Raising Sebastien
The picture of Sebastien on the book cover caught my attention. Frankly, I missed her first picture book launch at Central Lending Library in May. I read about it from my staffer's reports but the poignancy and significance of it did not register, amidst all the other book launches, signings, readings that are common sights in the libraries.
I saw this book at Borders, way up on the topmost shelf under New Arrivals. Got my sis to take it down. Flipped through the pages and there I saw the pictures of Sebastien, before and after the onset of autism. What a stark contrast!
It took me a few days to finish the first part of the book, entitled Reflections. It was a series of essays by Sebastien's mom. Kah Ying is a polished writer, able to capture succintly the full gamut of emotions she went through from the moment of revelation at her son's condition to the documentation of her amazing journey thus far.
I celebrate her insights, unconditional love and respect for her son and her perseverance in being her son's voice and advocate. I can appreciate the uncertainties and the constant questioning of her right to speak on behalf of her son, simply because of her role as his sole guardian and biological parent. I applaud her for her courage to stand up for her son and her constant encouragement to other parents to do likewise for their autistic children.
In reading the first part of the book, she successfully took me along her journey and life with an autistic child. Her essay on 10 steps forward and 5 steps backwards was so true - it reminded me so much of what we need to go through with my nephew, Caleb, who was also diagnosed with autistic tendencies from a young age of about 3.
I could quietly celebrate the "wonder moments" that Kah Ying had whenever Sebastien achieved what she called as her "own map of developmental milestones" for her son.
The same goes for Caleb. Just the other day, I was telling my sis of my pleasant surprise at a Mac breakfast we had last weekend. Suddenly, I realized my 11-year old nephew was finally cutting up his own hotcakes, spreading butter on them and cutting up his precious hashbrowns into bite-sized pieces. No longer do we need to suffer glances of amazement from others whenever we did it for him, a strapping boy who is standing at least half a head taller than me.
I started to recall that I have missed many of such wonder moments - he could read the time now and he could cut up a piece of chicken wings or take the entire drumstick with his two hands without the usual squirms and fuss (he hates being dirty) and any help from us adults.
However, just as I was quietly celebrating his achievements, an incident last Sunday brought us back to reality. As we were about to enter the MRT station to head for Vivo City, the boy suddenly bended down in grimace. He needed to do "his business" and it's big-time business from the look of his grimace. A sudden brainwave resulted in us bringing him to the fifth level of JP where there is a handicapped toilet cubicle in the ladies where the mom could attend to him. However, we the typical human beings, forgot entirely about his autistic nature and his perpetual paranoia with unfamiliar toilets and their horrifying flushing system. Hence there were lots of screaming and shouting inside the toilet.
At the end of it, the toilet bowl was rendered out of commission (just when I was confident that this was a thing of the past and that it could only apply to the home toilet), an exhausted mom and a sheepish and extremely embarrassed boy trooped out of the shopping center and into the train. Caleb apologized to the mom on the train for his screams and was sorry to have flooded the toilet bowl.
This was an amazing moment - it suddenly dawned on me that while we were unable to penetrate into his own world, it did not mean that he is incapable of emotions and social responses. He was embarrassed by his own actions and was keen aware of their effect on the mom and the other easily stressed-out aunt. He could respond to social cues, after all! For this, I told my sis - let's head straight for an ice cream - both for the boy and the mom. I bought Caleb his "reward" from Toys r Us. Told him that for having succeeded in doing his business in an unfamiliar environment, despite the ruckus he has created, he deserved a small prize. Of course it turned out that it was no small prize after all, not from my pocket anyway.
But here is where I could readily nod in agreement with Kah Ying's point about the progress and the expected regression that an autistic child will experience.












