Angelmum

Moderator
This thread provides a more detailed introduction ... a bit different from 'Lounge Area - Introduce Yourself'. Basically to let other special needs parents know you and your child's condition better.

To view Individual Members' Introduction:
Click shortcut "http://www.mummysg.com/forums/f97/being-special-parenting-child-medical-conditions-15948/"
Otherwise, read slowly and find parents who have children of similiar medical condition from this thread.

:we3jiggy:Carry on with any chat or introduction, I'll copy the relevant Introduction/Medical condition to the Being Special thread. Thanks for sharing and joining us.:webiggrin:


"Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time. Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Those of us who have special needs children know just how hard it is to find the resources and assistance that we need in order to be able to do our best for our kids. MummySG has specially created this forum for parents like us to chat, share and vent!

No one knows our reality until they have walked in our shoes, knowing that we understand your frustration. Remember, you are NOT ALONE!!

We are just parents, not professional so most comments are given based on experience.
 
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Angelmum

Moderator
re: Introduce yourself & yr child +Medical condition

My Angel

My girl was diagnosed with Angelman Syndrome just b4 she turns 1yo. I found her different fm my elder son thus during regular visits to KKH, I asked PD why she cant flip or sit up at 6mths, PD said some kids are slow. No matter how many times I expressed my concern, none of the PDs were willing to pay attention to me (again, same problem during my pregnancy). Docs do not trust a mother’s instinct (again) so finally, they ‘woke up’ and agreed that something is not right when DD was 11mth. KKH ran tests and CT scan, finally told us she has a deletion of chromosome 15.

Angelman Syndrome - mainly speech impairment, seizures and Global Developmental Delay. A deletion of chromosome 15 from mum is known as AS while Prader Willi Syndrome is due to dad.

When pregnant, was a C class patient. C class patients are not allowed to stick to one gynae so every visit, you see a different person. :embarrassed:

Was very upset and dont understand y I’m so ‘lucky to hit jackpot’ - a special child! When I conceived DD, I had uneasy feeling. B4 her, I had a misabortion, foetus no heartbeat. I requested for detailed tests and thot I had been tested WHO KNOWS WHEN GAL about to turn one (after KKH ran tests and found her abnormal) then KKH told me they didnt run any genetic tests cos I had no family history. Thot I was in safe hands, who knows the MO were so incompetent!! :we2wacko:

After DD, had an unplanned pregnancy. Foetus abnormal – Acrania (Mickey Mouse Head) so aborted foetus. :bwacko: I no saint nor unbeatable person so I had to be a killer.:wecry:

DD is going 7yo and I'm a homemaker with another P6 boy. :eek:15:
 

SunShine07

Member
re: Introduce yourself & yr child +Medical condition

My Angel

My girl was diagnosed with Angelman Syndrome just b4 she turns 1yo. I found her different fm my elder son thus during regular visits to KKH, I asked PD why she cant flip or sit up at 6mths, PD said some kids are slow. No matter how many times I expressed my concern, none of the PDs were willing to pay attention to me (again, same problem during my pregnancy). Docs do not trust a mother’s instinct (again) so finally, they ‘woke up’ and agreed that something is not right when DD was 11mth. KKH ran tests and CT scan, finally told us she has a deletion of chromosome 15.

Angelman Syndrome - mainly speech impairment, seizures and Global Developmental Delay. A deletion of chromosome 15 from mum is known as AS while Prader Willi Syndrome is due to dad.

When pregnant, was a C class patient. C class patients are not allowed to stick to one gynae so every visit, you see a different person. :embarrassed:

Was very upset and dont understand y I’m so ‘lucky to hit jackpot’ - a special child! When I conceived DD, I had uneasy feeling. B4 her, I had a misabortion, foetus no heartbeat. I requested for detailed tests and thot I had been tested WHO KNOWS WHEN GAL about to turn one (after KKH ran tests and found her abnormal) then KKH told me they didnt run any genetic tests cos I had no family history. Thot I was in safe hands, who knows the MO were so incompetent!! :we2wacko:

After DD, had an unplanned pregnancy. Foetus abnormal – Acrania (Mickey Mouse Head) so aborted foetus. :bwacko: I no saint nor unbeatable person so I had to be a killer.:wecry:

DD is going 7yo and I'm a homemaker with another P6 boy. :eek:15:
I really feel for you. My Niece also delay in development, I don't know exactly what they name her case as. But i know she can't speaks well, her academic also delay, she can't really communicate well, don't know how to make friends basically. Sometimes when i sees her i also :eek:10: very upset. She look very normal, very friendly, but just can't make friends with her age. This year she just manage to go P1, she is 9 yrs old. But go a lot of problem loh....sigh.

My sister got soooooooo stressed and upset, but there is nothing she could do. She spent so much money on her. Visit speech therapy and etc....

Feel very sad when talk about her. B4 my son, my neice is also my BAOBEI....
 

Angelmum

Moderator
re: Introduce yourself & yr child +Medical condition

I really feel for you. My Niece also delay in development, I don't know exactly what they name her case as. But i know she can't speaks well, her academic also delay, she can't really communicate well, don't know how to make friends basically. Sometimes when i sees her i also :eek:10: very upset. She look very normal, very friendly, but just can't make friends with her age. This year she just manage to go P1, she is 9 yrs old. But go a lot of problem loh....sigh.

My sister got soooooooo stressed and upset, but there is nothing she could do. She spent so much money on her. Visit speech therapy and etc....

Feel very sad when talk about her. B4 my son, my neice is also my BAOBEI....

Yr sis bot yr niece visit any doc? Doc recommended mainstream? Could be an added stress if she cant cope, interact with peers or catch up on her studies.

Talk about P1, DD suppose to enter P1 at her age.
We in Rainbow Centre Special school till they discharge her at 18yo.
 

SunShine07

Member
Re: Introduce yourself & yr child +Medical condition

Yr sis bot yr niece visit any doc? Doc recommended mainstream? Could be an added stress if she cant cope, interact with peers or catch up on her studies.

Talk about P1, DD suppose to enter P1 at her age.
We in Rainbow Centre Special school till they discharge her at 18yo.
Ya, she visited specialist b4. it start when my sis found out that she got lazy eye. Then slowly discovered many more issue about my neice only when she is about 2 yrs plus. Her is still consider mild case according to Doc.

She got behaviour problem also. She 9 yrs old, but she behave like 4-5yrs old kids, can't control her emotional. Get too excited sometimes. Then she is over firendly to strangers also and causes worried for me sis what is it is a man, and the man is prevert:embarrassed:

Sigh, very poor thing. She is now studying at Cedar primary school, it is a normal school though, but heard they will also accept ppl like my niece. But still got problem loh....

sigh...poor thing...just leave it to GOD bah~
 

Yukee

Member
Hi Anglemum...so we shifted...recently i switch back to my lazy mode again...i jus read the posts but didn't post anything...

Hi all, my gal (4yos) was diagnosed with Down Syndrome when she was born...during my pregnancy, i did the blood test the possibility of getting a Downs was very low...i requested for a amio (cos i was 34 going to 35 at that time), but the gynae (a private one) said no need, cos i had no family history of any illnesses...so we got her...but thanks god, she is healthy and can consider her as the high functioning type (or moderate)...and over independent, this make us difficult to teach and correct her, she jus want to do it her way on her own...her current problem is speech...she start calling me mummy only few weeks ago...almost cried, waited for so loooong...I am a SAHM, i had quit my job so that i can take care of her, cos feel that i am the best person for her, currently i put her in the PCF Childcare on alternate day, cos the other days she needs to go to the special school...quite satisfy with her progress and the arrangement now...hope everything will be smooth and she will improve as times go by...
 

Angelmum

Moderator
Sigh, very poor thing. She is now studying at Cedar primary school, it is a normal school though, but heard they will also accept ppl like my niece. But still got problem loh....

sigh...poor thing...just leave it to GOD bah~
:we2skeptical: ooooIC


Hi Anglemum...so we shifted...recently i switch back to my lazy mode again...i jus read the posts but didn't post anything...
Happy to see u here!:webiggrin: :Dancing_wub:
 

Spiralng

Well-Known Member
To all the mummies, I really admire your strength and courage for your kids. Thanks for sharing.

My 2 girls are very active. Not too sure if they are the hyper type or it's due to my displinary problems. I can already sense that my patience hv reached it's limit and my blood pressure increasing by the min. Reading this thread makes me realise that I hv not tried hard enough...hope I can learn from all u mummies out there.
 

Angelmum

Moderator
To all the mummies, I really admire your strength and courage for your kids. Thanks for sharing.

My 2 girls are very active. Not too sure if they are the hyper type or it's due to my displinary problems. I can already sense that my patience hv reached it's limit and my blood pressure increasing by the min. Reading this thread makes me realise that I hv not tried hard enough...hope I can learn from all u mummies out there.
hi
think yr girls just got partners to play hard and play well!
DS alone, he nobody to play with or make lots of noise so when with cousins, so noisy and .......
 

Spiralng

Well-Known Member
hi
think yr girls just got partners to play hard and play well!
DS alone, he nobody to play with or make lots of noise so when with cousins, so noisy and .......
Haiz...I think my girls play too HARD!!! Everything in my house got destory by them, just the other day, they break my curtain rod into 2 pieces. My handphone also not spare....I lost track of the things they damaged.
 

Angelmum

Moderator
Haiz...I think my girls play too HARD!!! Everything in my house got destory by them, just the other day, they break my curtain rod into 2 pieces. My handphone also not spare....I lost track of the things they damaged.

they how old?
what about play too hard (destroyer) help do housework or do assessment as punishment?
 

Spiralng

Well-Known Member
they how old?
what about play too hard (destroyer) help do housework or do assessment as punishment?
Age 5 and 6. They loved to touch everything. So no choice, train them to do housework and they loved it. When my washing machine hv the beep sound, they will take the basket, take out all the clothes and hang them. When i vacumn the floor, they start playing with the vacumn so in the end, ask them to vacumn. When i shell ginko nuts, they also wan to play so ended up, lay newspaper and let them finish shelling the nuts. Ask them to do homework, i wan to vomit blood. Keep jumping, or find excuse to leave their homework. Use cane also useless. I seldom use the cane so unless they do something very dangerous like playing with power points, i will cane them.
 

epicurean

Member
Hi, my baby boy suffered from bleeding and swelling in his brain during birth. After his team of docs saved his life and stabilised his condition, scans showed extensive brain damage with ongoing sub-clinical seizures. He's now 1 year old and those seizures are kept under control with Epilim. He has global developmental delay, hyper tonia (excessive stiff muscle tone) and GERD.

He's helluva stubborn boy to make it out of PICU and the hospital and I'm so proud of him :) Love him to bits
 

Angelmum

Moderator
Hi, my baby boy suffered from bleeding and swelling in his brain during birth. After his team of docs saved his life and stabilised his condition, scans showed extensive brain damage with ongoing sub-clinical seizures. He's now 1 year old and those seizures are kept under control with Epilim. He has global developmental delay, hyper tonia (excessive stiff muscle tone) and GERD.

He's helluva stubborn boy to make it out of PICU and the hospital and I'm so proud of him :) Love him to bits


the bleeding was caused during the delivery of bb?
is he receiving therapies n massage?
r u the main caregiver?
 

epicurean

Member
My boy was born via natural delivery without forceps etc. Everything was smooth ... which was why it came as a complete shock when he started having trouble breathing 4 hours after birth. Docs have no definite answers for us ... they suspect that he sustained some bleeding during birth process and his blood couldn't clot tho' he received the usual Vit K injection. The bleeding continued, became profuse and agitated the brain into swelling, seizures. When he was stable, we did the blood factor test coz worried that he could be hemophilic but the test came back normal. It appeared that his blood just couldn't clot at that point in time.

Yeah, he's undergoing physiotherapy weekly and occupational therapy once a month. I massage him everyday to soften his stiff muscles. Coz of the brain damage, he has little control over his body and limbs ... when he gets upset, his reaction is to stiffen and fuss. Yep I'm his main caregiver ... taken no-pay leave to look after him full-time coz he's very high-need plus I don't find hired help that reliable.
 

Angelmum

Moderator
Yeah, he's undergoing physiotherapy weekly and occupational therapy once a month. I massage him everyday to soften his stiff muscles. Coz of the brain damage, he has little control over his body and limbs ... when he gets upset, his reaction is to stiffen and fuss. Yep I'm his main caregiver ... taken no-pay leave to look after him full-time coz he's very high-need plus I don't find hired help that reliable.

since no pay leave means u still need to get back to work. If u go back to work, who's taking care of yr boy?

I cant leave DD with maid n nearby got no relative willing to supervise ....so I'm a SAHM. Hubby trying to 'kick me to out' to work but I dont feel comfortable leaving DD alone with maid. He said install CCTV but I still dont dare to take the risk.

Getting suitable caregiver .... think this is one problem special needs mum facing.
 
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epicurean

Member
Some days I feel torn about returning to work (coz his med & therapy expenses are high) and staying home to look after him. My bosses are understanding ... they've told me that I can extend my leave as long as I need to ... if anything, it's the need for 2nd income that's the push factor.

I've moved in with my parents coz my mum is helping me take care of my boy. Hubby and I used to stay with his parents ... now hubby commutes to see us. We've found a maid recently and she's learning to care for my baby with my mum's supervision (while I catch up on some sleep). Baby isn't sleeping thru' the night coz of his hyper tone ... his stiffened muscles cause him pain so he can't stay relaxed for long. He's down to one night feed which is isn't too bad ... coz of his GERD, we hold him upright for an hour post-feed to miminise vomitting. He used to merlion out his milk which was stressful coz he wasn't gaining weight. There are many nights when he would be very fussy and unsettled after feed and wouldn't sleep so I'm up with him until daybreak.

Yeah, I agree with you that getting good reliable trusted help is tough for mums with special needs babies. I find it too scary to leave him with just the maid. It's extremely challenging & exhausting caring for my baby and my maid sometimes cannot settle him so my mum or I take over. My mum's getting on in years and he wears her, as she would wryly say. Coz his condition isn't stable, I don't feel assured leaving him at home with maid & my mum ... I worry that they won't be able to settle him on his very fussy days. When he fusses, he stiffens until his hips are on the verge of being dislocated. His doc doesn't believe that we can completely prevent his hips from dislocating ... now our aim is to minimise deformity so that he doesn't need to go for high-risk corrective surgery when he's older. That's why it's super important to minimise his fussing as much as possible ... so back to my dilemma about returning to work.
 

Angelmum

Moderator
Some days I feel torn about returning to work (coz his med & therapy expenses are high) and staying home to look after him. My bosses are understanding ... they've told me that I can extend my leave as long as I need to ...... so back to my dilemma about returning to work.
Thot these kind of employers extinct. Nowadays mostly finding ways to force u leave (save on retrenchment) or axe u based on the silliest reason.
for yr boy
 
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epicurean

Member
Thanks for your support :)

I think it helped that I'm in teaching in an independent school so their HR policies are more flexible. I'm still trying to figure out an arrangement so I feel assured about to return to work on part-time basis (which is what my bosses are also in favour of).
 

epicurean

Member
Hi Angelmum,

Thanks for sharing so frankly about your experiences as a mom with a special needs child. I think you're very strong and capable to be caring for your DD by yourself along with your son. I completely empathise about the crazy jumble of emotions that we such moms grapple with everyday, esp when we see our child struggling with his/her condition.

I realise I forgot to explain that my baby has been classified as cerebral palsy (grade 5 most severe - low functioning, high dependability), quad-spastic (all 4 limbs are affected). This is coz his MRI brain scans show a lot of brain cells in his cortex (frontal lobe) died and been absorbed into existing cells ... basically, now there are large holes in his frontal lobe (missing brain matter) coz brain cells do not regenerate. Coz damage is in his cortex which governs executive functions (walking, speech, learning, eyesight etc), everything will be affected. His prognosis by doc is extremely grim ... I cried for days when I read it. Doc also warned us that he would probably not outlive us coz 2 things are likely to kill him - 1. his epilepsy is likely to worsen as he gets older (one probable trigger is hormones as he reaches puberty) 2. he's very prone to infection (esp. lung infection) coz of his condition plus he constantly vom milk ... high possibility of inhaling milk or phlegm into his lungs. Hubby and I used to hug each other and cry after each medical review coz it seemed like bad news after bad news, non-stop pain & suffering for our boy.

Now with medication - he's on epilim for seizures, zantac for GERD, baclofen (muscle relaxant) & diazepam (aka valium, tranquiliser) for his hyper tone - and therapy, he's slowly improving and happier and not in pain. Have you read the article "Welcome to Holland" by Emily Kingsley? I read and reread it to remind myself to be strong & positive for him coz I believe I'm the best person to help him improve. When I first read the article, it was like someone finally articulated all the feelings that are bubbling in me everday and made sense out of them.
 
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