Thursday, November 30, 2006
BUT I MUST!!!!!!!!!!!
Saturday's coming. The children's charities walkathon. Hope the weather will be good that day.
Christmas is less than a month away. My grand-nephew will be born before Christmas and my friends want to come over and pay us a visit.
So I better clear all my things....feel so lazy. The cough medicine is making me so drowsy. I slept for almost 2 hours just now while Jonathan watched Wheel....yes...he's been watching.
Yesterday 'gaited' (is there such a word?) his legs and made him stand for 15 minutes. Tiring for my back too but more tiring for him.
Found a CP Fitness centre that offers therapy through wearing a suit. It's called Suittherapy. www.suittherapy.com. Seems quite good but have to go to USA. Too bad they are not near where Arina and Sal's families are. Otherwise, we can bunk at their homes during summer and go for the therapy as well. 3 week intensive course for Jonathan and myself will probably cost more than $10K. This have to consider....finance. If we are staying in USA, there will definitely be financial aid without questions asked.
Oh well....will see where God leads. I"m still praying about this and doing more research.
Wednesday, November 29, 2006
Jonathan was good. He layed on the mat and watched his wheel of fortune while I entertained the children. It happens you know....when there are guests, your child gets left alone....especially when I'm alone and I can't get him involved.
Jonathan was happy watching wheel. I started babysitting around 7.30pm. The guests didn't leave until around 11pm. At 11.30pm I was clearing the place up. Then I saw Jonathan drooling excessively. I asked him if he wanted milk before he slept, he said 'yes'.
Then it dawned on me....
I haven't given him his milk feed scheduled at 10pm....OH MY GOODNESS!!!!!!!!! His last feed was at 7pm so he hasn't had anything for 5 hours!!! I usually give him some water in between but in the midst of entertaining the kids, I totally totally forgot.
H, who after sending the guests off, asked, "You forgot to feed Jonathan?"
I looked at him and said calmly, though angry, "Don't start".
H didn't say a word. I guess he decided not to blame me cos I was watching over his nieces and nephew. I was angry becos I forgot to feed Jonathan. I felt so guilty and sorry that while I fed him, I kept apologising.
So...how forgetful can a person get? In my case, it was NO EXCUSE! Next time, I better set the alarm clock if I have a big group of people at my house.
Monday, November 27, 2006
Asked him what he was doing, he said he was singing. Asked him if he was singing a Christian song or other songs, he said Christian song. Then I asked if it's a song we knew, he said 'no'. So I finally asked him...is it your own tune? He said 'yes'.
Our young son just composed his own music. Haha. You should see the expression on his face when he was singing....cringing his face here, laughing there, eyebrow frowning when he went high notes. So cute.
If only we knew what he was singing....
Saturday, November 25, 2006
Last week, while changing his diaper, I told him that if he needs to change diapers in future, he should call me and touch his diaper.
Tonight, while he was watching TV, his diaper got detached at the velcro. He was so excited over the Wheel of Fortune game. He moved alot and the fastener came off.
I think he called me but I didn't hear. I happened to look at his direction and he was looking at me, touching his diaper. Since H was near I asked him to check. True enough, the diaper was not fastened.
I'm proud of him for achieving this. I hope in a while, he will tell me if he needs to pee or poo.
GOD IS GREAT!
Thursday, November 23, 2006
You see...we have been embroiled in a "sage" for quite a while. Got myself involved, got myself worried and got myself anxious about everything. At the same time, felt very lowly about certain issues. Got calls from him, got calls from the victims, got calls from all over. So...when you receive so many calls, who do you listen to? I got played - this is how I felt....but not by the innocent 2 who were with me.
Worst is that I went along with the play. Got myself into trouble a couple of times. My fault - didn't listen to God's prompting.
Now that it's over, I have to move on. But somehow I felt that if a person has no qualification, does that mean that the person cannot deal with issues at hand? I suppose we who don't have high education see things differently. Maybe we can call ourselves streetsmart or "disability-smart"...haha. I mean...when you don't have a high education, does that mean you can't be wise to solve things? I got this vibes when I talk to C a couple of times and I felt very foolish after talking to him. Perhaps I was being too sensitive.
I didn't like it but I suppose I dug my own grave...
So last night, with a heavy heart, I told God that I don't feel good. It hurt and it didn't have to in the first place. Then when I opened the bible, a passage from Acts 9:36 struck me.
"Now in Joppa there was a disciple named Tabitha (which translated in Greek is called Dorcas); this woman was abounding with deeds of kindness and charity which she continually did."
Well...she died and those whom she helped called Peter to pray for her and she rose from the dead and continued her ministry. They loved her for helping them, making clothes for them. I don't think she was a highly qualified woman. I believe she did this from her heart, with God's love embroidered in the items she gave to the widows and needy.
I cried after reading this passage. There was some kind of relief.
I finally decided that I can do this without a title. I can do this even though I'm not highly educated. I can continue to help, spread love, encourage those who need them the most, even without being in a committee. So long as God sees it, and use it to His glory.
BUT I'M NOT BLAMING ALL DEGREE HOLDERS OR ANYONE WITH HIGH QUALIFICATIONS. I'M NOT LOOKING DOWN AT THEM. THEY ARE GREAT PEOPLE WHO HAVE DIFFERENT PASSIONS IN LIFE. THIS IS MY EPISODE AND I JUST HAD TO WRITE IT DOWN TO GET IF OFF MY HEART.
So I'm going to set myself free from all these. After my last assignment in the committee, that's where i will fly. Be free to do whatever I think is necessary, help whenever I'm needed...but more wise in my decision.
One important lesson I learned throughout the whole "saga".....
SILENCE IS GOLDEN. BUT GOD'S PROMPTING AND WISDOM ARE MORE IMPORTANT.
Wednesday, November 22, 2006
It will start with a Walkaton from 8.30 to 10.30am. Each participant pays a registration fee of $20 in which they would sponsor one of our disabled client (either a child or adult client) to walk with them. This would create bonding and allowing the participants to mingle with our clients and get to know them better and the challenges they face.The walk is about 2km starting from Civic Plaza and follows the following route:Civic PlazaUp Orchard Road to Tanglin MallCross over to Singapore Post BuildingWalk back down Orchard Road to the Thai EmbassyCross the road to Wheelock PlaceWalk back down to Civic Plaza
The Carnival will start at 11am till 9pm at the Civic Plaza. There will be stalls selling food, drinks, handicrafts and game stalls. All purchases made at the carnival would be in the form of coupons. Each coupon ticket is divided into $1 and $2 coupons. This is because all transactions at the Carnival are coupon based.
Mrs SR Nathan is our Guest Of Honor for that day. Mediacorp Channel 5 is also promoting our Carnival on TV and are considering bringing down the Singapore Idols to participate in our Walkaton and Carnival.
Pray for God's protection over us, families and friends.
I used to be afraid that Jonathan would leave me...I don't know why...maybe it was because when he was young he was always in and out of hospital. But now...I'm not afraid anymore. God has big plans for Jonathan and us...AMEN!
Keep confessing PSALM 91. It's for protection against everything!
HE WHO DWELLS IN THE SECRET PLACE OF THE MOST HIGH
SHALL ABIDE UNDER THE SHADOW OF THE ALMIGHTY
Will bring Jonathan out for lunch with his grandpa and grandma. Maybe grandma works today but his cousins will come along. Jonathan is normally the quiet one...actually...most of the time...haha. While we eat, he will listen to his cassette player...taped wheel of fortune for him.
Wheel of Fortune...he cannot miss them. Teacher and myself gave him a sign language name. We use the sign language "J", that's the little pinky writing a "J" sign. So we use the "J" sign and we make circular movements implying the wheel.
Since his recovery from flu, he hasn't been out of the house so he's quite happy when he found out we were going to Parkway Parade. Maybe we'll go to the new bookstore Harris at Marine Parade Central. I'm sure he will have a good time walking around.
God is with us everywhere we go!
Tuesday, November 21, 2006
He asked me if he could put in my blogsite and I said ok. But then I realised that I have NEVER written or explained anything about cerebral palsy (CP) in my blog. People who come to my blog will only get to read about Jonathan, my gripe, my daily notes...and much much more. So paiseh...have child with CP still don't write what CP is...hah!
Anyway, CP is so broad. Found this at www.cerebralpalsy-info.org and thot better put it down so people will know the different types of classification...Now I can safely tell Jeremiah I got information about CP in my blog...haha.
Causes and Types of Cerebral Palsy
In the case of Cerebral Palsy there is no one cause of this severe condition. There are many things that may increase the risk of this condition but will not cause cerebral palsy all the time. In the majority of cases and average of seventy percent, it results from brain injury before the child is even born this is known as congenital cerebral palsy this would be present from birth but may take months even years to diagnose depending on how severe it illness is. There is also a chance of acquired cerebral palsy which could happen through there being a case of meningitis or brain injuries.
Below are some factors that can increase the chances of cerebral palsy. None of the above will definitely lead to cerebral palsy. Before birth: Prematurely, long difficult labor, lack of oxygen to the child, Bacterial infection of the mother during birth, low birth weight, severe jaundice, viral, diseases in early pregnancy, attack of the child?s central nervous system, lack of oxygen / nutrients from the placenta to the fetus and incompatible blood types between the mother and child. After birth: Viral encephalitis, brain tumors, head injuries and Meningitis
Cerebral palsy is broken down into three main types: Ataxic cp, Athetoid cp, Spastic cp.
Ataxic CP - this is the rarest of the three and occurs when the cerebellum has been damaged this part of the brain controls balance. It will be difficult fop the child to coordinate their movements and they will have problems below with balancing.
Along with the three types of cp some children will have a combination of them all.
Athetiod CP - This type of cp occurs when the basal ganglion has been damaged and as a result causes involuntary, uncoordinated and uncontrolled movements of the muscles. This causing uncontrolled and jerky movements as well as twisting of the fingers and wrists may affect all limbs. When walking, it will tend to cause the child to stumble with poor coordination. (This is Jonathan's diagnosis)
Spastic CP - This type of CP is the most common of the three it occurs when there has been damage to the cortex, which is the part of the brain controlling thought movement and sensation. Causes mainly tightness of the muscles, in both the arms and legs of the inflicted. The arms will tend to be flat against the side of the body with the hands bent up against the forearm. Depending on the damage the legs will either be greatly effected or only mildly it may be only slightly obvious that there is a problem when the child walks or in worse cases both legs are affected and they will be crossed with the toes pointing. If the muscles are not exercised often enough this can cause the child to become wheelchair bound.
Jonathan has been left alone for the last few days cos I was busy with the matter. But he's been very patient with me even though he'd just recovered from flu. God is good 9-) He healed Jonathan before the meeting so I'm thankful. Also glad H supported me. Gave me encouragement by giving me a listening ear.
All glory to the Lord. Now, I have to put my concentration on Jonathan....who has been 'talking' alot lately.
Perhaps a miracle is coming....he'll wake up and say "MOMMY WAKE UP!!" That would be a wonderful gift!
It's coming...I believe it...
Monday, November 20, 2006
Hope they received the reward they deserve from the school. They did a good job on the documentary.
Nadia was afraid we would forget them so she sent me this picture.
Who can forget this 3 bubbly personalities! I believe they will go far with everything they do!!
Monday, November 20, 2006
“We will find grace to help us when we need it.” Hebrews 4:16 NLT
God’s help is timely. He helps us the same way a father gives plane tickets to his family. When I travel with my kids, I carry all our tickets in my satchel. When the moment comes to board the plane, I stand between the attendant and the child. As each daughter passes, I place a ticket in her hand. She, in turn, gives the ticket to the attendant. Each one receives the ticket in the nick of time.
What I do for my daughters God does for you. He places himself between you and the need. And at the right time, he gives you the ticket. Wasn’t this the promise he gave his disciples? “When you are arrested and judged, don’t worry ahead of time about what you should say. Say whatever is given you to say at that time, because it will not really be you speaking; it will be the Holy Spirit” (Mark 13:11, emphasis mine).
God leads us. He will do the right thing at the right time.
Thank you Lord, this is what I needed today.....
Tomorrow big day for me. Either I make or break it. Praying for God's wisdom. Lesson learned...SILENCE IS GOLDEN!!! Got myself into trouble today. People asking me to be neutral but I'm thinking....you also don't sound neutral...so how? Arrows shooting at me. Only people I share with knows what I'm talking about.
So....lets see how tomorrow goes.
DO NOT WORRY ABOUT TOMORROW FOR TOMORROW GOT IT'S OWN WORRIES. 8-)
Finally got a call to say a copy of the documentary has been left in school for me, plus the awareness posters. I'm so happy. I told Nic that I hope it would be translated into chinese so that non-English speaking public/parents/care-givers can watch too. Also eager to find out public's response.
I'm so lazy I don't feel like doing anything. Just surf the net, read lots of emails and talk to Jonathan. When papa returned from work, Jonathan was talking so much that he told me he was telling his papa what happened today. Basically, nothing much was done today for him too....haha. He just kept talking non-stop...so cute. Makes me so proud of him for holding a conversation with his dad with his ooohs and aaahhs and bbrrss.
I LOVE HIM VERY MUCH 8-)
After a few minutes later, the phone rang again. Picked up and the same voices. I got annoyed and spoke loudly over the phone: "YOU CALL AGAIN I'M GOING TO ASK THE POLICE TO CATCH YOU!!!"
The phone never rang again for the rest of the night......
This happened last week too. The kids, I don't know if they are the same, called twice and I hung up the phone twice.
Didn't mean to scare them....can imagine their reaction upon hearing the "POLICE" word. haha. I wonder if their parents know what they are doing? I remember when I was young I did it once but didn't do it again. These children might even dial an overseas number and then would rake up a huge telephone bill for their parents.
But then again, to children, if there is no childish pranks,....what is childhood then? Hahaha
Sunday, November 19, 2006
Well....he did have difficulty sleeping bcos of his blocked nose and I was coughing away with him. Normally I wear a mask when I'm not well but I didn't think it was serious...wrong thinking!!!
Seeing dr cost money but at least better than having him stay in hospital like before. But when you think about it, when Jonathan had to stay in the hospital, we got to use medisave and didn't have to pay a cent upfront...8-)
This reminds me of the topic about the MP setting up a parents workgroup to help families with special needs children to raise trust funds. What happens when we are gone and our children are left behind?
I read that MINDS is starting this trust fund and each family has to come up with S$5000 upfront for the committee to help them invest. I haven't really read the full story but I believe this is what was said in the news on TV last month or so.
S$5000....upfront....that's quite a lot of money. Not many people can come up with so much money at one go. Most of us can't even afford to come up with a small sum of S$500.
An insurance agent from NTUC Income once approached me about buying insurance for Jonathan. I turned Jonathan towards her and asked if they have policies for special needs children. She was kind enough to make enquiries for me. When she called me a week later, she told me that yes, they can insure Jonathan but the monthly premium would be more than S$150.
So what was my decision? Keep the money and use it for Jonathan's milk supply, gauze for his feeding button, diapers and transport fees....spread out evenly, top with some cash for each item....
Two months ago, his feeding button was almost torn into two. Had to bring him to KK A&E bcos the surgeon had already left the clinic and it was after 5pm. I had to go to A&E otherwise if the button broke into two, the other part will stay in the stomach and they would have to cut Jonathan just to remove the damaged button.
The surgeon wasn't sure how to charge the button. They debated with the Medical Examinar. Told me that if I had come before 5pm, the charge would be different. I felt like strangling the surgeon....HOW WOULD I KNOW?!? THIS COULD HAPPEN ANYTIME!!! #?!%$....
But in the end, they say the button itself cost S$450. That was the A&E charge. My friend's son had his button changed during office hours. How much did she pay? S$190 for the button. So....what's the moral of the story? To keep cost down, check the feeding button every now and then and don't wait till it's about to break...8-(
I'm not alone in this. Most families in our school do face this problem. Jonathan will have his teeth cleaned next month. Total cost is probably going to be more than S$500. This is becos he has to sleep for his teeth to be cleaned as he struggles alot and can't be done that normal way. They will apply a sealant to each of his molars to prevent decay. That alone is S$25 per molar and he has 4. I think the bulk of the cost is the 'GAS' used to make him sleep. Just take a few deep breath and it cost a few hundred bucks....haha. Thank God oxygen is free!!!
The social worker at KK said since my husband earns more than S$2000 a month, we are not entitled partial medisave usage. I wrote to my MP asking if she could help me - to allow me to use medisave. Till now, she hasn't replied my email. Her website says "Write to me and I'll answer your queries as soon as I can"....that was about more than a month ago. My friend suggested I go to Mr Goh Chok Tong's constituency to seek help, it will produce faster results..haha
Well....we scringe a little, budget a little and we still get by. We give up some luxuries, we receive lots of help from families and friends and we still get by.
Why? Because we trust in our God Almighty...He provides when you least expect it. He has a treasure storeroom for us to tap on. He sees what we need and provides.
I am probably one of the few who gets alot of support from families and friends and I'm VERY VERY thankful to God for them. I'm not writing about all these to garner for money. I'm writing just to show how families with special needs children cope. I've seen families who can't afford and yet still very happy with what they have.
I hope that wth this new workgroup, more help will be given to families with special needs children/adult to take care of.
Saturday, November 18, 2006
Don't know to feel elated or just...don't know...
I remembered someone wrote on a forum website for special needs...I think it was a petition about Singapore government raising medical fees. He or she said that we should have aborted our children and not let them be born and waste government's money.
So how do I feel about this? Some people might think..."What's the point of showing a disabled child? This parent not shy meh?"
But what is important - Let the world know that there are special needs people out there. Most of us didn't get into this by choice. My case was a mishandled case. Some children born normally contracted meningitis later, had high fever...how do you explain that?
Let the world know that we need help. Whether we earn more than $2000 a month doesn't mean that we don't need financial help. Let the public be more aware that special needs, whether young or old, need to go out and enjoy themselves instead of being cooped up at home. Let the people know that God is constantly in control.
Now I'm looking forward to the documentary....I'm not happy because we'll be show-cased. I'm happy that I know something positive will come out of this. Something positive too look foward to.
The documentary....MY SON JONATHAN....26th November, Sunday at 6.30pm on channel 5.
Friday, November 17, 2006
You can leave the teaching and training of your children to the teachers....but don't do this when there's fun time. If you don't want to do it, just disappear and don't help yourselves to the food!!!!!!
Buay Tahan!! God forgive me....
No lesson, no homework, no therapy, nothing today. Everybody busy with preparing for Graduation Ceremony tomorrow. 28 graduating. Wish them all the best wherever they are going. Hopefully some will gain employment.
Spoke to 16 year old Benedict yesterday. Said his teacher brought him to Subway for interview at Jurong Point. He'll be working in the kitchen. Hope this vacation job will give him more confidence to mix around in society.
Don't know any plans yet. Go out also have to spend. But there's a Children's carnival on 2 December. Heard from Jeremiah that they are planning to sell greeting cards to raise funds for SCAS. Must support!!
Jonathan got a DVD- Movie 'Cars' from a producer in Mediacorp. Today shared it with his friends and they enjoyed the show. Even Jonathan watched it....something quite new to me. But Mohd sat next to him and kept Jonathan in track, made sure no noise came out from him...hah.
Finally finished the 2nd vcd for the kids. This one includes the Singapore Idol footages.
Have an important meeting coming up with parents and Chairman. Must remember to be impartial....Lord give me wisdom.
Thursday, November 16, 2006
It's really a small world. The person from the bank is Ronald Tay. He works in UBS Ag, a swiss bank and I used to work there too, under the Personal Assistant of the CEO.
I heard he offered Mr Wan's friend a job. So I wrote to my friend at UBS and told her about it. The bank has actually adopted SCAS and that's why they were hoping to show the documentary to the staff, to motivate them to donate. 8-)
My friend said "Ronald liked the documentary and said it was touching and I was represented as a v strong mum!"
They haven't seen the weak and fierce side of me yet!! Hah! I should have told Nadia to put in segments of me disciplining and scolding Jonathan!!!
Well....as least the documentary did help bring people together and good things like above happened. Hope it will be used to greater heights!
I need grace and wisdom from the Lord!!!
Year end coming already still can't settle.....sigh....when are they ever going to stop?
Hopefully next year will be better. Can't afford to have good people go.....
Sunday, November 12, 2006
CNA did an interview and here's their article:
MediaCorp Channel 5 Cares raises cerebral palsy awareness through documentary
MediaCorp TV Channel 5 Cares hopes to raise public awareness of cerebral palsy through a documentary called "My Son, Jonathan".
There are about 500 children with cerebral palsy registered with the Spastic Children's Association of Singapore.
This medical condition affects the brain and causes the child to lose control of speech and body movements.
The 17-minute video is shot and produced by nine students from the Singapore Management University and Ngee Ann Polytechnic.
It features the story of Ms Serene Ho, a full-time caregiver to her 9-year-old son, Jonathan, who has cerebral palsy.
The project took one-and-a-half months to complete and is part of a series of efforts to showcase the challenges faced by families whose children have cerebral palsy.
As Ms Ho puts it: "Accept who we are. You can look but don't discriminate us or don't make us feel like we're a different type of people. Just accept us as ordinary citizens."
Nadia Samat, Director of the documentary, said the crew followed Ms Ho and Jonathan around for a couple of days.
"The part that really hit me - there was this shot that I really really like - it was a very simple shot where Serene was gently putting on socks for Jonathan. You can tell they really have a bond," she said. - CNA/so
Pictures will be posted soon.
Friday, November 03, 2006
We were all assembled in the school hall. Hady sang You Give Me Wings (his winning singles) and after that Joaqim played the keyboard and they sang 2 children's songs.
They had Singapore Idol notebooks to pass out and also a Singapore Idol strap for the children.
Jonathan was overwhelmed. His class and a few other children were picked to receive gifts from the singers.
Jonathan's present came from Paul Twohill. A funny guy who tried to make Jonathan laugh. But he made alot of effort to communicate with Jonathan, asking him if he (Paul) is handsome, does he like chicken rice, etc. Jonathan answered by using his 'yes' and 'no' signs.
Paul gave Jonathan Spongebob and he said he like it.
We also took pictures with other singers.
(Click on pictures for larger image)
Jonathan with Jasmine (extreme left)
Jonathan together with Jonathan Leong (Idol runner up), Si Pei, Paul (left)
That's him with Emily (left)