Wednesday, July 5, 2017

Summary Half of 2017

Jonathan grew up so much in the past 12 months. At 15 years, he is now 5'9" and 180lbs. I feel like a tiny person next to him. He is not quite as tall as his dad yet, but hopefully he will grow a couple more inches.
Jonathan finished 9th grade with excellent grades. He matured quite a bit this school year and became very responsible with his academic work and grades. He wants to go to a good college and he knows that his High School Grade Point Average is key. So he worked really hard this first year. He was able to get into more advanced courses next year as he got “A”s in many clases. And he is advancing in math by taking Algebra II in the summer so he can take Pre-calculus in 10th grade.

He really got into music this year. He is taking private violin classes and went to James Madison University during Spring Break for a 3-day stings camp.

He made good friends while at school and he also has a girlfriend. She is a sweetheart and they look great together. She is teaching him a lot about relationships and he is adjusting well.

Jonathan and I now openly talk about all kinds of topics. When it comes to autism, we talk about what he has improved and what areas he still needs to work on. He has improved so much that it is hard to tell how severe his autism was. He still has sensory issues when it comes to light, sounds, and touch. He asked me not to force him to go to the movies anymore. He does not like being in a dark room full of strangers watching a very loud movie. So I agreed. He will go when he wants to. He still has issues with certain foods as well. And he is working hard on his empathy. He knows that he sometimes does not have enough. With regards to his attention, he takes medication to help him focus. The issue is not so much the lack of focus but the amount of information around him. He has trouble filtering out noises that are not necessary. And that distracts him or overwhelms him. But he is better at self-advocating.  He also enjoys jokes and sarcasm (sometimes too much). And although sometimes his comments might seem inappropriate to his sister (teenagers will always be teenagers), he rarely makes out of place comments. He is very polite and very sweet.
He is very smart. During parent-teacher conference, I got a lot of feedback from his teachers about how smart he is. And many even commented that not only is he smart, but he does not take lecture lightly. If something does not make sense, he will challenge the professor. That is a great quality to have nowadays :)
He still loves video games and listening to music. And although he is doing really well with abstract literature at school, he loves to read factual books. He loves to go to the theater, he loves orchestras. He enjoys museums as long as he understand that is in display. Abstract paintings are not his thing :)
We are going to have a hectic summer. I will update the blog after the summer is over.

Saturday, February 11, 2017

Summary 2016

Jonathan is now an incredible young man. I am so proud of him. He now attends a Catholic High School and really enjoys it. He has a couple of really good friends and other friends he enjoys playing video games with. He is now about 5' 9" tall.

During the past 2 years, he really blossomed. Going to a Catholic school gave him the inner strength he needed to embrace himself and learn self confidence. He did very well as school and required no support. He was given extra time for the tests if he needed it and he advocated for himself when he needed to take it.

In High School, he has adapted well to the routines. His favorite class is string (music). He loves to play the violin and he missed 2 years while he was at middle school. So when he started, he was given the 2nd to last seat in the orchestra. He has now moved up already in the middle of the year and he hopes to move to the first section by the end of 9th grade. He is playing beautifully.

But what is even more interesting is that one of his best subjects is English. Imagine that! English! We were told that he would never speak when he was 3 and later we were told that he would struggle with language because his verbal IQ was 75 at age 8. Now he is getting 99 in English grammar and literature in High School. I wanted him to get an IQ of 100 before he went to college. And although we have not testing him lately, I am sure that he is well over that now. Amazing what he has been able to accomplish. I am very proud of him.

Saturday, November 15, 2014

Summary of 2014

There were a lot of changes in 2014.  Jonathan had a great year.  He finished elementary school (in our area, 6th grade is still considered elementary) and he changed schools to start middle school.  We made the decision to change from public school to Catholic school.  So far, he is doing fantastic.  He was accepted with a probation letter pending proper academic performance and proper behavior and he has done absolutely great.  He is getting over 90 in all his courses with no help other than my help with some projects. 

Jonathan is now taller than me.  He is 5’5” tall and weighs about 130lbs.  He looks thin and older.  He will be 13 soon.  Amazing how much has happened in the past 10 years.  He made new friends in his new school and he is genuinely happy.  He is no longer doing Tae Kwon Do or Baseball.  The school commitment is so much more stressful, that he cannot spend more than 2 nights a week out.  He is attending Spanish lessons and he goes to an Athletic Performance training that keeps him in shape.  His passion is still video games J L.

Regarding biomedicine, he still takes about 30 pills a day. But we no longer do any special therapy or major biomedical therapy.  Because he does have ADHD now, in addition to his autism, he takes Concerta to help him focus.  I really would like to get back into proper research to help him overcome ADHD without Concerta, but my job schedule and extra-curricular activities does not give me time.  I am also 10 years older and do not have the same energy level.  I stay as current as possibly by helping others, but not deep enough to help Jonathan further.  He is very high functioning and the therapies that I research for the younger kids that are more severe, do not apply to him anymore except for the supplements he continues to take to bypass his nutrigenomics.

Sunday, January 12, 2014

After Research Volunteer Appointment

Today we had an appointment at Children's for a research study we are participating in.  The appointment went well and Jonathan finished a bit earlier than expected. After the appointment, we went to his baseball clinic. On the way there, I asked Jonathan if they had told him what the research was for and he said no. So I explained to him that it was to collect data about how his mind works now that he is so high functioning. So that grabbed his attention and we had a great conversation. I explained that this research is intended to study kids like him who are recovered or very close to being recovered from autism and compare their behaviors and responses to the evaluation of other children that are not as high functioning. And that the idea is to learn what can be done to help other children that need more help. And he liked that. I told him that today the ratio is 1in 50. That blew his mind. He told met that he had read somewhere that there are studies trying to find the cause. Then I mentioned that I am working with other parents of small kids with autism trying to guide them and help by sharing what I had done with him when he was little.  That shocked him and he said "that is so great of you mom". 

Then I asked him about how he feels. I reminded him of how he felt when I had first told him of his diagnosis and he said that he felt pretty good these days.  I asked him if he felt he needed to talk to a therapist and he said no.  I asked him if he knew of other kids with autism at school or outside and he said that he knew a few that were in the autism class, but no one in his class besides him. Then I asked him if he had to anyone, like Vanessa, and he said "not Vanessa.  I forgot, but I told my class". I asked him how that had happened and he told me that everyone was talking about something personal and his friend Christopher talked about his brother who had autism. I asked him what about it and he said that Christopher was annoyed with his brother because he behaved like an 8-year old. So I asked how old the brother was and he said 14. So I asked him why he told everyone about his autism and he said that his teacher was explaining about autism and he raised his hand...  He told me that he explained to them what I had told him, that it was like a crack on the road. And that he just needs to make a road around it. I can't believe he remembered !!!  He also told them that Albert Einstein had autism. He relates so much to that. I told him what his neurofeedback Dr had said to me when she did his fist brain map that his brain looked just like Albert Einstein's, and he was sooo thrilled!  He told me that at first he was worried and scared to tell his class, but he was fine afterwards. I asked if his friends treated him differently and he said no.  I asked if anyone bullied him and he said no.  I asked him how people and other teachers treated him and he said that they treated him really well, especially the teachers. So I told him that if anyone ever bullies him, he has to tell us. I don't want him to do anything crazy because he is very sensitive. 

Monday, November 4, 2013

Not in Denial Anymore!

It has been exactly 1 year since my last post.  Live is so busy.  I think of writing every day and by the time I remember, it is time for bed.  But lots has happened since last November.

Jonathan is now in 6th grade.  He is doing quite well.  His areas of difficulties continue to be language arts (particularly reading comprehension).  But nonetheless, he is enjoying school.

We went back to Children's Hospital to have him re-evaluated.  I was so sure that they would remove the autism label and put ADD in its place, but to my surprise, not only did that leave the autism diagnosis and add ADHD, but they also added anxiety disorder and higher language pragmatic disorder.  In a way, I prefer it that way so we can better focus on the therapies he needs to continue to thrive.

I told Jonathan a year and a half ago that he has autism.  He was in denial for a long time. When we got the report from Children's, he and I read it together and talked about the therapies that he needs to do to continue to overcome some of the behaviors he still has.  And he has been very open minded and receptive.

Hi attitude has changed since we told him about his diagnosis and even more after he read the reports. Although he was in denial at first and sad, we talked so much and reinforced the family support that he slowly seem to have overcome his fears.  He is happier and more in control. He is also making lots of friends.  To his advantage, all the kids nowadays (neurotypical and on "a" spectrum) love to play video games and he is very good at it.  He is also more in control of his emotions and cries less than ever.  He is able to regulate his emotions and takes himself out of uncomfortable situations without a meltdown.  He is truly in control.  He still says things that are strange and out of context at times, but for the most part, he is in a great place.

When I first told him about his diagnosis, he begged me not to tell his friends or sister.  And I kept that promise.  I don't even tell his extracurricular activities instructors.  But today I learned that he has learned to accept his diagnosis and he is no longer hiding.

My husband and I went to the parent-teacher conference today. During the meeting, the teacher told us that Jonathan told the entire class (28 kids) 3 weeks ago that he has autism.  It came out during a group conversation where some kids were wondering about other kids' behaviors from other classes and the teacher explained about autism.  When the kids started asking about symptoms and behaviors and the teacher explained that it is a spectrum where some kids can hardly show any autistic behaviors and others were more severe, Jonathan raised his hand and told the class that he has autism. Everyone embraced the comment and told him that they would have never known and they asked him questions about how he feels and how autism affects him.  When the teacher told us the story today, I wanted to cry so badly. I had a mixed of emotions from being very sad that he had to go through that to feeling happy that he is in a happy place.  And when we came home I asked him about it and he was very casual and with a smile told me that he was fine and that he is happy.

He has worked so hard during these past years and we have worked hard with him so that this thing called autism does not handicap him too much.  And although I know that he is always going to have some issues, he is in a much better place than we imagined.