All About Autism
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Thanks everyone! There will be many battles won and lost but am glad we emerged victorious in this one.
(Warning, long rambling post)
It really felt like a yearlong military operation. Prep started end of last year with the collation of reports required. In brief, we had to fork out $$ for a private psychologist test because KKH had a long wait list else we wouldn’t have made the deadline of submission. If you want to go entirely by the KKH route, start at least 1 year in advance before deadline. When the report came out, it unfortunately fell just below the school IQ70 cut-off of which then we had to then buffer our application with additional assessments. Though it was effortful, mood was more positive anticipation and hopeful. (A bit indignant at the low score but I put that down to the psychologist conservatively going by the book)
At the 1st assessment in June, C2 managed to go through the review process but DH had to bring him to the class and bolt when his back was turned. Although we weren’t called to fetch him halfway, a teacher had to separately bring him down after the assessment. Still we were optimistic that he would have made it as he wasn’t behaving much different to the rest.
In the waiting time for the results, I was deployed to fight another battle with the mainstream pri 1 registration for C1. Yes I was one of the parents checking back at kiasuparents forum every hour for the number of places left after each stage. Thankfully that was a swift victory.
Then we found out the results were out for the 1st assessments and some parents here got in already. Course then started to become anxious and called the school every other week for info. Response was that C2 was on waitlist and his was a “grey area” case and please be patient while they check to see how many spaces left after confirmations from the first lot. That was also the first time my heart dropped and started to feel miserable but still optimistic as there was still time left in the year.
Then days and months rolled by, I developed into this kan cheong spider and started to check in with PL every other week. ImMeeMee suggested the possibility of school observation, however when I broached this option to them, they said it was only for special cases and wasn’t available to me at that time due to logistical issues.
Then we were notified of a 2nd assessment in Oct. This time it was a complete disaster; while he managed to attend the class with much prodding; he couldn’t sit still and was totally distracted. In fact it took 4 teachers to corral him when he took off running. The teachers also had this ‘no hope liao’ expression on their faces. By then I really felt quite defeated, it hit rock bottom emotionally for me. Family kept saying it wasn’t his time yet and it was for the best. But was still depressed, falling ill easily and zombie at work. Small comfort was my other boy’s orientation which kept me busy logistically and of course the encouragement I got from this thread.
By Nov, we were already arranging appointments on the re-application when we received an email from PL to arrange for a school observation during the PSLE marking week. Wah! Flicker of hope! This time we took no chances and approached this with total military precision. As it was also the first time for the school, the principal was kind enough to hold trial practices before the actual observation. It also helped tremendously that my boy was the teacher’s pet so he was most as ease with her.
Feedback from the principal later was that he was a total angel in front of the assessors, demonstrated independence and able to answer them appropriately. The assessors were also present in his earlier ones so they could see the 180 degree contrast. But of course they couldn’t confirm his place without going through the whole committee approval process. Luckily I already made friends with student admissions. While they couldn’t give me a direct answer, they were quite positive on his chances. And of course the rest was history.
I will stop rambling now but it really was a journey and we know there will be an even longer journey ahead. Still as mentioned before, we need to celebrate these little victories to keep us sane.
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Congratulations belachanbabe! I'm constantly inspired & encouraged by posts like yours (& all sharings by brave mummies & daddies here)
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Was tearing up. Am a mess. Been thru army. The guns and pain brought no tears. But seeing how a special needs mom fight for her child - thats real life heroism. Belachanbabe, you go gal!! Hoo!! Hoo!! Hoo!! He is so going to ace everything in Pathlight …because of you!
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Hello friends
I have started a new thread on PL. Do drop by! :imcool:
http://www.kiasuparents.com/kiasu/forum/viewtopic.php?f=75&t=65795 -
The Purple Parade http://www.purpleparade.sg will be held from 3pm - 7pm at Hong Lim Park tomorrow. The Purple Parade is a movement that supports inclusion and celebrates abilities of persons with special needs. There will be carnival with purple treats and concert performed by the special needs community. The parade march off is at 4pm. So if you are free on tomorrow afternoon, please be there to support!
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Parents, have you heard of the Developmental Disability Registry under the NCSS where parents can place their special needs child on?
For those who have registered your child’s data on the DDR, what are the pros and cons for doing so? And what are the pros and cons of applying for a DDR ID Card?
TIA for sharing. -
ImMeeMee:
My ds's data is registered on the DDR, think most of the Pathlight students are since we registered through Pathlight, and Pathlight School being the key VWO maintaining the students' records. In the letter given to parents, only appointed Pathlight staff and CEL will be able to access the child's information at different levels. If staff resigns from the school, his/her rights will be disabled. So I think the confidentiality is there. I think the main purpose of registering and having this DDR ID card is in the event the child is lost, the police is able to track the information with CEL, when it is absolutely necessary. There is no cost involved for the registration and issuing the ID card. Some benefits that DDR ID cardholders can enjoy are special rates for therapy services, assistive equipment and places of interest offered by participating agencies. Frankly speaking, we've never let ds carries his ID card when we are out, though on the safe side we should in case he got lost. Maybe it's because ds is not the type who will wander off by himself, so it just doesn't occur to us that he should carry his DDR ID card. Sorry that I can't really feedback to you the pros and cons. I guess it's up to the parents if they feel comfortable to register their special needs children's data on DDR.Parents, have you heard of the Developmental Disability Registry under the NCSS where parents can place their special needs child on?
For those who have registered your child's data on the DDR, what are the pros and cons for doing so? And what are the pros and cons of applying for a DDR ID Card?
TIA for sharing. -
Gisten:
My ds's data is registered on the DDR, think most of the Pathlight students are since we registered through Pathlight, and Pathlight School being the key VWO maintaining the students' records. In the letter given to parents, only appointed Pathlight staff and CEL will be able to access the child's information at different levels. If staff resigns from the school, his/her rights will be disabled. So I think the confidentiality is there. I think the main purpose of registering and having this DDR ID card is in the event the child is lost, the police is able to track the information with CEL, when it is absolutely necessary. There is no cost involved for the registration and issuing the ID card. Some benefits that DDR ID cardholders can enjoy are special rates for therapy services, assistive equipment and places of interest offered by participating agencies. Frankly speaking, we've never let ds carries his ID card when we are out, though on the safe side we should in case he got lost. Maybe it's because ds is not the type who will wander off by himself, so it just doesn't occur to us that he should carry his DDR ID card. Sorry that I can't really feedback to you the pros and cons. I guess it's up to the parents if they feel comfortable to register their special needs children's data on DDR.
Gisten
Thanks for information. Likely that we will register with DDR, but without ID card, cos same as you, we are not likely to let her go around by herself and she is not likely to wander off by herself. -
woggles:
Thank you Woggles & Nugget. I think i might try to remove the milk first then soya sauce. Coz i found replacement for these two items. But for bread, cakes and cheese... anyone has substitutes/ recipes? i don't mind baking for him but the recipes that i found online consists of so many different types of flour....i dunno which one is the best combi but i bought a box of gluten free, diary free ready-mix flour from NTUC Finest. i hope it taste ok as my boy is really a fussy eater.einnoc:
Ever since DS has been diagnosed with autism, i started him on 1 occupational and speech theraphy session per wk for the past 3 mths. Though the therapists have gd feedback and said he is improving. But i don't seem to see much difference @home. I heard that some GFCF diet works for some autistic children. Anyone has try b4? While searching for Gluten free & wheat free soya sauce, i found an article on R1H2 virus and Nano Engery Booster Patch theraphyhttp://http://www.natures-glory.com/sub_NEB_details.asp?ProductSID=5540&CatSID=157 . Any parents that have already started your child on this? Any feedback?
hi,
agree with nugget - not easy program or regime to keep to...
in DS' experience it seemed to work. I kept to it for 1+ year. in fact i started it 2-3 months before therapy cos since I was on waitlist, I figured I might as well do something. At that time DS was only 2 so it was easy to remove all gluten and caesin from his diet - I baked my own bread/hard biscuits for biting, made my own pasta, switched to rice milk, made own playdough for him to play etc etc.
Within that 2 months, he started pointing (never did that before!) and seemed to be able to focus on my face longer (i was super KS then, timed down reactions and kept notes to compare). Was also aware of strangers for first times. This happened after diagnosis and before therapy started.
Pros of diet (for DS only - can't say for anyone else)
- slept better and longer through the nights. even till now, DH & I both feel that his sleep during his GFCF days were the deepest and most settled
- seemingly less cranky, smiled more often at me too (that was then.. now he laughs and smiles non-stop for a 7yo!)
Cons:
- super expensive
- whole lifestyle change. even family went GFCF. The rationale behind diet is that any gluten/caesin traces can cause havoc on the child. So it's recommended that cooking utensils, pots etc have to be solely for GFCF usage. DH & i HATED that period of time & would sneak out to eat... but we ourselves did experience very good health too. nowadays we try to do fasts & avoid wheat once in a while
- not practical for a growing child who has interactions with other children. esp if child's tastes is also established. DS at that time was mainly eating porridge so that was easy - the tough part was switching to rice milk and adding rice bran with nutrients to ensure milk was filling and nutritious.
Plenty of GFCF choices around nowadays. I would say it's no harm trying but quite tough & requires whole family to be on board. DS stopped at nearly 4yo cos by then his focus was stable and instead he seemed to be responding more to therapy. HTHs
To add: personally DS's \"improvement\" did not really happen immediately after therapy starts. It took him another 2yrs after diagnosis to speak. After which it seemed everything kinda fell into place - with spurts, plateaus and even dips... it's a continual process. Be patient & resilient and if possible, have someone continuously & religiously work with child everyday the therapy exercises. In DS's case, the consistency worked for him
Just to share an embarrassing moment last fri. I took a train w my boy and was teaching him abt the vehicles i spotted below us... Car, Lorry, bus etc....
He was enjoying it and echoing after me, car....Still in very good mood, he said you fair, you fat, you fart. i dunno what is he trying to saying as i couldn't make out the words but they certainly sound like fat & fart. I have not taught him such words nor were these present in his dvds. I seriously have no idea where he learn these words or was he trying to refer to other words. Embarrassing, i quickly cover his mouth before another F word comes out!
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