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.

Friday, November 2, 2012

5th Grade Parent-Teacher Conference

We met with Jonathan's teacher today. This is her first year teaching alone (she used to assist before) so there were a few things that we believed were missing, particularly the fact that the Special Ed teacher was not present.  She mentioned that Jonathan was doing very well.  He is getting 3s and 4s so far in the first quarter, which is great.  But we were concerned because we have noticed Jonathan very stressed over homework and school work the past few days; and when we brought it up and she explained the room dynamics, we realized that Jonathan may need additional support throughout the day. 

He has been bringing a lot of homework, and when we asked the teacher today why she said that he does not finish his school work on-time.  The past 3 nights, he has been working until very late hours (11pm) finishing his school work.  It could be because he does not pay attention to the instructions and misses the directions and loses his concentration during school, or because he is slower than the other kids.  In addition, he did not do well in a couple of tests and failed to turn in a couple of homework because he missed the information and due dates she provided.  She confessed that sometimes she just says things once and does not write it for the class and it seems like Jonathan might not be paying enough attention to capture that.  She indicated that some other kids are having the same issues sometimes, but the majority of her class can follow her pace, which indicates that Jonathan needs help here.  The teacher needs to make sure the he gets the directions correctly by either writing it on the board or making him write it or he needs another person around to help him stay focused. It does not happen all the time, so she is going to provide feedback to us with regards to what subjects he is having trouble with.  The issue seems to be related to breaking into stations and working with each other.  When they work independently and he can reach out to the teacher for questions, he seems to do better. So we need to work with both Jonathan and his teacher.  We asked her to post the class content and homework on blackboard so we can help him get prepared for the new class as well as finish the proper homework.  It is very evident that she is not used to working with kids with issues.

She gave us a couple of things that he wrote.  One caught my attention and made me cry.  I have been thinking about him a lot today.  Between the interview at Children's yesterday and the meeting with the teacher today, I realized that we are so distant sometimes from Jonathan and do not understand him well. We are so hard on him sometimes and he is trying soooo hard.  I am so proud of him and I don't know if he realizes that.  He is a great kid and has accomplished so much and we need to do better and give him more credit.  His dreams, we need to help him be the best he can be so he can reach his dreams.  And I realized that I don't even know what they are. I have my dreams for him. But I need to get to know him better.

Greatest Wish for Jonathan

Thought Wish
I thought of a wish 2 years ago that I want to talk about.  My greatest wish is that I want to know how to create new apps for the Apple devices that would make everybody happy.  That is my greatest wish.  I had kept thinking about it since the day I thought of it in 2010.  It hasn't come true yet. I mean not YET.

My Dream about my Greatest Wish
Not many people have dreams for their wishes, but I DO. I had this dream once that I made a very special update to the Apple iOS App Store, iTunes Podcasts iTunes U, and iBooks.  Every time I fixed a problem on an Apple Device, one of my family members would always say, "You could be the next Steve Jobs" (CEO President of Apple).  You might have not noticed, but this was my dream and wish forever.  It still is!

Faith in my Greatest Wish
I know this wish will come true, but I have a secret for myself and my wish.  If this wish does come true (my parents also believe), I could run for Apple CEO President like Tim Cook and Steve Jobs.  If I am, I could be the first Apple CEO President with High-Functioning Autism.  I have faith in my dream.

Thank you
Thank you for reading.  If you have this same wish, I hope it comes true to you too.  See you on the next class journal! Peace out!

Sunday, October 14, 2012

First Pumpkin

Today is the first time that Jonathan ever picked his own pumpkin and carved it himself.  I helped him a bit, and he really hated getting the pulp out, but he did it.  Great milestone.  Every year I tried, but he never seemed interested.  We went to our friends' house yesterday and their kids were carving a pumpkin and Jonathan got excited about it. So I decided to explore that today and was happily surprised.  It was a fun afternoon.  Everything he did and I captured in pictures were completely spontaneous behaviors. 

 His sister hates it when he does the bunny ears :)  She didn't even know.

 Hated taking the pulp out, but eventually he did.

 He enjoyed carving the pumpkin

 He carved 2 ghosts.  Booooo

Great pumpkins

Monday, October 8, 2012

5th Grade is Hard

Jonathan started 5th grade this year.  Since he did so well in his SOLs last year, he was enrolled into an advanced part-time program. He is getting more homework than he did last year and he is also expected to do more complex projects.  He is doing well but anxiety is starting to build.

Last week, he had quarter tests and he came home very upset one day because he is having difficulties concentrating.  He actually started the conversation after I started asking him about 5th grade.  He was not very forthcoming at first, but as I asked, he volunteered more information.  He then told me that because someone told him that 5th grade is so important, he is taking his time to finish his tests and he doesn't finish on-time.  The teacher either gives him extra time at the end of the test time or the next morning.  The problem is that the extra time for him means free time for the rest of the class (28 kids) and the noise is frustrating him.  Together we discussed the different ways to help him: (1) put earplugs - big no no because everyone would make fun of him (his words).  (2) pull him out to a quite room.  He liked this idea and doesn't think the class will make fun of him.  (3) if number 2 doesn't work by December, think about going back to his previous private school.  He is heart broken about that because he misses that school tremendously, but he likes his current school.  So I told him no to worry about it yet, that I would talk to his teacher.  The next day I spoke to the teacher and she had no problems accommodating our request.

2 days after that conversation, Jonathan came back to me and told me he wanted to talk to me in private.  He asked me "why am I the only member of our family with Autism?"  Tough question.  I told him that I didn't know but we have other issues like 2 of his cousins have ADD and I have dyslexia.  Then he told me that he is reading a book about autism at school and he feels very sad because he believes that he does 2/3 of what the book said.  I told him to bring the book home so we could talk more about it, but I didn't believe that to be the case.  I went on to explain in detail that autism is a spectrum and when he was diagnosed he was on one end, and he now is on the other end.  I went back to my glasses analogy and he said "when I grow up, I want to be like contact lenses".  I looked at him puzzled and he said "I know I will need glasses but with contact lenses no one can tell that you have glasses".  That was an incredible analysis for a 10-year old.  I told him that that was my goal too.  He said, "I know there is no cure but I don't want to be different".  Then he started to cry and asked him why he was crying.  He said that he remembered the book again and that the book said that kids with autism are always thinking about the same stuff.  When I asked him what he was always thinking about besides video games, he said "math and the universe".  That gave me an idea and I asked him if he knew Albert Einstein.  He said "of course.  He invented the theory of relativity" and I said "well sweetheart, he had autism".  All of a sudden, that comparison gave him a smile.  He realized that the label does not mean that he cannot have a great life.  He then asked me to tell him about him when he was little and we spoke for about 1 hour. 

Reflecting on this, this is a dream come true.  Not telling him, but having such a profound and intellectual conversation with my son.  I forgot how he was.  But when I remember, I feel butterflies in my throat. 

He wants to know where he is in the spectrum, exactly.  I told him that he is considered "high functioning" but that was not enough for him.  I told him that he is going for a re-evaluation in November and the Dr's will be able to tell him in December where he is.  That made him relax.  He knows in November he can ask all kinds of questions to the therapists and hopefully get some answers beyond what Mommy told him.


He is now taking 5mg of 5-MTHF in the morning and 5mg in the evening.  His DAN! Dr. increased to 7mg twice a day and we will need to do blood work in December.  This is needed because his blood work showed that he has one of the folate antibodies.

Social Skills Therapy:

He started the next level 2 weeks ago.  So far I don't see much improvement, but he just started.  He knows he needs to work on social skills, social cues.  He is struggling because he realizes more frequently that during social interactions with other people he sometimes does not use proper social skills.  Some of the skills are just not in his DNA yet.  I know this is going to be a long-term therapy as it will teach him with exercises and language the appropriate social skills he will need to be part of society.

My fear still lies on long-term relationships.  Right now he does not express enough interest in how his sister is feeling unless it directly affects him.  He has a couple of friends at school, but the friendship is not strong enough to make him call them or have them over.  He has told me he wants play-dates with those kids, but then he doesn't follow through.  How will his friendships and relationships be when he grows up?  Will he be able to sustain a relationship with a girl and even marry?  That is my new goal.  I already achieved the expressive and receptive language.  Off to relationships now.