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!
Friday, November 2, 2012
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.
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.
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.
Wednesday, September 19, 2012
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.
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.
Thursday, June 28, 2012
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.
Tuesday, April 24, 2012
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?
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?
Friday, January 6, 2012
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...
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...
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