Wednesday, November 28, 2012

One Day or Another

According to the Mayan Calendar, the world will end in about 3 weeks' time. If this is so, what are you doing to prepare for it, and do you have anything you wish you'd done differently?

Big A and I have semi-serious discussions about this. He's convinced we can survive an apocalypse, and in our emergency bag, he made sure we have fishing hooks and twine. Never mind that there might not be any fish to catch if the world ends in fire, or ice.

I, on the other hand, have been trying to read as many books as I can. Let the world not end without my having read Saul Bellow! I set an impossible book goal for myself in 2012 - 250 books. Right now, I'm just a little off track, with book 227 finished. Picture books or those with less than 25 pages of text aren't counted, so I can't really cheat and go through Little A's library in a day to make up my numbers.

At any rate, I've read some amazing, and some terrible, books this year. Notables include Cormac McCarthy's The Road, which I must keep in the emergency bag for post-apocalyptic reading, should we in fact survive, and Chris Cleave's fasntastic third book, Gold. Very appropriate, since it deals with British athletes and touches on the London 2012 Olympics.

Back to the world ending though, I know I'd love it if my whole family went together. I can't imagine a world where Little A would have to survive on his own, or without one of us. And I don't want to. Maybe this is terribly selfish, but I'm sure it's a dilemma all parents consider, more so when their children have special needs.

We're still continuing on, of course, school applications for next year being filled up, the work holiday rush in full swing, and Christmas gifts being purchased, wrapped and delivered. Still, I keep on thinking - where will we be in a few weeks' time? I guess we'll soon find out.


Thursday, November 15, 2012

One, Two, Three

Recently, I spoke to a school directress about places for Little A in their next year's programme. She asked, when I explained he was on the Autism Spectrum, whether this diagnosis had been given by a developmental pediatrician or a neuropsychologist. I replied that it was the former, as I'd not even been referred to any of the latter. It turns out there are only two of these in the Philippines, and I'd already inquired at one of them three years ago. She has a two year wait list, or so, so we'd just gone with the developmental pediatrician, who was able to give us an appointment within two months.

Apparently, neuropsychologists perform an entirely different set of tests on a child and give therefore a more accurate diagnosis. I never knew this, as even the request for a referral to a dev ped was on my initiative, and not something that was suggested by our regular pediatrician, as it maybe should have been, much sooner.

I would still like to have Little A's diagnosis verified, and am now considering going back on that wait list. Lately though, he has made good improvements in his social interaction skills, which is a very enouraging sign for his further progress.

There is a tripod that puts a child on the spectrum, and initially Little A fit all the categories. First is communication, or, more accurately, lack thereof. A child who doesn't speak by age 2 is a red flag. While Little A still doesn't speak functionally, he does now communicate fairly effectively with gestures, word cards or letter pieces, and a keyboard. He still lags behind in storytelling, but that is hopefully the next step. He can show us how he feels and what he wants, which is considered the most important thing.

The second "leg" is social interaction. Autistic people are most commonly described to be "in a world of their own," and have to be taught social niceties, including how to play appropriately with others.  Little A didn't properly interact with other kids for a long time, but would parallel play, tolerate, and acknowledge their presence. Lately though, he's been initiating contact. He would see kids outside playing with balls and run out to join them, happily watching and asking to take a turn. When they would tell him to duck down out of the way, down he would go instantly, sitting on the floor, which wasn't exactly right, but showed he was listening and reacting to instruction. He has been practicing turn-taking as well.

What hinders him though from engaging fully with his peers is the third part of the tripod - behaviour. Some autistic people take comfort in flapping their fingers, others tap or bounce. This is a way to help them process their surroundings and cope with the world, not much different from when a typical child lugs around a security object or sucks a thumb. But since they are different, they tend to be more extreme, more rigid about these behaviours, and so the real challenge is getting rid of them while the child still manages to process all the surrounding stimuli.

In Little A's case it is clapping. He's been working so hard to manage this, but still tries to control it, running up to someone who claps and putting their hands together "his" way - silently, fingertips of one hand to palm of the other. If the applause is constant or unexpected, as when a musical number ends or a sports team scores and too many people clap than he can "control", he runs away, upset, and screams and cries for a while.

Sometimes it is also counting that triggers outbursts. Right now there are certain numbers he likes, and if he hears someone calling out another number, he wants them to say the number he likes, and points to it or spells it out, waiting patiently until the person obliges or getting angry if they don't. This requires a fair amount of tolerance on both sides.

We are working with his team to get him used to the fact that he will not be able to control his surroundings entirely. It's hard work, but he's working harder than any of us, I think. We're thankful for small steps forward, despite the steps back. Little by little, thinking he can, chugging up the hill, will get him there.

Sunday, November 4, 2012

Tricks and Treats

Another Halloween gone, and this was the first one in five years without a children's concert organized by my mum and some friends for the Metro Manila Chamber Orchestra. Little A has been to them every year since he was one, loving the pre-show musical instrument "petting zoo" but never sitting through the entire musical section in the theatre. No matter, as this Halloween he experienced proper trick or treating for the first time.

As we live in a building and not a house, there is a Halloween party for children where they are given bags of sweets and other goodies. The residents are also encouraged to join in, so kids can knock on certain, pre-arranged, doors and get some more candy. Fun enough, but, for someone who grew up experiencing the real thing, rather lacking.

The village where I spent most of my life has long been known for its Halloween festivities. Houses go all out in terms of decor, with some setting up entire scenes for photo backgrounds, and treats can range from Barbie dolls to scoops of ice cream for every lucky person who walks by. Children and young adults go door to door, sometimes getting from one street to another in their parents' cars, or using the more popular village transport of the family golf cart, for those lucky enough to own one.

Once one has outgrown the fun of gathering treats, handing them out is the next best thing. As college students we all stayed home to distribute candy to the youngsters, and then met up later that night for our own parties. Oh, the memories!

Ever since I moved away from home nearly a decade ago, I've avoided my parents' village like the plague on October 31st, because the traffic getting in and out of the gates on that day (and night) is simply horrific, with people coming from far and wide to get the full Halloween experience. This year though, Little A had speech therapy.

Since April, he's been having PROMPT therapy in addition to standard speech sessions. Since PROMPT practicioners are even harder to come by than regular speech pathologists, it is extremely difficult to find one near you. The nearest one we've found is from so far south that she meets us in the middle - at my parents' house two afternoons a week.

As there was no school, we moved his session earlier on Halloween Day. Thank goodness for that, as even at lunchtime the queues of cars entering the village gates were already long. After his session, I took him to my best friend's house, where he finally got to experience a "real" Trick or Treat. He played a little with the other kids, and then we went by a few houses on the way back home.

Little A loved seeing the other children in their costumes and dutifully held out his plastic pumpkin when prompted to receive his sweets. Never mind that he doesn't eat them, all the fun is in walking the streets, and fun he had. Perhaps we'll do it again next year.