Warning: Another looooonnggg entry!!
Ok, picking up from where I left off in my previous post, "SCBA..", Shukri and I were totally speechless in Dr.R's office. He suggested a few hospitals where we can take Nadiah to see a child psychologist and offered to write an introduction letter. We just said we'll think about it and will came back later on. I didn't even think to ask him any details but just walk out in a dazed. Back home I stationed myself in front of the computer and started my research. This is what I found:
The next day we went back to Dr.R just to see what our options were. He told us to have Nadiah tested. She could be autistic; doesn't mean that she is. If she is found to be autistic, then the earliest intervention possible is the best. So we picked up a letter from him and went home to do more research.
The psychologists Dr.R suggested were in Loh Guan Lye Hospital (LGLH) in Penang. One needed a six month advance time to make an appointment, so we scratched that one out. The other, we need to go and make a personal appointment and pay RM100 just to make the appointment. Since Nadiah wasn't feeling well at that time, we decided to wait.
In the mean time, Shukri and I were still doing our regular research about autism. We found this website. It's a Chinese acupuncture master in KL who claimed to have been successful with autistic children from all over the world. At first I wasn't very keen to try, but decided to call up the clinic anyway just to find out more about it.
Surprise, surprise.. the voice that answered was a Malay woman. So I asked her whether it is ok for us Malays to go because in the website, it said that the child would also have to take some Chinese herbal powder as well as the acupuncture treatment. The woman said that it is fine, no problems there and that many Malays has been going there. There were also some Arabs, Indonesians and patients from other parts of the world. After deliberating for a few days, we decided to go for it.
The clinic is located on the 4th Floor of Menara Promet in Jalan Sultan Ismail. As soon as we stepped out of the elevator on the 4th floor, we could smell the pungent fumes of Chinese medicines. Boy were they strong!! The floor is the Medical Floor so there were a lot of clinics but situated in an office-style kinda lots. Tole clinic is at the end of the corridor. Along the corridor, we met a lot of kids with "antennas" sticking out of their heads. This must be the right place, we thought. Lots of parents and children we milling about, running here and there and a few doctor-like looking people rushing around. We registered Nadiah and waited for a while. We started talking to other parents and found out some were new and some have been going there for a few weeks already. There were Joshua (12) form Boston, Ryan (4) from Indonesia, Brian (11) from KL, Nabeel (8) from Qatar and some others also from KL, I think, whom we did not get to know. We went in to talk with the "Master". His name is Leong and everyone calls him Master Leong, or just plain Master (sounds kinda like a Chinese Kung-Fu movie). To cut a long story short, after we answered his questions, he concluded that Nadiah is autistic and recommended that she should start treatment immediately, i.e. right there and then!! While this was going on, Nadiah was getting upset with something and was trying to get off her stroller. When Master got close to her to "plant" in the needles, she started to struggle. It was such a horrid time. Every time a needle went in her head, her hand would fly about and knock it out. We had to hold her down so that Master can put in 4 needles. I have to admit that they were tiny ones but I worried that it was hurting Nadiah. Master assured us that there's no pain. It's just that she was scared of a new place and someone unknown to her. The first time is always like this, he said, and that it will be fine after 2 or 3 sessions. Nadiah was still crying and screaming and it took us half and hour to finally calm her down and at last fell asleep. We took her to a quiet corner along the corridor and let her nap for a while. After an hour, it's time to take the needles out and it started all over again. Master asked us to wait 45 minutes and go for a 2nd session. We decided not to and said will come again the next day. We were having second thoughts. Nadiah looked really tired in the car and we were tired as well. I don't think I'll be able to let her go through it all again, not to mention myself. At the apartment Shukri and I discussed whether to go on with the treatment. After much deliberation we decided to try for a week and see how Nadiah would take to the treatment. Oh did I mention that during the treatment she is also to go on a very strict diet? No sweets what so ever. If the food product is sugar-free but the taste is still sweet, then it's a no-no!! No dairy products (means no milk for her), no junk food (that's ok) and only four kinds of fruits (apples, guava, orange and pear), and even those are not the ones which are too sweet. On top of that, there's the powdered medicine she has to take; 3 tea spoonfuls, three times a day, mix in with water to drink. I can't even stomach the thing and I don't have to try it on Nadiah to know she will definitely not like it.
So off we went on the second day, equipped with Baba's laptop so we can distract Nadiah with Barney or Elmo, and some other toys for her to play with. My heart was pounding , ready to go through yesterday's episode all over again, as we approach Master. Did she struggle? Yes.. for about 5 seconds! Then she was fine , not even bothering those antennas on her head. Hmmm.. that's funny. Why wasn't she screaming at everybody? But never question your good fortune. Shukri quickly took out the laptop and started Barney for Nadiah. This is out on the corridor, you see. And before long, other kids were starting to pull up a chair behind Nadiah to watch the show. It's like a mini cinema. We went for two 1-hour sessions with a 45 minutes break in between. Time to go home, and Nadiah was still fine and dandy. No problems, no sirree!!
That started our daily routine for a month. We'll be at the clinic around 2pm and be done by around 5pm. On the way home, we either stop over at a playground or a shopping spot, and it's back to the apartment. After a day or two, we moved from the corridor to the another room the clinic provided where all the children and parents are able to camp-out and relax. We always brought a laptop to provide entertainment for the kids. Shukri and I became the favourite Aunt and Uncle for the kids. Most of the kids are brought over by their maid or tutor or grandparents, so that left Shukri and myself, the hip and cool aunt and uncle, to keep the kids entertained. There were some old, broken up toys at the clinic which really should be thrown away, and also 2 tricycles where the kids can ride along the corridor. Imagine this: little hyperactive kids running around with antennas sticking out of their heads or riding tricycles but not a word left their mouths. Some older kids sit at the table to do coloring or writing or jigsaw puzzles but the little ones are left to run around.
During our month at Tole clinic, the patients keep changing; some went back to their respective homes and countries and new ones join in the group. There was an 11 year old Indian boy form Sabah, Sanjeev was his name, joined us after about a week we were there. He was severely autistic. But his mother, a medical doctor, did a lot of work with him and has taken him to so many treatments all over the world and now he is almost like a normal boy. He reads and writes perfectly fine, goes to a normal school and is basically independent. The only problem was he would not talk. He can talk but only after you tell him to. He understands us pretty well and would answer us when his auntie prompt him to do so. We got to know him pretty well as was his aunty. Other kids who joined us later on were Aizat (4) from Shah Alam and Amir (6) from KL. Also there were two very hyper and very naughty Chinese brothers, Chai Ching (6) and Chai Yong (5) from Nilai. Thank God they only come in once a week or they would drive all the parents crazy.
Here's a picture of Nadiah with her antennas. The one on top is of her and Sanjeev playing bubbles; provided by the cool Aunty Yatie and Uncle Shukri.
After about a week of acupuncture treatment, we started to see a difference in Nadiah. She was more vocal than usual. All of the songs that she's been listening to all these times started to come out. I guess she has been storing them all in her head but has never voiced them out. Her learning ability is so much better; meaning she easily absorbed new words and actions like a sponge and was voicing them too. She was also taking the time to stop and look; to see at things that are going on around her. Not just look, but was also copying the actions of other kids. Most importantly, she has become very manja; loves to hug and cuddle now and would wrap her arms around me when she wants to go to sleep. Heaven!!
After conferring with Master Leong, he suggested we commit Nadiah to a 3-4 months treatment. It was easy for him to suggest but that would mean for us to stay in KL for a further 3 months. Even for us to stay a month meant that Shukri had to take an unpaid leave of absence from work. A further 3 months treatment also means 3 months unpaid leave. A day of treatment cost us RM138. We are talking roughly RM5,000 a month including food and petrol. No work, no money!! As at the end of our 1 month treatment fasting month was drawing close, we told Master that we would have to go back for a while and come back after Raya. But really, we didn't have any intention of coming back. We thought to try the "traditional" method which is going to see a psychologist. We did not come to this conclusion lightly though. After a month, we noticed that Nadiah's condition is not as bad as the other kids. For one, she is very young and the earlier we treat her, the better her chances are. Also, she can actually talk, albeit slow, babyish and seldom, but the point is she CAN talk. She's also able to think for herself. Example: if she wants to get something she can't reach, all she needs to do is pull up a chair and climb up. Easy enough!! We have never shown her how to do it. It was by sheer observation on her part. That means for something I should say!!
Another reason is, although she was improving in some areas, her tantrums were getting even more intense. She has started to bite and even getting more aggressive than before. Not that she was having them that many anymore but when it happens, it was an ordeal for all of us. So bye-bye to acupuncture.
After raya, we made an appointment to see a clinical psychologist in LGLH in Penang, one Mr Alex. At the first appointment, I was to go in and have a talk with the doctor, explaining Nadiah's behaviour and our worries then bring in Nadiah to meet him. As soon as Nadiah stepped in Uncle Alex's (as she was asked to call him) room, she was amazed. Why? Because Uncle Alex (UA)'s room was like a mini Toy's r Us. Seriously!! It was full of toys. Along one wall is a cabinet, a LOCKED cabinet with these clear, hard plastic sliding door (perspecs I think they are called). Inside, UA had arranged toy animals, teddy bears, a doll house with all it's furniture, doctor & nurse playacting stuff and loads more. Nadiah just couldn't decide; to get those in the cabinet or to get those on top of the cabinet or others that were on the other side of the room. There was even a little sand box for her to play in. We couldn't get her to stay still. UA taught us a couple of exercises we would have to work with Nadiah; one being to sit her in front of us with our legs and arms around her making her unable to move. It looked very uncomfortable for her as she would be struggling to get out. But this would teach her to accept our touch and comfort her her when she's feeling insecure. When UA was trying this on Nadiah, she got so aggressive and was kicking and scratching UA. I felf so helpless. It was bad enough when she does that to us, but this was someone who has never seen what she could be like. But UA was the gentlest as could be. He tried talking to her and soothing her and plainly ignoring the red welts I could see appearing on his arms and neck due to Nadiah scratching him. He was the BEST!! I guess he is used to these behaviour. After all it is his job. One thing UA taught us is not to give in to Nadiah's wants and needs. When we give orders, we are to stick to it, not to give up half way.
UA's conclusion? Nadiah is only mildly autistic especially in her social behavior. She doesn't have any repetitive behaviour patterns or any sensory issues (where a child may have very poor or too strong sensitivity of her senses: taste, hearing, touch, sight and sound; either any or all five of the senses). We will be working towards having her entering a normal school and to be independent.
The first exercise I managed to teach Nadiah is to clean up her toys after playing. Boy, what a success!! And she has been sticking to it until now. She may not remember to do it on he own, but when I remind her to, she will quickly do it.
It's been 8 months now since we've been seeing UA and Nadiah has come such a long way. She very seldom has her tantrums anymore and even then it's not so aggressive. There is so much better understanding between us and she's taking orders well. She has also started to play with other people, not just Shukri and myself, but also with her cousins and grandparents. There's also imagination in her play time, although once in a while she still lines up her toys, but at least she plays with them as they were meant to be played.
Though there is still no back and forth conversation between us, her vocabulary has increased and we generally know what she's trying to say. But one thing is still unchanged... she is still a happy, happy girl!!
We have great confidence in her and she is making so much progress and hope one day she would be able to express herself with words and we would be having long conversations as a mother and daughter should.
Sorry this has been such a long one. But I thought I might as well wrap everything up in this entry or you'll be getting "She could be autistic..." Part 3. Anyway, thank you for reading/listening to my stories. I'm just trying to give a little insight of what my little girl is like and to make people understand her better. Thank you and have a nice day.
Ok, picking up from where I left off in my previous post, "SCBA..", Shukri and I were totally speechless in Dr.R's office. He suggested a few hospitals where we can take Nadiah to see a child psychologist and offered to write an introduction letter. We just said we'll think about it and will came back later on. I didn't even think to ask him any details but just walk out in a dazed. Back home I stationed myself in front of the computer and started my research. This is what I found:
Autism is a developmental disorder that typically develops during the first three years of life. Autistic children do not reach on time the developmental milestones of a normal healthy baby like crawling, walking, saying the first word etc. Autistic children are not slow learners or of a lesser IQ or suffer from mental retardations. In fact these are very special children who have difficulty in communication and social interaction. They ofter come across as those who remain engrossed with restricted and repetitive behaviour patterns.Early signs to identify autism in a child are:
- Children do not babble or baby talk
- Children do not point out things by end of 1st year
- Children do not utter a word by middle of 2nd year
- Children are not able to speak two-word sentences by end of 2nd year
- Children do not respond to their own names
- Children do not absord the social skills and thus stay away from people
- Children also make poor eye contact
- Children who are not interested in their toys
- Children do not laugh or smile and may seem to be hard of hearing as well
The next day we went back to Dr.R just to see what our options were. He told us to have Nadiah tested. She could be autistic; doesn't mean that she is. If she is found to be autistic, then the earliest intervention possible is the best. So we picked up a letter from him and went home to do more research.
The psychologists Dr.R suggested were in Loh Guan Lye Hospital (LGLH) in Penang. One needed a six month advance time to make an appointment, so we scratched that one out. The other, we need to go and make a personal appointment and pay RM100 just to make the appointment. Since Nadiah wasn't feeling well at that time, we decided to wait.
In the mean time, Shukri and I were still doing our regular research about autism. We found this website. It's a Chinese acupuncture master in KL who claimed to have been successful with autistic children from all over the world. At first I wasn't very keen to try, but decided to call up the clinic anyway just to find out more about it.
Surprise, surprise.. the voice that answered was a Malay woman. So I asked her whether it is ok for us Malays to go because in the website, it said that the child would also have to take some Chinese herbal powder as well as the acupuncture treatment. The woman said that it is fine, no problems there and that many Malays has been going there. There were also some Arabs, Indonesians and patients from other parts of the world. After deliberating for a few days, we decided to go for it.
The clinic is located on the 4th Floor of Menara Promet in Jalan Sultan Ismail. As soon as we stepped out of the elevator on the 4th floor, we could smell the pungent fumes of Chinese medicines. Boy were they strong!! The floor is the Medical Floor so there were a lot of clinics but situated in an office-style kinda lots. Tole clinic is at the end of the corridor. Along the corridor, we met a lot of kids with "antennas" sticking out of their heads. This must be the right place, we thought. Lots of parents and children we milling about, running here and there and a few doctor-like looking people rushing around. We registered Nadiah and waited for a while. We started talking to other parents and found out some were new and some have been going there for a few weeks already. There were Joshua (12) form Boston, Ryan (4) from Indonesia, Brian (11) from KL, Nabeel (8) from Qatar and some others also from KL, I think, whom we did not get to know. We went in to talk with the "Master". His name is Leong and everyone calls him Master Leong, or just plain Master (sounds kinda like a Chinese Kung-Fu movie). To cut a long story short, after we answered his questions, he concluded that Nadiah is autistic and recommended that she should start treatment immediately, i.e. right there and then!! While this was going on, Nadiah was getting upset with something and was trying to get off her stroller. When Master got close to her to "plant" in the needles, she started to struggle. It was such a horrid time. Every time a needle went in her head, her hand would fly about and knock it out. We had to hold her down so that Master can put in 4 needles. I have to admit that they were tiny ones but I worried that it was hurting Nadiah. Master assured us that there's no pain. It's just that she was scared of a new place and someone unknown to her. The first time is always like this, he said, and that it will be fine after 2 or 3 sessions. Nadiah was still crying and screaming and it took us half and hour to finally calm her down and at last fell asleep. We took her to a quiet corner along the corridor and let her nap for a while. After an hour, it's time to take the needles out and it started all over again. Master asked us to wait 45 minutes and go for a 2nd session. We decided not to and said will come again the next day. We were having second thoughts. Nadiah looked really tired in the car and we were tired as well. I don't think I'll be able to let her go through it all again, not to mention myself. At the apartment Shukri and I discussed whether to go on with the treatment. After much deliberation we decided to try for a week and see how Nadiah would take to the treatment. Oh did I mention that during the treatment she is also to go on a very strict diet? No sweets what so ever. If the food product is sugar-free but the taste is still sweet, then it's a no-no!! No dairy products (means no milk for her), no junk food (that's ok) and only four kinds of fruits (apples, guava, orange and pear), and even those are not the ones which are too sweet. On top of that, there's the powdered medicine she has to take; 3 tea spoonfuls, three times a day, mix in with water to drink. I can't even stomach the thing and I don't have to try it on Nadiah to know she will definitely not like it.
So off we went on the second day, equipped with Baba's laptop so we can distract Nadiah with Barney or Elmo, and some other toys for her to play with. My heart was pounding , ready to go through yesterday's episode all over again, as we approach Master. Did she struggle? Yes.. for about 5 seconds! Then she was fine , not even bothering those antennas on her head. Hmmm.. that's funny. Why wasn't she screaming at everybody? But never question your good fortune. Shukri quickly took out the laptop and started Barney for Nadiah. This is out on the corridor, you see. And before long, other kids were starting to pull up a chair behind Nadiah to watch the show. It's like a mini cinema. We went for two 1-hour sessions with a 45 minutes break in between. Time to go home, and Nadiah was still fine and dandy. No problems, no sirree!!
That started our daily routine for a month. We'll be at the clinic around 2pm and be done by around 5pm. On the way home, we either stop over at a playground or a shopping spot, and it's back to the apartment. After a day or two, we moved from the corridor to the another room the clinic provided where all the children and parents are able to camp-out and relax. We always brought a laptop to provide entertainment for the kids. Shukri and I became the favourite Aunt and Uncle for the kids. Most of the kids are brought over by their maid or tutor or grandparents, so that left Shukri and myself, the hip and cool aunt and uncle, to keep the kids entertained. There were some old, broken up toys at the clinic which really should be thrown away, and also 2 tricycles where the kids can ride along the corridor. Imagine this: little hyperactive kids running around with antennas sticking out of their heads or riding tricycles but not a word left their mouths. Some older kids sit at the table to do coloring or writing or jigsaw puzzles but the little ones are left to run around.
During our month at Tole clinic, the patients keep changing; some went back to their respective homes and countries and new ones join in the group. There was an 11 year old Indian boy form Sabah, Sanjeev was his name, joined us after about a week we were there. He was severely autistic. But his mother, a medical doctor, did a lot of work with him and has taken him to so many treatments all over the world and now he is almost like a normal boy. He reads and writes perfectly fine, goes to a normal school and is basically independent. The only problem was he would not talk. He can talk but only after you tell him to. He understands us pretty well and would answer us when his auntie prompt him to do so. We got to know him pretty well as was his aunty. Other kids who joined us later on were Aizat (4) from Shah Alam and Amir (6) from KL. Also there were two very hyper and very naughty Chinese brothers, Chai Ching (6) and Chai Yong (5) from Nilai. Thank God they only come in once a week or they would drive all the parents crazy.
Here's a picture of Nadiah with her antennas. The one on top is of her and Sanjeev playing bubbles; provided by the cool Aunty Yatie and Uncle Shukri.
After about a week of acupuncture treatment, we started to see a difference in Nadiah. She was more vocal than usual. All of the songs that she's been listening to all these times started to come out. I guess she has been storing them all in her head but has never voiced them out. Her learning ability is so much better; meaning she easily absorbed new words and actions like a sponge and was voicing them too. She was also taking the time to stop and look; to see at things that are going on around her. Not just look, but was also copying the actions of other kids. Most importantly, she has become very manja; loves to hug and cuddle now and would wrap her arms around me when she wants to go to sleep. Heaven!!
After conferring with Master Leong, he suggested we commit Nadiah to a 3-4 months treatment. It was easy for him to suggest but that would mean for us to stay in KL for a further 3 months. Even for us to stay a month meant that Shukri had to take an unpaid leave of absence from work. A further 3 months treatment also means 3 months unpaid leave. A day of treatment cost us RM138. We are talking roughly RM5,000 a month including food and petrol. No work, no money!! As at the end of our 1 month treatment fasting month was drawing close, we told Master that we would have to go back for a while and come back after Raya. But really, we didn't have any intention of coming back. We thought to try the "traditional" method which is going to see a psychologist. We did not come to this conclusion lightly though. After a month, we noticed that Nadiah's condition is not as bad as the other kids. For one, she is very young and the earlier we treat her, the better her chances are. Also, she can actually talk, albeit slow, babyish and seldom, but the point is she CAN talk. She's also able to think for herself. Example: if she wants to get something she can't reach, all she needs to do is pull up a chair and climb up. Easy enough!! We have never shown her how to do it. It was by sheer observation on her part. That means for something I should say!!
Another reason is, although she was improving in some areas, her tantrums were getting even more intense. She has started to bite and even getting more aggressive than before. Not that she was having them that many anymore but when it happens, it was an ordeal for all of us. So bye-bye to acupuncture.
After raya, we made an appointment to see a clinical psychologist in LGLH in Penang, one Mr Alex. At the first appointment, I was to go in and have a talk with the doctor, explaining Nadiah's behaviour and our worries then bring in Nadiah to meet him. As soon as Nadiah stepped in Uncle Alex's (as she was asked to call him) room, she was amazed. Why? Because Uncle Alex (UA)'s room was like a mini Toy's r Us. Seriously!! It was full of toys. Along one wall is a cabinet, a LOCKED cabinet with these clear, hard plastic sliding door (perspecs I think they are called). Inside, UA had arranged toy animals, teddy bears, a doll house with all it's furniture, doctor & nurse playacting stuff and loads more. Nadiah just couldn't decide; to get those in the cabinet or to get those on top of the cabinet or others that were on the other side of the room. There was even a little sand box for her to play in. We couldn't get her to stay still. UA taught us a couple of exercises we would have to work with Nadiah; one being to sit her in front of us with our legs and arms around her making her unable to move. It looked very uncomfortable for her as she would be struggling to get out. But this would teach her to accept our touch and comfort her her when she's feeling insecure. When UA was trying this on Nadiah, she got so aggressive and was kicking and scratching UA. I felf so helpless. It was bad enough when she does that to us, but this was someone who has never seen what she could be like. But UA was the gentlest as could be. He tried talking to her and soothing her and plainly ignoring the red welts I could see appearing on his arms and neck due to Nadiah scratching him. He was the BEST!! I guess he is used to these behaviour. After all it is his job. One thing UA taught us is not to give in to Nadiah's wants and needs. When we give orders, we are to stick to it, not to give up half way.
UA's conclusion? Nadiah is only mildly autistic especially in her social behavior. She doesn't have any repetitive behaviour patterns or any sensory issues (where a child may have very poor or too strong sensitivity of her senses: taste, hearing, touch, sight and sound; either any or all five of the senses). We will be working towards having her entering a normal school and to be independent.
The first exercise I managed to teach Nadiah is to clean up her toys after playing. Boy, what a success!! And she has been sticking to it until now. She may not remember to do it on he own, but when I remind her to, she will quickly do it.
It's been 8 months now since we've been seeing UA and Nadiah has come such a long way. She very seldom has her tantrums anymore and even then it's not so aggressive. There is so much better understanding between us and she's taking orders well. She has also started to play with other people, not just Shukri and myself, but also with her cousins and grandparents. There's also imagination in her play time, although once in a while she still lines up her toys, but at least she plays with them as they were meant to be played.
Though there is still no back and forth conversation between us, her vocabulary has increased and we generally know what she's trying to say. But one thing is still unchanged... she is still a happy, happy girl!!
We have great confidence in her and she is making so much progress and hope one day she would be able to express herself with words and we would be having long conversations as a mother and daughter should.
Sorry this has been such a long one. But I thought I might as well wrap everything up in this entry or you'll be getting "She could be autistic..." Part 3. Anyway, thank you for reading/listening to my stories. I'm just trying to give a little insight of what my little girl is like and to make people understand her better. Thank you and have a nice day.
2 comments:
I know how you feel, I felt the same way when it comes to Adriana. Every small things that she did, it's a big achievement to me.Maybe one day we get to gether with the girls and let them mingle-they might click like the mothers!!!
Ya, let's hope so. Jangan masing2 buat hal sendiri, at last the mothers yg sibuk "clicking"... hehe
Post a Comment