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.

Summary of 2014

There were a lot of changes in 2014.  Jonathan had a great year.  He finished elementary school (in our area, 6^th 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.

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. 

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.

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!

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

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.

Biomedicine:

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.

After the News Things are Better

I can't believe summer is over. I noticed that I have not blogged in 3 months. Where does time go :). Jonathan started 5th grade and he likes it so far. He likes his teacher very much and he is looking forward to this year. Because he did so well on his SOLs, he was accepted in an advanced program that will pull him out twice a week. That will start in October. I don't know much else about that.

The summer went well. I think that knowing that he has a condition that explains his behavior made him give himself a break. No more "mom, there is something weird about me" or "my mind is crazy, I don't know what is happening to me".  All of that stopped. Our obsession for him to participate in social situations and fit in also eased up. So during camps, he enjoyed himself and pulled himself out of situations that bothered him without questioning his decision. He has been good about staying on his dairy free diet. He told me he wants to get rid of Autism and whatever I tell him to do he will do. And he is.

I think the biggest breakthrough for us is that he had a mainstreamed sleepover camp at a university and he and us managed to survive.  It was an IT camp, so he was able to identify himself with some kids, and he boarded with a friend, so he knew one person. He learned new stuff, new games and most importantly he took care of himself without me telling him: he woke up, showered, brushed teeth, fed himself (made poor food choices that made him sick but after discussing it with me, he did great the rest of the week), and overall handled being in a strange place and learned his way around. I was so proud of him.

He also graduated from the second level of the social skills group therapy that he has been doing since February and we start level 3 next week. It is very encouraging.

On the biomedical side, he tested positive on a folate receptor antibody. We started on a milk free diet and high doses of folate. So far I can't say that I see a difference, but we are increasing the dosage slowly. We are only at half the dosage.  Also, his cholesterol is now at 133. He has been taking Sonic Cholesterol from New Beginnings for the past year and eating 2 eggs a day. We started with 1 pill twice a day and we are now at 3 pills twice a day. I did notice cognitive improvements on this therapy. His cholesterol was 101 when we started and I noticed the improvements before we started the high folate dosages. So raising his cholesterol level was definitely a good idea.

As always, he keeps improving.

A New Milestone - Cat is out of the bag

For the past month, actually more than a month but it has been particularly more this past month, Jonathan has been struggling with internal emotions that he could not explain. I have been feeling guilty because he was in a way begging to understand what is going on and we had not had the courage to tell him about his diagnosis. His social skills therapist told me last month that I most tell him, but I have been on denial, hoping that I wouldn't ever have to tell him. Or perhaps when he is old enough to appreciate how far he has come. But today again the conflicts and sadness were too overwhelming and I filled myself with courage and confronted my fears and told him. I started by telling him that I was going to tell him something that would help him understand why he feels the way he does. I then asked him if he remembered the book he read while at SACC that talked about ADD, ADHD, dyslexia and Autism. He said he remembered and that there is no way that he had any of those. My heart sank. I then told him that when he was 2.5 years old, he had been diagnosed with high functioning autism. He said "oh my god, no" and got anxious. I then went on to tell him that the diagnosis was high functioning autism and for all intents and purposes he was fine. He relax a bit. I could not bring myself to tell him that he was pretty severe at 2.5. I then went on to tell him that he had improved a great deal over the years and he now just has some social issues and some obsessions, and that at times his brain might do its own thing so it is better if he knows what is going on so he can learn to control it. Then he said "so what you are telling me is that I that I basically have autism". And I breathed and said "yes". And he started to cry and said "no, I don't want it. I don't want to have autism. No". I found myself composed and told him not to be scared. That his autism was so high functioning that he did not need any help from anyone and if people didn't know better, they would not know. He begged me not to tell anyone "mom, if people at my school knew, they would treat me like a freak and they would put me in the class for autistic kids. I don't want that. I don't want to be in that class". I told him to relax. That there is nothing to be ashamed of. We don't need to tell anyone, but he needs to know. Told him that the school principal and teachers knew and they were so impressed with how well he does in a large group that they will never put him in that classroom. I told him that I would show him his IEP. He relaxed. I then told him that we have been working hard to make sure that he overcomes it and that some kids like my little brother and others have ADD and there is nothing to be ashamed of. His answer to my comment was "mom, the difference is that there is medicine to cure ADD, but there is no medicine to cure autism". That statement caught off guard. I breathed and told him that that was true but what makes kids with autism get better is starting therapies when they are very young. That we started when he was very young and mentioned all the therapies he has done. He was shocked to discover that. I also told him that for him taking his daily supplements is similar to the medicine tht the ADD kids take and makes him better. Just like wearing glasses. It does not cure but makes it better. He was devastated for a good chunk of time. We then arrived to Tae Kwon Do and I told him to go exercise because that would help him get some of the anger and frustration out of his system. Before he went in I told him that I am very proud of him. That I know he will not understand and appreciate how far he has come until he is older, but I wanted him to know that he has overcome autism and whatever is left, daddy and I will continue to fight to make it better. That he needs to learn to love himself and appreciate himself because it is crucial for his own happiness and I will drill it into his head until I know he gets it. He smiled and said ok. He has matured a great deal and I have noticed that he keeps his feelings to himself too much. Perhaps this will open a door for him and us to a higher level of understanding and communication. I love him with all my heart. Today has very hard for me. I had hoped to never have to say those words to him. But he still has issues and is looking for answers. And I hope that this helps him see life differently, brighter. I will help him achieve that. Today we also lost a wonderful family member. It has been a rollercoaster of emotions. Tia Loli, we love you wherever you are. May God bless your soul.

He s realizing he is different...

Jonathan joined public school is September 2011 after being in a wonderful private school for 2 years.  We made the decision to put him back in public school to force him to learn how to adapt to a mainstreamed environment.  Our goal was to give him the tools to be able to socialize with a larger group.  And for the most part, he has been able to do quite well.  He is a straight A student and he enjoys the school. He attended this school in the past during pre-K through 1st grade.  However, he still has trouble fitting in and understanding unspoken (and sometimes spoken) cues.  We put Jonathan in a private social skills therapy that has been helping a bit.  But not as much as we had hoped.

Last week he had a very open and honest conversation with me. He told me that he feels different most of the time. Weird even.  "Why do I walk around the classroom twice to get to the tissue box Mommy?  There is something wrong with me.  I feel that I day-dream too much.  I cannot control it.  I also have too many accidents.  I am very clumsy all the time.  Why?  What is wrong with me."  I spoke with him to reassure him that he was okay.  And in the end, he felt better.  The last thing I want to do is break his confidence towards himself.

Yesterday, he then again brought up that he felt weird several times during the day.  "There is something wrong with me Mommy.  I feel that I am in another place. I feel like I am weird".  It kills me that he is lucid enough to realize these things.  How do I handle this?  I need professional help.  The last thing I want is to break his own confidence.  If I am tell him that he has a small disability, he will focus so much in it that it might be counterproductive.  How to handle this?

Status Update

My new year resolution is to start logging on this blog again, at least weekly if not more often.  I am going through another wave of emotions and this blog has always been a great wait to offloads my feelings. 

In the past few months, Jonathan seemed to have adapted to the new public school reasonably well.  But after paying close attention to his behavior and after meeting with the IEP team, I am second guessing if moving him back to public school was the right decision.  I guess I will never know.  He has no friends.  Not one single one.  And I do not see him being more "street smart" or feeling like he can fit into large groups any better than before.  If anything, I see him more isolated and driven into his world of video games.  He does enjoy the chess club, and the violin classes the most.  He has no problems academically (has As in all his courses except art in which he got a C).  But no one has invited him to a birthday party or for a playdate.  He has not talked about anyone and has no desire to have playdates with anyone in particular.  In his old school, he loved having playdates and he was always invited to parties.  As a matter of fact, his old friends still call him.  His playdates are with his old school's friends.  Mmmm.  Food for thought.

When I asked him if he wanted to change back, he told me that not now because he did not want to lose his friends again.  And even cried.  So I am confused. He has no friends, but does not want to lose his friends.  I need help.

I approached a mom from the previous school that I know, and asked her about the social skills group that she is taking her son to, and it sounded like a great idea.  I contacted them and I am waiting for an intake appointment.  She mentioned that I should have a private session with them to see if they can find out if Jonathan should go back to the previous private school, which was like a home for us, of stay in this one.  I will follow her advise.

On a different note, I spoke with Jonathan's new DAN! Dr. 2 weeks ago and he told me that his lab reports show that he no longer has a "mitochondrial" dysfunction.  This is huge.  In 7 years, his blood work had never been so good.  So that means something.  I don't know why the social piece is still so problematic, but I am happy with the new combination of biomedical interventions that this Dr. put him on.

More to come...

Back to Public School

For the past 2 years, Jonathan attended a wonderful private school that focused primarily in small classrooms (student to teacher ratio) and lots of movement.  He did very well there.  He overcame many of his behavioral problems.  This year we decided to put him back in public school because an area where we believe he still need to improve on is in his social skills and street smartness.  And the best way to learn is to be exposed to it.  Since he has no major sensory problems anymore (he at times can get annoyed, but he regulates very well and ignores the person/people annoying him), and since he does well academically, we took a leap of faith and put him back in public school. So far, he is doing really well.  He has an IEP to help him work on improving his social skills.  The special ed teacher focuses on helping him fit in with other kids during recess and lunch.  But he is rather happy right now.  He attended this public school for pre-school (the autism program), kindergarden and 1st grade.  So he was already familiar with the facility and remembered a few kids.  He is not overwhelmed.  He actually is in the before and after care and loves to go to school.  He got sick 2 weeks ago and missed 4 days of school and was very upset about that. So far he is getting only As and Bs in all his quizzes.  He is due to have his IEP redone by the middle of November as the school decided to do a full re-evaluation to figure out what exactly he needs help with.

Bronchitis

Jonathan got bronchitis this year.  Based on the Dr's chart, he had not been sick since November 2009. He had 103+ fever for 5 days in a row.  He started feeling sick on October 2nd, and the Dr. did not give him antibiotics until October 7.  Poor kid had fever an a horrible cough for 5 days.  He is much better now.

NIH believes he is not on the Spectrum

Got a call on August 31st from the National Institute of Health (NIH). I enrolled Jonathan on an Autism research study and he had a 4-hr evaluation last week. The Dr. that conducted the evaluation told me today that Jonathan does not qualify for their autism research study because he does not meet the Autism criteria based on the "Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)". Although he shows some challenges in the executive functioning and general day-to-day skills and has narrow interests (mainly video games and electronics), he is otherwise an average kid. He also told me that his verbal IQ went from 80 in 2008 to 97 as of last week. The normal range is 90 to 110. We were aiming to get him to 100 by the time he started college. So this is a huge milestone for us. He recommended a re-evaluation so we better focus on his current needs because as he grows up, things might get more challenging for him. I am going to schedule an evaluation with Children's Hospital tomorrow. If they drop the formal diagnosis on his chart, we will open the Johnny Walker Blue Label bottle. Until then, we will just celebrate that we are getting closer to that day. I want to thank all our friends and family for sticking around and being so supportive. The past 7 years have been very challenging and we would have never made it without your support. WAY TO GO JONATHAN!!!

Guitar Lessons and Some Regressions

Jonathan and Vanessa started Guitar Lesson last Friday. Their Grandaunt and Greatuncle gave them guitars for their birthdays and we signed them up.  The class was a bit boring at first, but it picked up.  Jonathan did well during their first lesson in class (and of course they have to practice at home).  They also want piano lessons.  They will come later in the summer.

Behavioral Regression Observed:

This weekend Jonathan was very defiant.  He got up early to play video games and with this new Apple program (he is teaching himself how to program in Apple computer language), but at 10:30 when I told him to come bicycle ride with Vanessa and me, he complained. He rode his bike for less than 10 minutes and complaint of being tired. When we got him, I asked him to do some exercises with and complained.  We went to the Farmers' Market, and he complained. He complained all day today.  I have not given him yucca in a week (ran out).  I am wondering if it is the ammonia talking.  I'll go to Whole Food tomorrow to pick some up.

School Year is Over - Recap!

School ended today.  Jonathan finished 3rd grade with an excellent report card.  It was a great year overall for Jonathan.  Here is a recap:

• School Year 2010-2011 (great): School started very bumpy last September 2010. He had a new teacher and new friends.  There were 8 kids in his class with 2 teachers, but they were all too hyper and got on each other's nerves. So the school principal decided to break their class into 2 classes of 4 kids each. And that made a huge improvement. The kids did not have time to interact and fight with each other as they were always busy with school activities.  During the recess and open gym activities, they were teamed up with kids from other classrooms so they would exercise their social skills.  He had behavioral problems in December.  The school principal brought it to our attention in January.  He was not socializing, always grumpy and eating lunch alone either in a corner or in the Principal's office. This behavior was not letting him socialize and even learn.  He also had issues with his new carpool ride.  Always arrived at school very grumpy and unable to focus on his duties.  So we changed the morning carpool and he went to school by himself and a few minutes earlier to give him an opportunity to warm up.  That made a huge improvement and he did much better in all classes. I also decided to put him back on supplements.  This truly showed that he needs supplements to maintain his high functioning behavior.
• New Nutritionist (not good): Last year, in an attempt to find the next missing link, I turned into "food and nutrition" as being the missing link and reached out to a new nutritionist.  She checked his hair and told me that he had very elevated copper and that is why he was walking in circles.  Gave me a new set of supplements and foods to give Jonathan and told me to take him off chelation and Yasko supplements.  She told me that Yasko had the right idea but she uses too many synthetic supplements which is not good for the body in the long run.  I removed everything in October, but in December we noticed negative behaviors/regressions.  He was always in a bad mood.  Always fighting with us and Vanessa.  I did not know how he was behaving at school until January.  When the Principal told me, we added his Yasko and DAN! supplements back and within 2 weeks, he was back to "normal" (whatever normal means to us - he was happy, engaging and participating).  I did notice a change in his behaviour.  He was not walking crazy in circles that much. So this Dr. must have been right about the copper. So I kept all the apple sauces and juices out even thought I reintroduced the supplements.

This has been a great year for Jonathan.  I sometimes even forget that he has a disability. I talk to him like I speak to his sister. I argue or have a profound conversations with him.  In a way it is incredible how far along we have come.  I still remember the day I wished he could just say the words "I love you mommy" and meant them.  I remember when his DAN! Dr. told me that the major milestone was when he asked the "how" questions. We now discuss how the universe was created and play chess.  Amazing!

Improvements this year:

• Self-hygine: Jonathan now showers by himself.  SUCH AN ACHIEVEMENT!.  It started about 2 months ago - right around his birthday. I was joking with him about him being 9 years old. One day, he told me, "I am 9, so I am going to take a shower by myself and don't need your help". I was shocked. He told me 2 days later that he wanted a shampoo and body soap all in one because he was too confused with too many bottles.  However, this is outstanding.  He has been brushing his teeth by himself for a while already.  Also, since his 9th birthday in March, I have not had to clean his behind when he want to the bathroom (number 2). Again, using the 9-year old concept made this breakthrough.
• Language: his language and tone have really improved this year.  I don't even make an effort anymore to speak to him. He hears me even if I am far away.  I mix both Spanish and English and I add complex content to the conversation and he is able to follow me. He needs more vocabulary, but overall, his ability to both understand and respond has improved tremendously this past 8 months.

Areas were we still need to work on:

• Social Behavior: he still has to improve greatly in this area. He has very narrow interests making socialization very difficult for him.  The older he gets, the harder it is.  He is a geek and needs to be with geeks. I get that now.  But in life, he needs to be able to adapt. This is a trouble area for us.
• Expressive Language: he has improved 200% in this area since last year.  But he still needs to improve more.  As of 2009, his verbal IQ was 89. I have not tested him but my goal is to make his verbal IQ reach 105 by the time he enters college.  He is scheduled to be re-evaluated by Children's Hospital in September. When he speaks, he stutters and he sometimes sounds strange (tone not appropriate, some words he does not pronounce correctly, and sometimes he uses facial expressions that are strange - he turns his head one side and his eyes another)
• Humming: he still does this and we keep reminding him.  I know it is a way for him to self-regulate. I just wished I knew what else he needs help that requires him to self-regulate.
• Hypotonia (low muscle tone): he still has trouble (1) tying his shoes; (2) buttoning his pants; (3) balancing when he puts his underwear or shorts or pants on; (4) does not run
• Eating with his mouth open: this drives us CRAZY. He is just not able to remember to chew with his mouth shut.  We tell him at least 10 time a day (and we are not with him during the weekdays).  He know, but somehow his brain is not able to register long term.  He is able do to it when we tell him, but 2 minutes later, he forgot. Very annoying.

Team Wins! Jonathan Influenced

Jonathan's baseball team won the regional championship this season.  What an achievement!.  When Jonathan started, all Javier and I could think of was "Will he fit in?  Will the coach tell us that he cannot play?  Will he learn?"  We did not tell the coach that Jonathan was autism.  We were scared every time we went to see him practice.  He sometimes was absentminded.  He ran without energy most of the time and played with the clay instead of paying attention.  It drove me crazy.  Until the day the coach started screaming at other kids for being absentminded and not paying attention and sent an email to all the parents telling us to feed the kids before practice and games.  Then I realized that it wasn't just Jonathan. He was behaving just like the other kids.  Only 4 out of the 12 kids really were into the game.  However, the coach they had this year was outstanding and was able to keep the kids in check.  Out of 12 games, they lost 1 and tied 1.  They were the best in every level!

Jonathan earned 3 game balls this season.  The coach told us that he was the kid that improved the most (he had never played so we were and still are very proud).

The last baseball game of the season

We were so stressed.  Jonathan's team was losing 5 to 2.  We all thought that it was the end.  Jonathan had a fight with one of the kids in the bullpen because he told the kid that they were losing and the kid screamed at him that they were not.  That he had to be positive and the game is not over until it is over.  Jonathan was shocked by that reaction and cried. But composed himself.

They were in the bottom of the 5th and last inning.  Jonathan was the first to bat.  We all thought that Jonathan was going to get punched out.  The pitcher kid made 2 strikes and for sure the next one was going to punch him out.  But something happened and Jonathan hit the ball that the kid pitched at him.  It was good enough to let him run to first base. He ran as fast as he could and celebrated and jumped up and down feeling extremely proud of what he had just done.  He set the tone for the rest of the team.  He was the last one in the batting line, so the next ones were all the best players.  Jonathan stole the second base and when the next kid batted, he ran to third.  He ran to home when the following kid hit the next ball.  He scored and the smile on his face was priceless!!  His team won 6 to 5 in the bottom of the 5th inning.  THE GAME IS NOT OVER UNTIL IT IS OVER!!!

New Dr. and Test Results!

Jonathan has had the same DAN! Dr. since 2004. We love him and he was been great.  In an attempt to learn what other biomedical therapies I can use to treat Jonathan's condition, I started investigating visiting other DAN! Drs.  I wanted a different opinion.  Sometimes it is hard to see what we have in front of us.  I reached out to a couple that I found either too hard to visit or extremely expensive. 

One of the things that has worked for Jonathan is that I never stop searching for alternatives.  I have been fortunate to be surrounded by other parents that have done this stuff before me and have great tips. One parents in the area where I live brought one of the Drs. that she sees to give a presentation for the local parents.  Something very impersonal to both help him gain more clients and help us parents learn about new strategies. 

When I came to the presentation, I was very impressed by how this Dr. spoke, and how much he knew.  Not all DAN! Drs know biomedicine like Yasko or this Dr. do. He also has a child with autism, so he empathizes well.  I decided to go see him with Jonathan on March 25th.  He saw Jonathan and all his test (a huge binder I have with all the tests I have done since 2004) and looked and me and said "you know he looks like a 1 million dollar child". I told him yes.  Then he looked at me and said "but I bet you want a 2 million dollar one" and I said yes.  He congratulated me for all the work and for how well he was.  He ordered a number of tests and sent me home.

On May 27 we had a follow up meeting over the phone to discuss his test results. The biggest issues he saw were:

• His cholesterol was too low (123). He told me to give him Sonic Cholesterol (2 pills twice a day) and test him in 90 days.
• His zinc was too low, but his copper looked find. Just continue to give him zinc but try to do it away from any other metals or foods
• His mitochondrial was a bit slow.  Told me to give him L-carnitine and L-carnosine twice a day.
• His oxydative stress is a bit high. Told me to treat it with antioxidants (Vit E and Vit C plus everything else I am giving him and test again in 90 days)
• Prescribed Oxitocin since socialization was one of my major concerns.  1 pill twice a day, and
• He still has MERCURY.  Jeez, that darn thing won't go away after 6 years of chelation.  He is not treating this yet. 

Baseball, Here I Come

Today was a very special day.  Jonathan earned his first game ball ever for doing a very special play in the game.  His team was pitching.  They had 2 outs and he was guarding second base.  I wasn't there, but his daddy described the play.  The other team was a the bat, the kid hit a ball and it went right towards Jonathan.  Earlier today we asked him to focus during the game because he noticed that the other 2 games we gets a bit distracted, and boy did he focus.  He immediately reacted, caught the ball and threw it to first base with enough accuracy to make sure the kid on the first base could catch it.  The kid on first base caught the ball right on time for the 3rd out.  Everyone started cheering (including the coach) for a job well done. Jonathan was so proud of himself.  At the end of the game, the coach game him the second game ball of the day for a job well done. He said "all plays are good, but some are very important.  Today's second ball goes to Jonathan for doing a great job catching the ball and throwing it to first base for the 3rd out".  I had tears in my eyes. 

The coach later wrote to us: "Folks, 3-0 is a nice start. The team we beat today is a good team. The players should be proud of our early season start. Sitting in first place is a nice feeling."  Daddy wrote back to the coach thanking him for recognizing Jonathan's play today, and he wrote to us: "Jonathan deserved the game ball. That was a very nice play he made under a lot of pressure. We will get the hitting going. I am very happy to have Jonathan on the team and enjoy working with him every practice and game."

No words to express my happiness today!

Back on Biomeds

I stopped giving Jonathan his supplements the first week of December.  I had decided to change Drs. last year and took him to a new nutritionist thinking that one of the missing links was related to nutrition.  I am thankful because I learned that he has elevated copper in his hair which explains his walking in circle and lack of attention without being hyper (he does not have ADD per the ADD test), but he cannot stay still and the nutritionist explained that that was related to high copper and that the only way to bring it down is to supplement with zinc and remove fructose from his diet.  I started him on a grate zinc supplement and removed all fructose, but he continues to walk in circles.  So there is more to it than what this nutritionist told me.  In addition, the nutritionist told me that I needed to take away most supplements because they are synthetic and the body needs natural supplements from foods and not from pills.  It sounds great, but it is very hard to do in practice. She wanted me to put Jonathan on fermented cod liver oil (which I did for 4 months, but he was suffering too much), green grasses (which was impossible to get him to drink), probiotics, zinc and calcium.  She took him off everything else and gave me a list of foods to feed him.  I don't have time to cook, so this added stress to my already stressful life.  I started this new regime in October of 2010, and by December I as burned out. It wasn't working and I was frustrated that I didn't have a good Dr. to help me with the missing link.  So I threw the towel and stopped everything.

Unfortunately, removing the recommended Yasko supplements was not the best thing for Jonathan.  It affected him negatively. He started to behave badly at home, at school, he started to get very frustrated all the time, lost his temper very easily, could not play with other kids well, could not relate unless the conversation was around video games, was very aloof, etc.  Unfortunately, I was unaware of how severe the situation was at school until February 3rd.  When I met with his teacher and school director to discuss his progress, they explain how bad his behavior was since the middle of December.

That was the push I need to get back to biomed. I started him back on some supplements on February 4th, particularly probiotics and yucca root to calm down his yeast and ammonia.  2 weeks later, he seems soooo much better.  He is getting to school a few minutes early so he can jump for a few minutes before class and that has also helped tremendously.  The director told me that he has made great improvement.  We still need to work on more, but he is improved in just 2 weeks, so that is encouraging.  I decided to change Drs, and found a great one. I am hoping to get an appointment in March. I need to get back to the DAN!/Yasko biomedical world.  Out of everything I have tried, this is the best approach for Jonathan.

We enrolled him this year for the first time in Baseball League team and we were terrified that with this change in his behavior he was not going to do well, but thankfully he embraced it well.  We are terrified, but we want him to start having more "neurotypical" activities.  He had his tryouts this week and did well for his first time.  He could not catch the ball, but he hit it pretty the ball.  I am sooo proud of him.

We also noticed that his obsessions with video games and the computer were too much and decided that as part of this change (reintroducing biomeds) we would take them completely away to try to detox him.  His brain would not stop thinking/dreaming about the video games.  It was too much.  Nothing else in the world mattered or could make him happy.  Whenever we asked him to take a break, he would count the minutes to start again.  It was getting insane.  We hid away all video game devices and the computer this week and we told him that he needs to earn stickers to play video games during the weekend (10 minutes per sticker). At the beginning of the week it was traumatic. But today he was great.  He counted how many stickers he has and decided he is going to play on Sunday (not on Saturday) so not to waste his precious 17 stickers.  He has been writing on his journal, he has been reading his Wimpy Kid book (he is on the 5th one), he is doing a Ninjago Lego all by himself, he has been playing pretend with Vanessa, etc.  He doesn't seem to be as obsessed with Mario Brothers stories as he used to be.  Don't get me wrong, I am sure he is still thinking about his games, but his expression is more relaxed.  He is working hard to get stickers and he is starting to value them.  I told him that he could chose between the Wii, the DSi, the iPod Touch and the computer and he could use the time of his stickers for one or all of them as long as he didn't go over the time (which we will monitor closely) and he was very calm and rational and said that this weekend he will use them all with the Wii.  Baby steps until he is able to just play for a while without making video games the center of his world.  I was starting to get really concerned that he was missing out on a lot of things by not being able to focus on anything other than those darn video games.  They are like a drug.