Tiny miracle

SN is a 5-week-old baby. He was born prematured, has bilateral cleft lip and palate, a hole in the heart, and had a very bad sepsis. He nearly lost his life in in his first week. At 3 weeks old, he contracted bronchopneumonia, which thankfully resolved a week later.

SN was referred to me for feeding management. He has very good sucking, considering that he was put on tube feeding since birth. We started on bottle feeding 2 weeks ago and he seemed to be tolerating it very well.

And now, from 1.8 kg, he has gained weight to 2.27kg. And most importantly, according to the dietitian, SN has adequate caloric intake without the need of supplementaries.

From fighting for his life, to gaining weight. It’s almost an unbelievable achievement. I am very encouraged by this tiny miracle. I feel like I can go on now…..

28

Having kind of a lousy day. And it’s supposed to be kind of a significant day for me. By 5 pm, I was thinking, “Oh whatever.”

However, on this day, I’m reminded of His grace for me throughout all these years. Indeed, it is Him who has brought me through this far.

This song, “I’ll Move On” by Olivia, speaks of everything I’ve been feeling for the past few weeks. And it reminded me of everything that God is.

This road that I’m taking twists and turns
My life my chance turning dreams into reality.
Down this path faced with so many things
Sometimes I feel like giving up and turn away

Can’t seem to go on
And I’ve been thru’ this before
Now where am I?
Where do I stand?
A little lost here.
But I’ll remember.
All those times you’ve bought me thru’.
I’d be a fool to give up cos’ the goal is near

I’ll move on I’ll go on.
Lord I will take your hand.
And you will guide me along.
Survive thru’ this storm.
So I say, come what may.
I’ll hold on to my hope.
Yes, I will walk down this road.
And my passion drive will lead me on

Here I am Once again caught in the rain.
Looking back I’ve come so far And I want to carry on
Take a step at time
It’s alright.
Even thru’ this rain, I want to smile again

Don’t hold back now.
And i’ve been thru’ this before.
Now where am I?
Where do I stand?
A little lost here.
But I’ll remember.
All those times you’ve bought me thru’.
I can feel the sun shining down on me

Here I am, Here I am.
Lord I will take your hand.
And you will guide me along.
Survive thru’ this storm.
So I say, come what may.
I’ll hold on to my hope.
Yes, I will walk down this road.
And my passion drive will lead me on.

Amazing

Sunflower beauty surrounds me,
Against a sky of gray.
The nighttime falls down upon me,
At the closing of this day.
Words cannot explain the feeling that my heart speaks of:
The choices, the boundaries
When I feel the pain of all these thoughts of mine:
The questions, the answers.

When will I realize all of life is amazing.
Take it in, let it go, can’t you see,
It’s all amazing.

I need the feeling of sunlight,
To help forget the cold.
Between the spaces of daylight,
There lives a frozen soul.
Here we go again, this wand’ring mind won’t settle down,
If just for a second.
When I think it’s done, it starts right up again,
Unending, relentless.

When will I realize all of life is amazing.
Take it in, let it go, can’t you see,
It’s all amazing.

Melt away, let life flow,
Just give in, just let it go.
The current’s strong, but so am I,
Amazing things don’t ever die.

When will I realize all of life is amazing.
Take it in, let it go, can’t you see,
It’s all amazing.

When will I realize all of life is amazing.
Take it in, slow it down, can’t you see,
It’s all amazing.

Melt away, let life flow,
Just give in, just let it go.
The current’s strong, but so am I,
Amazing things don’t ever die.

Performed by Sara Gazarek

(I’ve been listening to this song repeatedly. It resonates with how I feel…and reminds me that things are still amazing.)

Keep moving….

No sooner have I said that I’ll scream if I have to move my clinic again, I got the news…..I have to move again.

This time, it’s because a ward will be undergoing renovation and the only place they can move to is my ‘current’ clinic because it was a ward. Sounds confusing. I’m not sure how to explain this either. So while the renovation takes place, I’ll have to move somewhere else, and then move back to the ‘current’ place (which I’ve no idea what it means anymore) once the renovation work is done.

So I have and will be shifting a number of times in the span of a few months. Thank goodness I’m allowed to store my furniture in my ‘current’ place as the new room is too small to fit all my stuffs.

I was told it’s only for 5 weeks. I hope so too.

I’m burnt out and stressed out. Somebody suggested that I should take a holiday. What they didn’t know is that I came back from Hong Kong only less than a month ago!

The story of the lift

Good things do happen in the midst of the bad. If not, I would not have found out that after moving to 3rd floor, that the lift is an enemy to 3 of my autistic children.

Although it’s still manageable to take the stairs, it would be good for them to learn not to fear the lift, so that their parents can take them to other places. You can’t expect to take the stairs to 8th floor, can you?

HY is one such child, who screamed and cried at the thought of going into the lift. His father had to hold him while he trembled.

So, it’s a challenge for me to take the fear out of him. It’s important to try to understand what caused the fear. It’s an enclosed space in which you do not know for how long you are trapped inside. It can be a very scary place for children. So, helping them to turn the unexpected into the expected is very important.

We did a social story, in which I drew out a booklet regarding steps of going into the lift and how long the child had to wait before going out of the lift. After going through the theory, we tested the practical.

HY refused to enter the lift. Forcing him into the lift would only exacerbate his fear. So I went in first to show him it’s safe. Then following the booklet, he pressed the button of the floor and looked at the floor indicator to know how long he had to wait in the lift before the door opened. And voila, he didn’t scream or cry!

We went to the park for a while and prepared him to take the lift again. This time, he already knew what to do and we had no problem at all.

When it was time to go home, only HY and his mother took the lift. HY’s mother thought he’s less afraid with me around. I bid them farewell and ran down the stairs to see if there’s any problem.

I reached the bottom of the stairs as they went out the lift. I hid myself and HY’s mother looked back and shouted that they had no problem.

I felt like that’s a big achievement. I told HY’s mother, now they can bring him to the hotels!

What’s waiting back here?

I was away in Hong Kong for about 2 weeks. A much needed break for myself. When I went back to Taiping, other than getting working blues, I was also in for other surprises.

My clinic was shifted to 3rd floor. Previously it was on ground floor. They turned the ward that I was occupying into the emergency swine flu or H1N1 flu ward. Due to logistic reason, I guess. No cases yet (phew!)

Because my clinic is on 3rd floor, my patients will have to take the lift or stairs. This won’t be a problem….if some my patients weren’t autistic. One child was crying histerically due to the change and also fear of the lift. So we had to carry out therapy in the park where I did social story regarding steps in entering and getting out of the lift.

Later in the evening, another one of my autistic child also got distressed, but by a lesser degree. We also did the social story, and after the practical session, he was happily using the lift. I’m glad!

I have no idea how long we’ll be put up there. I was told it’s a temporary measure. But if we have to move everytime there is a pandemic, I would go crazy! Who enjoys moving house?

The working blues is slowly disappearing. I’m back to being ‘happy’ again doing what I’m doing. And going back to being a workaholic!

Back to reality. Life’s routine.

New and re-found interests

Jogging whenever I can.

Taking the chance even if it looks like it’s going to rain. There were a few times I was caught in a drizzle. Extremely good motivation to run! Now I can jog the whole Taiping Lake without any problem. And it helps me to release my stress!

Cooking for my on-call housemates.

It’s nice doing something nice for your good friends. And seeing their smiles when you send food to ward. Extremely therapeutic. And at least for an hour, I don’t think about work!

And the drive to do all these – work stress!

Flash flood in clinic

I remember that when I was between 4-5 years old, flash flood happened in Batu Gajah. I was staying in my uncle’s shop. I remember vividly the scene. I was sitting on a chair with my legs swinging, barely above the water as my mother’s sweeping away the water.

Fast forward to more than 20 years later, I was again sitting on a chair, swinging my bare feet on the water, that has flooded my clinic in Taiping Hospital. My clinic is situated on the ground floor and on low ground.

There was a heavy downpour yesterday, and suddenly, we saw water streaming into the clinic. Water was coming in from all directions. There was simply no time to think, and no way to stop the water!  My assistant and I quickly moved all our toys and anything of valuable high up. I had to cancel my patients for that afternoon as it was impossible to carry out therapy session with the water ankle deep. My autistic child would have a field day!

And so I waited for the water to recede, and reliving my childhood, walking in the water among dried leaves and flowers. Or swinging my legs and splashing the water.

By 5pm, the water has receded. My clinic is all muddy. Most cleaners had to work extra time to clean the mess.

Thanks to them, my clinic is all clean again, when I went to work this morning.

Hugs and kisses

I haven’t seen HT for 3 weeks. He’s a 6-year-old boy with autism. He started developing speech (still unintelligible) after using PECS. And he’s a fast learner.

HT’s my last patient for last Friday’s sessions. After the patient before him left my room, he dashed into the room, put his arms around my me, looked toward me, and started making kissing sounds.

I was so shocked that I didn’t know how to react. HT had never done this before. His mother was surprised as well. I jokingly told her that her son was trying to ‘harrass’ me.

However, it was nice to be ‘loved’ by one who supposedly desired little communication or interaction with others.

I hope I will never stop being surprised, and amazed!

The live of YP

YP is an 11-year-old boy with autism. I met him in May last year. He screamed, snatched, hit and shout. He always wanted his own way and refused to accept ‘no’. His parents are at loss as to what to do with him. He’s a tall boy, so it’s not easy to control him.

Initially, we tried using schedule and social stories to help him control his behaviour. However, that didn’t quite work out.

I contemplated discharging YP, not knowing what else I could do for him. However, I did wonder if his behavioural problem could possibly stemmed from communication breakdown. So I had a few discussion sessions with YP’s parents, and we started him on Picture Exchange Communication System (PECS). Basically, we work on his communication skills first. And coupled it with visual strategies to help him understand what is acceptable behaviour.

After about 2 months of his mother’s diligence in working at it, YP is now able to wait, listen, and accepts ‘no’. He no longer scream, snatch, hit and shout.

Knowing how to and being able to communicate is such a powerful tool. Especially when I see it in YP. His mother now is very happy. How, she can reason with him.

I’m glad I didn’t discharge YP without trying more. If not, YP’s, as well as his family’s lives would not have taken a better turn.