Accepting my own Gal

[KJ mummy]

Dear Yvonne

I can fully understand what you are now going through, phyiscally and emotionally. Yes, it will take you some time to accept the facts and your baby girl. Once you have gotten over the saddest period of time in your life, you will find that you will feel much better and more ready to handle your baby.

I have a baby boy whose condition is very similar to Epicurean's boy. My boy has CP and GERD. Docs said that my boy's vision is not good..like 20% only. He has to go for for his weekly PT, monthly ST and OT. I have seen some children with dear son in the hospital during my son's PT sessions that they can be very independent and intelligent too. They are able to do things independently and even follow instructions very well. So, please do not give up on your gal for her future is still bright.

Take care and log on to this forum more often for the support you need during this period. All the mummies here have gone through what you are going through now and they can always give you the emotional support you need from time to time.

Meanwhile, please take care of your health!

God Bless!

 

[Porukadotzu]

Hi Yvone,

you are a strong mommy, and will go stronger by times, thou your baby may not being born as perfect as you want but I'm sure she's born with gifts to make your life more meaningful... don't be discourage, and i'm sure you can finally feel your love towards your little girl.

I'll pray for you and your little daughter to stay strong and healthy.

God Bless!

 

[Yvonne Lim]

Hi Epicurean, did the dr share with you the the life span of your son? Yes you are right, I went to the Down Syndrome Assn and the parents and people there are really kind, strong and helpful, always ready to talk to us and give us their advise.. Seeing the kids there make me feel better.. However, when I return home, looking at my poor gal, i feel sad again, worry abt the future, worry abt her upbringing, worry abt her education, worry if she can ever be independent, worry on financial burden on her medical, worry if my elder gal can accept her little sister...

Hi KJ Mum, thank you for your encouragement and sharing with me on your son condition... May I know which hospital did you send your son for therapy?

Hi Porukadotzu, thanks for your encouragement...

 

[Yvonne Lim]

Mine is a boy. Nope my boy amnio result is normal. Defect was found during the WK20 scan. thanks god we found it earlier, we manage to speak to a team of specialist, so when boy is out we will proceed with treatment and follow by surgery.

Yes, ashbaby, if it is a birth detect, I believe a surgical ops will be able to correct it.. As long as BB is born healthy....

 

[Ashbaby]

Yes, ashbaby, if it is a birth detect, I believe a surgical ops will be able to correct it.. As long as baby is born healthy....

Just wanna let you know, we can empathsize ur feeling cos its really devastating to know something happen to our dear child, no matter whether is it a big or small issue.

 

[Yvonne Lim]

Just wanna let you know, we can empathsize your feeling cos its really devastating to know something happen to our dear child, no matter whether is it a big or small issue.

yes agree with what you say.. cos big or small is our child...

 

[epicurean]

Hi Yvonne,

Seb's neuro didn't specify his life span but she warned us that 2 things in particular can threaten his life. One is the possibility of his epilepsy worsening as he gets older esp with the onset of puberty. We're already on the lookout for precocious puberty (his brain damage can play havoc with his growth hormones) coz noticed he's developing facial hair above his upper lip. Second is that he's vulnerable to infection, esp lung infection, coz of his risk of aspiration ... infection also brings along fever which tends to lower his seizure threshold. So our stance is no matter much time he has with us, we want him to be happy everyday and have good memories of time spent with daddy & mummy, knowing with full certainty that he's loved, wanted and cherished

It's very normal to have all those worries & anxieties running thru your mind .. . they are magnified in the light of the sudden discovery of your gal's condition. Parents with normal children have those worries too but we with special needs kiddos feel them more acutely coz our kids depend on us so much more. Honestly, I have no easy, magical answers for you but what I can tell you is that all those things can be manageable with you & hubby staying strong & united in your marriage.

As Seb is my only child, I don't have experience with another child accepting a sibling with special needs. From what friends tell me, the older child takes the cue from the parents and pretty much follows the tone set by them. About her education and independence, I think therapy & early intervention programmes will help a lot, esp with teaching skills for daily living. If Seb, who's so severely mentally & physically impaired, has improved coz of therapy etc, I believe your gal can also improve, given the range of resources available for D.S. children. About finances, well, we've simplified our lifestyle & tightened our belts ... I've traded less pay for more time to look after Seb coz I don't believe that all the money in the world will make a difference to his world if he isn't getting quality care. But all these ideas & thoughts make up my approach ... you'll soon figure out your own approach that's best for your gal and your family *hugs*

 

[KJ mummy]

Hi Epicurean, did the dr share with you the the life span of your son? Yes you are right, I went to the Down Syndrome Assn and the parents and people there are really kind, strong and helpful, always ready to talk to us and give us their advise.. Seeing the kids there make me feel better.. However, when I return home, looking at my poor gal, i feel sad again, worry about the future, worry about her upbringing, worry about her education, worry if she can ever be independent, worry on financial burden on her medical, worry if my elder gal can accept her little sister...

Hi KJ Mum, thank you for your encouragement and sharing with me on your son condition... May I know which hospital did you send your son for therapy?

Hi Porukadotzu, thanks for your encouragement...

Hi Yvonne

My son is currently having his PT, OT and ST at Kandang Kerbau Hospital. There are some very good and experienced therapists in Kandang Kerbau Hospital but there are also some very inexperienced ones too :nah:. My son's physiotherapist is very experienced as she has worked in Rainbow Centre for some years before she joined Kandang Kerbau Hospital. Which hospital you delivered your baby? Although my son was not born in Kandang Kerbau Hospital, we started his PT sessions there after he was admitted for his neuro problems at the age of 2 months. We continue to follow up with Kandang Kerbau Hospital including the PT which was referred by the neuro docs after he was discharged from Kandang Kerbau Hospital.

 

[Yvonne Lim]

Hi Yvonne,

Seb's neuro didn't specify his life span but she warned us that 2 things in particular can threaten his life. One is the possibility of his epilepsy worsening as he gets older esp with the onset of puberty. We're already on the lookout for precocious puberty (his brain damage can play havoc with his growth hormones) coz noticed he's developing facial hair above his upper lip. Second is that he's vulnerable to infection, esp lung infection, coz of his risk of aspiration ... infection also brings along fever which tends to lower his seizure threshold. So our stance is no matter much time he has with us, we want him to be happy everyday and have good memories of time spent with daddy & mummy, knowing with full certainty that he's loved, wanted and cherished

It's very normal to have all those worries & anxieties running thru your mind .. . they are magnified in the light of the sudden discovery of your gal's condition. Parents with normal children have those worries too but we with special needs kiddos feel them more acutely coz our kids depend on us so much more. Honestly, I have no easy, magical answers for you but what I can tell you is that all those things can be manageable with you & hubby staying strong & united in your marriage.

As Seb is my only child, I dont't have experience with another child accepting a sibling with special needs. From what friends tell me, the older child takes the cue from the parents and pretty much follows the tone set by them. About her education and independence, I think therapy & early intervention programmes will help a lot, esp with teaching skills for daily living. If Seb, who's so severely mentally & physically impaired, has improved coz of therapy etc, I believe your gal can also improve, given the range of resources available for D.S. children. About finances, well, we've simplified our lifestyle & tightened our belts ... I've traded less pay for more time to look after Seb coz I dont't believe that all the money in the world will make a difference to his world if he isn't getting quality care. But all these ideas & thoughts make up my approach ... you'll soon figure out your own approach that's best for your gal and your family *hugs*

Hi Epicurean,

I am very motivated by you, despite your son condition you are still so encouraging and i hope i will soon come out from my doom and be strong like you..

In fact this morning, I went to rainbow centre to sign up the early intervention program for my gal, i went with the hope of starting her early and seeing her be a more independent gal.. Initially when they show me around, I am comforted by the fact that the DS children there are independent and very very blubbly and sweet, till I saw this boy, he is very dependent on people and he can't control his speech and physical movement very well.. I feel so sad after i saw him and my fears start to set in once again..

Too be frank, i never hope tat my gal will be a scientist or a doctor one day, I just hope that she can be independent and one day if my hubby and me leave the world she is strong enough to take care of herself..

You are a very strong lady and your son and hubby is very fortunate to have you..

Stay strong and happy...

 

[Yvonne Lim]

Hi Yvonne

My son is currently having his PT, OT and ST at Kandang Kerbau Hospital. There are some very good and experienced therapists in Kandang Kerbau Hospital but there are also some very inexperienced ones too :nah:. My son's physiotherapist is very experienced as she has worked in Rainbow Centre for some years before she joined Kandang Kerbau Hospital. Which hospital you delivered your baby? Although my son was not born in Kandang Kerbau Hospital, we started his PT sessions there after he was admitted for his neuro problems at the age of 2 months. We continue to follow up with Kandang Kerbau Hospital including the PT which was referred by the neuro docs after he was discharged from Kandang Kerbau Hospital.

Hi KJMum,

Thank u fo r the info, is the charges for the therapy ex? I delivered my baby in TMC...

Take care..

 

[littlehelper]

I know of two families who have children with autism.
First family-2 boys.Both autistic.First one very very mild.Got into main stream school,coping fine.Second one autistic more serious.Always runs away and run out of the house if gate left open,no eye contact etc.However,older one is able to take care of younger one and tells his parents what his bro is doing and get along fine.Once the younger one ran out of my house and the older one quickly told the mum that bro has runned out.It was CNY tat time many ppl in my house.I was eating when i saw him run out so quickly ran out of my house barefooted and pull him back.

Second family-3 children.
Oldest is a girl.Second autistic boy.Youngest girl.
Oldest girl take good care of bro and understanding.Very independent too.
She goes to church on her own at the age of 7 and when asked where her parents are she will tell us Mum needs to look after didi so cannot come
She can also handle her autistic bro and tell him to greet ppl and all even though he does not respond.So it will go - sister:"Say hello uncle"
Then holds his hand up and wave and then smile at us
When she was younger she would say:"Didi dunno how to talk"
but as she got older she learnt how to explain and care for her bro.

 

[Yvonne Lim]

I know of two families who have children with autism.
First family-2 boys.Both autistic.First one very very mild.Got into main stream school,coping fine.Second one autistic more serious.Always runs away and run out of the house if gate left open,no eye contact etc.However,older one is able to take care of younger one and tells his parents what his bro is doing and get along fine.Once the younger one ran out of my house and the older one quickly told the mum that bro has runned out.It was CNY that time many ppl in my house.I was eating when i saw him run out so quickly ran out of my house barefooted and pull him back.

Second family-3 children.
Oldest is a girl.Second autistic boy.Youngest girl.
Oldest girl take good care of bro and understanding.Very independent too.
She goes to church on her own at the age of 7 and when asked where her parents are she will tell us Mum needs to look after didi so cannot come
She can also handle her autistic bro and tell him to greet ppl and all even though he does not respond.So it will go - sister:"Say hello uncle"
Then holds his hand up and wave and then smile at us
When she was younger she would say:"Didi dont know how to talk"
but as she got older she learnt how to explain and care for her bro.

I hope my elder gal will be like the 2 cases you mentioned above and take care of mei mei.. after knowing my younger gal is diagonise with DS, I start to appreciate more of things in life and not take everything that happen to us for granted..

 

[xiaochuan]

Hi Yvonne

I have been reading your posts.

First thing, i noted you are not resting during confinement... you have been shuttling around. U must take good care of yourself, ok

On your concern about elder gal taking care of mei mei, she will definitely love mei mei. Children are more accepting than us adults. She will love her mei mei unconditionally.

fyi, my baby gal was born oct last year. Her condition was worse than Epi and KJmummy baby. She was not able to swallow and needs suctioning frequently. She has to be fed via tube, and doesnt even cry. She was not able to respond to sound and cannot fixate. It was devastating for me, and i found it really tough to accept her (u could read all my thots in the intro thread). My elder boy loved her readily. Even after she left us, he still thinks about her and always ask us to buy things for his mei mei.

I just want you to know. U are doing great. At the very least, u registered her at Rainbow Centre.. it took me 2 months to start processing the forms for early intervention for her.

 

[Yvonne Lim]

Hi Yvonne

I have been reading your posts.

First thing, i noted you are not resting during confinement... you have been shuttling around. you must take good care of yourself, ok

On your concern about elder gal taking care of mei mei, she will definitely love mei mei. Children are more accepting than us adults. She will love her mei mei unconditionally.

fyi, my baby gal was born oct last year. Her condition was worse than Epi and KJmummy baby. She was not able to swallow and needs suctioning frequently. She has to be fed via tube, and doesnt even cry. She was not able to respond to sound and cannot fixate. It was devastating for me, and i found it really tough to accept her (you could read all my thots in the intro thread). My elder boy loved her readily. Even after she left us, he still thinks about her and always ask us to buy things for his mei mei.

I just want you to know. you are doing great. At the very least, you registered her at Rainbow Centre.. it took me 2 months to start processing the forms for early intervention for her.

Xiaochuan,

Thank you for your post and your encouragement.. I am sorry to hear your side of experience and I hope you are recovering well..

Yes you are right I am not resting much, can't sleep, can't eat.. Running around hospital and education centre..

I am still in the midst of accepting her, accepting the fact.. Sometimes, I hate myself for thinking crazy tots.. Sometimes, I think of abandoning her, send her to a home or send her for adoption... After tat I hate myself for having such tots.. Hate myself for being so heartless and cruel to my own daughter...

 

[epicurean]

Hi Yvonne,

Thanks I think it's wonderful that you're decisive & pro-active about making positive decisions that have direct impact on your gal's development ancing_wub: You went to Margaret Drive or Yishun Park?

Special needs kids vary along a broad spectrum of functioning vs. dependency though they may fall into the same category eg. cerebral palsy or D.S. But the important thing is that they can move within that spectrum in response to the kinda care, nurturing, help, stimulus, therapy, teaching etc that they receive. Those fears about our children's condition will never totally leave us ... they linger, hover around and make their presence keenly felt ... with time and knowledge & skills that we pick up along the way, they do become less scary as we grow in confidence about managing our children & their needs. I started out petrified, paralysed by fear, grief and anxiety attacks ... was super kan cheong. I think bringing Seb to therapy has benefited me as much as him! Coz I've learned from the various therapists about how to manage his condition, esp for daily issues, resources, adaptive equipment ... somehow that has made those fears more bearable.

I also worry about Seb's care if something happens to us. Been thinking & exploring contingency plans to put in place so that can have some peace of mind.

 

[Yvonne Lim]

Hi Yvonne,

Thanks I think it's wonderful that you're decisive & pro-active about making positive decisions that have direct impact on your gal's development ancing_wub: You went to Margaret Drive or Yishun Park?

Special needs kids vary along a broad spectrum of functioning vs. dependency though they may fall into the same category eg. cerebral palsy or D.S. But the important thing is that they can move within that spectrum in response to the kinda care, nurturing, help, stimulus, therapy, teaching etc that they receive. Those fears about our children's condition will never totally leave us ... they linger, hover around and make their presence keenly felt ... with time and knowledge & skills that we pick up along the way, they do become less scary as we grow in confidence about managing our children & their needs. I started out petrified, paralysed by fear, grief and anxiety attacks ... was super kan cheong. I think bringing Seb to therapy has benefited me as much as him! Coz I've learned from the various therapists about how to manage his condition, esp for daily issues, resources, adaptive equipment ... somehow that has made those fears more bearable.

I also worry about Seb's care if something happens to us. Been thinking & exploring contingency plans to put in place so that can have some peace of mind.

Hi Epicurean,

I went to the one at Yishun Park.. Now hv to arrange on who to bring her for the class cos I am a full time working mum therefore I may hv to take leave to bring her or my mil to bring her...

Yes, I hv the same worry as you, worry tat one day if both my hubby and me are gone who is going to take care of her... I don even hv a plan or know how to go abt doing it....

 

[xiaochuan]

u are not alone... i did have thots to send her to a home or even giving her up for adoption. I guess it's normal... some of us takes long or nvr accept the cruel thing that happened to our children.. and we are left with a shattered dream, not to mention all the effort rqd to provide for our special needs children,

Xiaochuan,

Thank you for your post and your encouragement.. I am sorry to hear your side of experience and I hope you are recovering well..

Yes you are right I am not resting much, can't sleep, can't eat.. Running around hospital and education centre..

I am still in the midst of accepting her, accepting the fact.. Sometimes, I hate myself for thinking crazy tots.. Sometimes, I think of abandoning her, send her to a home or send her for adoption... After that I hate myself for having such tots.. Hate myself for being so heartless and cruel to my own daughter...

 

[epicurean]

Hi Yvonne,

Seb's been in the queue for Margaret Drive since August 2008 :err: We're thinking of switching over the YP queue. A friend's gal will be joining the EIPIC class in Feb and she told me that the transport grid basically covers Woodlands area (she's at Old Airport Road) so she's sorting out transport issues.

I don't mean to come across as preachy ..... I think you have a lot of things on your mind right now so try to settle urgent, immediate stuff first coz there's only so much energy to go around and it's better to pick your battles. And it's very important for you to have your confinement done properly. I had a very 'mobile' confinement coz was keeping watching at the hospital and my stitches took forever to heal. Plans about the future also need time to reflect , mull over and discuss.

 

[janice chia sanchez]

Hi Yvonne,

I have been reading your posts and I'm can identify some of your feelings of insecurity, fear etc.

Since I quitted my job in Apr last year, I felt that my boy wasn't doing well overall. He don't response much when we call his name, delay in his motor skills etc. When we finally got an appointment to see a child development doc in NUH in Sep last year, we told her that we suspect that our boy might have Autism. The doc started immediately to arrange OT and ST for him. We also saw a Nerogenetics doc.

Well, on the same month (Sep) thats when I discovered that I'm pregnant. And my 1st trimester was terrible. I had severe vomiting, pre-natal depression and bed ridden (later on my blood test shows that I have thyroid hormones inbalance). We had no one to take care of our boy as I was very sick. Me and my husband was so stress.. Having to cope with the new discovery that my son might have Autism yet I can't help him bec I'm so sick.. Thoughts of suicidal, fears, worries etc came to me like a flood drowning me.. I lay in bed helpless... Praying that God will help me and my family to pull through this trial. My husband had to cut down on his work to take care of my boy...

I'll like to encourage you that slowly but surely you will feel stronger.. I'll pray for you and your family. It's during trials like these that make our character stronger and also in my case, church friends came and supported us. Like you, at 1st I had so much negative feelings.. but slowly we'll overcome them one step at a time.. It has been 4 months and I still have lingering thoughts of fear and worry but much more cope-able.

We are so thankful to God that He grant my son favor to be put on waitlist for early intervention prog.. Choosing a special school for him was a very nervous event for me.. We finally settle for Autism Resource Centre. We when to rainbow Margaret D also and quite like it there but it's a bit far for my son to travel.

It's really great that you took a brave step to start choosing a school for your gal. Can really sense that you trying your best and so don't be too hard on yourself yeah.. Do remember to take care of yourself as this will help you in all run...

God bless,
Janice

 

[littlehelper]

Kids follow by example so if you set a good one by loving both of them equally i m sure she will follow.
Children dun see any differences thats why you see kids playing in the playground altogether they don't discriminate.However like mayb in other countries as kids grow older they discrimitate cos their parents do.
however very rare in singapore.
Cos racial and religous harmonious.
Don't worry i m sure your girl will understand as she grow older and now as she is young she won't be able to tell a diff she will treat him just like normal kids do to their siblings.
But do spend equal time with her and in case she gets jealous.

In the child care center there is a boy with mild autism and all the teacher tells his classmates is:" he is different and special" And they are all very good! They are all accepting towards him.Sometimes he wants to play with them but DON'T KNOW how to, he will destroy their blocks and all they will just sigh and rebuilt again.
Very good kids.
They are only 3!Some 4.