Summer school

Summer school is about to end on the 29th of July 2009. The school district is somehow trying to minimize the impact of the recession. The district allowed only four schooldays for this summer that is Monday - Thursday.

It took me to some heights again to press the summer school where he is attending that he must be given grade-level academic work. Imagine, the first 3 days of school, the summer school teacher showed me three pages of preschool work? I flipped. I sent an e-mail to the principal of his current school to demand that he must be given grade-level activities. Yes, I flipped in a sense that I was determined that he must not be given stupid lessons when a teacher wants to buy time inside the classroom. I used the word, "demand" because I was firm that AX's thinks far beyond than he can speak. On the first Thursday of the summer school, he was finally given something relevant. It was minimal but am thankful that what I did made them come to their senses. However, I am still cautious. Nonetheless, let it be known that the teacher is kind and is trying her best. However, I hope that she believes more that students with autism can go mainstream. I just felt so bad that she thinks low of what the students with autism can reach or do in life. She thinks, that these disabled students are forever chained to their current situation. It tells me that HOPE is a very elusive word and should not be for children with autism. Life is choice and choosing hope to live everyday is wonderful.

On a similar note, I saw some videos of adults with "severe mental disabilities" and they are picking up trash. They are being interviewed by a lady. They answered her questions properly albeit some in a slow pace response. This is my commentary and I hope she will publish it.

I feel bad that their job is to pick up trash just because they have "severe mental disabilities." They responded to your questions properly and that does not essentially qualify them as having a "severe" condition. I hope you can post more videos showing these individuals what they can really do. It somehow tells me that they went to school when they were young and since they have severe mental disabilities, all they could end up to is picking up trash in their adult years? Life is harsh.

4 June 09

Today is an early release day for AX. I really thought that Friday will be the last day of school. I taught him superlatives today (-er, est). I asked him to draw me a big heart, bigger heart and biggest heart. He also did one page of the Starfall book about compound words. My plan this summer before he goes back to school this 29th of June is for him to be familiar in making short or simple sentences. I hope he will feel comfortable with "words" soon in order to help him for the rest of his life.

DTaP and Swelling - 1 June 2009

Our second son AL was given his last dosage of DTaP on the second Saturday of May 2009. The following day, Sunday, his right upper leg was swollen. We called the doctor and we were told to give him Benadryl with Allergy and Tylenol (acetaminophen). He had no fever nor he felt pain according to him. We squeezed his affected leg and asked him if it is painful. He said that it is not even though the swollen part was hot. We took him to the doctor on Monday and his right upper leg was really so big and it went up to the back of leg. I was hoping that it will not reach his private part and it somehow did not.  On Tuesday, the swelling dissipated a bit. We took him back to the doctor Wednesday and somehow the bulge is much less.  The swelling became manageable by next Saturday. However, he had a fever the following Sunday. I am thinking he got sick from getting wet in the rain. It has been raining for almost two weeks now. 

It was frightening to have this experience given the fact that his older brother has mild autism.  According to the doctor, it was a local reaction and this can occur in the fifth DTaP. I do not know if he might still get the other vaccines required before he turns 6 years of age. We have delayed his second dose of MMR. We did the same thing with our youngest daughter who is 26 months now. She does not have MMR yet in her system. 

Anybody who have thoughts to share, will appreciate.

TIME's Adult Autism - 31 May 09

There is an article about adult autism in Time magazine recently (around 2 - 3 weeks ago). It was a bit pitiful to see what this man ended up into his adult life. I can only express pity for as the author (Karl Taro Greenfeld) said there are less studies or focus into adult autism. I cannot make judgment to the family. Each child with autism and his/her family are different from another family with similar situation even though they pursue the same goal to put or make the child with autism a functioning person in the society. I have watched the two 60 Minutes episodes about this family before and after they took him to the institution. Noah Greenfeld carried on the "autism" throughout his life. He was subjected to medications and this makes me feel so villified.  The man also endured the USIs. And this reminds me of what happens to AX whenever he is at school. Sad to say, he still cannot relate what happens to him nor if someone does something to him. This is the reason why I am pushing him to talk or communicate. He needs to defend himself. On a side note, I have also read and watched a 7-year old boy who committed suicide mainly due to the medications given to him. Imagine, you will subject a 7-year old kid to medications suited for adults just because you want them to stop certain behaviors? I just cannot remember though if this kid who died also has autism. He was raped constantly as well when he was under the care of his biological mother.

I do not know but I am striving hard for AX to be as normal as possible since he needs that once he grows up. He needs to be independent hence to be as normal as possible is very important. Anything can happen to us and who will take care of him? I do not have an ounce of trust in the state to take care of him. I have a constant worry everyday and this will not change until AX can be a meaningful part of the society. 

In the TIME magazine's article, the author relates that his younger brother has low-functioning autism and he is not getting enough of the state's services that should be provided to him. This is also true for kids with high-functioning autism. We (as parents) struggle with the school system to provide him a good education, to let him mainstream and keep focusing on the positive side. There is a dearth of people providing services who can truly understand what is autism and how it should be handled. AX still has not gotten into Medwaiver program so he can go to speech therapy that the state will pay for. AX has been in the waiting list for more than 2 years now. 

It would be relevant to read another article of Karl Taro Greenfeld. This is the link: http://www.nytimes.com/2009/05/24/opinion/24greenfeld.html?_r=1 

Update on AX - 30 May 2009

I need to make a post before the month ends. Well, I was told by the autism coach that he is doing well in the Language mainstreaming. He said that he may have ups and downs but that is normal. Hence, we asked the school in the 4th week of May to have him continue the Language mainstreaming in Second Grade.  He will proceed to Third Grade and we will just hope for the best that he will pass the FCAT Third Grade or we have no option but the school system in Florida insists that any student who does not pass the FCAT Third Grade will be retained. Where in the world did they have a study that a child will perform well when he is retained? Nevertheless, we keep hoping, trying and helping him to acquire the skills needed for the examination.

We watched UP and it was a good movie but they "killed" the mother in the beginning just like they did in Finding Nemo. Disney/Pixar is so cruel.

Update on AX - 21 May 09

It has been months now since I put something here. We are occupied on a daily basis when our daughter was hospitalized for 9 days for diabetes. She was 22 months old that time. She is doing fine as of the moment but blood sugar level has been a day to day struggle. We need to maintain the level and sometimes it is really freaking hard especially when she does not want to eat or will just let the food rot inside her mouth.

Anyway, I was able to fight for or insist that AX be put in mainstream class for Language (meaning, nouns, verbs, adjectives, prepositions, etc...). It was hard because we asked the principal to let AX do trial period for Language. The ESE Specialist said that he was doing pretty bad. She judged him on the basis of 1 trial period (30 minutes or less) when AX should have gone 3X (1 per week - that is all we were allowed; yet they only put him there 1x) to Language mainstreaming since it was started in the 2nd week of April 2009. We bombarded her for that because I cannot seem to fathom how come the school and the people who are supposed to know about autism have low regards for disabled students they are handling. We did a classroom observation on 13 May 2009 in the Language mainstreaming. Axell did very, very good. He even went to the board and put the correct answer. The autism coach and the classroom teacher were somehow petrified when Axell went to the board. I saw in it on their faces. Tthe lesson was about the articles A and AN (an apple, a book). Axell put the correct answer in the sentence. Nonetheless, am thankful that they are still trying. I just hope they can maintain the trust to every students with autism - They can do it. They just have some processing issues at times but they can do it.

AX is still having a hard time in comprehension but am still very positive he/we will get there soon. He needs to get there not because we want to. He needs it since he is growing up and he has to express himself, learn more of the world and be able to maintain independence. I am still teaching him to make a sentence and am hoping this summer he will be able to do it more and more. He had done some sentences before. I asked him, "What is this?" He said and put, "It is an apple."

I will continue later.

Back to school - 20 Jan 09

AX did not want to wake up this morning. I bet, he is regaining back his energy as he did not sleep Sunday night (18 Jan 09). He was up until 1:30AM EST and I saw him he was still wide awake. I have to raise my voice to tell him that he has to go to bed and sleep. After 15 minutes or so, he was sleeping soundly. However, he must have been restless because he was awake before 7AM Monday (19 Jan 09). He went straight to his N64 console and asked for his game, "I want game."