$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!

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.

Toilets in Shopping Malls for Wheelchair Users

My favourite shopping malls now are, in order of preference:

1. Singapore Changi Airport Terminals 2 and 3 (not been to Terminal 1)
2. Changi City Point
3. Nex

Reasons: 

1. Clean wheelchair toilets at these malls.
2. Availability of chair lift at Nex Shopping Mall makes it easy to move around with a wheelchair bound person.
3. 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!

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.

1. Woodlands MRT
2. Jurong East MRT
3. Buona Vista MRT
4. Kent Ridge MRT

Then from NUH, to get to Plaza Singapura, we boarded the trains from

1. Kent Ridge MRT
2. Buona Vista MRT
3. Outram MRT
4. Dhoby Ghaut MRT

and from Plaza Singapura to home in Woodlands, it was a straight forward track.

1. Dhoby Ghaut MRT
2. Woodlands MRT

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!

We were at IMM on Sunday, 11 November doing some shopping and eating.  When we arrived at IMM, my wheelchair bound son needed to use the toilet.  We were on level 5 and I looked around for a wheelchair toilet.  After looking around for a while, I spotted a wheelchair toilet signage outside the lift lobby, near the carpark.  Alas, the toilet was occupied and after waiting for about 5 - 10 minutes, I knocked on the door.  A tall Indian man stepped out of the toilet and he was not even apologetic after seeing my wheelchair bound son outside the handicapped toilet.  There are ample toilets for the able bodied and I personally loathe seeing these able bodied users misusing the toilets meant for the handicapped users.

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.

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.

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.

 On our way back from NUH, we had to travel in the opposite direction.  As I didnt take any photos earlier, I decided that I would take a couple of shots to add to my post.  Alas, this time, there was a very conscientious security personnel and also rather rude.  He practically called out loudly and waving his hands "no photos, no photos".  So I asked him why not since we are only taking photos of us against the wall!  He said for security so cannot take photos.  I then asked him if truly it is due to security, why is it there are no signage to say so!  Then he said go upstairs and ask.  Initially I thought of just writing to SMRT but as we ended having to change trains on the same level as the Bishan Control Station, I decided to speak with the customer service to find out more and also to explain to them that since the walls are nicely painted, why cant the passengers take photo against the walls. What security issue is there? I also explained to her that if I had taken photos against their control station as a background, perhaps this could be construed as a security issue.  We are merely appreciating the nicely decorated walls!  I supposed the customer service officer contended with my suggestion and apologize for the blunt manner of the security officer.

Mother's Day

Heard from my sister that when Mikaail’s class teacher asks all his classmates which of their parents they love most, the children before him chose either their dads or mums.  When it was his turn, he said “two-two” ie both parents!  He really set a benchmark for his classmates!  My angel!

Then just yesterday (Friday, 27 April), his teacher asked the class what they want to thank their mum for.  He said he thanks mummy for:

• .      taking care of him
• .      buys him essence of chicken and eggs
• .      vitamins so he is strong

He really touched my heart and when I praised him for being such a darling, his face lights up!

Magic Capsule - Zell-V

Mikaail been taking this "magic capsule" for almost 6 months now.  We are very impressed with the blood test results.  Previously his blood cells are all cluttered.  See the pictures!!

Before Zell-V

After Zell-V

How has Mikaail benefited from these Zell-V capsules?  Looking at the blood test results, it would seem that now his blood cells are able to move independently, bringing the much needed oxygen to his internal organs!

My wish is for these “magical” capsules to repair his cells such that he can somehow regain the use of his vision which he lost due to incompetence of the attending doctors or lack of compassion towards patients!  I used to believe that he lost his vision due to stroke but now, I believe if the proper care was extended to him, he would not have lost his vision especially since the surgeon said “nerves are miles away”!  Damn!!!

Prayers for Nenek (Grandma)

My mum passed away on 28 September 2011 and the strange thing is Mikaail suddenly said he pray for "nenek".  He will be in this position whenever he wants to pray for nenek.  Such an angel!

XBox 360 Kinectimals

Just bought this Kinect CD last week and only opened it this evening.  Although I thought this CD might be good for Mikaail, I realise that he gets excited really easy and could result in him getting fits! 

So I am thinking of a swap.

Certificate of Achievement

I am so proud of Mikaail.  This year he received the Best Conduct certificate.  He is ever so polite and courteous though he is always teasing me.

Almost every day, he either tells me that "today mama in my heart" or "today mama outside my heart" especially whenever he is eating.  If inside his heart means he is prepared to share his food!  He is so cheeky as always too.

Sometimes he likes to call me by my name and other times he will call me mama.  Then he will go on to say, "Normah, no.  Mama" and when he wants to be cheeky, he will keep calling me by my name.  Whenever he does that, I will tell him that Normah is not in, sleeping or anything else except with him.  Then he will call "mama" - just so cheeky but I love him anyway!

Centre for Enabled Living @ Singapore Expo

Went to Singapore Expo this morning to find out what are the other the options available for Mikaail.  I am fairly familiar with what the Centre can assist the special needs person.  I had previously written to them for handicap carpark label as well as the levy concession for handicapped person. 

With more Singaporean aging, the Centre does show/connect you to the relevant bodies.  Previously, I had to surf the net to look for assistance as there was no particular place where you can actually walk in to seek assistance or enquiry.   According to the Centre representative, seems that if a child is born with disability, the parents are immediately directed to the Centre for assistance.

Through the Centre at the Expo, I found out that the Spastic Children's Association also has a Day Activity Centre which cares for adult handicapped person from 9 am to 4:30 pm!  The Centre representative asked us what are we going to do for Mikaail when he turns 18!  That's 5 years from now and he will be 18 sooner than we think!  So the Spastic Children's Association could of course be an option as he is a student for several years now.

We took a picture at one of the participating booth.  Cant recall which booth though!

MRT Ride on Friday, 18 November 2011

It was a pleasantly smooth trip for us today on the MRT.  Mikaail has 2 medical appointments: one in National University Hospital and the other in Tan Tock Seng Hospital.

For a start, I was unaware that the MRT station at NUH is now opened.  My husband, Alex, told me that the station at NUH should have been opened since the Circle Line is now opened.  As I am unfamiliar with the stations, I called SMRT to find out where I should board the trains.

The SMRT operator was quite helpful.  She told me from Woodlands MRT station, I would need to change trains at Jurong East then board the train bound for Buona Vista.  Then from Buona Vista, board the train towards Kent Ridge which is 2 stations away.  Total travelling time was barely an hour and this includes waiting and transfer time.  To board the train to Kent Ridge, we need to walk about for about 5 minutes from Buona Vista station.

As it was offpeak time, there was no rush at all.  The ride was absolutely smooth and manoeuvring in and out of the MRT was a breeze!  I just couldn't believe it.  The fare for each of us from Woodlands MRT to Kent Ridge Station is $1.89!  A taxi ride from Woodlands to NUH would have cost us a lot more!

And one of the other benefits for taking the MRT was there was no need to transfer Mikaail in and out of his wheelchair into taxis.

Gifts from Make-A-Wish Foundation

This wheelchair, 15" Miki Tilt-in-Space Reclining Wheelchair, is specially custom made for Mikaail, courtesy of the Make-A-Wish Foundation.  After his scoliosis operation in May this year, he needed better back support as the standard wheelchair would not be able to provide.   

More gifts: Sculptured balloons, towels and angry bird back pack

Make-A-Wish Foundation Party

Group photos taken at Make-A-Wish Foundation party which was held at the Grand Hyatt Hotel yesterday.  Very impressed by the warm reception given to the recipients and their families.  There were some games organised by the volunteers.

Left to right (back row)
Rose, Mummy, Jaye, Sin Ruey, Asmah, Andy, Mariah

Right to left (front row)
Firduas, Sarah, Mikaail, Elisa, Serena, Daddy

Left to right (back row)
Ain, Rose, Jaye, Elisa, Firdaus (partially hidden), Mummy, Daddy (partially hidden), Mohanty (therapist), Mariah, Asmah, Andy


Right to left (front row)
Sarah, Sarah, Mikaail, Firdaus

Mikaail eating rose apple

While I was sitting in front of Mikaail updating my blog, he suddenly reached out his hand and touched the fruits in front of him and asked me what it was.  I told him it's called rose apple (jambu air) and asked him to have a bite.  After his first bite, he said it's nice and he eventually ate about 1/3 of the fruit.  He usually eat fruits after some persuasion.  This time was more of an impromptu action.



Wish Come True

It was a rather spectacular event I must say of the Make-A-Wish Foundation party for the special needs children.  Each of the child has their own personalised board as shown below.

If I could really wish for Mikaail, it would be for him to at least be able to see again.  He lost his vision, I believe, due to negligence or insufficient medical care rendered to him by the doctors and/or surgeon during his initial operation due to haemorrage.

Despite the medical professionals assuring us that the eye nerve was "miles away", Mikaail still lost his vision!  What do they have to say?  Nothing useful and comforting!!

There were lots of food provided for all the guests.  Mikaail enjoyed his spaghetti with tomato sauce, french fries, chicken nuggets, sweet & sour fish slices.  I had seafood fried rice, fried baby siow pai chai, sweet & sour fish slices too.  

Special Angel sang by Mikaail Ermin Tan

This morning, before we set off to the Make-A-Wish Foundation party, I asked Mikaail if he was going to sing a song.  He gamely said yes and gave me 4 titles:

1. Special Angel
2. Hero
3. Banana Phone
4. Ring Ring

Told him to select only one and he said he wants to sing 4! 

This song, Special Angel, has some sort of an emotional attachment to me I find that it is a very meaningful song.  When we were at the Make-A-Wish Foundation party earlier this afternoon and with Mikaail singing this song, both daddy and mummy, suddenly overcome with certain unexplained emotion!

Mikaail's Hobby

When I previously spoke with Christine, from the Make A Wish Foundation, I told her how Mikaail loves singing and dancing.  Being severely handicapped, he sings in his own very special pronounciation and dancing by moving his left hand in various position.

I will usually log on to YouTube to sing with him several songs and one of the songs we will always sing is Special Angel by Bobby Helms.  I told him that he is my special angel when he was a baby and he will always be my special angel.  He usually tells me that I am in his heart but not when he has his favourite food ie half boiled egg and essence of chicken.  Then I will be out of his heart!!  Little rascal!!  When he is in the mood to tease me, he will call me by my name!

This is Mikaail singing at the Make-A-Wish Foundation party.  I am surprised that he is so relaxed and happy singing using the microphone.  As he has lost his vision, he does not know the number of people there  listening to him so there is no stage fright!! :)