And Now We Return to Regular Programming

2013 starts in a few hours. The world did not end, with a bang or a whimper, on 21st Dec. Whether that's a good or a bad thing remains to be seen.

This year, all things considered, was a good one of many firsts. Little A started PROMPT speech therapy, changed ABA therapists, and has improved hugely in behavioural areas.

Big A and I recently spent two nights together, apart from our son, for the first time since he was born. We went on a crazy shopping holiday in Hong Kong to treat ourselves after all the hard work put into 2012. We also saw a musical together for the first time ever last October.

Work-wise, this Christmas was the busiest ever for the little shop, forcing me to fall off the grid somewhat in the month of December. I barely ate or slept, and did little apart from balance inventory, type up sales reports, and make change. The shopping vacation was a much needed respite from the other side of the retail experience.

Big A, too, was incredibly busy, juggling two jobs this year and not taking a single day off work until Dec 28th. Should next year prove to be just as successful, we will hopefully go on a nice family holiday abroad.

Wishing everyone a glorious 2013!

Frosty the Snowman

October End-of-Term show - tears

December show

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Following Teacher's action instructions

Little A was a bus driver for his Christmas school show. This year, instead of a Nativity play, they acted out the song "Frosty the Snowman," and did a little dance number in the middle.

Unlike the end-of-term show in October, when he cried madly after the dance number due to the applause, this time he was more aware that there would be clapping, so he steeled himself for the inevitable. I'd been working with him on clapping Mummy's hands instead of freaking out, and that had been working, as lately he'd been less prone to flying off the handle when he heard random clapping while we were out and about.

Apart from singing the Christmas carol daily in the days leading up to the show, I found a board book with illustrations to the song lyrics, and the Au Pair found a video on youTube for Little A to watch repeatedly.

Come showtime, he stood on the stage for the entire length of the "play," and swayed in place during the dance, even if he didn't do all the steps. We were all very proud.

Since he'd been sick with a fever and bad cough at the end of November, he's been amazingly behaved. All of his therapists have remarked on the change, and I noticed it particularly in the ten days the Au Pair was away. We're all crossing our fingers that this positive development will also be a permanent one.

What still is to come though, is speech. One school has already told us they have never accepted a non-verbal child, and another has turned him down partly on this basis. There are two more schools I will apply him to come January, but my main wish for the coming year is that he finds a place at a very supportive school. Let's hope those prayers get answered this year.

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.

 

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.

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.

Mountain View

Nearly every year for the past decade, sometimes twice a year, Big A and I spend a few days in the mountains. Big A proposed up there, in fact, and we thought about having our wedding there too, only the trip up would have entailed an entire weekend away, at least, for our guests.

Since Little A was one, he's been coming along. We make these family trips as often as work permits, and this year we managed to sneak away for a long weekend.

This is the second time we've taken Little A's Au Pair with us, as my dad's membership to the mountaintop's country club comes with a number of free room nights that must be consumed every year, and going up in a group is the best way to make use of them if you can't make more frequent visits.

The weather was perfect, the fresh vegetables were plentiful, and Little A enjoyed all the activities that Big A and I, and every other child of our generation, did at his age - biking in the park (Au Pair did the pedaling, Little A rode alongside), boating in the park's man-made lake, tramping around among pine trees, and looking at the horses. This is one of the few places in the country where horses can bear the weather comfortably, and riding is one of the most common tourist activities.

Little A loves watching animals, but is very wary of being too near large ones. He rode a Shetland pony once, and fell off it when it suddenly shied, and since then has been afraid to get back in the saddle. Big A wants to cure him of this fear, and helped him at least get close enough to touch. That was enough for now, and hopefully as he comes back again and again he gets a little braver each time, until he eventually has a ride.

Dog Days

Little A's class studied dogs for the past month or so. The culminating activity for this module was a field trip to a dog training and grooming centre.


For the first time in ages, I was able to see my son in his "school" setting. To my surprise and delight, he sat quietly in his seat nearly the entire time that the dog demonstration was held. He did not volunteer to interact or feed the dogs the way his other classmates did, but when students were set in pairs so the dog could jump over their legs, he indiated that he wanted to be a part of this activity.

Sadly, since there are an odd number of students in his class, Little A was left without a partner. He was assigned to give the dog his treat after it had jumped over all the pairs of student legs - a task he didn't particularly want, since he has been told by me that he shouldn't put his hand near a dog's mouth. I felt very strongly at this instance that my son was being made to stand out because he was different, and I know Little A felt this way, too.

One of his therapists told me that a mother of her other students used to cry, after sitting with the other mothers in her child's class and listening to them, every day, making play dates for their children. Her special needs child was never once invited, and she thought it incredibly insensitive of the other mothers to continually set future play dates right in front of her without even acknowledging that her child was in the same class as theirs. Too polite to speak up, she would keep a stiff upper lip until she was with other mothers of children like hers, and then break down.

I felt for her, because I, too, have heard not only the mothers or nannies, but the children inviting each other home every day after class is dismissed. No one has ever invited Little A. I try to console myself by thinking he's so busy anyway that he wouldn't have time to attend the play dates, but the truth is, I know he feels so different and left out, and my heart bleeds for him.

Lately, on his iPad, he types phrases I've never encountered in my time with him: Super Mario, Little Ponoe (for Little Pony). When I asked his teachers, they admitted that his classmates talk about these characters during free play time. Little A often sits near them in parallel play, and while he may not be able to participate in the conversations, he very obviously pays attention to them.

Only one mother so far in Little A's class has ever expressed some sort of awareness about these differences in the children. We were waiting for the class to be dismissed, and the invitable "where-are-you-applying-your-son/daughter-for-big-school" conversation came up. This mum said top of her list was a school nearby that mainstreams special needs children with regular ones, and this was precisely the reason she wanted her neurotypical daughter to attend this school, so she could be more aware of other kids and their differences. My heart warmed when I heard this, and I wanted to hug this woman I barely knew, despite the fact that neither she nor her daughter have ever asked us for a play date.

I am grateful for parents and children who recognize my son's differences and diffiulties and not only accept them but go out of their way to make things comfortable for him. There are far too few people who do. Reccently, Little A did get to attend a party play date for a friend's daughter. He didn't want to join the mayhem of the soft play centre, but he enjoyed the other activities, and gamely posed with the girls for photos at cake blowing time. Moments like those are all we need. Add up enough of them, and Little A no longer feels lonely and left out.