The title of this post.
I just read an article from Autism Daddy written in June 2011, and he have just re-shared it on Facebook.
God doesn't give more than you can handle!
I have heard this oh so many times. As a Muslim, I have to believe in this statement and be peace with it.
Yes, I really want to believe in it although I am not sure whether it's entirely true especially seeing so many daddies run away after they had a child with autism. Leaving the mother to take care of the child on her own. It is heartless. Half of the genetic code comes from you, jerk!
In a playground earlier today, I overheard an elderly man talking about something but I captured a phrase quite clearly, "we're human too", while puffing a kretek cigarette at the playground 3-meters from children playing there. I hate people who does this.
As humans, we sometimes yell to #1. Especially me.
We realize we're humans. Reading about it and hearing about it from other people that they sometimes yell to their autistic kid somehow makes it feel better, just for a while.
Why, because we know sometimes he can't help doing he does. We know he doesn't understand the basic concepts of life. We know he doesn't understand action and consequences. We know he doesn't understand why what he is doing annoys us, or what actually annoys us.
Because #1 is not severe, we forget all the time that he is autistic and as parents we expect him to be better. We forget, son. Not that we don't love you. We're just human. We're sorry.
The guilt sometimes consumes me. I feel guilty yelling, I feel guilty taking a break by watching movies with your mom, I feel guilty not being able to respond to you while I am working at home and you have no clue what I am doing.
We aren't superhuman and we aren't perfect. What we are doing is try to take care of you and provide the best for you as much as we can.
Do I know why God gives this to us to handle? We don't. All we know that God always has God's own reasons...
- Abah
A little family of t̶h̶r̶e̶e̶ four in Malaysia, discovering life with Asperger syndrome, Autism, and Amblyopia. This is our little diary. This website is anonymously written by Abah (Abah is Dad in Malay) but if you try hard enough you can track our real personalities. Not that we want you to, we are simply asking that you not to try. This blog might look outdated from time to time while we deal with life...
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Monday, September 1, 2014
Friday, August 22, 2014
International Seminar on Autism 2014
I attended the seminar that was held in April for two days. The seminar's main objective was to raise awareness to autism, with the slogan "autism is not a tragedy, ignorance is"
It was an effort by the prime minister's wife who is also in charge of the Permata project. Being international there are participants from other countries as well as delegates from First Ladies who are wives of presidents and prime ministers.
It was a commendable effort. However as a parent I don't feel that the event reached its main objective.
Take the example of an autistic child asked to leave the exhibition area because he was making noises. Mind that he was not in the seminar hall. Security was not aware of autism. Awareness was not achieved.
The best action was to let him be, so that people who has never know what autism is can experience and see with their own eyes, what autism is all about. Of course, each child would be different but having a real life experience is very beneficial.
For parents, most information are still vague and are the things that we are already aware of. It's even more depressing that most of the therapies and facilities discussed are not even available in Malaysia and I doubt they will be implemented anytime soon. Our kids are running out of time as we can't put them on stasis until those facilities are available in this country.
For rehabilitation centers and businesses, it's actually a good place for them to promote their service. A woman from a center actually talked to much, telling what her center offered, during the question and answer session. It's sad and selfish of her to rant about her center.
The sessions provided are mostly studies by academicians and parents are still left without better options.
What next?
On the positive side, we saw a school headmaster who came to learn more as a section for special needs has been placed in her school and she was extremely worried that teachers have not been given ample training.
Permata Kurnia, which is the autism arm of the Permata project will only serve kids in a certain age range... it looks like another money magnet to suck in our tax ringgits.
I have no idea what the government is doing, but it's not enough.
- Abah
The best action was to let him be, so that people who has never know what autism is can experience and see with their own eyes, what autism is all about. Of course, each child would be different but having a real life experience is very beneficial.
For parents, most information are still vague and are the things that we are already aware of. It's even more depressing that most of the therapies and facilities discussed are not even available in Malaysia and I doubt they will be implemented anytime soon. Our kids are running out of time as we can't put them on stasis until those facilities are available in this country.
For rehabilitation centers and businesses, it's actually a good place for them to promote their service. A woman from a center actually talked to much, telling what her center offered, during the question and answer session. It's sad and selfish of her to rant about her center.
The sessions provided are mostly studies by academicians and parents are still left without better options.
What next?
On the positive side, we saw a school headmaster who came to learn more as a section for special needs has been placed in her school and she was extremely worried that teachers have not been given ample training.
Permata Kurnia, which is the autism arm of the Permata project will only serve kids in a certain age range... it looks like another money magnet to suck in our tax ringgits.
I have no idea what the government is doing, but it's not enough.
- Abah
Tuesday, August 27, 2013
The Long Road Ahead
Our son will be 5 this year. We have been contemplating whether or not to have another child (or more children for that matter) but we finally decided to try.
As with our son, it didn't take long for conception to happen. Mama is now pregnant, and as before she is experiencing pregnancy sickness. This time, it's even worse that there are times when I actually feel regret of impregnating her. It's not funny at all.
I should probably get a vasectomy.
A normal Dad with normal family might feel nothing when it comes to expecting a child. For them, they already have the experience. However, I am quite terrified. Friends in Facebook ask me why I am terrified but they can only try to understand my explanation.
Dear son has improved in being more considerate, independently creating artworks (paintings, Play-Doh modeling), eating using utensils, singing, humming, speaking, imagining, etc.
However he still has a lot to improve, and still requires a lot of attention especially since he hasn't been potty-trained and requires assistance to take a bath.
With Mama being unwell, I have to take on a lot of work and as an Aspie it's really heart-breaking to see Mama sick, and to push son away when he requires attention.
Due to the nature of my work, I can sometimes work from home although it is frowned upon by the leadership. During the day, I do what I can by squeezing time here and there to help out with house work. During the night, I still do what I can until son sleeps at around 1-2 AM, sometimes 3 AM.
Then I'll continue doing some of my work until I become too sleepy, and then wake up in the morning for another fresh but sleepy day.
The truth is when son is around he only requires simple attention like playing or listening to his story or explanation about what he sees. However when I am working in front of the computer it's really hard to focus and I end up ignoring him or simply responding with a nod.
It is heart-wrenching to do that.
I am unsure whether other parents feel the same way, or be able to still focus on work while responding to their children.
All I know is that I am trying my best to be a husband and father, and to provide as much as possible for the family I love so much.
- Abah
As with our son, it didn't take long for conception to happen. Mama is now pregnant, and as before she is experiencing pregnancy sickness. This time, it's even worse that there are times when I actually feel regret of impregnating her. It's not funny at all.
I should probably get a vasectomy.
A normal Dad with normal family might feel nothing when it comes to expecting a child. For them, they already have the experience. However, I am quite terrified. Friends in Facebook ask me why I am terrified but they can only try to understand my explanation.
Dear son has improved in being more considerate, independently creating artworks (paintings, Play-Doh modeling), eating using utensils, singing, humming, speaking, imagining, etc.
However he still has a lot to improve, and still requires a lot of attention especially since he hasn't been potty-trained and requires assistance to take a bath.
With Mama being unwell, I have to take on a lot of work and as an Aspie it's really heart-breaking to see Mama sick, and to push son away when he requires attention.
Due to the nature of my work, I can sometimes work from home although it is frowned upon by the leadership. During the day, I do what I can by squeezing time here and there to help out with house work. During the night, I still do what I can until son sleeps at around 1-2 AM, sometimes 3 AM.
Then I'll continue doing some of my work until I become too sleepy, and then wake up in the morning for another fresh but sleepy day.
The truth is when son is around he only requires simple attention like playing or listening to his story or explanation about what he sees. However when I am working in front of the computer it's really hard to focus and I end up ignoring him or simply responding with a nod.
It is heart-wrenching to do that.
I am unsure whether other parents feel the same way, or be able to still focus on work while responding to their children.
All I know is that I am trying my best to be a husband and father, and to provide as much as possible for the family I love so much.
- Abah
Saturday, February 23, 2013
Speech & Hearing Centre, Sunway Medical Centre
As advised by Dr. Juanita we made an appointment for a hearing test at Sunway Medical Centre since we are more familiar with the area (compared to Cheras).
The test was done at the Speech & Hearing Centre but I forgot to get the therapist's name. He was a young Indian male and he was very nice to our son. The most important thing is that he knows how to handle children well. Our son was happily following his instructions.
Centres like this has good tools to determine whether the child can hear the sounds being tested. By tools, I mean toys. During our session the therapist used marbles and instructed son to put in the marble into the structure if he hears the sound being played.
For children who can't respond I think they might have to plug in probes to look for brain activity. DO NOT take my word for this as I don't know. I only saw pictures of hearing tests that has a lot of wires to the child's head and I was really afraid they're going to do this to our son. Luckily, he is able to listen and respond.
The test was initiated with sounds playing on the speakers, but most of the tests afterwards were using headphones.
The good news? Our son's hearing is well and he passed all the tests.
If you need their service, please click on the link in the 2nd paragraph above.
- Abah
The test was done at the Speech & Hearing Centre but I forgot to get the therapist's name. He was a young Indian male and he was very nice to our son. The most important thing is that he knows how to handle children well. Our son was happily following his instructions.
Centres like this has good tools to determine whether the child can hear the sounds being tested. By tools, I mean toys. During our session the therapist used marbles and instructed son to put in the marble into the structure if he hears the sound being played.
For children who can't respond I think they might have to plug in probes to look for brain activity. DO NOT take my word for this as I don't know. I only saw pictures of hearing tests that has a lot of wires to the child's head and I was really afraid they're going to do this to our son. Luckily, he is able to listen and respond.
The test was initiated with sounds playing on the speakers, but most of the tests afterwards were using headphones.
The good news? Our son's hearing is well and he passed all the tests.
If you need their service, please click on the link in the 2nd paragraph above.
- Abah
Child Specialist Visit at UKM Specialist Centre
It's been a while since I had the time to continue writing in this blog. Mainly because I had a new job, which is very challenging. Travel to work at 8.00AM and arrive back home at 9.00PM, sometimes 10.00PM. Enough about me.
We managed to secure the appointment with Prof Madya Dr. Raja Juanita Raja Lope at the UKM Specialist Centre and went there on the 26th of December 2012. Her specialty is Developmental Paediatrics.
The doctor is really nice, and we are very satisfied with the diagnosis session. She had a lot of tools among them are color coded cards, toy blocks to analyze the ability to follow instructions, and picture books to see the child's imagination. She also tested motor skills by asking son to do certain movements according to her instructions.
Before engaging our son, she collected as much information as possible from us especially in family history. Son didn't take long to get comfortable in the spacious consultation room.
The session lasted a bit more than 2 hours, and the final result is that our son does not have Asperger's and he only has some of the traits of autism. In other words, mild autism. So he was categorized under PDD-NOS.
He is also officially awarded the Orang Kelainan Upaya (OKU) status (Persons with different abilities) which will enable him to get certain benefits from the Government. We are applying for this status at JKM to be able to certify his needs and hopefully get some kind of priority for therapies and treatments when necessary.
The doctor provides us with the forms to be submitted. Officially, the main diagnosis is still Autism Spectrum Disorder. I have no official source to quote, but in 2013 Asperger's will not be categorized separately and will also be a part of ASD. The doctor also mentioned this.
Are we surprised? No we are not. But it's official. We now need to train ourselves to take care of our autistic child.
As for schooling, the doctor advises us to get him into a normal school. But we've tried and it's not possible right now due to his inability to listen to instructions and react properly to social cues. We are hoping that after therapies he will improve and he can go to school.
Asked about whether siblings will help him improve, the doctor said definitely but she also warned us now that out first child is autistic, there is an 8% probability that our next child will be autistic too.
Back then, we had to think. As the time of writing, we have decided to try for his brother or sister later this year when I'm all settled down with my job issues.
The biggest issues right now would be securing funds for the therapies, and actually getting the appointment for the therapies. They are in high demand and waiting lists are actually listed as months!
Cheers,
- Abah
We managed to secure the appointment with Prof Madya Dr. Raja Juanita Raja Lope at the UKM Specialist Centre and went there on the 26th of December 2012. Her specialty is Developmental Paediatrics.
The doctor is really nice, and we are very satisfied with the diagnosis session. She had a lot of tools among them are color coded cards, toy blocks to analyze the ability to follow instructions, and picture books to see the child's imagination. She also tested motor skills by asking son to do certain movements according to her instructions.
Before engaging our son, she collected as much information as possible from us especially in family history. Son didn't take long to get comfortable in the spacious consultation room.
The session lasted a bit more than 2 hours, and the final result is that our son does not have Asperger's and he only has some of the traits of autism. In other words, mild autism. So he was categorized under PDD-NOS.
Some developmental health professionals refer to PDD-NOS as “subthreshold autism." In other words, it’s the diagnosis they use for someone who has some but not all characteristics of autism or who has relatively mild symptoms. For instance, a person may have significant autism symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restricted, repetitive behaviors.So we are advised to get him to therapies such as occupational therapies and speech therapy. We were also instructed to get a hearing test done.
He is also officially awarded the Orang Kelainan Upaya (OKU) status (Persons with different abilities) which will enable him to get certain benefits from the Government. We are applying for this status at JKM to be able to certify his needs and hopefully get some kind of priority for therapies and treatments when necessary.
The doctor provides us with the forms to be submitted. Officially, the main diagnosis is still Autism Spectrum Disorder. I have no official source to quote, but in 2013 Asperger's will not be categorized separately and will also be a part of ASD. The doctor also mentioned this.
Are we surprised? No we are not. But it's official. We now need to train ourselves to take care of our autistic child.
As for schooling, the doctor advises us to get him into a normal school. But we've tried and it's not possible right now due to his inability to listen to instructions and react properly to social cues. We are hoping that after therapies he will improve and he can go to school.
Asked about whether siblings will help him improve, the doctor said definitely but she also warned us now that out first child is autistic, there is an 8% probability that our next child will be autistic too.
Back then, we had to think. As the time of writing, we have decided to try for his brother or sister later this year when I'm all settled down with my job issues.
The biggest issues right now would be securing funds for the therapies, and actually getting the appointment for the therapies. They are in high demand and waiting lists are actually listed as months!
Cheers,
- Abah