We've Moved

In order to bring you frequent and regular updates on C's progress, we have moved to Facebook!

Here is our Facebook page  link. Do like and follow us there!

Love Is Not Rare

2 months ago, we had the chance to be part of a music video production - Love Is Not Rare. An original song by Vera's mommy, Yin May. Sharing this beautiful video with all :)

 

To support children with rare disorders, please visit rdss.org.sg

 

If you would like to support the song, please download it at yinmay.com or at yinmay.bandcamp.com

80% of the net proceeds will be donated to the Rare Disorders Society (Singapore).

 

 

Love Is Not Rare Music Video:



 

Original Song:

RDSS Love Is Not Rare Music Video
Singer/Songwriter: Yin May Tham
Arranger/Producer: Patrick Chng
Video Production: Back Button Media

 

Weekend at Home

Earlier this year, the homogeneous tiles in our living room popped. We had a renovation and makeover (replacing the bulky furniture and making space for C's powerchair). C has started driving in the house since.

See how much he has grown in the vid :)

Enjoy your weekend!

An Equal Standing, Not A Privilege

"Everyone is having fun except me. Please Mommy, please bring me home. Please get me out of here now". C muttered between uncontrollable sobs.

As I pleaded for him to stay, I cried too. I felt his pain but I also see the deeper truth behind his meltdown.

Granted the world is never fair, our child, who is forced to work harder in every aspect just to fit to keep-up, is often hit with more disappointments. He will always be the one at the back/side of class/presentation/celebration. He can be the loudest but not be heard. As much as he screams "Pick me! Me! Me! Me!", he will never be chosen to go on stage (because he can't).

How much disappointment can a child take before it turns painful? I often ask myself. The helplessness, the anger, the hurt... how did C stayed strong for so long?

Once in a blue moon, he would break down in tears telling me "Mommy if you die, please take me with you because I do not want to be alone."; "Mommy, I am so useless. Please throw me in the rubbish bin". And today's plea seeking the comfort of his home, to run away from the pain. It's heartbreaking.

All it takes is for one to make a difference. One S.E.N.S.I.T.I.V.E. being. That one classmate to stand up for him, to stop others from blocking his view, to tell them "pick him instead". That one kind soul to open up a pathway in the crowd. That one figure to make things accessible. Then all is possible.

Till then, we will continue to persevere. I will continue to help him carry out his duties for his time here - to bring people together, to create laughters and to teach compassion & kindness.

Project 'I've Got Your Back'

24 Dec 2014 - The day we received the special positioning tomato chair. C was 1 year 9 months old.

C in class on his Rodeo

Fast forward 2 Feb 2018 - Delivery of his special buggy, Convaid Rodeo, in replacement of both his tomato chair and stroller he had outgrown.

The Rodeo met a few of our needs e.g. good support for his legs, table top for school use, recline, customisable features, room for expansion etc.

But as with all good things, it came with downsides i.e. insufficient storage space for his milk pump, cough assist & suction machines, canopy, rain cover & tray (when not in use); and the fabric of the chair did not provide as much support for C's back as required. He needed a firm backing that straightens his spine to prevent excessive slouching.

Hence, the birth of this DIY project.



 

Materials from Daiso:
- Neck warmer (top left)
- Plate rack (bottom left)
- Leisure Mat (right)

Cost: $6.00
Assembly time: 2 mins

Guide:
- Cut leisure mat as shown, keeping the seams for mid 2 sections (with elastic band) intact.
- Place mat on rack with elastic band over it.
- Insert rack in warmer.

Product:
- Rack provides firm backing.
- Leisure mat (EVA foam) provides the cushioning.
- Warmer keeps insert intact and gives a softer feel. Can be substituted with pillow/cushion casing of your choice.

I went for quick solution with ready materials within Daiso. These pieces fit together perfectly with little alteration required.

"Cushion" fits perfectly on Size 14 Rodeo



莫名其妙

像往常一样，我推着婴儿车带闻越上学。到了校走廊刚把车停了，正忙着解开闻越的安全扣时，眼角瞧见有位家长走了过来并问道: "孩子生病了怎么还带来学校？"。我边抱起闻越，边冷淡地回了一句 "我孩子没有病"。转头就往校里去。

到了放学时间，又来了位伯伯好奇地问道: "孩子鼻子为何有个管子？"。我简单地解释一番但伯伯好像似懂非懂。

你们有过类似经验吗？ 会怎么做回应？会感到不悦吗？

其实在闻越很小时，我便常解释让他了解自己身体的局限以及如何正面的面对众人的奇异眼光。现在的闻越是个开朗有自信的小孩。他会很主动地解释食道管的用途。他甚至可以不忌讳地告诉别人他不能走。很多时候让他人措手不及，无言以对。

其实想告诉周遭的特别家庭，不要太在意别人所说的做的。把焦点放回孩子和自己身上，好好地过每一天。因为我们只需要对自己交代。加油哦！

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.

CNY Cookies Fundraiser

Support our children with rare condition through our CNY Cookies Fundraiser this year!

Free delivery for orders above $68.00. Payment is cash upon delivery or internet bank transfer.
Please PM us directly for details. Please note we DO NOT ask for advance payment.

Orders can be placed through:
Kenneth - 9633 6393
Lowell - 9852 4066
Daniel - 9685 3222

Thank you for spreading the word and your kind support!

Baking With Love @ Tott

Sunday, we were invited to a baking party at Tott, Dunearn. This lovely event was organised by HCA Hospice Care / Starpals.


Photo Credit: HCA Hospice Care (Facebook)

Santa Spiderman was no doubt a crowd pleaser. He was funny, animated and full of tricks. He quickly won the hearts of the children present. C too was charmed! His eyes sparkled and was grinning from ear to ear while being entertained by Spidey.

As we settled in the kitchen, C urged me to put on his apron, couldn't wait a second longer to start preparing the cupcakes. I obliged.

This little one watched plenty of YouTube he could even gave instructions on how to prepare cupcakes! Unbelievable!

So with my help, C scoped the mix into the cups and sprinkled chocolate chips enthusiastically. While waiting for the cupcakes to bake, we moved on to preparing our mini pizza. C spreaded the base with tomato sauce, lined the dough with toppings and generous amount of cheese. We finished the session frosting our cupcakes with colourful icing.

Thank you HCA, Starpals and volunteers / helpers for a fun-filled family Sunday!

Rare Disease Asia Conference

Rare Disease Asia Conference was held in Bangsar, Kuala Lumpur from 17th to 19th November 2016. We had the privilege to join 11 other RDSS families for this event. This was our 1st drive with the kids and did not know what to expect i.e. how C would tolerate long hours sitting and if continuous feed on the move was a challenge. Started the day at 10am, with 2-3 pit stops in between, we arrived at Hotel Pullman by evening.


RDSS (Singapore) Group Photo - Dressed in "Love Is Not Rare" T-shirts

C met his Malaysian friend, Branden, at the Conference. Branden's mommy, Sook Yee, is the founder of weCarejourney, a social enterprise aims to champion C.A.R.E and support for families with SMA and disabilities. She is also the Vice President of Malaysia Rare Disorders Society.

The kids became friends back in 2014 and it had been a year and a half since they met in person. They were so young then with Branden being 5 and C merely 2 years old. Both grown so much in a flash.

This reunion, they had plenty to talk about and spent some quality time together. They chatted non-stop in their squeaky voices; played ipad, Pokemon fight and did painting. On the left, you'd find the art pieces the kids did during their art therapy session.

This trip had been a rewarding one! We really enjoyed our time with other families as well as on our own. Looking forward to more.

Bidding Farewell

Clicking on my older blog posts and recalling the first time we joined Starpals, it was hard to believe that two years had gone by. C was then a reserved boy, unfond and wary of strangers.

Today I looked at him totally changed all thanks to the group of nurses, volunteers and counsellors who dedicated their time to share, love and care for their patients. I watched C opened up his world; becoming a bubbly, chatty and warm-hearted child he is now and couldn't help but be moved by this beautiful transformation.

Last week, we were officially discharged by Starpals. It was sad to bid farewell yet a good sign that C was doing well, good enough to be on his own again.

We celebrated his discharge with cake, photos, hugs and laughters. This marked the end of our journey with Starpals and the start of a new chapter.

"We don't meet people by accident. They are meant to cross our path for a reason. Either you need them to change your life or you are the one that will change theirs."

I believed it worked both ways. Lives entwined and changed for the better.

A Shot At Mainstream School

We went for a preschool registration exercise over the weekend. It was our first meeting with a main stream school. I was hopeful and yet nervous at the same time.

The coordinator was conducting a presentation for an earlier batch of parents when we arrived. All eyes on us and immediately awkwardness overcame me. I was guilty for even feeling embarrassed. Much as I wanted other parents to accept C, I knew we were perceived differently. Funny how parents avoided our gaze and the atmosphere turned a little solemn. Maybe it was my self-consciousness... maybe. Nonetheless, we settled down quickly and made ourselves comfortable.

Presentation ended followed by Q&A. Parents took turns to clarify doubts but all I wanted to ask was, "Would the school take in special needs child like C?". I certainly did not muster enough courage to ask openly. Afraid of rejection, I asked to speak with the principal regards our special circumstances. After understanding C's medical condition and his mobility, she reckoned it was best to speak with the Director, who had better understanding of the new premise's layout etc.

Vincent greeted us with smiles. I popped the critical question and out came an (instant) unexpected reply , "I don't see why not? We want to encourage inclusiveness too". Totally caught off guard, I went into a daze, red-eyed and wasn't sure what to say next. Vincent broke the silence asking about C's condition and concluded the session collecting required document for registration. Before leaving, my hubby asked "So we wait to hear from school for the confirmation?". Again we received the most assuring reply, "It's already confirmed".

It was a beautiful day. I am grateful and touched beyond words.

Thank you for answering my prayers.



The meaning behind Caelen's name:
闻: knowledge
越: to surpass; exceed

Caelen has certainly met and exceeded our expectations. We hope he continues to learn, excel and overcome his physical limitations.

Recce @ Edgedale Plains

Finally some good weather after an entire week of rain. Decided to check out a school site with C.

Recently we had registered C for EIPIC programme with special school. The waiting period for a placement was typically between 6 months to 1 year. This decision came after our futile search for a home-based teacher. Placing him in a special school was not what I had in mind but the chances of a preschool taking him in was low. Nevertheless, I had not given up yet thus the hunt for a school within close proximity. Locating a preschool accessible by his power chair meant winning half the war. All I needed to do next was to convince the principal.

Starting point: Punggol Field Walk
Destination: 121 Edgedale Plains
Foreseeable challenges: Pedestrian crossing, curbs
Potential roadblock: Unknown as this was an unexplored new estate.

Ease of accessibility: 4 out of 5. Levelled pathway from point to point.
Sheltered from point to point: 1 out of 5. The entire route from basketball court to pedestrian crossing to drop-off point at Edgedale Plains was not sheltered. At Edgedale, we took the unsheltered garden pathway as well instead of going from block to block (unsure if the blocks were linked and if there were curbs), this was a direct route to site.
Facilities for stopovers (diaper change/milk feeds): New housing estate with no nearby amenities/facilities. Plenty of benches at the playground and garden though.
Crowd observation: Friendly and helpful. A group of youths at the park smiled, commented C was cute. I was approached by a foreign worker at the pedestrian crossing, asked if I needed help crossing the road with C. On our way back home, another boy admired his power chair and remarked C looked super relaxed on his chair.
My 3yo's opinion: Scary to cross the road and some places were bumpy because of the road surface.
What I think: It was stressful helping C cross the road. I had to steer his chair, watch over him and the traffic at same time. The countdown for the pedestrian crossing was short (IF I remembered correctly it was 30 seconds or less. Would verify again). We drove on 2nd gear and made it across just in time. Temporary pathway next to the construction site was slightly narrow, too near the road and cars. Apart from the pedestrian crossing, we were required to cut through a driveway (with 2-way traffic) and a drop-off point to the estate. Needed to stay full alert watching out for vehicles coming from different directions. The new estate was a mosquito breeding ground too. We were brutally attacked and came home with numerous huge swells.
Overall experience: 3 out of 5