Short in height or tall. Small or Big.

Autism parents, special needs parents celebrate every milestone. There are no little achievements. Little is not in our vocabulary. Because we know the value of every single thing our children work hard for and accomplish every single day. Therefore we shout to the world their successes. We pause in our tracks and thank the heavens for the very persons our children are. We celebrate them. Every part of who they are.

What if parents of normal kids out there realize the value of even the minutest detail of their own children's efforts for striving and not just the first honor medals and valedictorian certificates? What if parents of neurotypical kids celebrate the kindness of their children and not just the 100 of every subject in their report cards? What if they celebrate their children who don't fit into the "old school" system, who learn through the arts and sports? What if parents celebrate how their children are able to learn life skills as simple as doing house chores willfully, cleaning up after their own messes, running errands efficiently not just how they read a thousand pages of Algebra and Calculus books? When that happens, then that will be the real celebration. That will be the real essence of the Celebration of the Different. 

"His name is not 'Dako'. His name is Garret." Garret's classmate looked at me silently seemingly afraid that I would reprimand him. I looked at his i.d. and said, "J, your classmate's name is Garret. Okay?" He still kept quiet. I offered him my palm for a high-five and smiled at him. He high-fived me, a smile slowly creeping into his face.

Come Monday next week, I'll be speaking to Garret's class and try the best way I can to steer them in the right direction of how they view the "different". How they see my big son. How they perceive Garret and his being different. Hopefully, they'll learn to accept that Big can be okay. That Big can be in fact, beautiful. And hopefully they will grow up and learn to celebrate the big, the different. 

Finding That Balance

June 11, 2014

I came home to this-- Garret writing all on his own. No prompts. All him.

Where was I when all of this was happening? I was having a conference with a parent whose child is hyperactive and has language delays, whose nutrition includes consuming three 250 ml chocolate drinks a day and whose spare time is spent on playing games on the tablet four hours a day. I was in an an hour-long conference where I had to answer the question, "Why do chocolate drinks cause kids to be hyperactive?"(I know, right?)  Where I had to explain to the parent why spending hours and hours on the tablet is not good at all. I was in a conference that left me drained because I wondered how many more parents out there are feeding their neuro-typical, normal, able-bodied and able-minded children sugar and junk and letting them spend hours on the tablet instead of engaging them in meaningful conversations or exercising with them or letting them pursue potentials in the arts, music or sports just waiting to be tapped because the parents are too tired from work at the end of the day?

No judgment here. After all, parents are not super heroes. Although they try to be. Me included.

I am by no means, an expert on parenting. But I am a parent. I'm a mother of two boys with autism; with impaired language, social skills and sensory dysfunctions. I know all too well the effect of sugar and junk food and all sorts of crap on my two boys. I know all too well the enormously negative effect of letting my boys play the iPad for hours on end. Imagine toilet-training turned upside down. And that's just my kid. The effect is immediate. Unlike maybe normal kids. So perhaps this is the reason why parents of normal kids do not see or refuse to see the point of all this. Because the effect of junk food and sugar and iPad addiction, isn't immediate for their children. Think later. Think long-term.

Parents do get tired at the end of the day. After all, we all have to work to keep our kids in school, in therapy programs, in special education programs. But in trying to provide for our children, we sometimes forget the most important part of this equation-- our children. So how does a parent find that extra ounce of strength and stamina to engage their children instead of leaving them to the tempting arms of the iPad? How does a parent choose to discipline their children by providing for them food choices that are healthy? 

The key perhaps is in trying to find the right balance. Still, easier said than done. But what if we put the same amount of effort in trying to put our children in the best schools, having the best things in life, struggle-free even, into finding that balance?

We'll never know if we don't try.

So when I came home after the conference, Andro narrated to me what the "bugoy boys" were up to while Mama was at work. Garret wrote on his writing book all by himself, got a sheet of wet wipes to wipe off some of the writings and continued to finish the task at hand, which if I may emphasize again, was of his own choosing. Unprompted. The Morgan, as he was about to tear his older brother's writing book, because that's what he is "into" right now, (I know, I have to do something to replace this with something more productive),  was gently told by his papa, "No, Morgan." To which he immediately stopped what he was about to do, look at his papa and smiled at him. No words but an immediate response. And a clear acknowledgement and show of compliance.

In an alternate universe, in a non-autism universe, I often wondered and asked myself whether I could have been as "hands-on" as I am right now. I wondered whether I could have fed my children unhealthy foods relying on the fact that my kids are "okay". I wondered whether I could have let my kids spend time with themselves and the iPad, not exerting effort to really engage them in conversations or activities that could tap their potential. But we are not in an alternate universe. We are in this present universe. What we have is right here, right now. But if we were, then I wish to God I would still be the same kind of parent I am striving to be right now, perhaps even better-- more grateful, more conscious and aware of the needs of my boys. Better. To be better each day than yesterday.

Garret is 9 years old. Morgan is 6. Garret loves music. Morgan loves running. And even as it may seem hard for Garret to follow the music teacher, he is making progress slowly but surely. As for Morgan, our daily afternoon walks and run may well be a starting point for him to develop his abilities. Think track and field. Our road will not at all be straight. It will full of jagged paths and blind corners. But I know in my heart it will be worth it.

For now, we continue to celebrate the miracles that come to us every single day. Garret has come so far. Morgan has come so far. We all have come so far. To have reached this point entailed the help of numerous teachers and therapists. To have come this far, we had to strip away all our bravado, our sense of control, old beliefs and expectations. We had to open our minds and hearts to new and often difficult things while still holding on to what is precious. Love with Discipline. Patience with Urgency. Perseverance with Letting Go. Faith with Explicit Action. Courage with Discernment. For the miracles to arrive, we had to realize that we had to find that balance. Every single day.

For those of you who have chosen to read this post until this point, thanks for taking the time to. And I hope you find your balance too whether you have kids or not. Because in the end, trust me. It will all be worth it.

Angels

Sunsets,

they say 

are when

and where

angels converge.