A family blog by PV, Monette, and Bryan Beley on food, travel, entertainment, and family life. Come to think of it, just about anything that keeps us together, makes us different from each other, and makes us love one another. After all, we are a family.
Monday, August 30, 2010
Wrapped Around Her Little Paw
Monday, August 23, 2010
Monday's Child
Birth Days
Monday's Child is fair of face
Tuesday's Child is full of grace
Wednesday's Child is full of woe
Thursday's Child has far to go
Friday's Child is loving and giving
Saturday's Child works hard for a living
But the Child that is born on the Sabbath Day
Is witty and wise and good and gay!
“Mommy, Mommy, can we go back to Hong Kong Disneyland?”
My second child Niccolo is aglow with excitement. Ever since we brought him to neighboring Hong Kong’s Disneyland, it has become his regular mantra to ask if we’ll be returning.
“Of course we can,” I say. “What do you want to do when we get there?”
“I want to see Mickey Mouse and Donald and Goofy,” he gaily informs me.
Born on a Monday, Niccolo is indeed fair of face. But nineteen years ago, he was diagnosed with autism, a life-long disorder that affects his communication, adaptation and social skills. A person with autism has been likened to an alien from another planet crash-landing on Earth. Most cannot cope with their surroundings. Many retreat into a world of their own where they feel safe and they know the rules of existence because it is they who made them.
No parent is ever prepared to receive such news. PV and I certainly were not. But after crying over it, we set ourselves to doing what we could to help our son. Considering the severity of Niccolo’s problems and the acute lack of special schools and services geared specifically towards children with autism in this country, we had our work cut out for us.
When he was first diagnosed, Niccolo didn’t speak, was extremely picky about his food, hated loud sounds of any kind, was frightened by certain colors, and couldn’t stand certain sensations on his skin. For instance the water from the shower would make him scream in pain and fear. He would refuse some foods simply because their colors or textures offended him yet obsessively ate certain dishes almost to the exclusion of others. Because he could not verbally tell us if there was something wrong, we couldn’t always understand him and that would in turn lead to tantrums galore. He also could not endure being among a lot of people.
Imagine what bringing him to a birthday party or family reunion was like. We would often retreat with him to one corner of the room lest the noises, colors and guests agitated him.
Mercifully, we were able to teach him certain basic functions much sooner than we expected. Such as toilet training and bathing and dressing himself. And eating without scattering half his food on the floor around him. And managing to cope with crowds. And becoming desensitized to the sounds, colors and sensations that used to traumatize him.
Several years and various doctors and special education schools, teachers and therapists later, he is a different child from the one who turned our world upside-down-side. And I don’t mean because he’s older.
He still cannot relate normally to other people—he has neither the communication nor social skills to do so. He continues to bear some of the quirky mannerisms that mark him as a person with autism. He cannot be mainstreamed—that is, go to a regular school—but must be tutored on an individual basis.
But on the other hand, he is an openly affectionate boy who enjoys being loved in turn. This is a blessing to us for many of his peers cannot stand to be embraced even by their own parents. He is fond of babies and small children and is very protective of Jonathan and their younger cousins. He can tell us what he needs or wants and can even converse with us albeit in his own limited way. He’s a whiz at many computer games, particularly those that demand good memory, quick reflexes and precise use of the mouse.
We can bring him just about anywhere—church, the movies, parties, out-of-town vacations and even trips abroad. We once brought him to Hong Kong in August, the height of the tourist influx from the mainland, and he endured hour-long waits in lines with minimal fuss. And he always sticks to us when we are in an unfamiliar place, which is especially reassuring when one reads horror stories about other children with autism wandering off seldom to be seen again.
What else? Oh yes, he now eats anything and everything. Not bad for a child who was once limited to fried chicken, spaghetti, chocolate and sinigang soup.
Big deal, some people might think. But to those who have watched him grow and develop, each forward step he takes is reason for rejoicing. And when he makes a hop—children with autism seldom improve by leaps and bounds—we deem it a miracle of the highest order.
He’ll probably need our care and support for the rest of his life. We’ve accepted that it is unlikely he’ll ever be able to live independently. Bryan and Jonathan have already promised to take care of him when the responsibility falls to them.
On the other hand, the chances of his childlike innocence completely vanishing are minimal. He may learn how to curse by copying someone else but he won’t comprehend the meaning or malice behind it. Bryan likes to say that Niccolo is already assured of a place in Heaven because he knows no evil.
“Mommy, can we go back to Hong Kong Disneyland?” he asks on yet another day.
Niccolo will not tire of repeating this question until we actually take him back there.
“How about if we go to Disney World in the States?” I suggest.
“Yeah!” he says elatedly.
“And what will you do there?”
“I want to see Woody and Buzz Lightyear! I want to ride the Pirates of the Carribean!”
Would we exchange him for a ‘normal’ child, well-meaning people sometimes ask.
We look at Niccolo. He is aglow with excitement and the sweetest smile creases his mouth. No, we always answer.
He’s our son and we love him. And what's more, he loves us. In a world so woefully short of love, that is the most precious gift of all.
Thursday, August 19, 2010
It's Not the Scenery, It's the Attitude by Monette
Thursday, August 5, 2010
Breathing A Sigh of Relief by Bryan
If I get to the personality part, you'll see that sometimes you'll wake up in the morning realizing that the hardest people to live with could be your own family! Yet, here I am loving them. Despite our differences, we somehow complement each other. Some of us are more logical than the other which counteracts the emotional members of the family. Or one member being bolder while the other more cautious prevents either a sorry retreat or a hasty plunge into risk.
Of course, people tend to think more about the differences than the similarities. I find it funny how we all oogle the littlest bubu or how we all seem to sing songs by the Beatles in the car. We all love good food. We love being around each other (for the most part). *Sigh* Guess I'm lucky. We all are in this little family. Maybe tomorrow, I might piss off someone at home or maybe I may get a big hug from mom (hint hint). Doesn't matter what happens. My family is my family. For the good times and the bad, I can't be happier than being part of it.