I began Accupuncture treatment in January 1999 when I was 1 year and 2 months old. My Papa and Mummy hoped that with the stimulation provided by the treatment, the messages to my muscles may be enhanced and thus allow me to be able to have more freedom in movement.
As I was very young, the Accupuncturist inserted the needles, twisted them and then took them out.
By the time I was 2 years old, I was able to lie on my back and have a total of 22(!) needles inserted on my head, arms and legs. I would have to lie there for 20 minutes and then flip over and lie on my tummy with another 4 pairs of needles down my back for 10 minutes.
It doesn't really hurt but I admit that I sometimes don't like it and cry. However, there seems to be results. I have greater overall range of movement, especially in my legs after almost 2 years of treatment.
Parents' Note: Those who wish to embark on this route of treatment must ensure that the doctor that you chose is well qualified and has experience in treating children with muscle flaccidity. We were fortunate enough to have one trained in Shanghai with years of experience in this area.
In September 2002, my regular doctor left to go home to Shanghai and I got a new doctor from Beijing. Under him, I now get electro-stimulation. i.e. after inserting the accupuncture needles, the doctor attaches four electrodes to certain needles in my arms and legs and later my back to increase and improve the stimulation of the accu-points. It feels funny as it has a `jumpy' feeling that can be quite ticklish! After my accupuncture treatment, my new doctor also gives me a massage over my arms and legs - it feels GOOD!
Parents' Note: Jonathan has stopped treatments since 2008 due to school demands. He was in Primary school by then and due to the long school hours, we had to cut back the number of therapies that he had. However, we do feel that the treatments have been helpful.
I go for Hydrotherapy at the KK Women's and Children's Hospital once a month. I enjoy swimming in the heated pool and my physiotherapist is happy with my progress, especially my neck control.
My Mummy tries to take me swimming in the pool in my condominium twice a week. I have a `floatie' that goes around my neck so that I can swim on my front or on my back without my head flopping down into the water. My Mummy also doesn't have to hold me so tightly and closely so I have more freedom of movement. My favourite however is to hold on to the edge of the pool with my hands and pull myself along the perimeter. I can go quite far, almost to the opposite end of the big grown-ups' pool!
My mummy now puts 500g weights around my ankles so that I can put my feet down - otherwise, they always float up! I also wear a swim vest that is like a life jacket to help me float. Now I can 'walk' in the pool and I also hop and jump too! It's lots of fun and I am always laughing as I enjoy it so much.
We also got some plastic dumb-bells that can be filled with water - when it's empty, it's light but also hard to push down into the water; when it's filled with water, it's heavy but also easily to push down. Now I am also a weight lifter and can do arm exercises in the pool.
As I get weaker, the need for functional movement is more important and with the time constraints that long school hours and academic deadlines place on me, I switched to doing OT since 2011.
Now the concentration is on keeping my range of motion and strength in my arms and hands.
OT's fun at KK as my therapist plays games with me at each session - purposeful play it is!
I started play-school in July 1999. It was a Parent-Toddler class and Mummy came to class with me. It was a Montessori based programme so I was given a lot of opportunity to do pouring and transferring acitivites that helped me in my motor skills. I enjoyed going to class to learn new songs, listen to stories and do craft activities.
When I was about 2 1/2 years old, I began attending class three times a week for two hours each time. My Mummy no longer went into class with me. My teachers were very caring and made sure I was sitting OK and that my friends didn't knock me over. My friends learnt to take care of me and often helped me by getting me my water bottle at snack time, or bringing toys to share with me at free-play time.
Year 2001: I now attend a church-run Nursery School for three hours every day. My Yaya (Filipino for child-nanny) accompanies me. My Papa fetches me to school and I ride the school bus home. (I enjoy that very much!)
Unfortunately, I have been having the flu off and on for over a month since January and have missed quite a bit of school so I haven't settled into a regular routine yet.
Parents' Note: We are thankful to Jonathan's past Montessori Directress who has been very accomodating to have him in class. We are pleased that she had the courage to have him in unaccompanied. (Mummy sat outside the class just in case but had to go in only once because an enthusiastic classmate pulled Jonathan off his chair in a bid to have him join in the acitivity.) It gave Jonathan the opportunity to grow in independance.
We are also happy that Jonathan's present school principal has been very enthusiastic in embracing Jonathan into her school. So far, her teachers are also very accomodating and have not avoided trying to carry Jonathan (can be difficult as he would purposely not hold himself up when carried by an unfamiliar person). We also hope that his new friends would, as his previous school-mates have, learn the art of grace towards a friend who is different.
Year 2002: Kindergarten 1
I enjoyed my K1 year. I love my teacher and call her `mahal' (Tagalog for Darling). She calls me mahal too. All my friends are very good to me and help me get my things like food, book and water bottle. Sometimes they fight over who is to help me and my teacher has to make them take turns. In September, I got my first manual wheelchair. It is yellow. It has a wooden table for me to use when I do work. I like my wheelchair. Now I can move around by myself. In October was the year-end graduation and concert. I danced with my class to the song "Sing, Shout and Dance Hallelujah". I was very nervous and did not even smile at my parents. They said I danced very well except that I looked very fierce because I was not smiling!
Year 2003: Kindergarten 2
Next year I go to Primary school. There's a lot of work to do this year so I have to work VERY hard! I enjoyed my graduation. We danced a total of four songs - Give Thanks, Lao Shi De Mu Guang, Dig Deep Down Deep and Nothing. I will miss my Kindergaten as I had very loving teachers and good friends there.
Year 2004 : Primary 1
I am in BIG SCHOOL now! I am in Primary 1 Benevolence of Tanjong Katong Primary School. My parents said that they chose the school as it is wheelchair accessible and also because they liked the Principal there who was very happy to have me in the school. My Mummy and Papa said that the Principal did not see me as a difficulty but as an ordinary child seeking a place in the school.
In the mornings at assembly, I have a buddy from Primary 5 who will push me from the hall to my classroom. Then in class, I have a helper to get my books for me. She will also pack my books into my bag for me after school. My Yaya stays in the school with me although I usually do not need her to help me - except for recess time when I have to use the toilet and also to help me with my food. Mummy sends me to school and picks me up after.
I LOVE my teachers. They are very kind towards me. I like school very much. The only thing that I don't like is having to wake up at 5.30 every morning to get to school by 7.00am!
Year 2005 : Primary 2 Empathy
I am still enjoying school a lot! I have done well in my exams and made it to the best class in the school. My Papa and Mummy are very proud of me!
Year 2006 : Primary 3 Diligence
I sat for and passed the entrance tests for the Gifted Education Programme. However, if I chose to enrol I would have to change school - no way !! I love my school too much. I am one of only 3 students in my school who passed.
I won the Science prize for the year. The first time I won anything and I am very happy and proud!
In this year, I had to use the Optical Answer Sheet when asnwering multiple choice questions in my exams. In the OAS, I had to shade in the ovals for the correct answers. As I was so weak and slow, I took a lot of time to do the shading for each questions such that I could not finish my mathematics exam paper. When they realised this, my parents and teachers had a discussion and it was decided that for subsequent exams, I would just have to tick the correct answer on the OAS and the invigilator would then shade in the ovals completely for me. It was such a relief for me then!
Also, my teachers and parents realised that the more demanding examm requirements warranted me having extra time to complete the papers due to the slow pace at which I write compared to my classmates. In the end, I was accorded 15 minutes extra per hour of an exam's duration for each paper.
Year 2007 : Primary 4 Diligence
I took the University of New South Wales examinations and obtained High Distinction in English!
Year 2008 : Primary 5 Altruism
I took the UNSW examinations again and received High Distinction for English and Science.
I also won the school prize for being best in English and Science.
2009 : Primary 6 Empathy
I took the UNSW examinations once more and received High Distinction for English and Science.
I won many prizes this year: For being best in English and Science, as well as for being first in class and second in the whole standard. I was very happy to receive a tidy sum in book vouchers to send at the store!
Primary School Leaving Examinations (PSLE)
This is a very important examination that would determine the chioces of secondary school that would be open to me. I had visited many secondary schools during the year - especially to check out how accessible they were for me and my big power chair. In the end, Victoria School was the most accessible and it was also my Dad's alma mater so he was pleased at my choice. However, VS is a good school with a cut off point of 245 which means that I had to score As for every subject and I wasn't very sure where I stood. I was doing well in school but worried that I might fumble during the PSLE itself. Also Chinese was my Achilles heel......
In the end.... I topped my school with 271 points scoring A* for each subject including Chinese. I was over the moon. I would be able to enter VS for sure!
Seconday 1 - 3: 2010 - 2012
I am continuing to do well in school. I win subject prizes as well as postition prizes each year. I actually do not study very hard as all I do is listen attentively in class and make sure I understand the concepts. After that, I just do my homework and as my pace of work is slower, that's all I have time for each day before it is dinner and bed. However, I believe that too much tuition and extra homework is counterproductive and leads to burnout. So I am happy that my parents don't send me for tuition except for Chinese which I truely need!
Seconday 4: 2013:
This year I will be taking the GCE 'O' level exams.
I am quietly confident of doing well and am aiming to enter Temasek Polytechnic to read Psychology. The cut-off point for the course is only 8 so I have to make sure that I don't fumble during the all-important exams.
Temasek Polytechnic: 2014:
I scored As for all the subjects I took except for Chinese where I scored B.
My aggregate score was thus 6.
I applied for Direct Admission to Temasek Polytechnic and was accepted. I started school in February as a result (as opposed to April) where I took Entreprenuership and Japanses Studies, as well as took part in teambuilding exercises.
Note: A Bi-PAP machine puts pressure behind every in-breath so that the breath is deeper and also exerts an outward pressure on every out-breath so that carbon dioxide is better cleared from the lungs. In this way, the Bi-PAP helps to make breathing more efficient. It is worn usually with a mask that is fitted over the nose with straps to hold it in place.
I was hospitalised for pneumonia in July/August 2000 for 16 days. When I first went to the hospital, I was given oxygen therapy. However, as my oxygen saturation did not improve, I was transferred to a high-dependancy ward and put on C-PAP (Continuous Positive Airway Pressure). Soon after, my lungs became plugged and I was moved to ICU and put on Bi-PAP. I spent 5 days in ICU before I was better.
Now I am on Bi-PAP when I sleep at night. I don't mind it at all. I am practicing to be a fighter pilot when I grow up.
Parents' Note: Before this, Jonathan had been relatively in good health and bounced back with no problem each time he was sick. This time, however, although it was a `common' virus (actually RSV which in `normal' children is serious only for those under two years) he succumbed to it and we had our first frightening encounter with what it means to have your child potentially facing respiratory failure. The threat, that before had been something we just read about, became reality and now we get very frightened whenever he gets a `phlegmy' cough and apply chest physiotherapy with vigour!
In March 2002, Jonathan went for a sleep test which entailed an overnight hospital stay. Electrodes and monitoring devices were stuck all over his head and face. The purposes of the test were to check how he was breathing while asleep and also to ascertain what Bi-PAP settings were suitable.
The result of the test saw him having episodes of apnea and toward the end of sleep, it was found that his breathing become very shallow. His Bi-PAP settings were set at 10/6.
For those who may be fearing the use of the Bi-PAP, may I share my feeling on this with you. I initally felt afraid that Jonathan would become reliant on the machine and become lazy in his breathing. After three years of use, I must say that it is an essential piece of equipment for the health of my son. After using it, I found:
* Jonathan did not have the night sweats he use to have before
* He slept much better and hardly ever woke up in the middle of the night
* It keeps Jonathan out of hospital when he is sick - this is because we can adjust the
settings up a little higher when he has difficulty breathing and we can nurse him at
home. No machine would definately mean a hospital stay. Of course it also helps to
have a sister who is a respiratory specialist who makes house calls and lets up know
when / if Jonathan would need more specialised care!
Over the years, the BiPAP has been an essntial equipment for Jonathan has it has allowed him to stay home for many of the times he has been ill. By increasing the pressures when he is ill, Jonathan is kept comforable and given time to recover.
After his preschool years, he feel sick less often and the BiPAP helped keep him out of hospital. The only time he was hopsitalised was in 2009 when H1N1 was rampaging and he fell ill. As precaution, Jonathan was hospitalised and found to be positive for that strain of flu. However treatment with Tamiflu found him much better in 3 days.
Jonathan used a Resmed Sullivan for over 10 years and we have found it to be a really good workhorse. He is now on the Resmed VPap and on 20/12 settings.
I started Horse Riding with the Riding for the Disabled (RDA) in September 2003. I go there once a week on Wednesday afternoons. My horse is Laurie. He is a dappled grey pony and is rather fat! He loves ot eat polo mints, apples and carrots.
In the beginning, I was very weak and could not sit up on the horse as I fell over at every step. So I lay face down over the back of the horse, first on my right side, then my left. I did this for about 2 months. Soon I was able to sit up for a while, but with my instructor supporting my neck, one sidewalker supporting my back and another sidewalker supporting my body!! They had to work very hard to help keep me up!
However, after 6 months, I am able to hold myself and can sit unsupported for about 30 counts!! My instructor and my Mummy and Papa are very proud of me. I am very happy too and can start 'real' riding now. My instructor has just started letting me hold the reins so that I can learn how to guide Laurie.
I now have a back-rider - someone who sits behind me to support me when I ride. Because of the greater load, I have now switched to Elle which is a much bigger and higher horse! I was a little afraid when I first started but I now enjoy being able to see far ahead.
The highlight of this year was that I got to meet Princess Anne - Queen Elizabeth's daughter. She visited the RDA and a few of us were priviledged to ride for her. I made her a card which I gave to her myself. A few weeks later she sent a Thank You letter to the RDA in which she mentioned me and the card I gave her. I felt so proud to have received something from Buckingham Palace!
I am still riding Elle and am working my arm muscles hard as I am now holding the reins and controlling her myself. I have to pull really hard to make her go where I want - it's really HARD WORK!
Jonathan stopped riding in 2009 - his Primary 6 (PSLE) year.
Unfortunately as the RDA relies heavily on expat volunteers, and with fewer of them arriving in Singapore, there has been a squeeze on the number of riding slots. So after the break taken for his exams, his riding sessions were not resumed.
Jonathan has a Facebook page. Search for "Jonathan Tiong"