Introduction + child's Medical condition

[ping26]

Hi quvette

I'm surprised the PD and medical social worker haven't referred baby Zav for early intervention.

I think the Spastic School and Rainbow Centre provides early intervention for infants below:
The Spastic Children's Association of Singapore
www.[B]rainbowcentre[/B].org.sg/

You do a self-referral or get the following agencies to refer you to a suitable EI ctr
a) The Centre for Enabled Living (Home),
b) medical social worker from govt hospital.


>Does not recognise caregivers, not even parents. Does not even recognise milk bot.
>Does not turn to sound though he pass hearing test.
>Does not show excitement to toys or kids or anything.

Some babies with cerebral palsy appear to be unresponsive, not because they don't recognise people or objects. It is because they can't move their muscles well enough to respond.

If he feeds well, it indicates facial muscles are less affected by CP. You can try massaging his face along "muscle lines" to stimulate them.

Other fun things :
-stimulate Zav with noisy toys, moving toys or toys with flashing lights
- sing & touch him at specific parts of body

Other possible (useful) programmes for kids w CP:
Glen Domann style of behv patterning (try to consult a PT to get specific advice)

I think Zav is really too young for doctors to judge whether he can learn to walk, etc. Early Intervention before 1 year old is VERY impt.

I hope Zav get a place at EI ctr soon.

Otherwise, I believe epicurean mummy has a fantastic PT for her little boy. Lost the contact. Maybe you try to PM her.


:wong19::wong19::wong19: Ping

 

[quvette]

Hi Ping,

Thanks for replying. The last visit Zav had with his neonatologist at KK was in early sep. This is the first time she saw him since his discharge from special care in April and after looking at him, told us that they din expect his problem would be so 'bad' at the point of discharge. But we had been bringing up at every monthly visits that something is not quite right about him but we were always dismissed. She did not tell us what her 'bad' means and told us to wait and see again. We were referred to PT at KK which I did not find very useful. Once in three weeks Appt and nothing much is done during the sessions. We r going to cdu at JMC. Is that EI?

Saw a private neuro who gave us the brain damage, CP and CVI verdict. Our world crashed. Picking ourselves up now and constantly tell ourselves not to look at what he can't do but focus on wHat he can do now and possibly in future and work on that. Hubby and I now need parental counseling of such.
Any idea who we can go to?

Not sure if he's really feeding well. He had a cold and mild cough since last
week. Then we notice that after feeding he will start coughing very violently but not much cough at other times. Not sure if that is do to the weak oral muscles.

Talking about Glenn doman, does it really work? Read his book on WTD and agree with his concepts. Talked to the PT at KK who do not believe and said his treatment is not accepted by the mainstream. But who cares so long as it works but my question is , does it really? So far I have tried putting him on tummy time as much as he would allow me, that's only total 30 mins a day max.


So many questions.... So much unknowns.... We are totally lost

 

[Angelmum]

We noticed something is not right when he was about 3.5months but our concerns had always been dismissed and given the 'wait and see advice'. Just found out how 'special' he was 3 weeks ago. My husband and i are still grieving. Guess we have went thru the stage of denial, anger and is alternating between bargaining and depression now. Hope to lift ourselves out of these stages and move on to acceptance. Glad my hubby introduced me to this site where i could vent and hopefully find resources for us to move on to acceptance.

We discovered abnormalities when my girl was 4mths (very wobbly). At six mths, DRs at KK were still telling us not to worry, some children r just slow. Till 11 mths old, they finally agreed I was not over-worried. :nah: Trusting mummies instinct and experience to some DRs in KK were unacceptable cos we r questioning their 'medical profession'! KK ran tests n dropped us a birthday bomb with a diagnosis of Angelman! :elvis:

I hope this site would give you some support/reference ... otherwise, just vent yr frustrations. you r most welcome to do it!

No treatment plan, nothing offered but just told us to accept the reality. We are lost, confused and do not know what to expect. Met a development Paed from NUH CDU who adviced me to get a quick referral to her from polyclinic. Did that and the appt is next week.

Dr also plays a part in yr enrolment to EIPIC - Rainbow Centre, including in-house therapies while waiting for enrolment into special school.


Hates tummy time but can stay on tummy time with head up and support his upper body with his forearms for up to 10min each time now. (Was only able to manage about 1-2mins 2months ago). Does not push up on extended arms yet.

Does not roll, even from side to side.

Hates the sitting position as his hips and legs are very stiff. Will scream if you force him in that position. Tried to tripod him in a sitting position last week and he managed to sit unsupported for a minute if he does not move.

Stiff legs and hands. Fists are often clenched but do release when we touch his fingers. Stiff as a board during bath time but do not dislike bath.

Keep yr tummy routine & massage/stretching, it is good as per good's course.
Takes time, mine achieved rolling over after almost age 2. Google Youtube which has some good videos.
Mine enjoys bath time or anything associated with water play.


Track objects occassionally if we move them in front of him. He starts tracking when he was almost 6months.

Does not look at faces. In fact he avoid eye contact. Started to notice ppl moving around him recently. His eyes are always roving but not sure if he interprets what he's seeing.

Does not recognise caregivers, not even parents. Does not even recognise milk bot.

Mine couldn't track at this 'early age'. After receiving therapies, she could .... then we realised she had severe astig which could be the cause of her eye issue.


Does not turn to sound though he pass hearing test.
Mine has super sharp ears which made sleeping a problem cos she wakes up when I was just merely scratching my arms.


Does not show excitement to toys or kids or anything.
ENT/Eye clinic may find the cause at later stage.... think after 1 yr old.

I think Zav is really too young for doctors to judge whether he can learn to walk, etc. Early Intervention before 1 year old is VERY impt.

Totally agreed!
Ping

Our world crashed. Picking ourselves up now and constantly tell ourselves not to look at what he can't do but focus on wHat he can do now and possibly in future and work on that. Hubby and I now need parental counseling of such.
Any idea who we can go to?

Believe most of use felt that. We took quite some time to pick ourselves up, surf net, ask around like for help like headless mosquitoes .... once you get yr referral to Kandang Kerbau Hospital/NUH, Dr can refer you to social worker for counselling. Otherwise, ask for referral to join Club Rainbow - it has parents support grp for special needs, as well as organising outings. DRs also play a part in yr enrolment to EIPIC - Rainbow Centre, etc.


Talking about Glenn doman, does it really work? Read his book on WTD and agree with his concepts. Talked to the PT at KK who do not believe and said his treatment is not accepted by the mainstream. But who cares so long as it works but my question is , does it really? So far I have tried putting him on tummy time as much as he would allow me, that's only total 30 mins a day max.

you can read my posting on good Here.

 

[quvette]

Hi angelmum, tks for your advice too. Would like to understand more about the vision therapy. Are there trained vision therapist in singapore ? We know there is PT for gross motor function , OT for fine motor delays and speech therapist for feeding and language development. But no one ever mention to us the availability of vision or hearing therapist for other sensory issues.

Really hope to do something about the vision as we think it is very vital for further development. The PT at KK kept telling us to encourage him to roll with toys at his side. But prob is, if he can't see how can we interest him ever to do so? Pointed that out to her but she seem clueless and just tell us to 'interest him with toys at the side' again. Very textbook answer. I'm losing confidence in them. Shouldn't the child's sight be taken into consideration when recommending therapy?

 

[ping26]

Hi Ping,

We were referred to PT at KK which I did not find very useful. Once in three weeks Appt and nothing much is done during the sessions. We r going to cdu at JMC. Is that EI?

Not sure if he's really feeding well. He had a cold and mild cough since last week. Then we notice that after feeding he will start coughing very violently but not much cough at other times. Not sure if that is do to the weak oral muscles.

Talking about Glenn doman, does it really work? Read his book on WTD and agree with his concepts. Talked to the PT at KK who do not believe and said his treatment is not accepted by the mainstream. But who cares so long as it works but my question is , does it really? So far I have tried putting him on tummy time as much as he would allow me, that's only total 30 mins a day max.

Hi quvette

EI at Rainbow Ctr is usu 2x, 3x or 5x per week. I'm not sure abt Spastic School but it shouldn't be once every mth. Zav will get to see a special edn teacher and PT regularly & ST (may be irregular).

Cough after feeds, lung infections, frequent fevers may indicate aspiration due to swallowing/feeding difficulties. If he has a cold that preceded cough, then it could be just that.

A good PT will recognise many stretching & positioning exercises in a "GD" program. I'd advise you get a good PT, read abt "GD" from the internet.

A "GD" or conductive training program may instruct parents to position child in roll position (bended thigh & elbow) and do repeated reps with free arm to simulate roll movement. Similarly, a toy may be placed within reach, parents have to do rep with arm to "simulate" reaching movement. (got to do with neuron activation, range of motion, etc... can't remember now)

Vision therapist - I know of a contact who works with persons with visual impairment/low vision. But they usu work with materials/exercises that are not suitable for an infant.

Most good EI programs involve sensory-motor development.

Visual tracking exercises usu involve attracting the infant's attention using toys with certain colours, movement, sounds or lights, then making him track from left to right, vice versa. If there are eyesight problems (which affect visual acuity), then toys with both flashing lights and sounds eg fire engine, will be doubly safe. A yelping moving toy puppy may work too.

A special needs infant who is in pain may be more anxious. He will need assurance (more kisses, smiles, cuddles & songs) to help him know how to show excitement and love & affection.

I'm glad that you found the NUH PD. Hope you find some answers and get real help there.

praying for strength & peace for your family

take care!

 

[Angelmum]

Hi angelmum, thanks for your advice too. Would like to understand more about the vision therapy. Are there trained vision therapist in singapore ? We know there is PT for gross motor function , OT for fine motor delays and speech therapist for feeding and language development. But no one ever mention to us the availability of vision or hearing therapist for other sensory issues.

Really hope to do something about the vision as we think it is very vital for further development. The PT at KK kept telling us to encourage him to roll with toys at his side. But prob is, if he can't see how can we interest him ever to do so? Pointed that out to her but she seem clueless and just tell us to 'interest him with toys at the side' again. Very textbook answer. I'm losing confidence in them. Shouldn't the child's sight be taken into consideration when recommending therapy?

I've no contacts on vision therapy. In Rainbow Centre, the sch decides how often a child shld rec therapies but often, due to shortage of manpower, they would sacrifice some students. In KK, they also do the same thing. If you keep pushing, they may give you therapy 2x per month.

btw, this forum has an auto correct feature. If you see weird words that doesn't fit into the sentence, it is the result of this unfriendly feature. Eg, G D =Glenn Doman, not 'good'! :001_302:

 

[epicurean]

We were referred to PT at KK which I did not find very useful. Once in three weeks Appt and nothing much is done during the sessions. We r going to cdu at JMC. Is that EI?

Hi quvette,

Welcome to the forum ... Just to address your questions about early intervention programmes ... referrals to hospital rehab centre(s) are usually for 'ad hoc' issues or to act as a transitory point for the child (waiting for placement in special schools) to receive therapy.

My son has been seeing the NUH OT & ST since he was 5 months old while waiting for a place in a special school (also referred by his neuro). OT sees him once every 2 weeks while I would make appt with ST as & when he has feeding issues. He has weekly sessions with PT in private practice coz gross motor skills are the most important for him due to his severe level of disability. Besides, the hospital PT told me she was too scared of his condition and didn't know what to do with him, so no help from that quarter. Anyway, he has finally gotten his place in EIPIC in his special school, starting next year so he won't be seeing his current OT and ST when the year ends. Kinda pity coz his current OT is pretty good and very pleasant.

Early Intervention Programme for Infants and Children (EIPIC) are conducted in special schools with a team of special ed teachers, therapists etc. You can check out the website for Centre for Enabled Living for more details.

 

[earthliving]

I've no contacts on vision therapy. In Rainbow Centre, the sch decides how often a child shld rec therapies but often, due to shortage of manpower, they would sacrifice some students. In KK, they also do the same thing. If you keep pushing, they may give you therapy 2x per month.

A volunteer vision specialist goes to Rainbow centre once a week. She also works with CVI kids. You should enquire about it. I'm sure she'll see your kid when enrolled there. You can email her at thetinyseed@hotmail.com
Cheers,

 

[quvette]

Hi mummies thanks for all your helpful advice. Been really busy and sick lately. Guess everything is wearing me down emotionally, physically and mentally.

So last fri we saw the paed from CDU at JMC. She's pretty sure my boy has mod cp at this point. We are given referral to opthalmo, neuro, PT, ot, eipic and speech therapist. Totally overwhelmed with the activities but at least someone recognize that my boy truly need help and not 'wait and see'.

Feeling really emotionally unstable lately seeing my 7 months old who do not respond to us at all. We can jump around, dance around, sing to him and he can look through us like we are not there. No smile, no reaction. Will he ever know we are his parents? Can he feel our love? Is it visual impairment? Is it cognitive impairment? Is it hearing impairment? Is it autism? What is it? What's happening? What would happen in future?

Earthliving tks for the contact. I'll try rainbow but would the volunteer entertain us if we contact her direct ? Dr says that there's a long waiting list and might be a few months before we get a place in EIpic. I'm desperate to do anything, everything for my baby.

 

[epicurean]

Feeling really emotionally unstable lately seeing my 7 months old who do not respond to us at all. We can jump around, dance around, sing to him and he can look through us like we are not there. No smile, no reaction. Will he ever know we are his parents? Can he feel our love? Is it visual impairment? Is it cognitive impairment? Is it hearing impairment? Is it autism? What is it? What's happening? What would happen in future?

Hi quvette,

I'm sorry I can't offer you the direct answers that you seek. What I can share is that if my boy (now 2.5 years old), who has severe CP in terms of severe physical (including visual) & cognitive impairment (he's very low-functioning, high dependency), recognises & realises we're his parents and feels our love, your baby has the potential to improve and develop.

My boy was non-responsive during the first nine months ... he was locked in his own world and nothing we did could engage his attention or senses. But we persisted with whatever we learned from his therapists and he gradually started to respond and even widen his repertoire of responses. For instance, he would smile once in a while when he saw me ... he gradually smiled more frequently ... now he smiles each time he sees me. He also chuckles, laughs & babbles to me and has differentiated cries about his various needs. Sometimes he still slips into his own world so it's an ongoing process to keep him engaged. His PT admitted to me that he has exceeded her expectations coz when she started seeing him at 5 months, she found him so disabled that the aims were to minimise deformities and maintain whatever improvement he could make. Now when he's prone on his tummy, he kicks his legs to flip himself over - a common action for most kids but a huge achievement for him.

If asked what has worked for my boy, I would say finding the suitable type of early intervention (certain types of therapy are not beneficial coz his muscles are extremely spastic & tight so being too aggressive could harm him instead), sustaining the routines & exercises, having a strong family support system, not giving up on him & myself and above all, looking past my son's multiple disabilities to see my son.

Please take good care of yourself ... keeping you, your family & especially your baby in our prayers.

 

[quvette]

Hi quvette,

I'm sorry I can't offer you the direct answers that you seek. What I can share is that if my boy (now 2.5 years old), who has severe CP in terms of severe physical (including visual) & cognitive impairment (he's very low-functioning, high dependency), recognises & realises we're his parents and feels our love, your baby has the potential to improve and develop.

My boy was non-responsive during the first nine months ... he was locked in his own world and nothing we did could engage his attention or senses. But we persisted with whatever we learned from his therapists and he gradually started to respond and even widen his repertoire of responses. For instance, he would smile once in a while when he saw me ... he gradually smiled more frequently ... now he smiles each time he sees me. He also chuckles, laughs & babbles to me and has differentiated cries about his various needs. Sometimes he still slips into his own world so it's an ongoing process to keep him engaged. His PT admitted to me that he has exceeded her expectations coz when she started seeing him at 5 months, she found him so disabled that the aims were to minimise deformities and maintain whatever improvement he could make. Now when he's prone on his tummy, he kicks his legs to flip himself over - a common action for most kids but a huge achievement for him.

If asked what has worked for my boy, I would say finding the suitable type of early intervention (certain types of therapy are not beneficial coz his muscles are extremely spastic & tight so being too aggressive could harm him instead), sustaining the routines & exercises, having a strong family support system, not giving up on him & myself and above all, looking past my son's multiple disabilities to see my son.

Please take good care of yourself ... keeping you, your family & especially your baby in our prayers.

Hi Epicurean,

Thanks for sharing. I've read about your little angel and the trials that you have been through. It has definitely not been easy and your strength has been an inspiration to me.

You are right that responsiveness will improve. He's smiling more and seems more comfortable with those of us who spend time with him - myself, DH, maid, my in laws and sister in law(DH's sister). He starts to look at faces but usually look at our forehead or hair not our faces. NO eye contact yet but at least he does not avoid us all the time now. Occasionally he will laugh, not for long but its good enough. Most of the time though, he's always fussy especially if we try to do therapies on him.

I was at rock-bottom lows the last few weeks. His cough is still not resolving and we have seen a pead repiratory specialist who suspect that it might be the reflux bothering him. She's a nice doctor and told us he needs a lot of help and will benefit from multiple specialty - GI, Neuro, Eye, ENT, Respiratory, PT, OT, ST etc. Then i asked her which month of development she would put him in and she said about 3months (He's coming to 9 months soon). I know he's delayed but hearing that still hurts....a lot. Saw my PT just this week, nice lady too, and asked why there's no formal assessment of his current developmental status and she told us she does not wish to upset us with the assessment. Told her to be truthful about where he is now and she said 3-4months too since he's not even rolling and is uncoordinated in his movement. Hurts badly.

 

[earthliving]

Earthliving tks for the contact. I'll try rainbow but would the volunteer entertain us if we contact her direct ? Dr says that there's a long waiting list and might be a few months before we get a place in EIpic. I'm desperate to do anything, everything for my baby.

quvette, you can try to contact the vision teacher directly at thetinyseed@hotmail.com All the best!

 

[Yukee]

Hi Angelmum, rae...how are you and your angels? it's being a long time since i last came here...recently quite busy with Jiaxing, she is doing her IQ test this April and i was doing all i can so that she can get more than 50 and improve her social behavior, so she is able to get in the ASPN school.

Recently feeling quite down, cos alot of negative comments about her progress...althought i know her progress is not up to their standard and i also dont expect her to go to a mainstream primary sch, but still feel sad when teachers give negative comments.

Sorry to all...just want to release some stress here...^^

 

[Angelmum]

Hi Angelmum, rae...how are you and your angels? it's being a long time since i last came here...recently quite busy with Jiaxing, she is doing her IQ test this April and i was doing all i can so that she can get more than 50 and improve her social behavior, so she is able to get in the ASPN school.

Recently feeling quite down, cos alot of negative comments about her progress...althought i know her progress is not up to their standard and i also dont expect her to go to a mainstream primary sch, but still feel sad when teachers give negative comments.

Sorry to all...just want to release some stress here...^^

It's alright to release some stress, rather than bottle up and make yourself more miserable/internal injury!

I've just hit 1 year of employment, enjoyed a surprise pay increment ... no way to match my old pay but I'm still delighted to see adjustment. Enjoy working in this company and hope my New Year wish to get a good helper (maid) would come true. So tired of combing almost the whole of Spore to find a helper who can't accept DD, help me & my princess.

Frankly speaking, I've no work stress, all my stress comes from the agency & maid .... so hard to find a helper with the mentality to work properly. I hate being a trainer, train one after another yet must pay them high & unreasonable salary, fed our govt with levy, fed the agency with agency fee, etc .... I guess my health is having a outbreak (fell ill frequently) cos helpers these days can't work, have their own mood, unable to take an employer who shouts or corrects them even if they were obviously in the wrong ... sigh, end up with internal injuries. PAY TO SUFFER. Govt not helping me/parents with special needs, they felt I've over-exaggerated! I wrote in to CEL & MP to request for a multiple disabilites daycare centre but was brushed aside. Don't know how long I can tahan this kind of 'being neglected citizen'. If things (eg maid) do not turn well, probably I'll become a homemaker again to make my family qualify for their subsidy (with T&C).

Lots of complains ....Back to your topic, no doubt I didn't go school but I'm aware school has lots of changes that doesn't benefit my princess. Previously, she had once a week 1-1 session (10mins, so miserable) with teacher to do work time such as focus on her fine motor skills but ever since she moved upstairs, they changed the program. The class now focuses on mobility ie moving from one room to another, eg watch teacher show them daily living (ADL) --> see how teacher startup the PCs and then take turns to touch the special needs mouse for 5mins --> go 'marketing' (pretend to transact in a school-made mini-mart) --> multi-sensory or class activities.

I dont see DD having improvement. My ex-maid was in a class where she could watch the teacher and then she get home to revise. Current class is just to past time, my current maid doesn't know what to do. Even if I demonstrated to her, she didnt' feel necessary cos teacher didn't act as role model.

Hope u could get your wish granted by entering ASPN. I guess if DD can go MINDS, her progress would be better than at Rainbow. Too bad MINDS are for higher functioning so certaining won't allow DD. Can Jiaxing go MINDS?

 

[Yukee]

Hi Anglemum...so you are working already, good for you family...yes nowadays is quite difficult to find a good maid, not to say a maid that are willing to look after a special need. I terminated my maid contract last year...one thing is to save $$ also...Rainbow had increase JX fee so much last year, so we thought let the maid go we will have more $$ to spare. So I have another job title, which is full time maid.

This year JX is attending 3 days class, which is Mon, Wed & Fri, so I change her to pm session and morning she attend her K2 class. This year she got individual PT and group OT...as for SLT she is with Kandang Kerbau Hospital and she still can't say more then 3 words sentence.

I am sure Rainbow will recommend her to MINDS, but i would like her to go APSN, cos they have academic subjects. Actually she is ok with academic subject, i sent her for English tution, she can read, write and do spelling. But all this had to depend on her mood...cos as she grow older she become more & more stubborn until sometime i also "boey tahan" and she wants to do things her way, if she is happy she can do alot with the tutor, else she dont't even write a word and we waste 1hr there, same things happen in school. Actually the EIPIC program head already hint me, she say JX should go to school with small groups teaching where teachers can focus more on them.

Her classmate had done the IQ test already, the psychologist told the mother, for kids who dont't talk or dont't cooperate, they will try a few time then they will skip the question, that means kids like JX will get lower marks, cos she can't speak and dont't cooperate most of the time...so i have to pray hard ...hope her assessment day she is in super good mood.

 

[utpai]

Hi Angelmum,

Totally understand your frustration on maid's issue.
My maid of 5 years suddenly told me her intention to quit as she wanted to go back study. As she just renewed her contract not long ago, it came as a surprised to us.
She has been a good and caring maid for my gal. Everyday without fail, she will start doing some therapies with my gal at home if she's not in sch. We are kind of reluctant to let her go.
Now, worried new maid might not be as caring as her and all the retraining stuffs. With Indonesia's maids salary now increase to $450, it really puts a burden on us financially.
Like you, I'm thinking of resigning and take care of her myself. But have some worries whether am I making the right decision in terms of financial stability. sigh.........really at a loss. :nah:

 

[Angelmum]

Hi Yukee

I really dont't want to leave my present job but dear daughter comes 1st so if MOM stays on with their over-protective rules and regulations on maid and left me (Employer) all alone, eventually forced me to stay home again and rely on their miserable and inflexible subsidies, then they can't turn the tables to say I'm not trying to earn for my family, depending on govt-the easy way. I tried many times to get help to handle maid and agency related issues but were totally ignored. Do you know that when you send email to MOM, they just copy a standard answer which is totally not related to your questions? Do you know I've wrote to MP & Ministers and what I got was just a courtesy call to find out whether I'm almost dead or still surviving somewhere in Spore? Govt/MOM simply can't be bothered with children like ours who're unable to contribute to Spore economy, a total waste of govt funds.... plain sore-eye human beings. As long as there're people feeding them with levy, they auto-translate their rules and regulations are perfect, I'm just the odd one or minority trouble-maker.

Special education eg EIPIC is expensive here. In fact, almost everything related to our children are not cheap. Many foreigners cant believe this when I talked to them about dear daughter. They said in other countries, people with disabilities are well taken care of. They received so much assistance. After being a special needs parent for 8 years, I conclude Spore is a cold-blooded country. Govt didnt take the lead to show more understanding and provide suitable/relevant support, how to expect others to follow or try to understand & help us .... most people felt we've magnified our problems. We thought sending our children to special school is to learn but non special needs parents didn't know govt-funded special schools are just a place for most people to kill time. You want something better, pay more, get private lessons! Everything is $$!


If APSN is really better then MINDS, I do hope one day your 'silence' JX can do something different ... better than other dear son ...JX could read and write so people not just could understand her, they might be able to offer her a job in the future and be independant.

If dear daughter knows how to take care of herself, read and write, not totally relying on others, I would be able to die in peace. I'm serious... she is the main reason why I kept pushing myself to stay alive. Few days ago, Sengkang has a case of mother suicide and murdered her son with mental issue + last year another, a man jumped down from a flat after killing his disabled son and left him in a Copthorne Orchid Hotel..... Frankly speaking, no parents would want to hurt their own children. They were just forced into this. If they had a better choice, easily available, no strict terms & conditions, would they want to be labelled 'Murderers'? As they aged, they worry who's so selfless and kind to take care of their disabled/special needs children. Not sure how much other people or govt view these 2 real cases but to me, it is just how people used their lives to prove people with disabilities were abandoned, as long as you are alive - learn to stand on your own feet, don't be naive and expect people will go soft on your plight! If they were born rich, I suppose such problems won't surface (money makes the world goes round) but how many special needs families in Spore are really rich - have sufficient money to last a life time?

click

My point of view may seemed pessimistic but this is something the govt forced me to .....wake up, stop daydreaming and thought help is on its way. Help is not meant for people who can't contribute. Either I strike TOTO and have a fund for dear daughter during my absence or taking things in my control ... In short, die in peace together so that there's no more worry of our children being ill-treated, etc.... when we're gone.

Although lives are precious but are the lives of special needs people and their families precious?

Sorry, my post may have spoilt your days but I'm just feeling so depressed with whatever is happening lately.

 

[Angelmum]

Hi utpai
You had been blessed with 5 good years..... envy! Hope our voices/maid woes are heard SOON. I suppose most would like to take care of their own children but Spore's standard of living is simply too high for just one breadwinner. As I'm now working, I (my household) ended up as a sandwiched class. The recent 'goodies' announced were just smoke ... flew passed but didn't benefit/affect me, even though govt stressed on looking after the middle-class. Most of my salary is being used on the maid and agency so if staying home is going to end my misery of feeding those blood-sucking people, I would resign.... a painful decision but we/I really have no choice.

I wish maids are like Hong Kong, only allowed one employer when they are recruited there, experienced (trained by Spore employers for at least 2 years) and lesser problem. If maids fail to work in HK according to job description, employers can fire them and dont have to pay additional. Maids are not allowed to transfer, they have to leave HK.

Maids nowadays have been encouraged to job hop so that agencies can grow fatter (leech). Having a maid with proper work ethics is fat-hope here, chances are too slim. Even though we paid, I mean out from our pockets (salary, levy, a proper place to stay, agency fee, etc)... we actually matched the salary scale in HK but dont understand why the quality we get are so lousy. Blame who, MOM! Maid agencies are mushrooming, they find Spore pro-maid policies benefit their pockets. Eg, Agencies can suka-suka increase pay and yet maintain poor quality maids with no actions taken by MOM. The capital is not too high and the returns are fast and high.

I didn't request to hire maid, I wasn't given another alternative. It took me & my hubby 5 years to force ourselves to take the other card ...The cards on our table were 1) work but must employ maid as there's no daycare centre or relatives willing to help. 2) dont work, be a homemaker and look everywhere for subsidy in order to survive in Spore ... be a perfect cheapo. I dont have the luxury of being waited by my helper as I worry DD might be abused when I'm not at home.

Give yourself 2 tries (hire maid), if both attempts failed then no chance got to resign and live a thrifty life.... I've no chance to go for overseas vacation ever since I had DD due to tight financial issues.

 

[Angelmum]

New centre aims to be hub for autistic care

my paper, Wed, Mar 30, 2011


AONE-STOP centre dedicated to the educational and training needs of autistic children, youth and adults was officially opened by President S R Nathan yesterday.
The St Andrew's Autism Centre (SAAC), which started operating in 2005, is now located at its new premises in Elliot Road.


Construction took 17 months, and the centre cost $23.7 million to build. Government funding amounted to $17 million, and the centre has since raised about 90 per cent of the remaining costs.

Explaining the six-year wait for its permanent premises, SAAC chief executive John Ang said: "It was such a big project and it needed several layers of approval."
The 2.2ha facility brings together SAAC's special school, which was previously located at the St Andrew's Community Hospital in Simei, and the Day Activity Centre (DAC), which was located at a void-deck unit in Bedok South.

The sprawling centre, which holds 15 blocks, boasts a slew of facilities.
These include mock-up flats for family-living skills training, a sheltered outdoor hydro-therapy pool, and art, music-therapy and dance rooms. There is even a clinic on the premises.

A pet enclosure, playground, as well as landscaping plans to beautify the grounds, such as the planting of fruit trees, are also in the works.
With these facilities, SAAC aims to provide a one-stop hub catering to autism care for people aged seven to 55 years old.

The centre has a maximum capacity of 400. It currently has 95 students at its school and 29 youth and adults at its DAC. Looking beyond those with the developmental disorder, the centre is also extending a hand to caregivers, providing support and counselling services.

In his speech at the opening ceremony, President Nathan stressed the need to care for people with special needs and to reach out to those who are less fortunate.
"Even as Singapore progresses, we have to be always mindful to leave no one behind," he said.

 

[Ashy]

dear all,
I am new. I have a 4.5 yo girl attending AWWA and a playgroup. She has a chromosome microdeletion. She can walk and eat (swallow very slowly, depending on mood) but cannot speak and write yet. She is due to take a IQ test in 2013. Can parents share whether there are anything parents can do to help her prepare for the IQ test?

I was told that her schooling options would be narrowed as she is not verbal and not writing. hopefully she can improve her fine motor skills next yr.

thank you!