AX will turn 8 years old tomorrow. He is a big and robust boy. Some weeks ago, we found out that he is gaining unnecessary weight for his height/age. He has a little belly and funny it seems, he needs exercise.
5/21/2009
Friday, March 23, 2018
8th Day of School 2008 - 2009
AX was dressed in blue shirt and khaki pants when he went to school this morning. It was 6:38AM when we arrived. It was early. It is much better than worrying while driving when time is of the essence. It is around 7.5 miles from the house to the school. We must really leave on or before 7:15AM to be on time without so much hassles.
Mr. H flagged me down when I was about to cross the street. He asked me about the assignment of AX.
2008
Mr. H flagged me down when I was about to cross the street. He asked me about the assignment of AX.
2008
10th Day of SY 2008 - 2009
How time flies! The second week of school is almost over. We arrived at 7:44AM today and it seemed like the week will conclude without a noise. I hope so much. he was dressed in jeans and white shirt.
He was given a 5-sentence reading comprehension and he did it well. It was about the chickens. He was given 2-digit subtraction with regrouping. I gave him additional work to do apart from the school stuff.
8/29/2008
He was given a 5-sentence reading comprehension and he did it well. It was about the chickens. He was given 2-digit subtraction with regrouping. I gave him additional work to do apart from the school stuff.
8/29/2008
24 Sept 08 - 28th Day SY08-09
His father and I had an argument about school again. You see, AX is lagging behind in Reading/Language. The previous two schools where he was enrolled did not do anything to help him in Reading/Language. He cannot talk yet like us or the normal kids of his age so I am thinking, that they were of the thinking that AX cannot think. They conducted a lot of tests on him and it showed that he is on the preprimer/primer level in Reading/Language. Whose fault is that? I have been very diligent in asking them to teach him but it seemed like all my efforts were wasted. His father will tell you that it is my fault. Sad to say, I have focused on Math after school and now he is in mainstream...
More to come...
Written - 2008/2009 SY
More to come...
Written - 2008/2009 SY
Tri-state area is the worst place to have kids with autism
We have been relocating from one place to another due to job placements. For a long time, we lived in FL and bought a townhouse. I thought, we will be there for good. All three kids were born in FL and raising children in your own house might be stagnant for a wish since a change must be initiated to give some flavor to life. This is the start of our adventure.
In FL, the first born entered school in February 2004. He was thought to have autism on the day he turned three when we brought him to his second pediatrician after relocating to South FL. The second pediatrician threw in the idea that he might have autism after our second visit to her office and told her that he is yet to talk and somehow he was so cranky. We told her of one incident wherein he kept asking for us to go out one night at past 9PM EST to drive around. He was crying and crying. He did not say in so many words but his constant word to us was "car" and at the same time pointing to it. I thought he was seeing some ghosts that he wanted us to leave the apartment. He looked afraid. It was three hours before midnight and it was time to sleep or rest for us since he was adamant to leave and would not stop crying, we took him for a ride. He stopped. I let the window rolled down a bit so fresh air can go inside the car instead of using the air conditioning unit of the vehicle. After this, I can not remember anymore if he fell asleep or he was fine after a joy ride.
Our next stop was go to a psychologist, a neurologist, a daycare center and FLDRS. Looking back now, I think, we made some wrong steps along the way. Everything was new and having told the boy has autism was like being pushed by government agencies and private specialists off the cliff. As parents, we were new to autism and that started our engine search for autism. I remember that his father said that it seems out of these criteria, the boy fit the description of having autism. He is not out of the loop. Having a first born son with autism became a puzzle to me/us and so many things were thrown on our way before the full explanation that having autism is a lifelong developmental disorder. It throws the child into the spectrum that having impaired social and communication skills can not ensure him independent living as he grows into adulthood. It is not a disease per se but a societal disease that many still do not understand nor accept its existence.
According to his psychological report done at the Miami Children's Hospital, he has severe communication delay and that requires him to have speech therapy. I remember the times we visited the office, he was sad and crying. He knew that the moment his father and I drove to that certain place, we were going to the hospital. He feared the times we visited the hospital to go to the office of the psychologist. Hence, we had to walk a long time at the hallway just to reach the office. He was not cooperative and even slapped the psychologist when he started singing. On our way out, he was adamant to go back to the vehicle.
More to come...
In FL, the first born entered school in February 2004. He was thought to have autism on the day he turned three when we brought him to his second pediatrician after relocating to South FL. The second pediatrician threw in the idea that he might have autism after our second visit to her office and told her that he is yet to talk and somehow he was so cranky. We told her of one incident wherein he kept asking for us to go out one night at past 9PM EST to drive around. He was crying and crying. He did not say in so many words but his constant word to us was "car" and at the same time pointing to it. I thought he was seeing some ghosts that he wanted us to leave the apartment. He looked afraid. It was three hours before midnight and it was time to sleep or rest for us since he was adamant to leave and would not stop crying, we took him for a ride. He stopped. I let the window rolled down a bit so fresh air can go inside the car instead of using the air conditioning unit of the vehicle. After this, I can not remember anymore if he fell asleep or he was fine after a joy ride.
Our next stop was go to a psychologist, a neurologist, a daycare center and FLDRS. Looking back now, I think, we made some wrong steps along the way. Everything was new and having told the boy has autism was like being pushed by government agencies and private specialists off the cliff. As parents, we were new to autism and that started our engine search for autism. I remember that his father said that it seems out of these criteria, the boy fit the description of having autism. He is not out of the loop. Having a first born son with autism became a puzzle to me/us and so many things were thrown on our way before the full explanation that having autism is a lifelong developmental disorder. It throws the child into the spectrum that having impaired social and communication skills can not ensure him independent living as he grows into adulthood. It is not a disease per se but a societal disease that many still do not understand nor accept its existence.
According to his psychological report done at the Miami Children's Hospital, he has severe communication delay and that requires him to have speech therapy. I remember the times we visited the office, he was sad and crying. He knew that the moment his father and I drove to that certain place, we were going to the hospital. He feared the times we visited the hospital to go to the office of the psychologist. Hence, we had to walk a long time at the hallway just to reach the office. He was not cooperative and even slapped the psychologist when he started singing. On our way out, he was adamant to go back to the vehicle.
More to come...
Update: 16 years old and still with autism
It seems like it is forever in time that we will deal with autism of Ax. I hope there will be an end to it since he is getting older and we, as a family, are all getting older. That is the danger of having a kid with this kind of disability. The fear envelopes you. I think, it would be a better case if you are dealing with poverty than with autism. Every now and then, I ask Ax's two other siblings questions when they are all adults, how will they treat Ax. Somehow it is changing based on how Ax presents himself. There are times since 2 summer school periods ago that he is getting angrier. Halfway when he was 14 years old, he was just angry most of the time. There would be good days but somehow the dark clouds will always cover the bright blue skies. We were always on the edge that the school will call us to pick up the student or that we will have to talk to the assistant principal. That is the kind of thing we confront from day to day since Ax was not himself at all. I felt pity and angry at the same time because we were helpless in making a change for the better. It is Ax who has to pick up the pieces and be responsible for his actions. His parents are just there for support. I know we are doing all we can to avert any negative actions so much as we would like to have bed of roses, it can not be.
Fucking Powerpuff Girls mesmerized him like he had to create havoc once he sees them. He watched them on his own even though we kept telling him not to load the video in youtube.com. It was blocked in all the computers, tablets and laptops in the house but he was still able to see them. He just looked at them jump and uttered non-sense and will do this forever. We broke the cycle all the time but he kept doing the mesmerizing stiff gaze. All of these took place in 2016 and 2017. He damaged the wall, he shouted, he wailed, he cried, he stumped his feet, he threw his hands on the air, he hit us, he was angry and then he stopped. He stopped. The menace stopped. It just fucking stopped and that's about it.
Towards the middle to end of December 2017, he was beginning to be at peace and for whatever reasons peace settled for like 4 months now, it is better to just flow with the water. We could have not been happier with this development and for that, we are thankful.
At present, he makes himself busy with opening and closing his teeth, clashing them like a bunny eating carrots and making a sound. He walks and walks around that house and just stops in wherever place he is and stares at whatever for a long time. He can be stopped but he does it again. At this point, you do not know if one thing that was lost, another thing comes up to replace it. This is better but at the same time very annoying since he might damage his teeth. Another thing that he does over and over is watching the same movie repeatedly.
Fucking Powerpuff Girls mesmerized him like he had to create havoc once he sees them. He watched them on his own even though we kept telling him not to load the video in youtube.com. It was blocked in all the computers, tablets and laptops in the house but he was still able to see them. He just looked at them jump and uttered non-sense and will do this forever. We broke the cycle all the time but he kept doing the mesmerizing stiff gaze. All of these took place in 2016 and 2017. He damaged the wall, he shouted, he wailed, he cried, he stumped his feet, he threw his hands on the air, he hit us, he was angry and then he stopped. He stopped. The menace stopped. It just fucking stopped and that's about it.
Towards the middle to end of December 2017, he was beginning to be at peace and for whatever reasons peace settled for like 4 months now, it is better to just flow with the water. We could have not been happier with this development and for that, we are thankful.
At present, he makes himself busy with opening and closing his teeth, clashing them like a bunny eating carrots and making a sound. He walks and walks around that house and just stops in wherever place he is and stares at whatever for a long time. He can be stopped but he does it again. At this point, you do not know if one thing that was lost, another thing comes up to replace it. This is better but at the same time very annoying since he might damage his teeth. Another thing that he does over and over is watching the same movie repeatedly.
Tuesday, May 23, 2017
Update: 15 years old and still with autism
How long has it been when he was diagnosed? It seems like it is forever. The battle with the school system is also forever. I do not think we will let him stay beyond 18 years of age. He will graduate by age 17. It might be better that way.
He goes to a regular high school. He is in autism classroom for Language Arts and the rest with regular education kids who are low functioning for Social Studies, Math and Science. He goes with regular education students for encore subjects. He still has behavior issues cracking up his system in different times of the day. In fact, the case manager wanted him to see a psychiatrist. At first, the case manager told us over the phone that it would be good for Ax to to be seen by a neuro-psychologist. We talked to her face-to-face and she now claims the person to see Ax is a neuro-psychiatrist. Upon seeing the name of the person on paper, it states: Names of Person, Psychiatrist. It is hard if parents are not too aware of what the special education is doing to your child in order to augment their tasks. Still, they want us to sign for them to get the federal special education dollars for him. It is really so ironic. The school gets a big amount of money compared to regular education students but they would not spend much time, effort and patience to help the students with disabilities.
I do not like to plan anymore. It is too much frustration when things go south while your hands are tied up. I am taking things step by step and it is better that way. Less frustrations, as they say.
He still goes to private speech therapy 3x per week paid for by the school district. We asked for that specifically. We are now asking for a behaviorist but so far the school is giving us a run-around. I really do not know if this speech therapy helps but it keeps us busy going to another town 30 minutes away from our place so he can be seen by speech therapists. He is still unable to communicate spontaneously but he has so much knowledge inside his head that he is not using his words to communicate as normal kids of his age.
FBA was initiated by the school this January 2017 and up until this minute, nothing has resulted in the "study".IEP has not been updated even though we have sent changes in March 2017. Anyway, we requested for a change of case manager. This has to be granted because we need someone who is not an subtle attacker.
He goes to a regular high school. He is in autism classroom for Language Arts and the rest with regular education kids who are low functioning for Social Studies, Math and Science. He goes with regular education students for encore subjects. He still has behavior issues cracking up his system in different times of the day. In fact, the case manager wanted him to see a psychiatrist. At first, the case manager told us over the phone that it would be good for Ax to to be seen by a neuro-psychologist. We talked to her face-to-face and she now claims the person to see Ax is a neuro-psychiatrist. Upon seeing the name of the person on paper, it states: Names of Person, Psychiatrist. It is hard if parents are not too aware of what the special education is doing to your child in order to augment their tasks. Still, they want us to sign for them to get the federal special education dollars for him. It is really so ironic. The school gets a big amount of money compared to regular education students but they would not spend much time, effort and patience to help the students with disabilities.
I do not like to plan anymore. It is too much frustration when things go south while your hands are tied up. I am taking things step by step and it is better that way. Less frustrations, as they say.
He still goes to private speech therapy 3x per week paid for by the school district. We asked for that specifically. We are now asking for a behaviorist but so far the school is giving us a run-around. I really do not know if this speech therapy helps but it keeps us busy going to another town 30 minutes away from our place so he can be seen by speech therapists. He is still unable to communicate spontaneously but he has so much knowledge inside his head that he is not using his words to communicate as normal kids of his age.
FBA was initiated by the school this January 2017 and up until this minute, nothing has resulted in the "study".IEP has not been updated even though we have sent changes in March 2017. Anyway, we requested for a change of case manager. This has to be granted because we need someone who is not an subtle attacker.
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