Introduction + child's Medical condition

[karinc]

Hi

I'm new to this forum. Was surprised to find a singapore forum for parents with special needs child. I have a 5 yo girl with down's syndrome. I also have another 2 boys, aged 3 and 1 mth.

It really tough to be a parent esp in S'pore where support for special needs are very limited. Had so much problem integrating her to mainstream childcare, and therapy sessions are so expensive. Until now, esp after giving birth to my 3rd child, I will still thinking about the question "Why me??" :embarrassed: I just hope that the when my girl is older, Singapore will be a better society for children/adults with special needs.

 

[Angelmum]

Hi

I'm new to this forum. Was surprised to find a singapore forum for parents with special needs child. I have a 5 yo girl with down's syndrome. I also have another 2 boys, aged 3 and 1 month.

U got kaki here...

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 just 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 stay at home mum, 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...

Yr 5 yo girl with Down's attending mainstream childcare ... that's gd! So she not in any special sch? Where do u take her for therapies?

Agree "It's really tough to be a parent esp in S'pore where support for special needs are very limited" thus hope this forum will be a place for special needs parents to chat, vent and share.

 

[karinc]

Hi Angelmum,

My girl is attending both the normal childcare and the special school at Rainbow Center (Margaret Drive). Currently she is having speech therapy at Chiltern Circles. The therapist is using Talktools to help strength her oral motors, which i think is quite good.

Hi Yukee,

I empathised with you. Same as you, I did the blood test and all results show that it's normal and only after my delivery, the paediatrician then told us that the baby need a blood test to test for genetic abnormality. Being a first time parent, we thought that it was just a normal routine. It was a shattering news for us when the pd explain the result to us. Thank god, my husband stood by me and gave me alot of assurance and my family members shower my girl with alot of love.

your girl is attending which special school? How is she doing in the PCF? I initially wanted to let her go to PCF, but I thought that the class ratio is too big and my girl will have problem adapting.

 

[Angelmum]

Hi karinc

Gal previousely MD, now we at RC Yishun. Yukee's JX same as you.
I heard of Talktools, think last year they came to RC for presentation.

 

[epicurean]

Hi

I'm new to this forum. Was surprised to find a singapore forum for parents with special needs child. I have a 5 yo girl with down's syndrome. I also have another 2 boys, aged 3 and 1 month.

It really tough to be a parent esp in S'pore where support for special needs are very limited. Had so much problem integrating her to mainstream childcare, and therapy sessions are so expensive. Until now, esp after giving birth to my 3rd child, I will still thinking about the question "Why me??" :embarrassed: I just hope that the when my girl is older, Singapore will be a better society for children/adults with special needs.

Hi Karinc,

Welcome *hugs*

 

[Yukee]

Hi Karinc,

sorry i did not login tis 2 wks so did not reply you...btw, welcome to tis forum...

Like Angelmum said, my gal is attending Rainbow Centre MD on Tue & Thur (am)...the other days she attend PCF Childcare Nursery 2...the teachers there said she is doing well, but I can see she is abit slower...mayb their expectation for her is not so high, so when she can attain certain goals they consider she is good...actually i send her there just want her to mix around normal kids, let her know, she can make friends with other kids, not only the friends in RC...for adapting, dont"t worry about it...i dono whether she can adapt or not, i just let go...she cried for about 3/4mths, after that she is ok...initially can see she only play on her own, whenever i went to pick her up, she is always playing alone at one corner, only until mid of last year (which is after 1+ yrs) then she starts playing with the classmates...think they need more time...which childcare your gal attending? Is she doing ok?

 

[rae]

Re: Being Special - Parenting Child with Medical Conditions

hi everyone... for those from the previous thread, this is rae, with a chromosome disorder ger, turning 5 years old in a few months. my story will follow very soon. thanx angelmum.

by the way, i may be appearing in wan bao (evening chinese papers) soon. and i hope they have space to publish this link, so that more parents can join us.

 

[menkesdisorder]

Re: Being Special - Parenting Child with Medical Conditions

Hi all, I am new here. Will be posting more about what my son is suffering from. Its called Menkes Syndrome.

 

[Angelmum]

Re: Being Special - Parenting Child with Medical Conditions

hi everyone... for those from the previous thread, this is rae, with a chromosome disorder ger, turning 5 years old in a few months. my story will follow very soon. thanx angelmum.

by the way, i may be appearing in want bao (evening chinese papers) soon. and i hope they have space to publish this link, so that more parents can join us.

finally I see you here!
When the ad out, you let me know cos I dont buy newspapers :001_302:


Rae's girl, Rachael: 10/2004
Unbalanced chromosome translocation
karyotype : 46,XX,der(13)t(11;13)(q22;p12) resulting in partial trisomy of the long arm of chromosome 11 from q22 to qter

Rachael was born with a chromosome disorder that was not detected during my pregnancy, so it was a terrible shock for us when we knew she was sick after she was born. In fact, it’s so complicated, there isn’t a syndrome to it, it’s just a string of karyotype. When she was born (after me enduring 10 hours of labour pains and an emergency c-section), Rachael needed help with her breathing due to her heart conditions so she was sent to NICU immediately, after I saw her for only 5mins. When I could finally get out of bed to visit her the next day, she looked so frail in her cot, far from the healthy, bouncy baby we had expected. Oxygen was pumped into this box covering her head. She couldn’t drink on her own, so an NG tube was placed in her mouth leading to her stomach to bring milk straight to her stomach. There were wires stuck onto her little body to ensure her heartbeat, oxygen level and respiration were okay. The doctors said she would need several operations from what they can see. Just how many they weren’t sure. More tests would be needed to determine the nature and extent of her condition.

Rachael was first suspected to have Trisomy 13, due to her club feet, low set ears, heart problems and central cleft palate. The only information we had then was that Trisomy 13 usually results in stillborns, or they usually survive only 2weeks to 2months. However, to confirm her disorder, we had to wait for the results of the genetic test, which would take 2 weeks. Although they managed to rush through the tests in 8 days, it was an agonising 2 weeks. As first-time parents, our hopes, our dreams... our entire world came crashing down. As Rachael struggled to breathe and to cling on to life, we held our breath each time we looked at her tiny body, going through so much pain and discomfort. How we wish we could take her place or do something, anything at all, to reduce her pain.

Rachael was, and still is, very very strong willed, and definitely as strong headed as mummy from the time she was born. As she has fallots tetralogy, the doctors were worried about her saturation and decided to give her oxygen via nose tubes. But my dear girl would have nothing of that sort. When they finally found the tiniest tube to fit her nose, and fitted on her, she wailed out so loudly, you can hardly believe she has severe cardio problems. She went on to cry for another 4 hours, until I finally gave up, and took off the tubes myself, telling the nurses and doctors that I will hold myself responsible should anything happen to her. I’m sure many parents had similar run-ins with their doctors because we know our children best! To everyone’s amazement, she fell into deep slumber (too tired from all that crying), and maintained her saturations at 85% and above, on room air, which the doctors eventually accepted as her baseline. She hasn’t needed any oxygen since then. Haha!

We took many pictures of her every day for fear we may not have the chance again. Life was a roller coaster of emotions. We were happy in the hospital because we got to spend time with our newborn. But sorrow filled us when we returned home each night empty handed without her, and we can only stare at her empty bed with all her new clothes. In fact, we would bring our own clothes, mittens and socks for her to wear in the hospital, then keep them without washing, as they had her “smell”. We can only think then that if she should suddenly leave us, at least we still have her “smell” with us. We sleep in fear every night (if we could sleep at all), fearing the hospital would call us and inform us she’s gone. We even experimented with different routes to see which would get us to the hospital the soonest. 20mins is too long when your child is dying. The Daddy and I did a lot of research on the Internet in the evenings after spending a whole day in hospital with her. While the information prepared us for a lot of things, they were very disheartening at times. In fact, we were so sure we were going to lose her very soon, we begged the doctors for a 2-hour home leave, and brought her home, so that she could sleep in her bed at least once, and see the home that she was supposed to grow up in. It was a very very sad and scary trip and the doctors had to put a nearby paediatrician on standby and warned us many many times that we either had to rush back if she had the slightest change in breathing or call an ambulance. And all this preparation amounted to nothing as she slept through the whole journey! That’s our baby!

We kept to ourselves and rejected any visitation as we didn’t know how to explain her condition to others. We had barely understood it ourselves. We only told our families she had a severe heart condition as that’s easier to understand. We didn’t know ourselves the complete nature of her complications until much later, but something new always comes up when we think that’s all, like the surprise discovery of her brain tumor, when we just got rid of her thyroid problem. We cried every time the thought of Rachael leaving us entered our minds. Why us? What did we do wrong? We blamed ourselves for... whatever. It had to be our fault as parents for anything that happened to our child right? It wasn’t much of a consolation when the blood tests showed that she didn’t inherit the disorder from either one of us. It would probably have been easier if we could just blame someone or something.

Rachael’s first planned operation was the beginning of a series of dramas. Although she was scheduled at 8am, at 9.30am, the doctors were still at her bedside discussing whether to go ahead or not, as her heart seemed to have improved just a little. And there my dear girl was, crying her heart out (literally) because they had fasted her and she was so hungry! When the doctors finally decided to wait and see, and wanted to explain the situation to us, we told them to talk later because we had to feed her first!

As Rachael approached her 3rd week in hospital, we requested for another home leave as we Chinese celebrate the first month of a baby as their first birthday. To our pleasant surprise, the reply we got was we will be discharged! I could not believe that just 3 days before, the doctors just cancelled a life-saving operation on her, and now we can go home! Yeah! But the happiness was very short-lived. There were so many things we had to learn and prepare before we could convince the doctors that we can care for her at home, and it hit us hard then that it will be a rocky road.

We immediately hired a domestic helper, and when Rachael was 4 months old, Daddy had to fly 25 hours away to the US for a job training for 6 months. From then on, Rachael was in and out of hospitals for different reasons and Rachael’s operations got more and more dramatic. 45mins operation would extend into 3 hours. 3-hour operation extended into 6 hours in recovery! Something unexpected would happen every time. Most of the doctors already classified her as “top tricky patient” in their discipline! Haha! By then, I was already back to work full-time, and we moved back to my parents’ place so we had more hands to help. When I look back, it still amazes me how we managed through that period, with several operations in between, and even one critical ICU admission that sent daddy flying back, and by the time he landed, Rachael was already stable. Eventually, I converted to part-time work as I could not cope. At her peak, Rachael was seeing 11 doctors and 3 therapists and the schedule was killing me.

When Rachael celebrated her first birthday, we threw a little party for family and close friends, and it was very touching for everyone. Although Rachael was not normal, she is very well-loved by our families and friends, and everyone was happy to see her come so far. After going through no less than 10 operations (a couple major, mostly minor), she was warded in the hospital less and less frequently, and I was able to discharge many doctors out of the initial 11 we were seeing. I never thought before that I would ever be able to care for a sick person, let alone my own child, but I think I have proven many people wrong, especially myself, when I could handle tending to her scary operation wounds (the worst being the disgusting stoma), her tantrums, her feedings, the hours of wait outside the operating theatre, the many nights caring for her at the hospital, sleeping on hard cold chairs, and even quitting my job to care for her myself, while the daddy went overseas a couple more times. I have done many things beyond what I ever imagined I was capable of. I even earned myself a “reputation” for telling the irresponsible doctors off for not doing their jobs properly! But for the dedicated doctors, I thank them with deep gratitude, for they not only heal my child, they heal me too. The doctors knew the Daddy was overseas most of the time, and always asked if I was coping well. And I know I could do all these because I had the strong support, help and love from our families and dear friends, and also the team at the hospital. I couldn’t have done it alone.

Those were the dark days when we just had to take a day, an hour, a minute at a time. Sometimes we wished something would take her away and she would stop suffering. But when we see her angelic face and her charming smile, we know that our lives would be so empty without her. Rachael is now in a stable condition, and having a ball of a time attending a wonderful special school where the teachers adore her.

We’ve stopped asking ourselves those questions for which there are no answers. We just feel blessed each day that our Little Angel is still with us

 

[Angelmum]

Re: Being Special - Parenting Child with Medical Conditions

Hi all, I am new here. Will be posting more about what my son is suffering from. Its called Menkes Syndrome.

look forward to more postings/details ......

 

[rae]

Re: Being Special - Parenting Child with Medical Conditions

finally I see you here!
When the ad out, you let me know cos I dont buy newspapers :001_302:

hey angelmum... thanx for posting my story here. i immed got an email from an anxious father of a new born cleft palate baby asking for info and that is what this forum is for!

there isnt much help we can get from "outsiders", so its up to us parents to help one and another. a not to all... rachael's story appeared on 7 aug wan bao, and they did publish the link to our special needs forum. lets hope more parents see the story and come join us so that we can support each other!!

my ger will be going for her heart op on wed. pls pray for her too. thanx!

 

[Angelmum]

Re: Being Special - Parenting Child with Medical Conditions

... rachael's story appeared on 7 aug want bao, and they did publish the link to our special needs forum. lets hope more parents see the story and come join us so that we can support each other!!

my ger will be going for her heart op on wed. pls pray for her too. thanx!

hope to see more ppl coming in ..... ancing_wub:

for Rachael

 

[Yukee]

Hi Rac, nice to hear from u again...how is Rachel?...everything ok?

Hi Menkesdisorder...welcome here.

 

[lphbrenda77]

Hi I am new to this forum. Was looking for support group for parents with special child.
My daughter was born with SED = spondyloephysealdysphagia which is a kind of dwarfism. It is congenital as my hubby has this condition as well. (he is only 1.4m tall!)

People with this condition r usually short 90cm to 1.45m and they might have hearing and vision problem. They might not be able to walk and will have problems with their lungs as their body is too short. My daughter stayed in the High Dependency for 8 days since birth for breathing problem. It was quite heartaching to see her with the feeding tube as well as the oxygen tube. It took me a few days to train her to drink from the bottle without turning blue. Even when she was discharged, she turns blue whenever she drinks milk as she needs to put in twice the efort of a normal baby. Which is why I will not allow her to cry for more than 20mins as her face will turn blue when she has lack of oxygen.
Although not many plp can notice that her limbs are very short, I guess when she grows older plp will start noticing and give weird stares. I just hope that plp will treat her as a normal child and see beyond the fact that she is just little for her age.

 

[Angelmum]

Hi I am new to this forum. Was looking for support group for parents with special child.
My daughter was born with SED = spondyloephysealdysphagia which is a kind of dwarfism. It is congenital as my hubby has this condition as well. (he is only 1.4m tall!)

People with this condition are usually short 90cm to 1.45m and they might have hearing and vision problem. They might not be able to walk and will have problems with their lungs as their body is too short.

hi
Just curious, u aware of yr chances of getting a child with SED?
Has yr gal been tested on vision and hearing?

 

[lphbrenda77]

hi
Just curious, you aware of your chances of getting a child with SED?
Has your gal been tested on vision and hearing?

Actually my hubby didnt know that he had this condition. His mom lied to him that he is short because of an accident that had happen when he was in her womb. So all these while we thought that we dont have to wory that it is congenital. So when I got pregnant, the scan showed that my baby's limbs were very short. My hubby then told his dad which in turn his father told him the truth about his condition. So I was quite upset but I chose to continue the pregnancy and gave birth to my girl in May. I hope my daughter will not blame me for bringing her into this world.

 

[lphbrenda77]

Actually my hubby didnt know that he had this condition. His mom lied to him that he is short because of an accident that had happen when he was in her womb. So all these while we thought that we dont have to wory that it is congenital. So when I got pregnant, the scan showed that my baby's limbs were very short. My hubby then told his dad which in turn his father told him the truth about his condition. So I was quite upset but I chose to continue the pregnancy and gave birth to my girl in May. I hope my daughter will not blame me for bringing her into this world.

She pass her hearing test when she was 2 months old and the eye doctor cleared her of any eye problem. So right now i am just praying that she will be able to walk. Her motor development is behind her normal peers as she still cant lift herself up when lying on her tummy and she also cant turn herself as she has very short limbs.

 

[Angelmum]

So right now i am just praying that she will be able to walk. Her motor development is behind her normal peers as she still cant lift herself up when lying on her tummy and she also cant turn herself as she has very short limbs.

I guess she's now 5mths old?

Actually my hubby didnt know that he had this condition. His mom lied to him that he is short because of an accident that had happen when he was in her womb. So all these while we thought that we dont have to wory that it is congenital. So when I got pregnant, the scan showed that my baby's limbs were very short. My hubby then told his dad which in turn his father told him the truth about his condition. So I was quite upset but I chose to continue the pregnancy and gave birth to my girl in May. I hope my daughter will not blame me for bringing her into this world.

hope yr gal like yr hubby r miracles, able to lead normal life.

 

[lphbrenda77]

Thanks angelmum, I am glad to have found this forum as only mothers with special care children are able to understand each other worries and concerns and anger.
I also have a cousin who has down syndrome and is now 12 years old studying in a normal school. My aunt never gave up even though my cousin barely pass every subject. SHe believes that my cousin should be given a chance to learn like any other normal child. So to all moms whose child is down syndrome, never give up hope!

 

[yummymummy]

Re: Being Special - Parenting Child with Medical Conditions

Rae's girl, Rachael: 10/2004
Unbalanced chromosome translocation
karyotype : 46,XX,der(13)t(11;13)(q22;p12) resulting in partial trisomy of the long arm of chromosome 11 from q22 to qter

We’ve stopped asking ourselves those questions for which there are no answers. We just feel blessed each day that our Little Angel is still with us[/quote]

Angelmum thanks for introducing us to Rae, Rae we meet again here...reading your story reminds me so much of what we went through with Vera as well. And I share your above sentiment totally. Although Vera is full trisomy instead of partial trisomy, I still hope she can reach 5 years like your girl!