I started to source and read on Special Need kids (in Singapore) since last month when my Boy neurology told us his DNA blood test result. He also suffered from chromosome deletion. Our world crash for the next few weeks. He is only 22months now and we had to look at as "any kid" we dreamed of. Now waiting for CEL to arrange for his special need. Found this forum very supporting.
Introduction + child's Medical condition
Angelmum
Moderator
I saw your posting last week but I've can't recall whether there was an IQ test so unable to comment. All I can remember was special school assessment/observation.
Your girl has a medical term?
chromosome deletion ..... any medical term?
We've been thru those dark days. Lives now not wonderful, problems still lies ahead but we hope the experiences we shared here could make your days a bit easier.... avoid those dead corners or long-winded routes that we've taken.
We, special needs parents started with no help from our government (now still not much support), even doctors can't really help as there are simply too many rare medical terms (no knowledge to share with patients and families) ... if there's anything to vent or questions that you want to know, try posting here.
Angelmum
Moderator
To all
2012 is at the door.
Remember
Life is short, break the rules,
Forgive quickly,
love truly, treat yourself well,
laugh uncontrollably and never regret anything that made you smile.
May the dawning of this New Year,
fill your heart with new hopes,
open up new horizons and bring for you promises of brighter tomorrows.
May you have a joyful New Year!
2012 is at the door.
Remember
Life is short, break the rules,
Forgive quickly,
love truly, treat yourself well,
laugh uncontrollably and never regret anything that made you smile.
May the dawning of this New Year,
fill your heart with new hopes,
open up new horizons and bring for you promises of brighter tomorrows.
May you have a joyful New Year!
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Angelmum
Moderator
It's ok.
Do note you need not use your really identity so I suppose not many people would guess it's you. :001_302:
Re: Introduce yourself & yr child +Medical condition
Hi AngelMum, I will need advise from you. My boy is diagnosed to have Angelman Syndrome last Nov. My world crashes for the next few weeks. Its really difficult for you to spell out his Syndrome to other. But its now time to pick up to move on. He is going to 2 yo next month. Meanwhile, applying for Rainbow Center at Yishun Park. Any ideas, how many hours/days should I start him to the RCYP at the beginning? My boy started crawl on tummy at 17months. Now he can pull to stand and cruise on bed/sofa/table/chair. Please help and I really appreciate it.
Hi AngelMum, I will need advise from you. My boy is diagnosed to have Angelman Syndrome last Nov. My world crashes for the next few weeks. Its really difficult for you to spell out his Syndrome to other. But its now time to pick up to move on. He is going to 2 yo next month. Meanwhile, applying for Rainbow Center at Yishun Park. Any ideas, how many hours/days should I start him to the RCYP at the beginning? My boy started crawl on tummy at 17months. Now he can pull to stand and cruise on bed/sofa/table/chair. Please help and I really appreciate it.
Angelmum
Moderator
Re: Introduce yourself & yr child +Medical condition
He looks better than mine. My girl was only able to crawl after 2yrs old, after enrolment into Rainbow Margaret drive. Currently, she's attending Yishun as we find it mission impossible to squeeze into peak hr morning train.
When attending intervention, you'll need to ask therapists for advice and hands-on/work with a routine. You cant rely fully on special school.
Read more here: Welcome to the Angelman Syndrome Forum - Dedicated to the Angelman Syndrome Community
Know what to expect when you've an Angel at home: Youtube videos - AS
If you're keen to meet other Spore Angels, let me know.
Child below 5yrs, better to start Early Intervention. Usually twice a week, could be 2hrs or 4hrs/day.
He looks better than mine. My girl was only able to crawl after 2yrs old, after enrolment into Rainbow Margaret drive. Currently, she's attending Yishun as we find it mission impossible to squeeze into peak hr morning train.
When attending intervention, you'll need to ask therapists for advice and hands-on/work with a routine. You cant rely fully on special school.
Read more here: Welcome to the Angelman Syndrome Forum - Dedicated to the Angelman Syndrome Community
Know what to expect when you've an Angel at home: Youtube videos - AS
If you're keen to meet other Spore Angels, let me know.
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Re: Introduce yourself & yr child +Medical condition
Morning Angelmum, I had been actively reading Welcome to the Angelman Syndrome Forum - Dedicated to the Angelman Syndrome Community
ever since my boy is diagnosed. How I envy the other country the help and expert they can get.
Now at home, we play, talk and some hands-on with him while waiting for the enrollment.
Yes, I would like to other Spore Angels. Want to learn how strong the other parents are and how they cope and manage.
I am still suffering from sleepless nights.
I cannot thank you enough for your kind reply and support.
Morning Angelmum, I had been actively reading Welcome to the Angelman Syndrome Forum - Dedicated to the Angelman Syndrome Community
ever since my boy is diagnosed. How I envy the other country the help and expert they can get.
Now at home, we play, talk and some hands-on with him while waiting for the enrollment.
Yes, I would like to other Spore Angels. Want to learn how strong the other parents are and how they cope and manage.
I am still suffering from sleepless nights.
I cannot thank you enough for your kind reply and support.
Re: Introduce yourself & yr child +Medical condition
Hi Angelmum, how r you? Had not been posting for quite sometime. It had been a tiring year for me. I had send my gal to a mainstream school...for the pass 1 year the thot of sending her to special Sch or mainstream and meeting a few principals and some negative input from them really drain me out physically & mentally. Finally, we thot just give her a chance and let her try, just for 1 or 2 year. Thou she is struggling with the academics in Sch, but she is enjoying her new Sch life & meeting her new friends here. To let the principal accept her without worries, I promise him that I will stay with her for the 6hr when she is in the Sch. As I don't have a maid to help me, everyday I rush like mad when my husband is not in town, cos I have another little one to fetch around & cleaning up the house. One good thing is that her form teacher is so nice, she appoint 6 buddies to take turns to look after my gal Today her Allied Educator told me I dont't have to stay in the Sch as my gal is able to follow the class routine already, furthermore there are 6 little angels helping her... I was like...wow, my dear...you have graduated.
I hope everything can go smoothly, not only for my gal but also all the special children here.
Hi Angelmum, how r you? Had not been posting for quite sometime. It had been a tiring year for me. I had send my gal to a mainstream school...for the pass 1 year the thot of sending her to special Sch or mainstream and meeting a few principals and some negative input from them really drain me out physically & mentally. Finally, we thot just give her a chance and let her try, just for 1 or 2 year. Thou she is struggling with the academics in Sch, but she is enjoying her new Sch life & meeting her new friends here. To let the principal accept her without worries, I promise him that I will stay with her for the 6hr when she is in the Sch. As I don't have a maid to help me, everyday I rush like mad when my husband is not in town, cos I have another little one to fetch around & cleaning up the house. One good thing is that her form teacher is so nice, she appoint 6 buddies to take turns to look after my gal Today her Allied Educator told me I dont't have to stay in the Sch as my gal is able to follow the class routine already, furthermore there are 6 little angels helping her... I was like...wow, my dear...you have graduated.
I hope everything can go smoothly, not only for my gal but also all the special children here.
Angelmum
Moderator
Re: Introduce yourself & yr child +Medical condition
I'm so-so. Had been working for 2yrs, relying on maid to help to care of my girl and housework. Nowadays, it is not a blessing to have domestic worker cos a lot are not truly here to work. Told my current maid, the day she decides to go home, I'm quitting cos I find it hard to get a replacement. It is a new risk. Will not keep increasing her salary nor beg her to stay. What if new maid ill-treat my girl or suddenly runaway, left my girl all alone at home .... worries. Stay home no money, low single-income. Want to continue work, no daycare centre for my girl... Jialat ... I'm grumbling to you again.:elvis::001_302:
So glad you've made a good choice, found a nice school with 6 little angels. JX may not achieve what normal children can do but I guess you didn't set high expectation, just want her to one day become independent, able to take care of herself. :err:. JX can be a different person, there are cases of DS who outperformed.
ancing_wub:So happy for you, one success story.
I'm so-so. Had been working for 2yrs, relying on maid to help to care of my girl and housework. Nowadays, it is not a blessing to have domestic worker cos a lot are not truly here to work. Told my current maid, the day she decides to go home, I'm quitting cos I find it hard to get a replacement. It is a new risk. Will not keep increasing her salary nor beg her to stay. What if new maid ill-treat my girl or suddenly runaway, left my girl all alone at home .... worries. Stay home no money, low single-income. Want to continue work, no daycare centre for my girl... Jialat ... I'm grumbling to you again.:elvis::001_302:
So glad you've made a good choice, found a nice school with 6 little angels. JX may not achieve what normal children can do but I guess you didn't set high expectation, just want her to one day become independent, able to take care of herself. :err:. JX can be a different person, there are cases of DS who outperformed.
ancing_wub:So happy for you, one success story.Re: Introduce yourself & yr child +Medical condition
Angelmum...it is not a success story yet till she is able to go to P6, but I think by end of this year or mayb nx year (if we are thick skin enough), the Sch will suggest us to take her out liao. I know her cognitive is not very good, so think she can only understand 20 or maybe 30% of the lesson, Chinese lesson worst, think only 5%. Thou we keep telling ourselves don set high expectation she is jus there for socializing, but seeing her so far behind her peers we also 'gan jiong' & have to stress her abit, cos there is a long story behind...cos my gal is the 1st downs case in this Sch so they report the case to MOE, their psychologist were here to observe her 2 weeks ago...they also had a meeting with us last year, they don seems to be very supportive abt my gal going mainstream after seeing my gal's IQ report. That's why I am afraid my gal's poor result will give them a reason to ask us to leave.
I know some people out there will say "is better for special needs kids to go to the Sch they belong to" (this sentence really hurt me a lot)...I had heard alot of it during the interviews with some principals and even from some relatives, but if we don push them we won't know where they can go...if 3 years ago I decided listen to those unsupportive people (some of them are the teachers from her special Sch) not to push my gal, I don know she can read so well (thou she may not understand some meaning), she can do simple maths & cloze passage and she can do spelling on her own without mistakes.
Anyway, now we really have to learn to be super thick skin...whatever negative input we heard, we jus "hahaha...ya lor ya lor".
Angelmum...it is not a success story yet till she is able to go to P6, but I think by end of this year or mayb nx year (if we are thick skin enough), the Sch will suggest us to take her out liao. I know her cognitive is not very good, so think she can only understand 20 or maybe 30% of the lesson, Chinese lesson worst, think only 5%. Thou we keep telling ourselves don set high expectation she is jus there for socializing, but seeing her so far behind her peers we also 'gan jiong' & have to stress her abit, cos there is a long story behind...cos my gal is the 1st downs case in this Sch so they report the case to MOE, their psychologist were here to observe her 2 weeks ago...they also had a meeting with us last year, they don seems to be very supportive abt my gal going mainstream after seeing my gal's IQ report. That's why I am afraid my gal's poor result will give them a reason to ask us to leave.
I know some people out there will say "is better for special needs kids to go to the Sch they belong to" (this sentence really hurt me a lot)...I had heard alot of it during the interviews with some principals and even from some relatives, but if we don push them we won't know where they can go...if 3 years ago I decided listen to those unsupportive people (some of them are the teachers from her special Sch) not to push my gal, I don know she can read so well (thou she may not understand some meaning), she can do simple maths & cloze passage and she can do spelling on her own without mistakes.
Anyway, now we really have to learn to be super thick skin...whatever negative input we heard, we jus "hahaha...ya lor ya lor".
Angelmum
Moderator
Re: Introduce yourself & yr child +Medical condition
Quite surprised. This school is not something like Pathlight? Must be xiong ... peer pressure. Normal kids find it stressful so I guess in your case, you'll need a lot more courage to keep up.
If school ok to keep her, let her enjoy those different kind of school days... not everybody can try that. :001_302:
Can try ask to repeat a year.
Quite surprised. This school is not something like Pathlight? Must be xiong ... peer pressure. Normal kids find it stressful so I guess in your case, you'll need a lot more courage to keep up.
If school ok to keep her, let her enjoy those different kind of school days... not everybody can try that. :001_302:
Re: Introduce yourself & yr child +Medical condition
No, is a normal mainstream sch, cos my husband was a old boy there, so they bo bian have to take my gal. Think won't let her repeat...know her capabilities...just let her socialize with her current classmates for 2 years then go...unless between these 2 years her brain suddenly *brink* then will let her continue.
Re: Introduce yourself & yr child +Medical condition
Hi Angelmum, yesterday we just have Parent Interview at Rainbow YSP. Now waiting of the next round. Just told to wait for teacher to decide whether 6hours/week or 8hours/week for my boy. Today is DS 2nd birthday.
Care to share with you the beginning...PM please.
Hi Angelmum, yesterday we just have Parent Interview at Rainbow YSP. Now waiting of the next round. Just told to wait for teacher to decide whether 6hours/week or 8hours/week for my boy. Today is DS 2nd birthday.
Care to share with you the beginning...PM please.
Angelmum
Moderator
Re: Introduce yourself & yr child +Medical condition
Saw news MOE implementing island-wide development screening programme to spot toddlers displaying signs of developmental problems and getting a network of pre-school teachers, family physicians and family service centres equipped with skills to detect and refer these children for medical help if necessary.
Such early intervention, which experts noted could make a difference for some children with developmental issues.
Yesterday, the Enabling Masterplan 2012-2016 steering committee unveiled a raft of proposals - funding to be provided for a nation-wide developmental screening programme for children at the age of nine months, 18 months, and between 24 and 30 months.
Early childhood and special needs education expert felt early detection can make a difference for children with conditions such as global developmental delay, which ranges in severity from learning disadvantages to learning disorders.
Yukee .... maybe the mainstream school will give JX chance. Otherwise, consider SPED schools so the pressure not so great? What makes your hubby or you decided to try that school?
From above link, think the days of younger children are seeing some light. Suppose soon, doctors and nurses can't given excuses like child too early to get a diagnosis and delayed their chances of receiving early intervention.
TODAYonline | Hot News | Towards a lifetime of being enabled
Saw news MOE implementing island-wide development screening programme to spot toddlers displaying signs of developmental problems and getting a network of pre-school teachers, family physicians and family service centres equipped with skills to detect and refer these children for medical help if necessary.
Such early intervention, which experts noted could make a difference for some children with developmental issues.
Yesterday, the Enabling Masterplan 2012-2016 steering committee unveiled a raft of proposals - funding to be provided for a nation-wide developmental screening programme for children at the age of nine months, 18 months, and between 24 and 30 months.
Early childhood and special needs education expert felt early detection can make a difference for children with conditions such as global developmental delay, which ranges in severity from learning disadvantages to learning disorders.
Yukee .... maybe the mainstream school will give JX chance. Otherwise, consider SPED schools so the pressure not so great? What makes your hubby or you decided to try that school?
From above link, think the days of younger children are seeing some light. Suppose soon, doctors and nurses can't given excuses like child too early to get a diagnosis and delayed their chances of receiving early intervention.
Angelmum
Moderator
Re: Introduce yourself & yr child +Medical condition
Anglemum...we decide jus because hb was the old boy, else other sch we went don really supportive abt having a downs in their sch...actually i was looking at APSN, but RC refer her to MINDS, that's why we let her try mainstream before we decide on which special sch she goes...mayb after P2, hopefully APSN will accept her. Anyway now we jus want her to socialize with normal kids, so as to improve her social skills & speech...cos her SLT said she had severe speech delay.
Anglemum...we decide jus because hb was the old boy, else other sch we went don really supportive abt having a downs in their sch...actually i was looking at APSN, but RC refer her to MINDS, that's why we let her try mainstream before we decide on which special sch she goes...mayb after P2, hopefully APSN will accept her. Anyway now we jus want her to socialize with normal kids, so as to improve her social skills & speech...cos her SLT said she had severe speech delay.