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.

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

Recce @ Punggol Plaza

Quoted in Enabling Masterplan 2012-2016, "...it aims to build a more inclusive society where persons with disabilities are supported across their various life stages and aspects of daily living to realise their fullest potential and to be contributing members of the society."

I had never given much thought about social inclusivity, much less understood the significance of it until I became a special parent. Things that we took for granted on a daily basis, be it pathways we stepped foot upon; the curb of a road divider; transport to get from point to point; stairway leading to an office building; buttons of a lift etc. Things or issues that we would never kill our brain cells over unless they pose an inconvenience to our lives, were hurdles to the physically challenged. I learnt it first hand.

I was reluctant and nervous about bringing C further away from home for many reasons, just to name a few:
i) Being stranded during out of power / breakdown situation;
ii) At higher risk for accidents;
iii) Inaccessibility and unable to get to destination;
iv) Situation where child was unable to drive due to fatigue / illness;
v) Milk pump battery and/or supplies at risk of running out during all of the above scenarios.

There was no Dummies Guide to rely on, no Google map on fool-proof (handicapped) route to take and no nearby.sg search for the nearest wheelchair user for assistance. The numerous concerns traveling alone with a special child on powerchair (fyi the vehicle required 1-2 strong men to barge) were very real.

For now, the only way to find out what to expect was to test out each route & destination, expanding the distance covered. So here's our first recce:

Starting point: Punggol Field Walk
Destination: Punggol Plaza & Wet Market
Foreseeable challenges: LRT lift and crowds
Potential roadblock: LRT lift out of service. Need to proceed to nearest pedestrian crossings at two ends of road. However, only one of said crossings was feasible for use as the other involved going up and down curbs. This would be further explored in next blog post as route leads to another recce place.

Ease of accessibility: 4 out of 5. There were adequate ramps and lifts for use. Some paths were narrow so it required experienced maneuvering.
Sheltered from point to point: 5 out of 5
Facilities in mall for stopovers (diaper change/milk feeds): No diaper room
Crowd observation: Mostly friendly. We did encounter impatient folks who tried to overtake and not give way especially while taking lifts. The handicapped and folks with other form of medical condition were generally friendlier gesturing "hello", giving flying kisses and smiles. The wet market operators were most open to conversations.
My 3yo's opinion: It was a bit difficult to drive because I bumped into things and people
What I think: Paths leading to LRT lifts were narrow and only allowed for one stroller / wheelchair to pass. It would be difficult to do a 3-point turn coming out from lift when there was a crowd hence most times I had to take control of chair to avoid causing a jam. We were unable to enter most shops due to space constraints but given that this was a small neighbourhood mall so it's not critical.
Overall experience: 4 out of 5