Knowledge and Autism

I was looking at my writings in the e-mail. It seems I really did not write at all in 2017. Yes, it is a sad year because of two deaths in the family. It is our first time to encounter pain.

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Since Ax was young, I have been teaching him. It paid off because he has more knowledge than other kids with autism. More often, I would hear the adults around him will say, "I did not know that he knows that, it is good that he knows that, it is awesome for him to know that." As much as I dislike to listen to their admiration, it shows that many adults in the school system or even those who are outliers for the students/kids with autism like speech therapist, occupational therapist, physical therapist, psychologist, behaviorist, they all have a low-level expectation of what a child afflicted with autism can do. This makes me feel the unfairness the society thinks of anyone with autism. This is where we enter and this is how I call it fighting for your kid with autism. If a person of color, a person with physical disabilities are feeling that they are being diminished, people with autism are in the lowest ebb of society. Money is not the key to uplift them; it is just a helping hand to ease the pain of having someone in the family with autism. The family who likes to ride on the back that their child has autism and would not want it any other way - deep in my heart and deep in their hearts, they would not want to be in those shoes. I dislike the autism in our son because it does not give him the peace, the being that he is. I do not want to push our kids in what they can not do. I always tell them that they have to persevere, be industrious, kind, self-sufficient, self-reliant, smart and understand things not memorize them. Life as you grow older is not kind, the foundation you have as a child will be measured on how you view life when you get older. The affliction of autism is that it keeps ....

more to come

Update: 16 years old and still with autism part 2

The clashes with the school districts have always been a part of us. We are really so popular somehow as much I as dislike it to the max. Perhaps, it will never end as Ax is on his 11th grade and we are still unclear if he will stay at the public school after graduation. Unfortunately, he has still no good control of himself and with this I mean, anger. It is surreal that even with smallest things, he can get angry. Well, it also happens to normal persons but for kids with autism, it is 10 times more unsettling to have their anger be exposed especially as they grow older.

I mentioned the school districts because we have been to three states and the story remains the same. Perhaps, that is our fate when it comes to our son with autism. I hate the word autism because it always mean a struggle, a fight for someone who can not help themselves and this brings frustration to us since we just want normalcy in our lives. Although this problem has not yet severed our marriage, our relationship with our son with autism and our relationship with the two other kids, we have anxieties of what the future is in store for us. I always hope that we will be able to cope and that "this too, shall pass" will always be there for us.

3/23/2018

Autism

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

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

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

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

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...

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.