A Year On

Graduation Portrait

We're back! C had successfully completed Nursery 2 programme! Hooray!

 

I am especially thankful for having preschool's and AWWA's support. Both had worked closely to accommodate, to create an inclusive environment for C. Am also grateful for his classmates who were accepting and kind. It meant so much to have friends called his own.

Being different, being the minority in mainstream environment wasn't all rainbow, pretty and nice. There were days where C weren't up for it physically (those unavoidable disappointments and helplessness for not able to keep up or participate); there were times we were ignored by other parents; there were times we received unnecessary stares and unkind words from kids and adults alike. But all in all, there were more good than bad. We did well.

In second half of 2017, we participated in two field trips. One such was a day trip to WingsOverAsia Aviators. C was extremely excited on his first outing with the company of his classmates. Like most boys, he enjoyed learning about planes and jets. When given the chance to be in a real plane, he couldn't resist. That's when we faced a roadblock. This plane was approximately 1.5m off ground. We had to climb the ladder, balance ourselves on the plane's wing then squeeze into the tiny cockpit with low-set seats. With floppy C requiring support everywhere, it was no easy task maneuvering into the plane. Though it took much efforts to get in, the smile on his face was priceless.

 

The most memorable event was the year-end concert - New Beginnings, held at the church's auditorium this November. C was asked to represent his class to give an opening speech before the song item - 保护我的是耶和华 (all in mandarin! He didn't speak any Mandarin till he started school).

 

" 耶和华是我们的天父。出也蒙福，入也蒙福。

  他会看守着我们，从今日直到永远。阿门！”

 

It was indeed a proud, tear-jerking moment for us. Please enjoy!

 

 



All Is Well

I took a hiatus from blogging and Facebook due to our hectic schedule. An almost complete disconnection from social media sparked friends' concerns over our disappearance.



Sengkang Fire Station

Thank you all for the SMSes and emails. We are doing well. C has grown a lot, very outspoken and sociable. He is still with the kindergarten and AWWA but under a new initiative - a collaboration whereby AWWA played a more supportive role (in providing therapies, feedback and appraisal) in the mainstream environment. We have completed half of first school term under the new initative, adjustments are being made to fine-tune the programme. While it is too early to evaluate and comment, I guessed we are doing fine.

We usually spent our mornings at the kindergarten and home therapy sessions (physiotherapy & occupational therapy) in the late afternoon; leaving little me time after 3Cs - chores, cooking and caregiving. I was grateful for the June school holidays that provided the much needed break but it also made it difficult to resume our routine when new school term started.

Our days are quite monotonous at this point in time, mostly shuffling between home and school. Our first born will also be taking part in P1 registration exercise this month. We will be doing less blog posts and instead focus more on their education and personal development.

Please feel free to drop us a line if you ever miss hearing from us and are keen to know how C is doing. I would be more than happy to share an update. Love and God bless.




Writing A Barrier?

One of the few cheap gadgets I've invested to make learning easier for C. Boogie Board Jot 4.5 Clearview is a translucent LCD board that comes with a detachable backing and alphabet flashcards. Use it to doodle or slot flashcards in between. Download apple app, place it on top of mobile phone and you can do interactive math quiz too!

This came in handy when C was asked write his Chinese name. We practised the strokes on the board before writing it on paper. The stylus glides on easily with little effort, ideal for C weak hands. Saves paper and erases in a click of a button. The only down side is words come out fluorescent yellow and not so visible under bright light / lighter background. Put it against darker background solves the problem.

This is how C learns! When there is a will, there is a way.

Joyous March

We celebrated C's birthday almost 3 weeks ago. It was his very first birthday celebration in school with his very own group of friends.

From the birthday song dedication during morning assembly (see vid) to cake cutting and goodie bags distribution, C was all grins. Indeed special and memorable for us all. Can you believe this baby of mine is the oldest in his class?

Having a great time with his classmates!

Just today, I left him during snack break to wash his pump. Overheard this kentang boy requesting (in mandarin) for milk from auntie and thanking her for serving it. When I returned, he told me the milk was yummy.

Me: you drank the milk?
C: yes
Me: how? who fed you?
C: i drank it myself
Me: (checking the cup & table for spills) u sure u drank it?
C: yes i can hold the cup on my own. You see... (demonstrating)
Me: (impressed) wow the cup is heavy and you managed it well

New school term, new milestone, greater independence and speaking better mandarin! 😁

What have I learnt so far after making C go mainstream? Pushing ourselves out of our comfort zone made us realised what we had missed out, our potential and the possibilities. From putting C's immunity to a test, him drinking independently from a water bottle & cup, eating an ice-cream cone, kentang (english-speaking boy) to communicating in mandarin, recognising and writing Chinese characters etc. Things I thought he would not be able to do, he had done it.

Now we believe we can do more.

A Birthday Wish

C: I'm going to be 4 years old soon. 4 years old, I can walk?
Me: I'm not sure if Caelen's legs are strong enough to walk for now. Maybe one day a miracle will come. If Caelen cannot walk, mommy will be your legs.
C: Yes I know. You will carry me, you can push me in a stroller or I can 'walk' with my powerchair. Let's continue to stand and make my legs stronger.
Me: Let's pray together...
C: (at the end if prayer) I want to say Amen on my own. Amen! I wish I can walk.

The kind of conversation we had tonight (of the many times he wished he could walk).

A Stumbling Block

Shedding tears in public was not my thing.

But I cried.

I cried in class today. While teacher consoled C, I subconsciously withdrew myself from that seemingly delicate space, squatted next to the storage cabinet and wept... out of frustration, tiredness and helplessness. I was emotionally drained over C incessant crying episodes the entire morning (yesterday's too) for countless reasons.

Today the pains I had to endure were too close to the heart. Looking at C tear-streaked face, hearing him uttered between sobs how he wanted to play to join in the game (but he couldn't run); how he refused to change out the tear soaked tape that secured his NGT for fear of being left out from snack break; for not being able to eat with the others despite being hungry (see 'note' below); for not being able to protect his artwork being "destroyed" by other kids (they smeared some paint on his paper). Being powerless being dependent on others to act on his behalf frustrated him but most of all, he was upset with mommy who couldn't make things happen. It broke me.

I guessed I need a good rest tonight. Praying for strength and positivity.

Note:
Backtracked a little. C had fallen ill on the 3rd week; missed 3 days of school. He returned this week in better health but with weaker swallowing. Food/drinks were temporarily avoided to reduce choking. Despite proper rest over the week, C also had difficulty adjusting to school hours. Insufficient sleep contributed to his moodswings.

School Life

C completed 2 weeks of class! At times visibly tired, he fussed and cried but still enjoyed school and the company of his friends.

On the first 2 days, I was busy helping C adjust to the new surroundings as well as educating the more inquisitive kids on why C needed the NG tube and gadgets. The children took in these information as I explained and from then on they treated C as equals. They walked up to C and greeted him every morning; they high-fived and they held hands, spoke and laughed.

School taught me plenty. As much as I mentally prepped myself for the challenges, I was still caught in unexpected situations and was in a fixed then slowly came to understand the pressure to conform. Example of some unexpected scenarios:

i) C without a water bottle (since he does not drink from one). He cried so much over this on the 1st day of school that I HAD to get him one. Good that came out of this: he learnt to sip carefully with a straw without choking. C now had few good friends - Ade, Kash, Eve and Ally (not their full names for some privacy) to help fetch his bottle, open up the cap and sometimes feeding him water.
ii) Teacher instructed the children to stand up (or jump/cross their legs etc). C voiced out in dismay that he could not walk/stand and teacher was obviously caught off guard on how to respond. Well, things happened. We all learned and C soon understood he only needed to do what he was able to.
iii) Daily outdoor time meant riding the tricycles and playing at the playground. I did allow C (within the best of my ability) to ride a tricycle. I half squatted, half push, supporting C's torso and head while maneurving the vehicle. That was the only time he rode it haha. It was too much for me and we settled for simple play on the see-saw and slide during outdoor. On hot days, we opted to stay in classroom to do paintings/stretching exercises for his legs.
iv) Sports day (heavy physical activities) every Tuesday and Friday. P.E. teacher was kind enough to evaulate what C could do and included him in the activities.
v) Our 1st waterplay on Wednesday started off bad. Trays of water were lined up on a row of tables, out of C's reach. Of course no one foresee this until it was too late. C was upset and crying. I improvised a 50ml syringe as "watergun" and Adel thoughtful enough to fetch water from a bucket for C and voila! Instant changed of mood and participation.
vi) No way I could stop C eating during snack time so I had allowed him to do independent eating/chewing while I watched closely.

When in a regular classroom setting, we needed to make little changes sometimes improvise o top of plenty of explaining in order to blend in. It would be ridiculous for the school to alter their programmes just so we fit. That would probably make learning difficult for the majority too. In my opinion, true inclusion meant for both normal and special children to understand and accept each other's differences without forcing changes on anyone. I was glad that some of the 4-year-olds understood that and always keeping a lookout for him. The little gestures from the children and teachers made this transition an easier and enjoyable one for C.

Marching into 3rd week of school, teachers had slowly started proper lessons. Soon we would face more challenges in writing and schoolwork. Let us share more soon then.

School

Today is the start of a new school term for most including C. Like many moms, I had the jitters the previous night. My worries were mostly unfounded except for one - C couldn't wake in the morning! A little mad rush but we made it to school on time.

This was C during assembly. They sang 'How did Moses cross the Red Sea' and a few others. He was one of the few who danced and sang. It was such an emotional moment. It felt like my heart was going to explode.

All went pretty well for the first day.

Hoping to share a little bit more in time to come. For now, we hope to settle down quickly and keep up with the new routine.

Please continue to keep us in your prayers that C would stay healthy during his time at school.