All About Autism

[mum_sugoku]

ImMeeMee:

its one of those days that the frustration just proves too much. after 1 visit and 2 trial sessions at the childcare centre we realize that it is not suitable for dd3 and we have to give it up. And this is after numerous calls to other childcare centres only to be rejected for one reason or another, and after making considerable logistic changes so that I could fit the trial sessions into my working schedule. And I have been hopeful in this because this is one school that has a schedule that fits ours so far.


So we need to continue looking out, making phone calls, talking to people, visiting, observing, assessing, thinking ... the list goes on. They say that we must be mentally prepared that we need at least a few tries to get into the right childcare centre. I already feel so tired after the first one. And we have not even started. And the worst part is that in the meantime the clock is ticking away for her.

All this in the midst of maintaining other therapy sessions and finetuning certain ones, making changes to schedules to best fit, following up on therapy at night and during weekends, chauffeuring where I can. Notwithstanding the pressures at work ... I feel so spent mentally.

Its relatively so much easier for the other two gals that it is almost intuitive to reach each milestone. But for dd3 we have always to be on our feet, challenging our own thinking, thinking of the 'what ifs', and dealing with unknown. how least enviable to be in this stage, that I sometimes still cant help but wonder why me. Seriously, at this juncture, I cant buy the 'we are a special group of mothers' argument.

Its just too much for a deal.

Hi, just want to let you know that there are childcare centres here who take in children with special needs (including autism). One of them is PCS: http://www.pcs.org.sg/iccp.html .

I think (but not very sure though) you can get the list of other similar childcare centres from Child Development Unit (CDP) at KKH.. Perhaps you could check with CDU?

[2ppaamm]

specialboymum:

mashy:

Specialmumboy


Did u try school readiness program? I sent my boy to kkh sch readiness program and the OT helped us identify which areas he will need help in.

I also met up with the form teacher and AED to discuss his case as well as suggested some methods to handle him which I tried before and it worked for him. When his teacher feedback that he didn't want to do his work, we didn't leave it and ignore it. We spoke to him, gave him a rewards and punishment regime as well as suggested some steps for the teachers to take to get him started. I think we need to remember that we work as a team. Nobody knows our kids better than us. So certainly we can feed some info to the teachers on what motivates them and what can be their bugbear. So far his form teacher has been helpful. I know not all teachers have the patience so I am really thankful for her. She has two autistic kids in her class so she got a teacher aide to help. The aide is a bit useless though coz she is unable to motivate my son to do things. Sigh.

All autistic kids are different so what works for one may not work for another. Think just need to keep trying until u find the key. Jia you!

Hi Mashy,

I have only send him for psychological review at KKH last year. The review doesn't include assessment of learning profile and school readiness, but they recommend we register him at Pathlight, which we did attempt.

Now the problem is his behavior in school is not consistent to how he behave at home or the after school care he goes to now. At home or at after school care, he normally complies to instruction, for e.g if he attempt to sneak off before completing his work, we simply need to call him back, he will return to his seat and finish up his work.
At school, he either walk away, fall asleep or pretend to fall asleep when ask to do work, his teacher couldn't get up him, sometime, he goes to the extent of lying on the floor if they try to pull him up physically. His teachers kept asking me what to do, which I don't know how to answer. I know I have to find out the triggers for those behavior but I can only play the guessing games since I cannot be there to observe what happen. Is it because too much activity in the class that is making him stressed? or he doesn't understand the instruction given but don't know how to get help?

Anybody has any suggestion how to probe his teachers or what is the right questions to ask his teacher to better help to pinpoint the trigger point of his behavior?

Hey Specialmumboy,

I showed your post to my son, and asked him for his opinion. He said, \"That sounds like me, so maybe I know why.\" So I asked him why. DS2 has just turned 12 years old and I have opted to homeschool him after too many tries to fit him into school since his problems started in P2. The teachers too asked me to send him to Pathlight, but I have since gotten a report from a psychologist to say that he was misdiagnosed and not special needs. DS2 will begin his undergrad studies this month His progress in academic studies had been extraordinarily fast since I homeschooled him.

DS2 is like your boy. Despite all the complains from school for sleeping, not taking instructions, and pretending to fall asleep, he is without trouble at home. I was also at a loss as to what to do because I have no clue to what was happening in class. I was even invited to sit in class to watch him. Whenever I was there, his behavior was super good as well, so to this day, it is a puzzle to me why he acted so strange. Whenever I probe and asked his teachers more questions when they complain, sometimes they tried to entertain me. Last year, all the teachers from his GEP class just refused to communicate with me, insisting I send my son to Pathlight. They said I asked too many questions and should just take their feedback as it was. They will not entertain any questions or clarifications about his behavior in class, simply saying they cannot cope with my child. That's when I decided to homeschool him despite him having very good friends there and he enjoyed school very much.

DS2's social behavior has also improved since he left school. Still a little uncomfortable at times, but now much better. The psychologist believe he suffered trauma when he was in school, which acted out like autism. I am still picking up the pieces from the damages caused in school.

He told me that your boy probably falls asleep because the instructions are too complicated for him to understand, or he is simply too tired. DS2 said that most of the time, he could not fall asleep because he was often in bed thinking about events of the day throughout the night - they were often very traumatic and eventful in school. The next day, when he reached school, if the instructions were too complicated, e.g. instructions are long, repetitive and boring, he closes his eyes. (He said it is not called pretending to sleep) And then, because he was too tired, he fell asleep.

He also told me that he only laid on the floor during assembly because he was tired and needed his 'beauty sleep'. He did not do this in the classroom because he thought it was not appropriate, but in the assembly, he was 'lost in the crowd', and therefore, people did not notice him and he could just lie down and sleep.

Nowadays, he does his work more or less by himself (equivalent to 'A' levels), and he told me that if things get boring and tedious, he just skips them and move on, and then comes back to it later. He does not fall asleep. He also does not have the problem sleeping through the night anymore, though he still takes a long time falling asleep.

A counselor once told me he has severe anxiety problems (we - psychologists and us believe caused by school system) and therefore he had nightmares nightly. At one point, we were recommended medication as he was on the verge of depression. Since I pulled him out of school, he no longer had night mares, and no longer stayed awake through the nights. He is also much more cheerful. His sense of humour has returned and he could laugh easily now. He used to be very uptight and guarded. I have yet tested if he could talk about how he feels, because he totally closed himself out for a period, unable to talk about feelings.

I do not know if your kid is similar to mine. I am just crossing a hurdle at a time, and I am no longer bringing him to any therapies because he seems to be coping well with much less social expectation. The home is much simpler for him, and the church and sports places are also 'cope-able'. One step at a time. I have decided to enrol him in a uni because I saw no point in holding him back academically, and continue to work with him on the years he has lost learning social skills in school. Hope this helps you.

[2ppaamm]

I showed my son the post and ensured he agreed to it. He told me not to mention his undergrad studies part because it sounded like boasting. I told him it is ok, the purpose is not to boast, the purpose is to let others know that there is always hope and they can make it too.


I remember the EP from MOE consoling me and telling me not to worry. She told me there is a chance my son can lead a normal life and can make it to university also. That was just last year. I have decided they know nothing about my son. I decided to ‘intervene’.

Funny why they would label my son ‘severely’ autistic when another qualified psychologist refused to diagnose him anything. Just makes me wonder what the purpose of the diagnosis was, and even with the new findings, they refused to accept. My psychologist was a very qualified and recognized one. They offered to speak to her as they were contemporaries (hoping that she’ll change her report supposedly - they are all in the same fraternity). My psychologist’s report never changed. He was misdiagnosed, but the MOE needed him diagnosed. That was the main conflict.

Nowadays, I receive queries about kids diagnosed with dyslexia etc etc. These days, I question and challenge such diagnosis more. Often, I find inconsistencies. How can Singapore have one of the highest special needs diagnosis %-wise in the world? Something is so wrong. Hopefully, psychology becomes more established in Singapore soon.

[schweppes]

specialboymum:

schweppes, yes, I think he is trying to cope. I talked to his kindy teachers again, they said their teaching methods is more interactive and informal as compare to primary school, that is probably why it is difficult for him to cope with the change.

I tried social story, but it doesn't seems to work as the stress is too overwhelming for him to remember what I told him in school. Anyway, I prepared a short simplified rules cards, which I asked the allied teachers to use them when he is about to lapse into inappropriate behavior.. not sure if it works... It is difficult when we are not there to see what happen.

I also explained in details the sensory issues that my son is facing that is resulting in his behavior, so we sort of beg his teachers to be understanding and try reinforce the right behavior when possible. Like what you mention in earlier message, his form teacher immediate response is \"why don't you send him to Pathlight?\"

:hugs:
u've done the best you can, given all the constraints involved. The best advice I can give to parents is to hang in there and tough it out. Sorry, I know, that's not much of an advice or consolation, but really the most practical, sometimes.

As school has just begun, everyone (teachers, parents and kid) are getting the hang of things. There will be days that it seems like doom and gloom, and then, there are days of sunshine. Enjoy those days of sunshine and remember the little victories. These are the days that will help see u thru the tough periods.

specialboymum:

Actually we did apply for Pathlight, but the waiting list is so long....We were quite loss on what to do when it is time for primary 1 registration, we called Pathlight but was told the waiting time is about 1.5 years so they recommend we go mainstream with allied support..
Judging from his pretty good behavior in Kindy, we decided to give mainstream a try... Pathlight asked us to withdraw our application when they know we register him with mainstream.

Pathlight may not necessary be the solution to your problems. I see it as a blessing in disguise for not getting a place in the school. It gives your child the opportunity to experience a normal childhood in a mainstream school.

With your child surviving kindy, he will survive mainstream school.

We will always wonder if we have made the right decisions. My take on this is, do what you feel is right at that point in time and what is right in your heart. U will know your child better than anyone else.

specialboymum:

Sigh! felt my poor boy is so unwanted... trapped in the middle of this \"tai chi\" game

:hugs:

They have us and our unconditional love.

Having tears in my eyes now as I'm writing this. I know what you mean. Brings up a lot of hurt and rejection from the past. But for every hurt and pain, I am determined more than ever to make it work. To make it right.

We all have our moments of glory. Your child will too. :snuggles:

[mashy]

2ppaamm


I agree that the diagnosis of autism has become really numerous. I also doubt that my son is truly autistic. But whatever the label, he is still the same boy we knew before the diagnosis. I simply used this diagnosis to get extra help in sch so that he doesn’t wander off and be overly obsessed with his own things. Yesterday, he ran out of his classroom during class to the Eco garden and ignored the teacher’s calls for him to return. He even admitted that his friends had to carry him back. If he wasn’t given the diagnosis, I wouldn’t have gotten understanding from his teachers. I guess I’m also lucky that he has a good form teacher who supports him rather than complain about him all the time. I think useful feedback and complaining are really different.

I’m glad to read about your post. It spells hope for us and our children. And knowing from the perspective of the kid is also very useful. My boy also has difficulty sleeping at night. Then in the morning, he has difficulty waking up. Hahaha. He lies on the floor in the assembly hall too. I realized that he has been spinning himself more freq than before. I didn’t usually see him do that but now I see him do that very often. I wonder if that’s a coping mechanism to deal with stress.

[chibi]

i was in denial when my daughter was diagnosed with autism. she has high functioning autism.but quickly brace myself up as she only has us as her family to support and help her.

have our up and down days .
i used to break down infront of the teacher or even her therapists whenever we talk about her condition, but it has been better lately, as she seems to be transiting into primary 1 quite smoothly .
i will always cry when i watch this:
http://www.youtube.com/watch?v=AbeyIG7Fz8s&feature=related

esp the part where \" if you are family, loves me unconditionally, banish thought such as \" if he would just...\" and \" why can't she...?\" I didnt choose to have autism. \" I may not be good at eye contact, but have you noticed that i don't lie, cheat at games, tattle on my classmates or pass judgement on other people?\"

even when i am typing this, i have tears in my eyes too.
it just brings alot of emotions to me, esp when i think about my daughter.
sometimes when i pass comments that her younger brother seems to like daddy more, she will goes up to me and say \" but mummy i love you!!!\" then gave me a big hug ..hehe really got me smiling
makes me feel that everything is worth it. even if i were given a choice, i will stil want her as my daughter no matter how she turns out to be.

this phrase also got me going on \" That which does not kill us makes us stronger \"

friends here, hang on!! there is definitely light at the end of the tunnel
lets walk towards there, no matter how tough and slow, we will get there somehow. :xedfingers:

[schweppes]

One possible reason as to why the kids have problem falling asleep is that after the day’s activities, they are overstimulated and their senses are all heightened.


Some kids cope by having meltdowns or temper tantrums just before they sleep. That’s how they tire themselves out by getting rid of excess negative energy. It’s the body’s way of balancing itself out.

[schweppes]

chibi:

i was in denial when my daughter was diagnosed with autism. she has high functioning autism.but quickly brace myself up as she only has us as her family to support and help her.

have our up and down days .
i used to break down infront of the teacher or even her therapists whenever we talk about her condition, but it has been better lately, as she seems to be transiting into primary 1 quite smoothly .
i will always cry when i watch this:
http://www.youtube.com/watch?v=AbeyIG7Fz8s&feature=related

esp the part where \" if you are family, loves me unconditionally, banish thought such as \" if he would just...\" and \" why can't she...?\" I didnt choose to have autism. \" I may not be good at eye contact, but have you noticed that i don't lie, cheat at games, tattle on my classmates or pass judgement on other people?\"

even when i am typing this, i have tears in my eyes too.
it just brings alot of emotions to me, esp when i think about my daughter.
sometimes when i pass comments that her younger brother seems to like daddy more, she will goes up to me and say \" but mummy i love you!!!\" then gave me a big hug ..hehe really got me smiling
makes me feel that everything is worth it. even if i were given a choice, i will stil want her as my daughter no matter how she turns out to be.

this phrase also got me going on \" That which does not kill us makes us stronger \"

friends here, hang on!! there is definitely light at the end of the tunnel
lets walk towards there, no matter how tough and slow, we will get there somehow. :xedfingers:

Reading your post has made me smile again. Thanks chibi for sharing. :love:

ps... are u into manga? my dd loves manga and would borrow books on how to draw chibi. haha

[chibi]

haha schweppes

Yes!!
i like chibi from Sailormoon
so cuteee! :oops:

i think after my daughter is diagnosed with autism, and hers attending numerous therapies, occupational therapy, speech therapy and social skills classes, i have made lotsa friends with pple from different walks of life, the therapists, her social skills classmates parents.
i believe that group support is very important, and even in this forum, we supporting each other is so important, it gets us going on.
i have a close frien that i share everything with her about my daughter, my daughter first day in primary 1, therapy sessions, and even her daily life, it helps to keep me sane too, like esp when my frien is saying , well done!! she is coping well in school\" or \" keep on going, she seems to be alot better now!\"
really motivates me, i guess what i need at times, is really to let it out and share with someone .of course at times, i will really break down and just cry.
i try not to cry infront of my gal, she wil come up to me and ask\" mummy why are you crying?\" have to hold back my tears and not to let her know that i am worrying about her.

[2ppaamm]

Reading posts on this thread reminds me of how difficult it was to cope with a special needs. I remember those days when my son was so unwanted. We jumped from one therapy class to another, one behavioral class to another. Not because we were not patient enough to see results. We were asked to leave the classes because DS2 didn’t belong to their groups.


Diagnosed with Asperger, but could read facial expressions and manipulate situations, so they told me he is definitely not autistic. He could keep good friends and made long lasting friendships. Sent him to behavioral classes, the therapist then thought it better he went on 1-1. Went for 1-1 for so many sessions. The therapists got fed-up because he refused to ‘open-up’, so she gave up our slot without even telling us. Found out only when we reached there (we were not late) and she was already conducting another session with another kid. She said she’ll call us to make another appointment, but never did. Our behavioral classes ended like that, twice. I figured counselors and therapists want to see results too, and perhaps they saw no use in giving sessions to my son because they themselves believed he was beyond hope. There were better clients to take, and a long queue to fulfill. The OT also discharged my son after some sound therapies (the only thing that helped him improve).

On top of that, DS was so upset attending all these therapies, he hated going to these places where people all looked at him with judgmental stares. When he got angry, the maid at the waiting area pointed at him and said, "He’s here for anger management." When actually her charge was licking DS’s ice-cream, and wouldn’t stop after DS asked him to a few times. This boy would jump everywhere and lick DS’s ice-cream, drink DS’s milkshake or strangle DS. He used to have to wait alone because I had to fetch other kids. We couldn’t find another slot. He was so afraid of that boy, and I hated the maid’s killer stares.

He was also scared at the waiting area, when this other really big-sized teenage boy would scream and shout out of the blues. He told me he really didn’t think he was mentally ill himself because he just couldn’t understand why he was there. So he waited outside the centre so that he need not look at the maid, have some privacy to his fries and ice-cream, and avoid this huge, shouting boy.

I think it is important to ensure the right therapies and diagnosis is done. Though I agree by being diagnosed, there are some ‘privileges’, unfortunately for my son, he was given none. We asked for exemption of assembly, but was not given, because the school wanted him to ‘do everything like everyone else’. Thing is, he couldn’t. Not sure if it was Dabrowski’s overexcitabilities or SID, school chooses who they want to accommodate. For our son, because he was very capable, he was not excused for anything.

In our society, I have learnt that it is sometimes better to be an underdog, at least people lend you a listening ear and act sympathetic. For my kids, because they are cognitively not inferior, people expect more. While other kids are forgiven for using words (at P3) that have too deep a meaning, and given the excuse that they probably did not understand the meaning, my son was labeled dangerous for using the same words because he was ‘too smart not to understand the meaning of those words’.

People forget that being exceptionally bright is also special needs. They need to handle overexcitabilities and sensitivities as well. While it is easier to accommodate kids who display academic difficulties, our society automatically associates academic excellence with capabilities in every faculty. I found this so unfair. A child is not the traditional ‘special needs’ and bright does not mean he is perfect. People forget that.

I found relief when he was discharge of autism and SID. He never had it, and we went in circles going for classes trying to fix these to no avail, and he was nearly into depression. I should have asked for a second opinion before jumping and finding solutions to his diagnosis. We were also accused by the principal for not fixing his problems, because the P believed he should attend daily and intensive therapies. Well, the school did not believe when I told them there were no such daily therapies., of a few hours a day available.

Now we find freedom in pursuing things beyond what we expect, rather than trying to fix what he is short of. Maybe he is not perfect, and maybe he really has a bit of autism. But now that we no longer focus on his weakness but his strength, and now that there’s nobody who picks on everything he says and does, he suddenly acts and seems normal.