Merry Christmas

We finally put up our Christmas tree last weekend.

He was being very helpful because for the first time, he managed to hang the ornaments...a lot of the ornaments. To add to the Christmas spirit, we had Christmas music on in the background as we decorated the tree. Even the weather added to the atmosphere with the rains making it very cool.

He was so happy when it was completed that when I switched on the tree's lights, he started dancing!

Then, he proceeded to take his music book and played the piano!

Wishing everyone, a very blessed Christmas and a Happy New Year!

Self Assembly Required

This was a birthday gift given at his party. Didn't expect him to be able to twist the screw in or to use the screwdriver! Very happy.

His 7th year party

Tomorrow, my son will celebrate his 7th birthday with a party with his classmates. It'll be his first ever birthday party.

Seven years old. What a journey. Such achievements he's made. His Year 2 class teacher says he's doing fine in school. He is a lot more focused, completes his work, requires very little supervision. Those comments are a stark contrast to how he was in Year 1 just a few months ago.

There are still many challenges for him to overcome, in various areas. Many a times, I still feel overwhelmed by it all, so burnt out, so helpless.

But there are also many moments were I celebrate his little achievements and tell him just how incredibly proud I am of him for working hard, never giving up and of how far he has come.

I pray for his continued progress, for support, for great friends and teachers, for great health, for resilience, for happiness.

Year 2 is round the corner

He absolutely loves his new school bag - a Disney Pixar Cars, Lightning McQueen bag!

He starts Year 2 on Monday and I'm the one who's nervous and worried.

Although he has come far, there are still many challenges for him to overcome in the year ahead. One of the biggest being, his ability to focus, follow instructions, complete his desk work independently and on time. The other challenges are of course related to his neuromuscular condition.

He has started on different therapies this year as and when I come to know of his need for it and the availability of it.

Vision therapy has definitely helped him but there is still so so far to go in that area and I worry that his progress might not be fast enough now that he's in Year 2 where there is a greater demand on his visual skills - reading smaller font text, more text on a page, more writing etc.

The school does not have a teacher's assistant for each class, beyond Year 2. So this is a crucial year for him to progress in being able to learn independently.

Sure, I can have him practice his buttoning, buckling, changing clothes, fitting books into his folder, double clicking a mouse etc, at home. But as always, there isn't enough time in a day to fit everything I'd like him to do. I've already cut down on the academic side where I teach him maths at home and he seldom reads by himself nowadays (I read to him in order to save time, except when he's sent home a book to read as homework). Then there's the physical therapy sessions which he seriously still needs especially when he's physically growing so fast. Vision therapy homework is meant to take only 20 min in theory (5min each for 4 exercises), but the reality is that after factoring in his whining about being tired from school (which is valid), and giving him short breaks in between each exercise, it takes an hour to complete. Thankfully in Year 1, there was very little homework - spelling, ejaan, reading.

I'm hoping that I am able to strike that elusive balance to get most things done without frustrating him and tiring him out too much. I'm hoping that he will make great progress in being able to learn independently this academic year. I'm hoping he will continue to be blessed with a great teacher and wonderful friends. I'm hoping that the current therapies and future ones (Samonas!) will create breakthroughs. I'm hoping that he continues to build his self confidence.

As for the month long "year end" school holiday which ends on Sunday, he has had a great time, with playdates, lots of shopping, two movies, a local beach holiday, and a visit to a themed attraction. I think I had to put in that last sentence to give a more balanced view that it's not just all work and therapy for him (even though he had a therapy session almost every weekday this school hol).

Primitive reflexes getting in the way

I've been concerned about my son's primitive (or infantile) reflexes for some time now. In the past, I had searched the internet to find out what are primitive reflexes, the kinds of therapies that work on it and if there are such therapists here. Problem is that there are no specialised therapist in KL that work on inhibiting those reflexes, or at least, none that I've come across.

His CST therapist had attended a workshop on Primitive Reflexes recently in Kuching, conducted by an Australian therapist and realises that my son has a lot of them retained, not just a few.

Lately, I've been very very concerned about my son's difficulty on several essential school skills like focusing, listening skills, writing, handwriting, comprehension, reading. I've been getting feedback from his teacher that he has difficulty in those areas (except for reading - he reads at a level above his age group, but he isn't progressing at the same rate as he was in the past). I've tried ways to help him but am not seeing the progress that I expected.

I raised the question to his CST therapist on whether working to inhibit those reflexes would mean progress not just in his motor development, but in those areas I'm very concerned about. Her sms reply was "Yes yes yes!"

So I'm back on the internet again searching and trying to understand more about primitive reflexes beyond mere descriptions of what it is. I wanted to know why it was important that those reflexes are inhibited because I failed to see the link.

I came across this short video that I thought was pretty good even though it's only a very brief overview.

If the embedded video doesnt work, click on this link to the YouTube video.
http://youtu.be/oLBWHyhW1gk

Happy New Year!

Time flies. A belated happy new year to you!

My son continues to like going to school and is doing fine. The kids were assessed at the end of Term 1, last Dec, and teacher says he's right smack in the middle of the scale (ie average) for numeracy and literacy. I have learnt to take that as good news (bear in mind that I was brought up with the mindset that 'average' is not good enough).

I am slowing down on teaching him academic stuff simply because there are many other areas to work on and I'm getting burnt out. I'm trying not to worry that he'll fall behind academically now that I've stopped his maths enrichment class, so I still supplement what he's taught in school, with focus on literacy and numeracy. I just want him not to be kicked out of school (which they might if he cant cope), and to be independent and happy.

Doing fine doesnt mean things are smooth sailing and problem free. There are still many areas in which I do not know how to help him. Things that are seemingly simple and comes naturally for typically developing kids need to be taught repeatedly for him, and I dont mean fine or gross motor skills.

I am hoping that if I can help his system mature, by providing him the right environment (reducing daily stressors, sleeping early, better nutrition, variety in experiences) and right physical exercises, then he'd be able to focus better in school, learn by himself, and develop the areas he's weak in (speech, social skills, fine motor, gross motor, confidence).

Chinese New Year celebration was good. We were at the in-laws for 5 days. It was more relaxing this time round, for several reasons. He can now feed himself and doesnt vomit. He's managed to get into a good school, so there's far less stress on me in preparing him for the entrance assessment.

Next few months will be busy for me. My current helper's contract is coming to an end. We have yet to find a suitable new helper. But even though I'll be without a helper once she leaves, it'll still be less stressful than present. That is why we are far more careful in selecting a new helper.

I had started preparing for her departure a few months ago, by reorganising and decluttering the house (mainly my son's stuff!).  That's also one reason why I've been quiet on my blog. Busy busy busy. There are still many other areas to sort out and cupboards to clean.

It's late. The fireworks have been setting off loud booms in the last 20 mins to usher in the chinese new year. I look forward to a year of celebrating my son's new achievements and a more joyful and relaxing family life.

May this year bring you and your family good health, happiness, and a spirit that is at peace!