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.
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.
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
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
Me: "Caelen, want to join me for a walk in the park?"
C: "Yes Mommy, I'd like to. Are we taking the stroller?"
Me: "No."
C: "Are you going to carry me?"
Me: "No"
C: (staring in silence)
Me: "You are going to drive."
C: "In my power chair?"
Me: "Yes, that's right! Shall we?"
C: (hesitant & unsure)
C's stander and motorised wheelchair arrived in early May.
For the past week, he worked hard on the stander. We started off with a 25-minute session (each day). C would tear and whine in pain after being released from the stander everytime. Legs that never bore weight and affected by contracture over the years, the exercise proved to be tough on his knees & joints. To relieve the tension and soothe his aching knees, warm compress were applied at the end of the session.
A week into the training regime, C was beginning to show greater tolerance. There were less complains and pains momentarily. I have also observed a (slight) increase in strength and toned leg muscles.
Here's a clip taken during session showed the two siblings dancing away. Quite a joy to see him standing tall like this :)
Coming back... following our conversation this morning, I brought C out for a ride. He test drove his powerchair outside our house once. Today being the second time and already out in public, he was feeling a little nervous yet thrilled.
C started off REALLY slow, inching forward like a snail. As I hurried him along, he sped up a little.
C saying, "I can go to the park myself. It's so much fun!"
We took a walk in the park avoiding few near miss here and there. I tried hard to explain and point out things he should be aware of but it was hard to make a 3-year-old understand the dangers. On our way home, I encouraged C to chase some birds. He got overly excited, sped off disregarding his surroundings, well, he crashed into a wall shortly after.
C saying, "I'm driving on a bumpy road. I'm having so much fun Mommy"
Finally, to face his last obstacle before calling it a day! C went into the lift like a pro but something else happened. Watch the clip to find out.
We had met up with the team the second time a while ago. We sat down exchanged thoughts and discussed on how we could proceed to help determine C's real wish. We did agree not to rush towards a decision until C was ready. Would continue to gather feedback and ideas as we move along.
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There were those who asked for equipment, room makeover or a trip to somewhere etc. For C, he asked to see the night parade (at Disneyland). Often squealed with delight whenever the heavily lighted floats ferrying different cartoon characters appeared on Disney Junior.
Well, I could have asked for a powerchair like I mentioned in an older post but instead left the option open till C wishes for something that meant to him. It wasn't until after much persuasion by the nurses and social worker recently that I agreed to put up C's request.
Unfortunately C's wish for 'a trip to Disneyland to see the night parade' came down to 'a trip to the fire station' because of something he had said, "I want to be a fireman when I grow up" in response to the question they asked. Merely because they 'couldn't get anything out from him' as C was immensely occupied with the new toys they bought.
It's a child's one in a lifetime wish and I totally understood that it had to come from the child himself. But I expected them to do more to ascertain the authenticity of it; how much genuineness was in his wish by asking the right questions and collecting relevant information.
They never found out why C wanted to see the night parade. They didn't know his favourite character was Pluto (not Mickey), less know that C loved singing and dancing along to "Mickey Mouse Club House" & "Hotdog" songs.
Perhaps it could have been worse if they asked for his favourite food? (It's chocolate cake by the way), we could end up at the bakery. Just saying...
I was upset and disappointed. Upset that his wish was not granted. Disappointed that his wish was taken lightly (they never got to know why). The (only) alternative offered to us (even after I asked for other options) was no where close to the original wish. It was never about the monetary value to begin with BUT it would have been fitting and apt if they had offered Universal Studios to see other characters of his liking; to watch Chuggington Live or equivalent. I would be equally grateful to them for making C happy.
Honestly, the trip to the fire station could have been fulfilled anytime on our own easily (no costs/logistics/coordination involved). To be fair, they did offer to pay for the cab. Still it's baffling and annoying me to the max.
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.
