Being SPECIAL ,...
- Thread starter angelmum
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cowandchick
New Member
City, Thanks for the page. Very small leh, I also quite blind (lao already).
Info about her condition, we have plenty already - 5 solid years of research, and still going on....!
Now, looking into her other needs, things we take for granted, but is so lacking in visually impaired children. Reading up about social skills, and daily living independent skills.
Because my girl is partially sighted, people, including myself (bad mummy!) sometimes forget and think she can see like other normal kids. A lot of things she can't pick up by watching and observing others, and has to be deliberately taught - intervention lor!
Yukee
Nice to have you back. Hope your kids better from the HFMD now! These germs, you never know where the kids get them from!!!
ValC
How about using syringe? Does it help?
When will you be able to take Ashley for a proper assessment? Knowing what is wrong will give you a peace of mind too!
Info about her condition, we have plenty already - 5 solid years of research, and still going on....!
Now, looking into her other needs, things we take for granted, but is so lacking in visually impaired children. Reading up about social skills, and daily living independent skills.
Because my girl is partially sighted, people, including myself (bad mummy!) sometimes forget and think she can see like other normal kids. A lot of things she can't pick up by watching and observing others, and has to be deliberately taught - intervention lor!
Yukee
Nice to have you back. Hope your kids better from the HFMD now! These germs, you never know where the kids get them from!!!
ValC
How about using syringe? Does it help?
When will you be able to take Ashley for a proper assessment? Knowing what is wrong will give you a peace of mind too!
valc
Member
cowandchick
my next appt with our gastro is on 5sep. long way from now. argh! he's on some course or exame leave or something. will talk to him abt running tests. i hope he's supportive. cos the last time he said dunnit to do tests or anything. all he did was put her prone and on back to pull her arms and kept saying she looks normal.
syringe also she doens't like. nor spoon. this morning she woke up b4 i got a chance to feed her and she had 0mls again!! argh!
my next appt with our gastro is on 5sep. long way from now. argh! he's on some course or exame leave or something. will talk to him abt running tests. i hope he's supportive. cos the last time he said dunnit to do tests or anything. all he did was put her prone and on back to pull her arms and kept saying she looks normal.
syringe also she doens't like. nor spoon. this morning she woke up b4 i got a chance to feed her and she had 0mls again!! argh!
cowandchick
New Member
ValC, Is Ashley grossly underweight? How about a nutritionist or dietician? Can they help assess?
City, does KKH have develomental clinic or something that Ashley can get help? Sorry, but I donno much about KKH.
I feel so pek chek for ValC and Ashley too... I wish something can be done, quickly! Urggghhh! Why is it so difficult to get help here for our kids!???
City, does KKH have develomental clinic or something that Ashley can get help? Sorry, but I donno much about KKH.
I feel so pek chek for ValC and Ashley too... I wish something can be done, quickly! Urggghhh! Why is it so difficult to get help here for our kids!???
valc
Member
cowandchick
that's the thing. she's not critically low in weight. but we really spend all our time feeding her by tap tap tapping the bottle while she jus swallows. and it's really a hit or miss kind of thing. if she's awake then she gets none. if she chokes while drinking in her sleep then that's the end of feed.
that's the thing. she's not critically low in weight. but we really spend all our time feeding her by tap tap tapping the bottle while she jus swallows. and it's really a hit or miss kind of thing. if she's awake then she gets none. if she chokes while drinking in her sleep then that's the end of feed.
valc
Member
city
dunno if you have come across this forum http://www.angelmanforum.org/. still browsing it...
dunno if you have come across this forum http://www.angelmanforum.org/. still browsing it...
Yukee - I MISS U
, now i know y u not in action!
cowandchick - pic small cos not allowed to load big big. u click save as n open elsewhere to view lah. Developmental clinic at KKH - PD will refer u to other clinic/lab where they felt applicable.
ValC - yes, that's the 1st site I came across when Sym diagnosed.
cowandchick - pic small cos not allowed to load big big. u click save as n open elsewhere to view lah. Developmental clinic at KKH - PD will refer u to other clinic/lab where they felt applicable.
ValC - yes, that's the 1st site I came across when Sym diagnosed.
valc
Member
city
do you know of chromosomal microarray analysis? do they do it here in singapore? is it another name for one of the tests you mentioned?
one more qn abt head control - was sym able to hold head well when carried upright at 3-6mths?
there's another(reflux) forum i read from where a mother of a 5yr old child has some symptoms of AS but cldn't get a diagnosis. they did a chromosomal microarray but apparently this testing is so new that they dun have enough data to compare their son's result with. they were asked to do the test again in 3-5yrs.
do you know of chromosomal microarray analysis? do they do it here in singapore? is it another name for one of the tests you mentioned?
one more qn abt head control - was sym able to hold head well when carried upright at 3-6mths?
there's another(reflux) forum i read from where a mother of a 5yr old child has some symptoms of AS but cldn't get a diagnosis. they did a chromosomal microarray but apparently this testing is so new that they dun have enough data to compare their son's result with. they were asked to do the test again in 3-5yrs.
ValC, <font color="0000ff">my answers</font>
FISH results to be false negative <font color="0000ff">negative means no 'defects' lor. There's another meaning to negative, it could mean the gene is negative, just like Blood group negative</font>
wat is UBE3? and DNA Methalation Analysis? issit blood or urine? chromosomal microarray analysis? do they do it here in singapore? is it another name for one of the tests you mentioned?
<font color="0000ff">not sure, u surf net for info. Sym had her blood n urine taken as well as CT Scan</font>
anyone else in singapore who has or has a kid with angelman syndrome? is there a support group here? <font color="0000ff">There r total 3 AS kids in sch. AS is VERY rare in Spore so no support grp. I chat with the AS mummies in sch and overseas thread. AS is a deletion of chromosome 15 fm mum. If it is fm dad, it is know as Prader-Willi syndrome. There are also many other medical conditions related to chro 15 http://ghr.nlm.nih.gov/chromosome=15/show/Conditions</font>
Sym able to hold head well when carried upright at 3-6mths <font color="0000ff">head not so soft when around 6mths</font>
5yr old child has some symptoms of AS <font color="0000ff">thot can be diagnosed, didnt know of this chromosomal microarray. Genetic test http://www.labcorp.com/genetics/basic_guide/index.html</font>
qualified in doing genetic testing <font color="0000ff">KKH and other pte do hv. KKH is Angeline Lai</font>
FISH results to be false negative <font color="0000ff">negative means no 'defects' lor. There's another meaning to negative, it could mean the gene is negative, just like Blood group negative</font>
wat is UBE3? and DNA Methalation Analysis? issit blood or urine? chromosomal microarray analysis? do they do it here in singapore? is it another name for one of the tests you mentioned?
<font color="0000ff">not sure, u surf net for info. Sym had her blood n urine taken as well as CT Scan</font>
anyone else in singapore who has or has a kid with angelman syndrome? is there a support group here? <font color="0000ff">There r total 3 AS kids in sch. AS is VERY rare in Spore so no support grp. I chat with the AS mummies in sch and overseas thread. AS is a deletion of chromosome 15 fm mum. If it is fm dad, it is know as Prader-Willi syndrome. There are also many other medical conditions related to chro 15 http://ghr.nlm.nih.gov/chromosome=15/show/Conditions</font>
Sym able to hold head well when carried upright at 3-6mths <font color="0000ff">head not so soft when around 6mths</font>
5yr old child has some symptoms of AS <font color="0000ff">thot can be diagnosed, didnt know of this chromosomal microarray. Genetic test http://www.labcorp.com/genetics/basic_guide/index.html</font>
qualified in doing genetic testing <font color="0000ff">KKH and other pte do hv. KKH is Angeline Lai</font>
valc
Member
city
thanks for your replies. i have made an appt with a neurologist in nuh. see if he can shed some light.
did sym take to the pacifier? any other signs i shld look out for? b4 i go for the appt.
i'm having so much difficulties feeding her milk it's so frustrating. did you manage to get enough milk into sym? did he feel hunger? i dun think ashley feels hunger or thirst. she always refuses to suck at all when she's awake. and when she's asleep i think she bites the teat too and hardly sucks much. the milk level goes down at a really slow snail pace.
thanks for your replies. i have made an appt with a neurologist in nuh. see if he can shed some light.
did sym take to the pacifier? any other signs i shld look out for? b4 i go for the appt.
i'm having so much difficulties feeding her milk it's so frustrating. did you manage to get enough milk into sym? did he feel hunger? i dun think ashley feels hunger or thirst. she always refuses to suck at all when she's awake. and when she's asleep i think she bites the teat too and hardly sucks much. the milk level goes down at a really slow snail pace.
Sym still hooked to pacifier for nap n sleep thru out the night. I dont mind as long as she sleeps well in the night.
I think nothing to lookout. Might want to prepare a list of findings/report - what happened during these 4mths.
I mentioned I gave supplements + enough solid. Thus, she is growing n putting on enough weight.
Hope somebody professional/experienced will be able to answer yr questions.
I think nothing to lookout. Might want to prepare a list of findings/report - what happened during these 4mths.
I mentioned I gave supplements + enough solid. Thus, she is growing n putting on enough weight.
Hope somebody professional/experienced will be able to answer yr questions.
Hi ValC, read through your posting, i understand your frustration and worries, cos it took us 1wk to get the result for Jiaxing's chromosomes test when she just born...i don't know how the week pass, i was crying everyday...although the result is kind of sad, but at least we know what should we do and where are we heading to...hopefully this is just a false alarm and your gal is just too lazy to suck the bottle...and you take care also...
valc
Member
yukee
i'm spoonfeeding her milk and cereal at least 1ce a day but v little cos she keeps spitting it back out. she still doesn't really qt know wat to do with the food in her mouth. and she doesn't really like it either. she fusses qt abit. i think she has no sense of hunger or thirst at all. how old are both your children now? how do you cope with 2? i'm so struggling with it. i miss my 2yr old.
i'm spoonfeeding her milk and cereal at least 1ce a day but v little cos she keeps spitting it back out. she still doesn't really qt know wat to do with the food in her mouth. and she doesn't really like it either. she fusses qt abit. i think she has no sense of hunger or thirst at all. how old are both your children now? how do you cope with 2? i'm so struggling with it. i miss my 2yr old.
ValC, Jiaxing is 28mths and the #2 is going to 10mths...i spend most of my time with #1 cos she is with me since born, i bring her everywhere i go, so is quite attached to me...when #2 came i tried to take care of both, but she quite angry with me, and make a lot of noise and do funny things make me angry, so i let the maid to take care of #2. Few months ago i start sending Jiaxing to childcare on the days she does not go to school, so have abit more time with #2...mayb Jiaxing development is slow, so found that #2 learn very fast, she can eat solid food very well at 4mths and can use straw to drink at 6mths...mayb some mummies think i 'da jin xiao quai', but to me i think it is a very big bonus for me...
valc
Member
yukee
eating at 4mths and using the straw at 6mths is really really fast! my 2yr old son only mastered the straw past 1yr old. i'm trying to feed my 4.5mth daughter semi solids now and i'm so struggling with it.
wow! you got pregnant when jiaxing was 9mths and had another bb when she was 18mths!! that must be tough. 18mths still qt young and still need alot of attention even for a child without special needs. i don't know how you do it cos i hate it now that i dun have any time for my 2yr old anymore. maybe i was meant to be a 1 child mother.
did jiaxing resist feeding as an infant? i dunno why ashley never wants to feed when awake. and can't really feed when sleeping either.
eating at 4mths and using the straw at 6mths is really really fast! my 2yr old son only mastered the straw past 1yr old. i'm trying to feed my 4.5mth daughter semi solids now and i'm so struggling with it.
wow! you got pregnant when jiaxing was 9mths and had another bb when she was 18mths!! that must be tough. 18mths still qt young and still need alot of attention even for a child without special needs. i don't know how you do it cos i hate it now that i dun have any time for my 2yr old anymore. maybe i was meant to be a 1 child mother.
did jiaxing resist feeding as an infant? i dunno why ashley never wants to feed when awake. and can't really feed when sleeping either.
Hmm...actually we wanted just 1 child, but because of Jiaxing's condition we decide to have another one to look after Jiaxing in case anything happened to us (we know is abit unfair to the #2 lar) and we want their age gap to be closer so the #2 come so fast lor...yar lah, abit tough, but lucky got a maid to help and she is like kids, so is ok lor...
When Jiaxing is a bb, she is drinking well, but almost half of her milk was on the hanki, cos mayb she quite weak to swallow. After her milk, usually she will throw out abit (sometime alot), even till now, sometime she will still throw out after her meal...i read from some website saying down bb stomach quite weak, can't digest very well, so i start her solid quite late...about 7 to 8mths...and cos i spoon feed her water and milk when she is small, so feeding solid is not quite a problem...
When she is small, she don't express her hunger also, i am the one who always watch out for the feeding time...only until recently she learnt sign language or probably she know what she wants, then she start asking for foods...
When Jiaxing is a bb, she is drinking well, but almost half of her milk was on the hanki, cos mayb she quite weak to swallow. After her milk, usually she will throw out abit (sometime alot), even till now, sometime she will still throw out after her meal...i read from some website saying down bb stomach quite weak, can't digest very well, so i start her solid quite late...about 7 to 8mths...and cos i spoon feed her water and milk when she is small, so feeding solid is not quite a problem...
When she is small, she don't express her hunger also, i am the one who always watch out for the feeding time...only until recently she learnt sign language or probably she know what she wants, then she start asking for foods...
cowandchick
New Member
Hi mummies
I think we're all guilty of spending more time with our special kid. I too spend more time with my girl. That's why even before he turned 2, I sent my boy to child care. It was heart ache for me at first, but I really needed the extra time with my girl. I need to go through her work wif her and teach her other skills - like braille - too.
Yukee
Jiaxing's sign language is it the same as the AUSLAN? or have they got different signs for down kids?
I think we're all guilty of spending more time with our special kid. I too spend more time with my girl. That's why even before he turned 2, I sent my boy to child care. It was heart ache for me at first, but I really needed the extra time with my girl. I need to go through her work wif her and teach her other skills - like braille - too.
Yukee
Jiaxing's sign language is it the same as the AUSLAN? or have they got different signs for down kids?
I agree with Cowandchick, the 1st few days i sent Jiaxing to childcare, it was like something missing the whole house was so quiet, donno what to do...
I am not sure what is the name of the sign language, her school is teaching the Australia version, think shd be the AUSLAN, but this year they dont really emphasize on using sign language, but i bought 'Baby Signing Time' dvds and a baby signing book, which is the US version. She enjoy the DVDs, cos has interesting songs and a lot of babies (she love babies)...now she follow the signs from the dvds and book.
I am not sure what is the name of the sign language, her school is teaching the Australia version, think shd be the AUSLAN, but this year they dont really emphasize on using sign language, but i bought 'Baby Signing Time' dvds and a baby signing book, which is the US version. She enjoy the DVDs, cos has interesting songs and a lot of babies (she love babies)...now she follow the signs from the dvds and book.
City, it is S$39.00/dvd, i bought 2 disc, i ever saw ppl organizing bulk purchase in this forum, donno now still have or not...and it also has to depend on Sym whether she like to watch the disc or not...cos last time Jiaxing don't really like it, she just walk away after watching for only a few minutes, we thought we have wasted the money, but recently donno why, she love it very much, everyday she request to watch it, cos she like to imitate the actions and sign from the baby in the disc...
I also use flash card with Jiaxing, even now i still buying new sets, actually i didn't flash that fast, i just tell her what is the item on the cards and if i have the actual thing, i show her the actual thing with the card and i found that flash cards had introduce many things to her...mayb you should continue using it...so funny today, my HB show her the flash card of button, she pull up her t-shirt and point to her belly button...haha...donno who teach her that...
I also use flash card with Jiaxing, even now i still buying new sets, actually i didn't flash that fast, i just tell her what is the item on the cards and if i have the actual thing, i show her the actual thing with the card and i found that flash cards had introduce many things to her...mayb you should continue using it...so funny today, my HB show her the flash card of button, she pull up her t-shirt and point to her belly button...haha...donno who teach her that...
russizebaby
New Member
Dear mummies,
I am currently taking a part-time Diploma in Early Childhood Education and I would like to have your responses to some questions with regards to children with additional needs in Singapore.
I would very much appreciate if you could go to http://www.singaporemotherhood.com/forumboard/messages/36738/933713.html?1188388132 to read the questions and leave a response for me.
Thank you very much!
I am currently taking a part-time Diploma in Early Childhood Education and I would like to have your responses to some questions with regards to children with additional needs in Singapore.
I would very much appreciate if you could go to http://www.singaporemotherhood.com/forumboard/messages/36738/933713.html?1188388132 to read the questions and leave a response for me.
Thank you very much!
valc
Member
hi mummies
i brought ashley to see a neurologist. he said that ashley has tongue thrusting and she is flexing her trunk part of her body alot. she moves her body alot always kicking and v active. not sure if this tongue thrusting is jus a baby reflex that she will eventually lose or is it something that is particular to her. and this body movement i thought all babies are jus this active. can't remember how my son was 2yrs ago already. he says she doesnt have angelman syndrome. but that there are 20 thousand over syndromes so there's no way we can know whether she has any of them or not. he says sometimes few yrs later some sympton or feature will show up and may be able to identify.
also dunno wat to make out of the neuro visit. whether it is good news or bad news.
wat the neuro said is also true. we can't keep feeding her in her sleep. but this seems to be the only option for us.
i brought ashley to see a neurologist. he said that ashley has tongue thrusting and she is flexing her trunk part of her body alot. she moves her body alot always kicking and v active. not sure if this tongue thrusting is jus a baby reflex that she will eventually lose or is it something that is particular to her. and this body movement i thought all babies are jus this active. can't remember how my son was 2yrs ago already. he says she doesnt have angelman syndrome. but that there are 20 thousand over syndromes so there's no way we can know whether she has any of them or not. he says sometimes few yrs later some sympton or feature will show up and may be able to identify.
also dunno wat to make out of the neuro visit. whether it is good news or bad news.
wat the neuro said is also true. we can't keep feeding her in her sleep. but this seems to be the only option for us.
Yukee - treat it as giving medicine
, k, will try yr 'prescription'.
ValC - humm Angelman very rare lah, yr child only tongue thrusting so ...... I also agree feeding during sleep no good. Furthermore, how u brush her teeth? Sym got 2 front teeth decay, was wondering to save $$ n her pain or pray hard the milk teeth will be loosen early. If extract, she needs to be under LA n the whole thing cost around $1k!
I understand your concern. Seeing child eat/feed on something is a form of achievement n 'relax feeling' cos child finally eating, wont be hungry n getting some nutrients but still a very bad habit. I regret not cleaning Sym's teeth cos I gave in to her - she made a fuss when comes to cleaning mouth with cloth when she was younger. I had to give a tight cross leg 'hug' b4 I'm able to brush her teeth these days. She'll scream, fight, cry, tried to wiggle out as well as bite my fingers but no choice ley. Hope to minimise the 'damage' to her teeth. A normal tooth drop is better cos usually quite painless! Quite worry of having sleepless nights cos she's in pain or cant eat properly. My friend said her friend bought her 3yrs+ child to NDC for extraction of 8 milk teeth ..... torture!!
ValC - humm Angelman very rare lah, yr child only tongue thrusting so ...... I also agree feeding during sleep no good. Furthermore, how u brush her teeth? Sym got 2 front teeth decay, was wondering to save $$ n her pain or pray hard the milk teeth will be loosen early. If extract, she needs to be under LA n the whole thing cost around $1k!
I understand your concern. Seeing child eat/feed on something is a form of achievement n 'relax feeling' cos child finally eating, wont be hungry n getting some nutrients but still a very bad habit. I regret not cleaning Sym's teeth cos I gave in to her - she made a fuss when comes to cleaning mouth with cloth when she was younger. I had to give a tight cross leg 'hug' b4 I'm able to brush her teeth these days. She'll scream, fight, cry, tried to wiggle out as well as bite my fingers but no choice ley. Hope to minimise the 'damage' to her teeth. A normal tooth drop is better cos usually quite painless! Quite worry of having sleepless nights cos she's in pain or cant eat properly. My friend said her friend bought her 3yrs+ child to NDC for extraction of 8 milk teeth ..... torture!!
valc
Member
city
when did sym lose the tongue thrusting?
wat has sleep feeding got to do with brushing teeth? i supp it'll be another 2yrs b4 syms milk teeth drop. but if it causes pain then extraction mt be the way to go.
yes, ashley doens't have angelman but we dunno wat is it she got. i think her feeding problem is a sign that something is not right. so we dun even know wat we are dealing with. meanwhile we jus have to struggle with the feeding now and deal with watever comes next time.
when did sym lose the tongue thrusting?
wat has sleep feeding got to do with brushing teeth? i supp it'll be another 2yrs b4 syms milk teeth drop. but if it causes pain then extraction mt be the way to go.
yes, ashley doens't have angelman but we dunno wat is it she got. i think her feeding problem is a sign that something is not right. so we dun even know wat we are dealing with. meanwhile we jus have to struggle with the feeding now and deal with watever comes next time.
cowandchick
New Member
Hi ValC
So sorry to hear that the neuro couldn't tell you what exactly is wrong with ashley. Let's hope she's able to outgrow it all!
Did they do any scan or any tests at all for Ashley?
Sleep feeding - can lead to milk carries = tooth decay! Lots of kids have this problem (including mine), who sleeps and drink milk. But no choice leh, don't feed cannot sleep!
City, any paediatric dentist can help Sym with her teeth? Can bring her anywhere to 'clean' or not?
Wah, extract 8 milk teeth, torture alright! Why your fren need to do that to the child?! Oh dear!
So sorry to hear that the neuro couldn't tell you what exactly is wrong with ashley. Let's hope she's able to outgrow it all!
Did they do any scan or any tests at all for Ashley?
Sleep feeding - can lead to milk carries = tooth decay! Lots of kids have this problem (including mine), who sleeps and drink milk. But no choice leh, don't feed cannot sleep!
City, any paediatric dentist can help Sym with her teeth? Can bring her anywhere to 'clean' or not?
Wah, extract 8 milk teeth, torture alright! Why your fren need to do that to the child?! Oh dear!
ValC
Tongue thrusting - doubt will go away. Like in born/tied with her syndrome, just like her exceptionally happy behaviour. The PD just tried FISH n hit answer 'luckily'. If we didnt get any answer, other tests will be carried out.
Toothless bb also need to brush/damp clean.
Cowandchick
PD dentist cant help cos she moves about so cant do normal extraction + injection nor cleaning. Got to go toothless if badly decay - now blackish!!
Tongue thrusting - doubt will go away. Like in born/tied with her syndrome, just like her exceptionally happy behaviour. The PD just tried FISH n hit answer 'luckily'. If we didnt get any answer, other tests will be carried out.
Toothless bb also need to brush/damp clean.
Cowandchick
PD dentist cant help cos she moves about so cant do normal extraction + injection nor cleaning. Got to go toothless if badly decay - now blackish!!
cowandchick
New Member
I admire your perseverence, City. I guess there's really no easy way with such kids. Was just talking to another lady the other day. Her girl had brain trauma (i think). She accompanies her daughter to school (she goes SSVH) everyday, and waits for her. The girl is now 14 years old! And she says she can't imagine a day without her girl!
Cleaning teeth
I wonder how other parents get their kids' teeth cleaned then. You asked around at Sym's school? What do they advice?
Oral Hygiene is also a potential problem for the visually impaired. Can't see their teeth mah. So Have to teach my girl how to do it properly. All this while I thot she's ok, until the dentist called me the other day! What a bad mama I am!
Will Occupational Therapist help? I am looking for one.
Cleaning teeth
I wonder how other parents get their kids' teeth cleaned then. You asked around at Sym's school? What do they advice?
Oral Hygiene is also a potential problem for the visually impaired. Can't see their teeth mah. So Have to teach my girl how to do it properly. All this while I thot she's ok, until the dentist called me the other day! What a bad mama I am!
Will Occupational Therapist help? I am looking for one.
valc
Member
city
i dun have a problem with cleaning her gums and palette. i usually do it at bath time cos that's when she will open her mouth(she enjoys bath). but the feeding is jus a nitemare. she will struggle, cry, scream, turn her head left and right, push away. it's like we r giving her poison or drowning her or suffocating her. she really really hates it. it's for both bottle feeding and solid feeding. i'm worried becos i'm afraid she's not taking in enough. if we give in to her and stop feeding her, her nutrition and weight gain will be affected. if we persist on feeding her then she'll be very upset and will be more averse to feeding. so it's v hard to strike a balance. actually the neurologist suggested tubefeeding so avoid any contact with the tongue and mouth in the hope that she will lose the tongue thrusting if there's no stimulus. but when we asked him wat is the success rate he said so-so only. anyways if we can avoid tube feeding we will.
i wish it was the case that she felt hungry and want to eat or drink but it's jus that she's not good at it. but she doesn't even want to, she hates it and we have to force it down on her. that's why we do it in her sleep.
my gynae told me to get a chromosome culture done through blood so screen for any chromosome disorders. she told me not to do the FISH cos that's qt specific and costs alot. i will check with the gastro on the next visit.
i dun have a problem with cleaning her gums and palette. i usually do it at bath time cos that's when she will open her mouth(she enjoys bath). but the feeding is jus a nitemare. she will struggle, cry, scream, turn her head left and right, push away. it's like we r giving her poison or drowning her or suffocating her. she really really hates it. it's for both bottle feeding and solid feeding. i'm worried becos i'm afraid she's not taking in enough. if we give in to her and stop feeding her, her nutrition and weight gain will be affected. if we persist on feeding her then she'll be very upset and will be more averse to feeding. so it's v hard to strike a balance. actually the neurologist suggested tubefeeding so avoid any contact with the tongue and mouth in the hope that she will lose the tongue thrusting if there's no stimulus. but when we asked him wat is the success rate he said so-so only. anyways if we can avoid tube feeding we will.
i wish it was the case that she felt hungry and want to eat or drink but it's jus that she's not good at it. but she doesn't even want to, she hates it and we have to force it down on her. that's why we do it in her sleep.
my gynae told me to get a chromosome culture done through blood so screen for any chromosome disorders. she told me not to do the FISH cos that's qt specific and costs alot. i will check with the gastro on the next visit.
valc
Member
this teeth cleaning thing - i realise its really like potty training. u jus got to do it early b4 they become too smart. i started brushing my son's teeth when he was really really little like when he had 4 teeth mebbe 7mths. so he's used to it and doesn't reject it so much, now he will even brush his own teeth. i have frens who potty train their child really early like as soon as they begin to sit unassisted. whereas i did not. till now my son is not potty trained and when we try to put him on the potty he will scream the whole house down. so i think the key really is starting early.
toy_collector
Member
yukee- i think u really take a bold decision to have no.2..i wish i can convince my relative to have another..but i think it is once bitten twice shy... the child is confirmed autistic but they still cant accept it.. me too..i wishing that with therapies his condition will improve..
cowandick- saw your entry in another thread- are u going to accampany your hubby overseas? i would love to live abroad too..
cowandick- saw your entry in another thread- are u going to accampany your hubby overseas? i would love to live abroad too..
cowandchick
New Member
hi toy collector
I did accompany my hb when he was in England for 18 months. It was the most beautiful time of our lives - before the kids came along!
Next year I'll be going Sydney for my course, and am undecided over which kid to take with me. Don't think hb can manage with 2 on his own. My girl would probably benefit from going with me, as I may be able to enrol her in some special prog for the visually impaired there. But my boy is still young, and we'll miss each other terribly! Sigh ... how, like that?
I did accompany my hb when he was in England for 18 months. It was the most beautiful time of our lives - before the kids came along!
Next year I'll be going Sydney for my course, and am undecided over which kid to take with me. Don't think hb can manage with 2 on his own. My girl would probably benefit from going with me, as I may be able to enrol her in some special prog for the visually impaired there. But my boy is still young, and we'll miss each other terribly! Sigh ... how, like that?
toy_collector
Member
hmmm cowandchick it going to be tough but i have 2 colleagues who did that- they left child behind n went to do their masters...one her gal was only 3 and she say now that her gal is 11 can still rem that mummy left her behind... maybe u can either bring both or bring none and asks hubby to bring them to see u in your school hols or their school hols.. cos i think it can be exp for the kid's education in oz.
i look up to u that u always seem to be learning some thing u should get an award for lifelong learning n upgrading..
i look up to u that u always seem to be learning some thing u should get an award for lifelong learning n upgrading..
cowandchick
New Member
hi ValC
My boy is 28 months old. He's the normal one (keep fingers crossed). My girl is visually impaired.
My boy is 28 months old. He's the normal one (keep fingers crossed). My girl is visually impaired.
toy_collector
Member
cowandick- is the course u pursing related to helping special needs children..
i really wonder any one of u knows which support group or information can shed more light on autism? is it more advanced in America?
i got a colleague who rec GEMS ( gym type of therpy plus using stroking of different objects like cotton wool, brush etc)..this is based at Lakeside Family Service Centre..
i wish to know also whether in singapore do autistic kids can be exempted from NS?
i really wonder any one of u knows which support group or information can shed more light on autism? is it more advanced in America?
i got a colleague who rec GEMS ( gym type of therpy plus using stroking of different objects like cotton wool, brush etc)..this is based at Lakeside Family Service Centre..
i wish to know also whether in singapore do autistic kids can be exempted from NS?
cowandchick
New Member
School hols are over, and I'm back, full force again!
Ya, my course is related to special need kids, but specifically for visually impaired children. So, City, that answers your question too.
No need to go for general special needs education overseas coz offered here in Singapore, and lots of teachers already. Presently here, no one specialises on education for visually impaired kids!
Autism - there is the ARC , Autism Resource Centre, started by the now MP Denise Phua. Her work over the past 10 plus years! I heard it is quite comprehensive and informative. Maybe you can find out more, toy collector. Not sure about their website tho. Will try and check it out.
This GEMS therapy, is it for Sensory Integration Disorder, or the likes? Heard of it before.
Depending on how severe the autism is, the kid may or may not be fully exempted. My fren's son, with Asperger's Syndrom just completed NS. He was with the non-combat unit, basically office work. Fortunately his mates are quite kind, and took care of him for the entire NS period. His parents are relieved he's survived it all. The boy is now at NTU doing an engineering degree!
I would like very much to take my girl with me to Sydney during my course. There's a special school there for visually impaired kids, and they teach them all sorts of things. Will probably take leave from her school for a while to go there. School how? - Heck to the school!
I think there's too much emphasis on academic work without much thinking. I can't really be bothered anymore. I can easily coach her at home too. Besides, thanks to the Compulsory Education Act here, which does NOT cover disabled kids, my girl doesn't need to go to school, and no one will care, anyway! SH** to them! (Sorry!)
My course only 1 1/2 years, part time. Can't wait to get started tho! Have been reading up a lot already to prepare myself. Then don't have to slog like mad when term starts!
Agree with City. Having special kids means spending more $$$. Just getting a calculator for my girl for next year already cost a bomb. Normal ones, max $60. Her talking type - US$250! And we do not qualify for any subsidy! Keep spending like that, no need to eat already!
Ya, my course is related to special need kids, but specifically for visually impaired children. So, City, that answers your question too.
No need to go for general special needs education overseas coz offered here in Singapore, and lots of teachers already. Presently here, no one specialises on education for visually impaired kids!
Autism - there is the ARC , Autism Resource Centre, started by the now MP Denise Phua. Her work over the past 10 plus years! I heard it is quite comprehensive and informative. Maybe you can find out more, toy collector. Not sure about their website tho. Will try and check it out.
This GEMS therapy, is it for Sensory Integration Disorder, or the likes? Heard of it before.
Depending on how severe the autism is, the kid may or may not be fully exempted. My fren's son, with Asperger's Syndrom just completed NS. He was with the non-combat unit, basically office work. Fortunately his mates are quite kind, and took care of him for the entire NS period. His parents are relieved he's survived it all. The boy is now at NTU doing an engineering degree!
I would like very much to take my girl with me to Sydney during my course. There's a special school there for visually impaired kids, and they teach them all sorts of things. Will probably take leave from her school for a while to go there. School how? - Heck to the school!
I think there's too much emphasis on academic work without much thinking. I can't really be bothered anymore. I can easily coach her at home too. Besides, thanks to the Compulsory Education Act here, which does NOT cover disabled kids, my girl doesn't need to go to school, and no one will care, anyway! SH** to them! (Sorry!)
My course only 1 1/2 years, part time. Can't wait to get started tho! Have been reading up a lot already to prepare myself. Then don't have to slog like mad when term starts!
Agree with City. Having special kids means spending more $$$. Just getting a calculator for my girl for next year already cost a bomb. Normal ones, max $60. Her talking type - US$250! And we do not qualify for any subsidy! Keep spending like that, no need to eat already!
<font color="0000ff"><font size="-2">Having special kids means spending more $$$. Just getting a calculator for my girl for next year already cost a bomb. Normal ones, max $60. Her talking type - US$250! And we do not qualify for any subsidy! Keep spending like that, no need to eat already!</font></font>
no choice hor, unless want our kids to rot at home
no choice hor, unless want our kids to rot at home
