Accepting my own Gal

[Angelmum]

Too be frank, i never hope that 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.....

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.

That's a common worry/concern of special needs parents. Govt rolled out the Trust Fund thinking it would help but it has a lot of 'loopholes'.

 

[Angelmum]

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

Rec'd circular from YPS they hv just enrolled 30 new EIPIC children. MD is better, more experienced therapists + teachers and location is more centralised thus the Q is longer. YPS is new and is bigger thus able to take in more kids.

No transport provided for West students. MRT, 10mins walk to sch.
Another multiple disabilities sch is AWWA, Hougang for those staying in the North.

 

[Yvonne Lim]

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 dont'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.

Hi Epicurean,

YPS is a new school and with more classroom therefore the queue is slightly shorter, you might like to try calling them there, the social worker that help us is Vernon and Puay Sze, I can get the number for you to call and check, they have transport to pick you from your home too...

Don worry, I know you meant well and not preaching me.. I am very upset yesterday, I brough my gal for heart scan and she is breathing very hard need an emergency ops on Mon, I cried so hard yesterday, she is barely one month old and she hv to go thru ops.. My heart went down to the drain...

This January is really tough for the family, one worry after another...

I feel so dead now, her heart ops is on Mon and she need to stay in NICU for 10 days...

 

[Yvonne Lim]

Rec'd circular from YPS they have just enrolled 30 new EIPIC children. MD is better, more experienced therapists + teachers and location is more centralised thus the Q is longer. YPS is new and is bigger thus able to take in more kids.

No transport provided for West students. MRT, 10mins walk to sch.
Another multiple disabilities sch is AWWA, Hougang for those staying in the North.

Thanks Angelmum for the info, yes alternatively can also contact CEL for referral, Vernon from Rainbow centre did advise us of the alternative centres like AWWA too

 

[Yvonne Lim]

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 dont'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 dont'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

Thanks Janice, I hope I will go thru this soon and I hope my little will recover well... I don dare to think of the future anymore, now we can only live a day by it comes...

 

[xiaochuan]

Yvonne,

My thots are with you and your gal. Hope everything turns out well on Monday.
In the meantime, you need ample rest, k

 

[Yvonne Lim]

Yvonne,

My thots are with you and your gal. Hope everything turns out well on Monday.
In the meantime, you need ample rest, k

Xiaochuan, I am very afraid very worried... The tots of my gal lying down wif the tubes r enough to break me.. Am going to stay wif her in the hospital as much as my body can take it.. Poor gal is barely 3 weeks old and hv to go thru ops...

 

[janice chia sanchez]

Hi Yvonne,

Will keep your gal in prayers for her heart opp.
Take care..

Janice

 

[janice chia sanchez]

Hi Yvonne,

Will keep your gal in prayers for her heart opp.
Take care..

Janice

 

[epicurean]

Yvonne,

I'm so sorry to hear about your gal needing an emergency heart op. And it's terrible to have this worry coming on top of everything else that has already happened. Seb & I are keeping you, your gal & family in our prayers.

I can understand how you're feeling. When he was 1.5 days old, he had to undergo an op to put a pressure monitor inside his brain to keep track of the pressure level coz his brain was so swollen and was bleeding so profusely that the PICU docs needed that info to continuously adjust his medications and strategise on subsequent actions to take. The op was 1-hour long and I was freaking out in the waiting room, crying non-stop. It didn't help matters that 4 hours earlier, the docs discovered his blood couldn't clot when he was wheeled into the operating theatre ... so he was wheeled back out for a blood transfusion & IV infusion of Vitamin K plus confirmation that he could undergo that op. He made it out of the op fine ... the next few days were touch & go with a few heart-stopping episodes but he also pulled thru those scary days, stubborn boy that he is.

Times like this strip us down to our faith, be it in God or our family. Please know and take heart that people are praying for your gal and her op. Please also rest and pace yourself. I know it's difficult to do so and you sometimes probably have to force yourself to eat, sleep or rest but you really need to take care of your own self and recover well & fully from confinement to be there for your gal.

PS. Thanks for sharing about contacting Vernon and Puay Sze. It's ok, I'll call the YPS general line to ask for them.

 

[xiaochuan]

Dear Yvonne,

I empathise, really.

During my darkest moments, i hang on to this forum to find the emotional support i so needed. Trust me... many times during the day, i login to read the posts over n over again to find strength. (i guess u are doing the same now)

While u spend time with your baby at the hospital, pls do not neglect your health n your elder child.

For me, i had a "mobile" confinement like epi. I was literally btwn home and hospital daily. So much that my elder child was "forced" to be independent... there is a certain damage done to our relationship. He no longer sees his "happy" mum, and he tries to get out of my way becos he so feels my mood.
I am still trying to fix this damage.

Do u have anyone to relieve u in hospital such that you can be home for rest while someone in the familily stays with baby? Are u with KKH?

If you do need a shoulder to cry on .. or a listening ear, pls let me know, ok.
I also stay in Bedok neighborhood.

Xiaochuan, I am very afraid very worried... The tots of my gal lying down with the tubes are enough to break me.. Am going to stay with her in the hospital as much as my body can take it.. Poor gal is barely 3 weeks old and have to go thru ops...

 

[Yvonne Lim]

Dear Yvonne,

I empathise, really.

During my darkest moments, i hang on to this forum to find the emotional support i so needed. Trust me... many times during the day, i login to read the posts over n over again to find strength. (i guess you are doing the same now)

While you spend time with your baby at the hospital, pls do not neglect your health n your elder child.

.

Xiaochuan,

Yes you are right, i log on to read the post again and again to find strength and support.. not sure if this is a way of running away...

Yes my mum and parents in law will help me and take turns to take care of my little girl..

The operation is at KKH.. Thanks so much for offering yr support...

 

[epicurean]

Rec'd circular from YPS they have just enrolled 30 new EIPIC children. MD is better, more experienced therapists + teachers and location is more centralised thus the Q is longer. YPS is new and is bigger thus able to take in more kids.

No transport provided for West students. MRT, 10mins walk to sch.
Another multiple disabilities sch is AWWA, Hougang for those staying in the North.

Angelmum,

Thanks for the info about the trust fund. Yeah, to us, it raises more questions and red tape than reassurance.

I was informed that MD transport grid is almost islandwide and it's kinda near my place so we opted for that. After waiting for so long, YPS looks more enticing!

 

[Yvonne Lim]

Yvonne,

I'm so sorry to hear about your gal needing an emergency heart op. And it's terrible to have this worry coming on top of everything else that has already happened. Seb & I are keeping you, your gal & family in our prayers.

.

Epicurean,

Seb is really a tough boy, going thru ops at only 1.5 days is really incredible.. Thanks for praying for my family..

Don't need to call the main line, you can call Vernon at 6475 2072/6472 7077 or Puay Sze at 6482 2592 (ext 218). Vernon is from Margaret Drive but she is a very experience and detailed lady, very helpful too, she meet us at Yishun Park to go thru with us tho she is not based there, Puay Sze is fm Yishun Park... I hope this helps...

 

[xiaochuan]

Hi Yvonne

At KKH, u may like to get the doc ref your gal for palliative care program. The team (comprising of clinician n doctors) will visit your gal at home (free of charge) on weekly basis.. and helps provide tips on caring for her.

My child was under that program. They came by each week to check on the child and provide tips on how we can provide better care for her.

No harm asking if u think u need the support

Xiaochuan,

Yes you are right, i log on to read the post again and again to find strength and support.. not sure if this is a way of running away...

Yes my mum and parents in law will help me and take turns to take care of my little girl..

The operation is at Kandang Kerbau Hospital.. Thanks so much for offering your support...

 

[yummymummy]

Dear Yvonne,

just read thru your whole thread. My gal has Trisomy 18. It's even more deadly than Trisomy 21. Like you, risk for Trisomy 18 was tested with Nuchal Translucency scan to be LOW. So, not amnio suggested by gynae. Since then I've learnt not to believe in SCANS so much. We pay a lot for them, supposed to assure parents, but they can give false info, false assurance. Doctors call it "false negatives".

Another way to reconcile with it, at least for me, is that your gal DIDN'T want you to find out about the trisomy. That's why she hide it from doctor and you. So she could make it into this world to see her mummy and daddy.

In my case, if T18 were found to be high risk in NT scan, probably would have aborted and not get to enjoy the miracle life of my baby now coming 2 years old.

Surgery is v draining: have this strategy to offer: Round up your support group - arrange to do shifts at the hospital, get more educated family members you can trust to get updates from docs and update you, arrange transport from those who have cars. My daughter also just in ICU 7 days - I'm 7 months preggie - so this strategy helps me from wearing out.

One more thing: rest assured the Operating team at KK is excellent. So are the surgeons, my gal had surgery there as well. NICU care is also excellent esp for newborns - nurses there are really experienced and dedicated - so rest assured that she is in good hands!

Would like to share these inspirations I've gathered. Hopefully will help in some way to seeing your gal differently.

Love and a Leap of Faith: philosophical

Fingers crossed all goes well for the surgery.

 

[Yvonne Lim]

Dear Yvonne,

just read thru your whole thread. My gal has Trisomy 18. It's even more deadly than Trisomy 21. Like you, risk for Trisomy 18 was tested with Nuchal Translucency scan to be LOW. So, not amnio suggested by gynae. Since then I've learnt not to believe in SCANS so much. We pay a lot for them, supposed to assure parents, but they can give false info, false assurance. Doctors call it "false negatives".

Another way to reconcile with it, at least for me, is that your gal DIDN'T want you to find out about the trisomy. That's why she hide it from doctor and you. So she could make it into this world to see her mummy and daddy.

In my case, if T18 were found to be high risk in not scan, probably would have aborted and not get to enjoy the miracle life of my baby now coming 2 years old.

Surgery is very draining: have this strategy to offer: Round up your support group - arrange to do shifts at the hospital, get more educated family members you can trust to get updates from docs and update you, arrange transport from those who have cars. My daughter also just in ICU 7 days - I'm 7 months preggie - so this strategy helps me from wearing out.

One more thing: rest assured the Operating team at KK is excellent. So are the surgeons, my gal had surgery there as well. NICU care is also excellent esp for newborns - nurses there are really experienced and dedicated - so rest assured that she is in good hands!

Would like to share these inspirations I've gathered. Hopefully will help in some way to seeing your gal differently.

Love and a Leap of Faith: philosophical

Fingers crossed all goes well for the surgery.

Yummymummy,

I am reading yr blog and tearing while reading... Vera is indeed a strong little girl, and of course u and yr hubby.. I admire both yr strength to go thru this and the acceptance of yr little gal...

Frankly when i know tat my gal hv Trisomy 21 I cant even look at her... I can't believe the fact and cant find any strength in myself to go thru thru it....

 

[littlehelper]

I like your statement :" Special needs children are not about grief; they are about hope"
I totally agree with it and i think though it may be very very tough and challenging sometimes they are the ones who put things back into place and help ppl to understand the importance of stuff and not take things for granted.
They are definitely special in a very unique and meaningful way.

 

[epicurean]

dont't need to call the main line, you can call Vernon at 6475 2072/6472 7077 or Puay Sze at 6482 2592 (ext 218). Vernon is from Margaret Drive but she is a very experience and detailed lady, very helpful too, she meet us at Yishun Park to go thru with us tho she is not based there, Puay Sze is fm Yishun Park... I hope this helps...

Hi Yvonne,

Thanks for the contact numbers. Yep, it really helps

Our thoughts and prayers are with you & your family.

 

[epicurean]

I like your statement :" Special needs children are not about grief; they are about hope"
I totally agree with it and i think though it may be very very tough and challenging sometimes they are the ones who put things back into place and help ppl to understand the importance of stuff and not take things for granted.
They are definitely special in a very unique and meaningful way.

littlehelper,

Thanks The line came from a book of real-life stories shared by parents with special needs kiddos.

Yeah, my priorities and worldview have completely changed when my boy came along. And that change was painful as I questioned myself what the truly important things in life are. As most things are difficult for him, I'm grateful that he has happy days, that he can do whatever he can.

I admit I do really long for him to say 'mummy' or hug me but I also know that he may not be able to do that for a long time or even the rest of his life. It's tough loving someone without the reciprocal responses or actions that are commonly expressed in relationships, so I would say Seb has been my best teacher about unconditional love, about loving without expecting anything in return. And somehow the most sweetest moments are those late at nights when everyone in the household is fast asleep and it's just him & me as he snuggles trustingly against me as he dozes off to dreamland.