This is a discussion on Introduction + child's Medical condition within the Parenting Special Needs Child forum, part of the MummySG Special Group category; Hi uddermummy, It does help a lot if bosses are understanding and support your leave application without penalising your future ...
It does help a lot if bosses are understanding and support your leave application without penalising your future work appraisal.
Btw, hope you managed to read the section on lifestyle changes to cope with infant GERD on that website I told you about. There are 14 tips which are very useful and workable ... made baby more comfortable and enabled him to sleep longer. Plus I think there's a list of food to be avoided if you're breastfeeding.
Yeah I understand your fear of getting help which is not patient and caring towards our babies who are more needy and 'demanding'. I also had bad experience with confinement nanny and previous maids. Current maid is our 3rd one and so far she's pretty ok. Previous maids either got scared of my baby's condition or became yaya, feeling they were indispensable coz they think they can handle him. Took us quite a while before we found current maid whose attitude and work is good.
Most important is that you need someone trusted to supervise maid/nanny ... my gut feeling is always that coz hired help is not blood kin, their patience will run out eventually esp with my baby who needs a lot of effort & attention in settling him. That's why I moved back with my parents coz mother in law refused to help supervise maid. She couldn't accept his condition and wanted to outsource his care to the confinement nanny (whom she wanted to hire on a long term basis) without her having to supervise the nanny. Hubby & I refused ... so we moved back and I took extended NPL.
You mentioned that your dear daughter is attending Rainbow Centre. Which programme is she in?
We've in the queue for EIPIC since last Sept but so far, no vacancy.
We applied to Margaret Drive coz closer to where we're currently staying. Plus baby seeing physio therapist & osteopath at Biopolis so we chose to keep things within roughly same location. He also seeing occupational therapist, speech therapist, docs & dietician at NUH so looks like everything will be around west area.
Maybe they felt yr kid still young .... maybe they really no vacancy, suggest wait for vacancy cos MD teachers are better than Yishun. If you dont mind pte sch, there r some in the West.
fyi, attending Rainbow doesnt mean they will provide weekly therapies so would advise you carry on even after you got a place. Wait till sch able to fulfil you & yr child's needs then you stop Biopolis. Otherwise, get referral to Kandang Kerbau Hospital/NUH via polyclinic, cheaper, about $23-33/0.5hr.
Last edited by Angelmum; 25-05-2009 at 08:50 PM.
Thanks for the info. I think they really dont't have vacancy coz EIPIC (early intervention programme for infants & children) is from birth to 6 years. baby's NUH doc (who saved his life in PICU) recommended us for Rainbow Centre (MD) plus she's a volunteer doc there so we'll stick to our queue instead of private school.
Appreciate your advice ... baby used to see NUH physio therapist but the therapist is so young & green, she doesn't know what to do with him at each session (tells me the same thing each time ... to roll his hips). She tried not to show how horrified she was by his MRI brain scans but it's obvious she hasn't come across other patients with that extent of brain injury (could tell she doesn't have much experience to fall back on). Kept asking me if I'm aware that baby's very likely not able to walk coz of his brain damage ... replied her matter-of-factly that yes I'm prepared for that scenario but I'm not giving up him on doing that one day.
Coz we weren't getting help from that PT, we decided to see PT in pte practice (the Biopolis one) who's a veteran specialising in special needs children. This PT has worked wonders with baby and she does more than therapy exercises with him ... she also helps to find adaptive equipment for us to use with him, helps with his feeding & sleeping by giving me feedback about his condition each time she checks him and exercises him. baby sees her weekly and even when he starts Rainbow Centre, he'll continue to see her coz he has improved so much with her (he can hold up his head now) plus she works closely with his NUH docs and OT.
I know going to Rainbow doesn't mean weekly therapy ... what's important for baby is daily therapy exercises that PT has taught us to do with him thru'out the day.
thanks epicurean! have actually unknowingly tried most of the suggestions given. there are good days and bad days.
i def can empathise with the mother in law part. my mother in law seems to think that anything and everything wrong with baby is because i'm bfing her, and my breast milk is not enough. When she knew baby had reflux, i was so worried that she would ask me to stop bfing.
am taking leave to look after baby till end of year, but dont't know if my extension till next year will be approved. If not approved, will have a major headache cos i'm about the only one with the patience to soothe baby and not stuff her with milk everytime she fusses. Even husband can't tahan her.
Yeah, there're indeed good days and bad days ... I define them by the amount of vom that baby ejects and how fussy/unsettled he is.
Our PT helps us put things in perspective ... she intro'd us to another patient of hers ... this 6-year-old boy with even more worse GERD who's also severe CP like my baby. But this boy does projectile vomitting, sometimes even on an empty stomach ... he's also breathes with help of ventilator and tracheotomy (breathes thru' tube inserted into his throat). His mummy is very strong and positive ... i'm humbled by her generosity in sharing and helping.
I salute you, bf mummy! It ain't easy ... from what I've read about GERD, breastmilk has natural antacid that's good for babies with reflux. So dont't your mother in law get to you, ok? I couldn't bf my baby coz of misinformation and misguided decisions during the 1st 72 hours of his life when he was in life-threatening danger in PICU. That is always something I wish I could have done for him.
Yeah, it takes lots lots of patience to calm & settle a refluxy baby coz the problem doesn't seem obvious like a dirty diaper. I think your hubby will come to understand as he knows more & more about GERD.
epicurean, is your avatar picof your boy? he's lovely!
Angelmum, thanks for info ... I'll have to moderate my expectations about Rainbow Centre then. You're the 2nd person to forewarn me about putting too much hope on rainbow and what they can do for baby. Will wait for vacancy to open up and see what they can do for him.
Yeah, that's my boy!
Thanks ... I think he's beautiful but of coz I'm a tad biased hahah. Do you have a pic of your dear daughter? I'm sure she's adorable,
having very bad flu. will try to upload her pic.
Hi Epicurean...after reading about your boy and Angelmum dear daughter conditions (just like Uddermummy said) mine are like molehill...but dont't give up...we prepare for the worst but look at the bright side and do our best...
Hi Angelmum, think the fee for RC is likely to increase in Sept or nx Jan...dono about YPS...we just fill in the Mean Testing form few weeks ago...tell you a incident which make me so upset about one of the social worker in MD...due to the increase of sch fee in Jan09...actually we just pay the fee without any complaint...until recently i realised that since we fill in the registration form for my gal when she entered RC in 2005/2006 (i can't remember), we didn't fill in anymore form that declare my husband's salary...so how come they just increase our fee without informing us or letting us fill in anything, so i approached the social worker...i asked her how she derived to the amount that we need to pay...she took out her calculator and press and press and said 'your gal attending twice a week right?...so 1 month 8 lessons right?...you are paying $200 right?...so each lesson is $25, plus all the therapies, dont't you think is worth already?'...i was so shock to hear the answer and dono what to say...my husband was so angry he told her off...he said 'we are asking you how you derived to the amount we need to pay for my gal's fee not asking you worth or not worth!!'...throughout the whole session she is so rude...i mean social worker suppose to be passionate, helping those who need help not just brush us off with those answer...if really talk about worth or not worth...my gal did not get any therapies until this year then she got her SLT...should have told her off also...really disappointed...
BTW Epicurean hope won't frighten you off...overall most of the teachers at MD are good...if you are lucky your boy will meet a very good one...just like my gal in last half of 2007, she met a very good teacher...that half year she improve alot...thanks to that teacher, but she quit...
Saw the video clip that Jojoki posted...was tearing when watching it...watch the below clip...is a funny one to cheer everyone up...delicate to all mummy...whether with normal or special children...Happy Belated Mother's Day...
YouTube - Funny mum song-with lyrics
Nice to meet you dont't worry about scaring me about Rainbow (MD) ... and I find that social worker completely lacking in compassion, EQ and common sense *shakes head*
Hope you're better! It's a terrible flu season ... baby & I kept taking turn to fall ill. Take good care of yourself ...
My housemate is a music therapist from the Rainbow school at khatib.. and she too share a lot of stories of her students with me. These children are sooo special... n they deserve soooo much love. Theres a book called Bright from the Start. The author Jill Stamm she has a phd in neuroscience.. her daugther Jenny has celebral palsy. Her book is good... read it up when you r free, theres many ways to stimulate them n they can be equally intelligent.
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth:
"It's time again for another birth."
Said the Angels to the Lord Above,
"This special child will need much love."
Her progress may seem very slow,
Accomplishments she may not show
And she'll require extra care
From folks she meets way down there.
She may not run or laugh or play
Her thoughts may seem quite far away:
In many ways she isn't adapt
And she'll be known as handicapped.
So let's be careful where she's sent
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes a stronger faith and richer love.
And soon they'll know the privilege given
In caring for the Gift from Heaven.
Their precious charge,
so meek and mild
Is Heaven's Very Special Child.
btw dont know if this helps you may wanna check out this
The Institutes for the Achievement of Human Potential - Wikipedia, the free encyclopedia
Thanks for the info esp the book. Will look for it I checked it out on amazon and it sounds pretty useful & constructive.
Would like to share this poignant article with you and all mummies ...
Welcome to Holland