Hearing test

We went to NUH-child development unit for Darren's follow up on 1st july 2008. Like usual, she will ask me what kind of program that Darren is on now. Of course i never tell her about the biomedical treatment, as normal physician will cringe at the mention of it. Actually 3 mths ago she suggested that we bring Darren for hearing test at NUH, which will cost us from 40 to 400 bucks, depends on Darren cooperation. If need to, they will have to sedate him to make him cooperate. He is on music therapy so, i was puzzled why they need him to go for hearing test. She told me that some autistic children are deaf in many ways, as music and speech is different. She said some autistic kids can talk after fittin on the hearing aid..... For this one, i am not so sure, i will have to find more resources to see if it's true or not. I will not put my son to the suffering of sedation just for hearing test. He is only a cute 4 year old....

I have stopped the Kitaro CD, as it made him very active. Now we are back to Samonas "3 guitars" CD, and he seems to toned down abit, not so super high in energy and more calm.

And I am posting this interesting poster about autism, i found in Second Life@TM.

Darren, Darren, Darren

Today we were at Sanjay. He noticed higher awareness & joint attention on Darren. He was playing with the equipment happily. And he seemed to enjoy climbing up the ladder, eventough he feel afraid. But he was willing to try, he even pull my hands, to indicate to me, that he want to go up again after he managed to climb down. We did that quite a lot of time, maybe 8 times. He is more adventorous now, as he is willing to try every set up that Sanjay do for him. All the obstacles and builds, he will try to go through, with 20% prompting.

Sanjay is concern about his late speech. So, we will think of a way to do neurofeedback on him, and get the expert in USA to look into it. It will be a bit of a challenge, as it will require to put the sensor on his head, and we will have to do t once with eyes open, and once with eyes close.

I noticed, he is a bit active this week, making more sound and rounds. But I believe that is because of his higher awareness & joint attention. Sanjay also said so.

Another day has passed

During the June school holiday, Fei Yue told me that government is doing another mean test, to reaccess our income and adjust Darren's fee.I was shocked when they told me that we have to pay 600+ now because no subsidy for us since papa's salary is high (but we have to pay many other things...). And we were fortunate because they helped us to get a grant, so the fee is adjusted to 380SGD from 350SGD. Thank God! If not, we have to really stop him from going to PCS JW, as we can't afford to pay more. Parents with kids with disability, sometimes really have to pay high prices for a lot of things that are supposed to help the kids.

We are thinking of putting him to speech therapist, since he didn't lke the one at SPD. Until now we can't really find a suitable one. Those at town area are charging exorbitant money, 100+ per hr..... I am not sure if we can really afford. We are up to our neck now, as papa's salary is being process too slow every mth. Pls pls MOE & the school clerks. Work harder, as not only your families need the money, but our kids also need it, to buy their necessities. They have been pushing the blames everywhere for the late processing of salary every mth. I am not sure who to turn to for help...........I am angry sometimes, but can i call and scold them? I can't for my safety......and papa's career.

I am at my wits end.....

I want to play what I want!

Today Darren is going to PCS Jurong West. The teacher told us that he wanted to choose his own toys, instead of being told what to play. He will shriek and cry when not allowed to play the toys that he want. I am not sure if this is a good improvement..... But at least now he know how to protest, meaning awareness level is improving.

Weather is bad as usual. Let's hope noone fall sick this time. I managed to swim 7 laps today. Fatigue and body pain always come to me nowadays. I guess i have to start eating my spirulina supplements again.

Rain rain go away, come again some other day....

Rainy days

It has been very wet these few days. I am surprised it's always raining at this time of the year. I was told by my hubby that the thypoon is making it's way to singapore, but it will not cost much damages, will only be raining day in and day out. I have been sick for 3 weeks, cold and cough. I am glad the kids are okay at this kind of crazy weather. At least Darren is not as sickly as the last time before he took those supplements. I am glad i found the miracle of biomedical treatment. I might be stepping into the unknown, but the facts are in front of me. So, I will not say anything, but feel fortunate.
Darren is on his way to school now with the helper. The rain is pouring and he has to take the bus, so i suggested to let him wear the raincoat we have long had but never been used before, because he will cry everytime we put it on him. To my surprise, he didn't protest. He was just touching the material and then stroll away happily to the bus stop. Another small improvement. :-) yeah!
The teacher at Fei Yue wrote in his communication book, that he has been shrieking a lot when denied anything that he desire. And he will not share toys with his peers. I wrote back today,telling them that Kitaro and a alot of TLC has put more awareness, join attention & good eye contact into Darren, thus resulting in more protests & shrieking. I hope this will be for the better of Darren.
We are still waiting for his communication to verbalised, it will be a long and patience wait. But once the rain is gone, and the sun is out. I will bring him to the swimming pool again. Because according to Sanjay, the water at chest level will help his diaphgram to work extra hard and hopefully will make him speak.
By the way, I hate the rain.........where is my sun!?

"Kitaro" & lots of floor time

It has been a while since I updated this blog. Darren has been very well. Put on a lot of weights and he has a pouch on his tummy now :-). I am happy to see this progress as he used to be very skinny, eventough he eats a lot. Nowadays, he is still eating the same food, but he has put on weight, meaning the good nutrients has been absorbed inside his body with the help of digestive enzymes supplements & lots of TLC from all of us, especially Sutiarsih (our helper). I always think that God is fair as he always gives us a good helper to take care of Darren. Sutiarsih takes Darren to the park and playground 3 to 4 times a day, and that has help with his Occupational therapy sessions, as Sanjay told me that all the climbing, jumping, etc has somehow help. We were supposed to have 3 times of OT at Sanjay looking at Darren problems. But of course it's all boiled down to money. We can't afford it, as much as we want to.

We have stopped going to Kyoko for cranio sessions also, as it's not cheap. His head still soft till today, except when he is very upset and angry then his head will be very hard again. I am trying to do cranio on him myself when he is sleeping. I was learning from the book Sanjay was lending me. But, to be honest, I am not sure what i am doing. I will just put my palms on those points that Darren needs, and I will just keep telling myself that i want to suck out all his bad energy and release it from my shoulders. I am not sure if this will work, but it better be. haha. It's a good training for me also, as i hate meditations.

We have decided to try to stop his supplements. Except for vit C & DMG. We will see how it goes. If he shows sign on deterioration, then we will start all the supplements again. I was at shoulders forum a while ago. I was dismay when I read a post by a parents, saying something like, those supplements will cause a lot of problems for the kids, and she/he cited kidney problem as one of them. I am not saying that I am smart, but I have done a lot of reading and research, and every supplements that are given to Darren. I know why he must take those. I suggest, don't take just any supplemets blindly, but you must know how those supplements can help your kids. Doctors in Singapore, sorry to say, ARE ALL CRAPS. They know nothing about biomedical treatment at all, especially those in public hospitals. The doctors at KKH and NUH was telling me, not to put too much hope on recovery for my son. I was telling myself, they are bullshitting. I am not gonna give up on him and what they say will not affect my opinion on biomedical treatment, as a lot of kids overseas have benefited from it. As autism is still a mystery, we have to try everything in this world, as long it doesn't hurt our kids. in order to find the answer. Only us, parents, can help our own kids. Noone else will....

I was playfully, get a lady from U.S.A to do a tarot card reading for me. I told her nothing, but this question; what will become of my autistic son, if he is able to go into the society?. She told me, she saw the journey, as being bumpy and things get a lil bit difficult when he is about to go into the society. But he will make it, with my help. Ppl who don't know, will think that i am weak and saddened by my son condition. But inside, i am ready, I am just waiting for him to grow up and help him blend into the world. I am smart, strong and knowledgeable (I guess from all those reading, haha), that's why i can influence the negatives points in my son's life. And she said she saw me going out of the way to help my son (alternative healings), ppl will think that i am stepping into the unknown. But I know where i stand. Well, all these are common knowledge I guess LOL, but it put smile on my face. It's a kind of encouragement for myself.

We are doing a lot of Floortime for Darren. Plays with him a lot of times per day. We can work well with him when we are singing, so I know our weapon is MUSIC. Music is the magnet for Darren, well his dad is a musician *smile*. We got him a 2nd hand piano, but for now, I don't think he is able to learn it with the help of a teaher yet, as his ability to follow instruction is not that good yet. We will see how it goes, and we will contact Mona when the time is right. We will just let him observe and play with the piano for now. To get him familiarise with it, so that he has no shock when he is ready to learn how to play it. We got the birds singing CD from Sanjay 3 weeks ago, and we have put him on that once a day for 10 mins. And his papa was telling me, maybe we try Kitaro musics, as he has a lot of drums element in his music, maybe it will help Darren. So, we put him on Kitaro everyday, mid day & before he goes to bed. He somehow, show more joint attention & good eye contact now. He can play well with adults and he seems to be more cheerful & always laughing when we are doing fun stuffs.