Mikaail, My Special Needs Son
Mikaail was diagnosed as cerebral palsy child when he turned one year old. He had stroke at 7. Did stroke rob him of his vision and mobility? I used to think so but not anymore. Looking back I feel it was highly likely his vision was lost due to the mishandling by the so called medical professionals! A student of the Spastic Children Association in Pasir Ris. He attends classes daily, accompanied by Aunty Yaya. He has wonderful and supportive teachers and therapists.
Sunday, February 24, 2013
$1 Billion Plan for the Disabled!
I am excited to read about this in The New Paper on Sunday today. Perhaps a percentage of this $1B should be set aside to educate both the Disabled and the General Public. Interestingly, the disabled are unaware of this five-year masterplan though this plan was meant for this particular group. As a parent of a multiple handicapped person, I am definitely interested to know how to benefit from this fund.
After reading the article, I felt that perhaps the Steering Committee could have, for example, inform the special schools in Singapore so the schools can in turn inform the parents. Most of these special schools cater to children from 0 year to at least 18 years of age! I couldn’t agree more with the Member of Parliament for Moulmein-Kallang GRC Denise Phua that the incentives should be communicated more effectively to the disabled.
There are facilities for the disabled such as lifts at the MRT stations, wheelchair access buses, ATMs for the blind, barrier free HDB estates, extra crossing time under the Green Man Plus Scheme. Are these facilities built using the $1Billion Plan?
How often does the wheelchair bound person able to get into the lifts without having to rush with the other able bodied passengers? How about the toilets for the handicapped? These are sometimes used by the able bodied too! I have personal experience with both. This is exactly the reason why I don't bring my son to shopping malls on weekends and public holidays! A real nightmare!
Monday, February 11, 2013
Epilepsy Attacks aka Fits
Mikaail has been having what I thought was difficulty burping. It seems like after a baby drinks milk, the baby needs to be gently tapped on its back to help the baby burp. His so-called difficulty burping are becoming more regular and sometimes about 4 – 5 times a day! The moment he burps or he gives out a loud cough, he seems ok although sometimes he vomits his food.
We took pictures of when he has the attacks and his neurologist said that these are the epileptic attacks. He will be holding his left temple and his eyes fixated, his stiff right hand is turned towards his chest, crammed like. His left leg also trembles.
He showed us this picture from one of his medical books to confirm that it is not a burp and is in fact an epilepsy attack.
Previously when he has fits, we just need to turn him to his side and he will come out it. Nowadays, his epileptic attack is so irregular that it can happen at any time, sometimes when he has his meals. His neurologist suggestion is that we admit Mikaail into the hospital for observation and then he can either recommend other medication or adjust Mikaail's existing medication.
I am reluctant to admit Mikaail as so far we have not seen any concrete solution from the doctors' suggestion. It's like a trial and error and it's not a guinea pig or even a mouse! It's my son and I've lost the quality of life for him.
Wednesday, December 5, 2012
Toilets in Shopping Malls for Wheelchair Users
My favourite shopping malls now are, in order of preference:
When I was at Plaza Singapura on Friday, 30 November, there are a lack of toilets for wheelchair users. Then there is one which was equipped with a baby changing table and also a small urinal for very young boys. I wonder what was the management of Plaza Singapura thinking when they installed these changing table and the urinal in the wheelchair toilets. They should have created a parents room when Plaza Singapura had a major renovation!
Most times people become aware of the need of others when they are personally faced with the situation!! Sad but true!
- Singapore Changi Airport Terminals 2 and 3 (not been to Terminal 1)
- Changi City Point
- Nex
Reasons:
- Clean wheelchair toilets at these malls.
- Availability of chair lift at Nex Shopping Mall makes it easy to move around with a wheelchair bound person.
- Savings of at least 7% GST for shopping at Changi Airport shops.
There is usually a security personnel stationed near this lift to ensure that the lift is not used by other users.
When I was at Plaza Singapura on Friday, 30 November, there are a lack of toilets for wheelchair users. Then there is one which was equipped with a baby changing table and also a small urinal for very young boys. I wonder what was the management of Plaza Singapura thinking when they installed these changing table and the urinal in the wheelchair toilets. They should have created a parents room when Plaza Singapura had a major renovation!
Most times people become aware of the need of others when they are personally faced with the situation!! Sad but true!
Sunday, December 2, 2012
Travelling on the MRT on a wheelchair on 30 Nov 2012
Here we go again from Woodlands MRT station to Kent Ridge MRT station for Mikaail's medical appointment at NUH. The ride was generally smooth and including the transfers, took us barely an hour. Anyhow, I much prefer travelling on the MRT to a cab ride since I do not have to transfer Mikaail from a wheelchair into the taxi and taking him out of the taxi.
The thing about travelling in the MRT on a wheelchair and having to transfer from one line to another requires a lot of walking as the lifts are usually at the far end of the station. This is probably due to the lifts being fitted very much after the stations were built.
What we noticed when we get off from the MRT trains, unless you are a regular traveller, you would need to locate the lift signages as these signages were not strategically located. So we ended walking from one end of the station to the other searching for the lifts! A point to note is to leave home earlier with ample time for any unforeseen delays due to the additional walking time required due to a wheelchair user.
The Interchange stations are more complicated especially when transferring to and from the Circle Lines. To get from Jurong East to Buona Vista is a breeze since the stations are on the same platform. For a wheelchair user, it's a long walk and 2 lift changes to get from Buona Vista to Kent Ridge.
In total, we boarded the trains from the following stations, starting at 9:30 am.
The thing about travelling in the MRT on a wheelchair and having to transfer from one line to another requires a lot of walking as the lifts are usually at the far end of the station. This is probably due to the lifts being fitted very much after the stations were built.
What we noticed when we get off from the MRT trains, unless you are a regular traveller, you would need to locate the lift signages as these signages were not strategically located. So we ended walking from one end of the station to the other searching for the lifts! A point to note is to leave home earlier with ample time for any unforeseen delays due to the additional walking time required due to a wheelchair user.
The Interchange stations are more complicated especially when transferring to and from the Circle Lines. To get from Jurong East to Buona Vista is a breeze since the stations are on the same platform. For a wheelchair user, it's a long walk and 2 lift changes to get from Buona Vista to Kent Ridge.
In total, we boarded the trains from the following stations, starting at 9:30 am.
- Woodlands MRT
- Jurong East MRT
- Buona Vista MRT
- Kent Ridge MRT
- Kent Ridge MRT
- Buona Vista MRT
- Outram MRT
- Dhoby Ghaut MRT
- Dhoby Ghaut MRT
- Woodlands MRT
Sunday, November 25, 2012
Toilets for Wheelchair/Handicapped Users
I brought Mikaail to Marina Square on Saturday, 10 November for window shopping and also to have our meals there. I was pleasantly surprised that the management of Marina Square Holdings had pasted a reminder in the handicapped toilet to remind the able bodied users to refrain from using the handicapped toilet. What a timely reminder as there is no shortage of able bodied users using the toilets meant for the handicapped users. including tenants of the shopping malls using the handicapped toilets!
I thought that the reminder letter from Marina Square Holdings was a fantastic reminder for the able bodied to refrain from misusing the handicapped toilets. Perhaps the Restroom Association of Singapore and/or Handicapped Welfare Association would be able to encourage the other malls to have a gentle reminder pasted on both the inside and outside of the wheelchair toilets to remind like minded able bodied users not to misuse the handicapped toilets as there are usually very limited number of wheelchair toilets on each level of the malls.
Monday, October 1, 2012
Post Scoliosis Operation
It’s been more than a year after Mikaail had his scoliosis operation in May 2011. The previous appointment in March showed that his spine had a fair bit of movement and according to the doctor, a second operation may be needed if the movement gets worst. However, a second operation is not recommended due to higher risk of paralysis!
X-ray pictures taken in March 2012 & May 2011 |
This x-ray was taken on 28 September 2012 |
I am glad to hear from the doctor who attended to us this time that the bone has stabilized so there is no need for operation. We will need to come back in 6 months’ time and will monitor progress over 2 years from date of surgery.
Saturday, June 23, 2012
MRT Ride to NUH
We weren't very sure of which Circle Line station we should change to get to NUH from Woodlands. Unfortunately, the station staff at Woodlands MRT wasn't very helpful or it wasn't service with a smile! The service rendered by the hotline staff and the "personal" service is a world of difference! The last time I contacted the hotline, the staff manning the hotline was more helpful!! I asked the staff in the Woodlands MRT control station how to get to NUH, he grudgingly said to get off at Kent Ridge station. Sure. Wouldn't it make more sense to tell a person how to get there instead?
After asking him how to get there, then he told me that I could get off at Jurong East MRT station then board another train at Buona Vista station then changed to another to get to Kent Ridge. As I had previously travelled via Bishan MRT to NUH earlier this year, I asked him about this option. He then said yes, this may be easier! We need board the MRT towards Bishan station then switch to the Circle Line towards Kent Ridge station.
The ride from Woodlands to NUH was delayed by a couple of seconds at Admiralty Station. Other than this, it was a pretty smooth ride! Total travelling time is about an hour, absolutely no rush and adult fare is $2.05 per person.
There was a bit of a walk from Bishan station to Kent Ridge station as we couldn't locate the lift to the circle line transfer! We need to board the MRT towards Harbour Front to get off at Kent Ridge station.
While looking for the lift, we came across 3 pretty wall tiles and decided to take some photos as we have not seen the other stations with such nice painted walls.
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