All About (Global) Development Delays

[WaWa]

Just wanna say Thanks to everyone here for your kind words & support! It's really nice to have a warm community here with good empathy... Thanks again...


Your encouragement has given me renewed strength to walk the walk, against the odds. Thanks mates! :celebrate:

[PrincessBella]

Dear Wawa,


I am new to this website too.

I also have a son who is diagnosed with speech delay and behavioural issue. It could be mild autistic from the symptons he had.

He is currently 5 years old too and have been attending Rainbow Centre @ Yishun Park Since 2010. I am not sure if you have sent your son to this type of school and if not, I would strongl encourage you to do it.
When he was first diagnosed at about 2 1/2 year ago, his behavioural and speech was so bad…he couldnt even speak, he throw trantrums, kicked at me, have strange behavioural. My hubby and I spent a lot of money on private speech and occupational therapy and then chanced upon Rainbow Centre through NUH Child Development Centre. Ever since then, he has trememdously improved in his speech and behavioural. he now can say a full sentence like I want to eat and are better behaved.

Do let send me private message if you need more info on this.

With best regards,

Princess Belle

[ImMeeMee]

WaWa:

Dear All

It's \"nice\" reading some of your children's developmental milestones... when i was reading, I can't help but wish that my son can be like some of your children... ie having only speech delay ..or having a delay in only one or two aspects etc.

My son is autistic & a moderate case. Sometimes, I wish he is just like some of the kids mentioned here.... ie \"slower than his peers\" ... then, it will be \"easier\" for me & my world would be so much more \"blissful\" for me & him !

Being a moderately autistic child means my son not only has speech delay (well, doctor says delay.. and i hope it is really a case of delay.. cos he is 5 this year & still no functional speech! Very worrying! Overly delayed!) , he also has difficulty socialising, he cannot play with peers & doesn't seem to enjoy peer group , has sensory issues, ... he is 5 ... still doesn't know shapes, colours, alphabets, numbers...

As if these are not enough, he has major behavior issues which is the main hindrance to his learning & development. It explains why at 5, he still hasn't picked up skills that a 2.5 yr old is normally capable of!

He attends OT, has a sensory diet in place, does brushing but still meltdown daily !!!

As I type his \"shortcomings\", i can't help but cry ... cos I really do not know when he can relate to me, or rather when i can relate to him, and whether he can ever be independent?!?! Most importantly, will he ever talk functionally?

Concerned friends have asked me to remain strong & be patient. I guess what else can one say to me? I admit, at times, I seemed resigned to fate, yet other times, i can't help but feel exasperated & frustrated as I try harder (to help him). I can't help but worry incessantly over my boy & wondering when will he ever \"function\"!

I love him very much.. I hug & kiss him everyday but it is often a one-way affection. He usually pushes me away when i hug him! I know this is a bad thing to say but much as i love him, sometimes, one glance at him tires me out almost immediately & completely!

Right now, i will continue the journey with him in whatever energy i have left ... and i hope all the great parents here will continue the journey with your special ones Take heart, your children are doing great

PS: Apologies...I meant to inspire parents here but somehow can't help but rattle off abt my challenges i have with my son. Sorry if i've failed to lift a spirit or two here

Dear wawa, can understand your inner turmoil, being a mother to an autistic girl myself.

While we stay strong and continue to have the faith, there are times when I falter. these are the times when I look at my dd3 and ask myself 'how long is this going to last? why must it be us? I cannot cope anymore .... if only ...'

these are questions that I know have no answers to, yet it still doesnt stop me from having them privately. we are but humans. it is only human to feel tired during the journey just too many times, and not want to face the child, or the monster in the child. sometimes i just want to run away.

while we celebrate their every small little achievement, there is always this dark fear and uncertainty in me. it will NEVER go away. at times I ask myself this ultimate question 'will she ever get married and be loved by someone when I am gone? or will she be alone, all by herself?' and this never fails to bring a dull ache to my heart.

at time i feel defeated, but giving up is not an option. simply becos she is my child. sometimes i do marvel at the wonder of parenthood in the selfless giving to the child. its not just me, all parents do the same.

I am not trying to be discouraging by saying all the negative things. I am just being factual with the real deal and what it brings. this is the truth.

I know, focus on the good things. we should. but we have to recognize the truth and learn to live with it. I am still learning. and its a tough journey.

[WaWa]

Hi Princess Belle

Many Thanks ! Yes my boy is attending one of the EIPIC programmes but sad to say, almost 1.5 years there, he is still wailing !

Maybe it is my fault - I stopped his private ST & OT after 1 year - i call it \"stop loss\" coz it is money down the drain cos he is still crying v badly.. and has very bad behaviour & still can't talk!

I think my next best bet is to \"wait it out\" whilst he continues with his EIPIC & private ABA.

Hi ImMeeMee
*wave*
we \"met\" at the Autism thread:)
Thanks for your contribution - no u r not being negative... instead i m \"glad\" to read something this \"negative\" coz each time i crumble or falter, concerned friends will tell me to be positive cos like i mentioned earlier \"wat else can they say to us to help us except to focus on the positives, right?\" Whilst I genuinely appreciate their kind thoughts , u know it is hard to be positive ALL THE TIME cos we are only humans I know both you & I cannot afford to wallow in self-pity... simply put, we cannot afford to \"waste\" time ...but can we help it ?

Like I shared with Princess Belle above, 1.5 years in an EIPIC programme doesn't seem to have helped him much. His 2-3 times daily meltdowns are a real nightmare! Honestly, I don't care anymore if he is autistic or not, I just WANT HIM TO STOP CRYING!!! I used to tell God, fine, if he has to be autistic , then at least give him functional speech. I can deal with autism. But now, I tell God.. just make him stop crying first ! I can accept him being in a special school (i have no intention to put him in mainstream)... but I cannot tolerate the wailing.

There are other issues to work on: learning his ABC, 123, holding pencil (not palmer grip), toileting, requesting, spatial awareness, motor skills, eye contact, speech .. all these are secondary... primary concern is STOP CRYING ! I am going berserk with all that noise really!

Just to share, my boy cannot take kiddy ride. can't even bring him near one. hair cuts are a nightmare too for everyone present (got turned away by a few hairdresser & barber). toileting another issue... he loves bus rides & mrt rides but he screams in excitement & shocks people !!! We asked him to quieten down but he doesn't understand & continues to shout out loud ... etc

Honestly, Autism basically robs me of the \"proper ideal parenthood\" I yearn to have with my child. I'm sure there will be detractors but that's how I feel.

In a few hours time, my family will be coming over to celebrate my birthday .. but really, is there anything worth celebrating??? I \"hide\" my sorrows from my family coz i do not want them to worry for me. But seriously, there is no reason for me to celebrate, apart from getting older & none-the-wiser. See, it's past 3 am... and I'm wide awake.. I am suffering from insomnia ... is this something to celebrate? I hate my life ! :stupid:

Apologies people ... i need to rant here...

But seriously, I appreciate all your kind thoughts & support. I am ready & willing to try harder after reading all the kind words! Thanks again everyone!

[PrincessBella]

Dear Wawa,


Is it? Maybe your son is my son’s classmate…wahahaha…
My son is also in EIPIC programme at Rainbow Yishun Park and his name is Ethan Oh. What is your son’s name?

To be frank, I had the same encountered as yours :-
1 My son doesnt go haircut too. He will scream at the top of his voice and everyone will start looking at us like we are alien and thinking how come a kid just a simple haircut will scream until like that…since then, we have to cut his hair on our own and we did it during his favourite time, bathing…we will give him toys to play while we cut it in the bathroom.
2 My son cannot get kiddy ride too…he was so scare with the sound. Only mid last year then he is willing to take but with us around. if not, he will not take it at all.
3 Ya my son love to take bus and MRT and he insist to stand right in the front especially north east line where you can see the train track. Even on LRT, he has to be in the front with the window to see the train moving on the track.
4 My son also couldnt write too. He is holding the pencil too lightly. He even refused to do any homework at home. Not even colouring or art and crafts. But i heard in Rainbow, he will do.
5 We had sent my son to the private Speech and Occupational therapy. The main reason we stopped is because he also keep screaming and crying for the first 15 - 30 minutes. He even started to cry, kicked and hold on to the car door when we arrive at the location. Me and my husband felt that maybe it is too much pressure for him and we decided to stop.
6 To be frank, sometime I am so scared to bring him out because he will throw trantrum in shopping centre. Like kneeling down and beg at you. Others people will think I illtreat my own son like that…or he will scream and crying if he dont get what he wants and then everybody will start looking at you.

I was like you too before. I practically crying almost every night quietly. Couldnt get to sleep too. My temper was bad and keeping scolding my son for throwing trantrums and so on. Sometime when he is unreasonable, i will punish him like made him sit at one corner. Let him cry until he is ready for me. Then when we started to see doctors from NUH, when we have therapy teachers, when we have rainbow, they taught us how to deal with my son. Our emotions is very important. Autistic children are more sensitive than normal kids, they can feel our emotions. If we are sad, they are sad too. If we are happy, they can feel it too. So i started to change. I try to control my tempers, keep myself happy. i talk a lot to my son. Even when we are riding in a car, i can talk to him like this is car, that is a taxi, i will point to him, move his head to see the car or taxi i am talking about. i will tell him like ethan, we are now in the car we are going where and where…and so on.

Sometime my son will not look at you when we talk. what i did was to move his head and made him look at me and then i talk.

Then I coordinate with the teacher in rainbow, she is very kind. If ther eare any special things, she will sms me or write in the communication book, she will teach me how to deal with my son and thru there, we have gained a lot of more experience, knowledge and improvement in my son. To be frank, it is a lot of hardwork. I have to sacrifce my work just because of this. Because of my son, I have to change my work, being penalised for under-performing (i was retrenched last Dec for this and now found a job luckily) or being feel by my boss that I didnt perform to my best. But what to do when your kid are in this condition. And worst, i cant go on without a job. Because of my son condition and the therapies are so expensive, i have maxed out all my credit cards and now paying minimum payment monthly. I have to cut down all my spending, my clothings. I have to stop having dinners with my friends just because my parents couldnt deal with my son sometimes and i have to be home as soon as i can. My hubby was very busy.

What i suggest you to do firstly is to give yourself a break. Take a rest. Try to see if you can arrange someone to take care of your son for maybe a day. Relax yourself, go for window shopping, sleep for the whole day or do whatever you wanted to do. You really need one i feel.

You must understand that all children at the same be it they are autistic or not. The only different is that Autistic kids are unable to express themselve and hence make it more difficult for the mummies.

Maybe your son’s crying was trying to express him and he couldnt and that why he cried making him frustrated. Try to understand why he cry. If he cannot speak, you use visual, like pointing to an item, or pointing to something. I have the same problem before. My son will crying and we dont know what he wants. Then teacher tells us to use visual or pointing, then we somehow or rather I managed to figure it out. Even now sometime i still dont know what he was trying to say too.

Patience is very important for our kids. My son sometime will not want to go home. A 7 minutes ride home will turn out to be 30 - 45 minutes ride home as he wanted to go elsewhere. Maybe just to buy a sweet, eat or go sightseeing. So sometime I was already very tired after work, i still have to accommodate his out of the schedule requests.

You can pm if you need to talk to someone. Dont keep everything to yourself. i can totally understand your frustration, your sadness. You need help and support and do feel free to let me know.

Princess Belle.

[ArielMermaid]

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[ImMeeMee]

dear wawa, yes, both of us are shuttling between both threads. good to see you both ends!


I can feel your rage and frustration when you try so hard to reach out to your son but it seems not to work. it is good that at least you are ranting it out here, and not keep it totally to yourself. when i feel depressed, i come here to pour out my feelings, and after that I feel better. hope it is as therapeutic for you.

it is also true that after ranting we get back to our business of battling the monster in our children. so after such moments of weakness let's pick ourselves up and move on.

i know you will not give up. so do I. so do all the other parents. we will always try our best. we just will.

[PrincessBella]

Dear Seleste,


Thanks for the info.

May i know what is the title of the book and where you got it?

I think i should try it on my son too. He has been responding quite well recently even though he still throw trantrums.

Just yesterday he refused to go to school saying that he is scare of his classmate. When i checked with the teacher, the teacher told me that that classmate is his buddy who helped him in his daily such as bathing, dressing, school work and so on…so i really dont know what went wrong. what i did was just left him there crying and called the school again after 30 minutes and by then he was fine and already playing.

He has been demanding quite a lot of things now…wanting this, crying for that…but not everytime we will give it to him…sometime I also tell him and let him know that it is wrong to do this or do that…i think he understand but refused to acknowledge i think.

The main thing about haircut i think is the sound. autistic kids are very sensitive to sound. When we cut at home using scissor, he is fine with it only keep splashing the water onto the hair that landed on the floor or his body. Other than that i think it is fine so i want to start trying to see if i can bring him to haircut…now come to think of it, those salon i go always got those sound like hair dryers and etc so maybe i should try those 10 mins one which uses only scissors and maybe ask my hubby to be an example.

Thanks a lot for the info. i have been trying to find ways and means to get this done but never seems to find a solution…
once i tried, i post reply again.

Princess Belle

[ArielMermaid]

…

[PrincessBella]

Dear all,


It's me again.

I was on Pathlight mailing list always and just want to share this link.

http://autism.org.sg/training/training_details.php?course=110518-MyChildReadyPart1-EIP

There is a training course to be held on 18 May 6 - 9 pm at Pathlight School Ang Mo Kio which will give you an idea if you should send your kid to mainstream school.

Do look out for their other training course as well.

Thanks.

Princess Belle