Thursday, January 17, 2008

2 Days with no PC or Playstation

I am so proud of my little guy. He took it very well when I told him on Tuesday night that he could not play with either the Playstation or the laptop during the week. Only on weekends. And he was very compliant and even told my father on Wednesday that he could not play with electronic toys until Saturday. It was funny because he started playing with the Leapster and told my Dad that the Leapster was not an electronic toy. He does not understand the "electronic toys" category very well. I need to teach him. But I am purposely allowing him to play this week with the Leapster because I didn't want to cut every electronic toy cold turkey. It could have been very frustrating. I will tell him on Sunday that the Leapster is also allowed only on weekends. Since he doesn't play well on his own, he was very bored on Wednesday. And today he played with his music CDs (something he had not done in months). It'll get better.

From what I can tell from his reactions and comments, I believe he is doing better at school. In addition, he got another green card, which he had not gotten in weeks (the positive reinforcement card). I was so excited to see that. It means that it was the right move!

With regards to behavior, I believe it is better. The only thing that changed is that I added 5 mg of vitamin K2 again this week. I ran out a month ago. I am starting to think that it is actually helping him because he is not nearly is hyper and jumpy as we was.

Tuesday, January 15, 2008

Feedback from School

Yesterday I spoke with the new Special Education teacher assigned to Jonathan. The previous one was reassigned to another group. During our conversation, I expressed that I was disappointed in that I had gotten his quarterly IEP report in December with mostly fours "4's" as ratings (out of 5) and yet Jonathan is not in my mind that high. He still has trouble speaking and with social interactions. Among other things. I told her that I wanted to know exactly what the observations were that gave such high points because again I know that he needs more work. And either he is not being challenged or they are not observing enough. Either way, that is not acceptable to me. She is going to get back to me with the previous Special Educator's notes so we can compare and potentially do an amendment to the current IEP.

On a negative note, she did tell me that Jonathan's Kindergarten teacher had told her that Jonathan did not do well in December and the first week in January. Would not do his work, would not pay attention, etc. I am disappointed that I was not notified earlier. We get a daily progress report and it always comes home with a happy face except for the one time that I already documented. So I need to send his teacher an email asking for more specifics.

However, what I decided to do based on that feedback was take away all electronic games from Jonathan from Monday through Friday. I think that he is so obsessed with them, that when he goes to school, all he thinks about is how Crash Bandicoot is going to kill the next monster. I know Jonathan well enough to know that that is what goes on in his head.

So we told him yesterday, and he was very compliant today (except for the Leapster which I did not purposefully remove just yet). He was bored to death since he doesn't play with regular toys. But it prompted him to do other things like call me 3 times to talk, read, etc. We'll see how this goes.

I noticed today when he called me that he has his ideas very clear in his mind, he just cannot express them properly. Verbal apraxia. How frustrating for both him and me.

Saturday, January 12, 2008

Showed Very Good Sense of Time

During the holidays, my brother gave his wife a Nintendo Wii and Jonathan played almost every day while they were at our house. He really liked it. We want to get one for him because he showed great interest in all the sports and this game seems great for eye-body coordination. Also, this game would teach him the rules which could help him later on. And lastly, it is very engaging. But on the negative side, he cannot put it down. Talk about obsession.

Last night we went to visit our friends. They bought their kids a Wii for Christmas. When Jonathan saw it, his eyes got really big. We told him that he could play for a little bit. Jonathan played for an hour and we forced him to take a brake and then he played for another hour. The good thing is that he played with everyone. But the bad part is that during the time he was not playing, he did not play pretend games with the kids because he was anxiously waiting for the time to play again.

He asked us if we could buy one, and we told him that we would get one for his birthday. At first he was very happy. Came running to me to tell me that he was going to get a Wii for his birthday. About an hour later, he came back to me and told me that he didn't want to wait until his birthday (March) because it was too long. I was so excited to hear those words because they showed that he is making good reasoning. He knows we are in January. I told him that we were going to order it soon and tried to tell him not to worry about it.

This morning he woke up and asked me if I had ordered it already. He kept asking all morning until I lost my patience and told him that he had to stop thinking about this game and stop asking about it if he wanted me to buy it for him. This is a lot to ask a child on the spectrum, I know. But I could not take the nagging and whining any longer. He did stop, but he was pretty sad most of the day. I don't want to give in just now because if I do, he will realize that he just has to cry hard enough and nag long enough to get what he wants. That is not good.

Here are a couple of pictures from last night's game. And the video is a short snapshot of last night's game. Jonathan kept winning and C. would get really upset. But I don't know how Jonathan could win (against anyone, including Daddy and Tio L.) because he was not playing correctly. You'll see from his jumping and posture that he was not actually boxing. However, the game interpreted his movements as if he was and he kept winning over and over again.

Jonathan and C. boxing

Jonathan was pitching.

I did not capture the fact that Jonathan kept winning most games in this video. I was laughing so hard at how he played, that that is what I recorded. And also the fact that he engaged very well with everyone and didn't care if he lost.

On a behavioral observation note: he was still hyper today. And his eyes looked strange. At times he looked like he was drugged and he had dark circle around his eyes. We came home very late yesterday and I am thinking he was just tired. So we put him to bed before 9pm today. However, my dad told me that on Friday at his Tae Kwon Do he was very tired and could not run much. I'll call his DAN! on monday to get test kits to check his minerals levels as well as his amino acids.

Thursday, January 10, 2008

Tired of Pasta :)

Today Jonathan was better at school. Jonathan's report showed a green happy face. So that makes me feel better.

He is however incredibly hyper. I don't know what is causing it, but it is driving me crazy. He will not sit or stand still for even a second. I am going to order all the urine kits and the stool kit and try to figure out where the problem is. I am finding myself losing my patience quickly lately. It takes me 15 minutes to give him his supplements because he won't focus. He will not sit still at the table to eat his food. He won't stay still anywhere. Not even to watch a TV program. What could it be?

On a fun/positive side, Jonathan came to me today and asked me not to give him pasta for lunch anymore (gluten free (GF) pasta). That he is tired of pasta. He asked me to find something else for his lunch bag. I found that very exciting. So I asked him what he wanted for lunch and he told me that he wanted yum yum chicken nuggets (GF) cut in pieces with white rice. :)

Besides the hyperactivity, he is again very obsessed with electronic toys (playstation, PC, leapster). He gets home from school at 4pm every day and all he asks for is to play with his playstation. Since I come home 2 hours later, it is virtually impossible for me to correct the behavior.

Wednesday, January 9, 2008

Second Red Mark from School

Jonathan has been a little off this week. I have noticed that when he does not sleep his 9 to 10 hours a day, he has a bad / off day. Well today was again the proof. He went to bed really late last night (sometime after 11pm). My mother was getting ready to leave, Abuita came back from vacation and we were all up and chatting. By the time he went to bed, it was late and he had a really hard time waking up this morning. I could even give him his supplements. He was just that sleepy and I had to leave soon to take my mom to the airport. Daddy stayed, gave Jonathan his supplements and breakfast.

When I got home this evening and checked Jonathan's daily journal, the teacher put a red "unhappy" face for today's behavior and said that Jonathan was off and did not follow his tasks. So I made sure to send him to bed earlier tonight. He went to bed at 8:45pm today. I hope that tomorrow is a better day.

Since his started kindergarten on September 2007, the teacher has only sent 3 notes home regarding his "off" behavior and 2 red "unhappy" faces. Statistically, that is pretty good. But I still felt bad. I need to speak to the new Special Ed teacher (the school reassigned the teachers and we need to meet with Jonathan's new Special Ed teacher). She might be able to give us more insight. I'll also email his teacher.

Monday, January 7, 2008

2007 Was a Great Year...

Happy New Year to all of you out there and in particular those of you who have accompanied me through last year's challenges and triumphs. It feels as if it was ages ago that I had to pull Jonathan from a daycare room of typical peers and pull him in a room of kids 1.5 years younger because he could not deal with the hectic and unpredictable environment of 5-year-olds. He had regressed so much last year this week that his ABA therapist feared that we would lose everything she had accomplished in the prior months. She was preparing him for kindergarten, yet he could not withstand being with kindergarteners. My almost 5 year old could only be with 3-year-old kids as long as they were not too loud. I was very worried for him.

His ABA therapist worked really hard. We made improvements towards his behavior and tolerance with all the biomedical interventions we were doing following Dr. Amy Yasko's protocol, plus all the intense ABA, OT, PT, diet and chelation therapy. We saw some major improvements during his birthday party compared to other years. He blew the candles and was excited about everyone singing happy birthday, but he did not really understand the meaning of getting gifts from people, how old he was. It was all still too abstract for him. So the improvements were not enough.

I met a wonderful lady towards the end of 2006 who taught me great things about all the different alternative therapies out there. The one in particular that I am extremely glad she introduced me to is Hyperbarics Oxygen Therapy (HBOT). I had heard about it during the Spring 2006 DAN! conference, but wasn't too sure what it was about. I was so desperate to find some type of a buster for Jonathan. I researched it after this lady told me how good it had been for her son, and read so many good things about it, that both my husband and I decided to give this a shot. So on March 27, 2007 we had our first "dive" It was hard. Not as hard as our first Tomatis Auditory processing therapy session, but hard. However, we stuck to it. And boy, am I glad we did!

HBOT is tricky because the child actually regresses during sessions. When Vanessa turned 3 (May 10), we hired a lady to come dressed as Disney's Ariel, and Vanessa had the time of her life. We had kids over, and the lady painted their faces and made balloon characters, etc. Jonathan did not want to participate and when the lady tried to approach him, he started screaming like she was going to kill him. All he did was play with my laptop using Microsoft Paint. That was very depressing for me. For a moment I doubted the HBOT. It was so expensive and we were seeing such regressive behaviors that we were at times even disappointed. But again, the best thing we ever did was stick to it.

Jonathan kept making great improvements (I logged every day in this blog). And the biggest we ever saw were 6 weeks after he finished his first 40 dives. Conversational language. That was HUGE. However, I was very worried as we approached the summer that he was not ready for kindergarten. I enrolled him in a summer camp that was extraordinary. But he needed extra attention. I was glad that the play hired volunteers to have a 1-to-1 ratio, because Jonathan needed constant supervision.

So we decided to do a second set of 40 dives. We started dive 41 on August 1, 2007 ( We heard from many people that the second set was not as impressive as the first one, but it was necessary. Again, am I glad we did it! We finished right around when he started Kindergarten and he had an outstanding beginning. Up to this day, his teacher keeps telling me that he does great. Once in a while he tends to lose focus, but for the most part he is very attentive, he does everything he is told, and needs no "shadow" to help me complete his tasks. It is a dream come true.

However, I cannot stop there. Jonathan is not recovered yet. I am the first one to admit that his improvements are quite dramatic. So much, that he has almost mastered all of his IEP goals (Individualized Educational Program – contract between us and the public school system to receive special education services). We are probably going to have to have an IEP meeting earlier than anticipated to redo his goals. He has friends, he plays, and he follows complex directions without problems. He rides the normal school bus (not the special ed transportation) back home. He articulates much better and one can now understand him when he speaks. I speak to him normally and he understands. He is simply another child. But he is not recovered yet.

He has not had another psychological evaluation done yet. I don’t want his diagnosis changed yet because he still has areas that are delayed or not age appropriate. For instance, he is now hyperactive. He cannot stand still at all. He is still delayed with his expressive and even a bit on his receptive language. He still has a bit of low muscle tone (which could be a cause for his hyperactivity); and one of the big ones for me, he is not yet as empathetic as a typical child his age. The good thing is that he has demonstrated that he is capable of being empathetic. But his input threat hold is quite high and misses out on things. So we need to work on that (e.g., caring for a baby when he/she cries; caring for someone when that person is hurt; feeling the pain the other might feel if he does something that that person might find hurtful). So we still have a long way to go.

My next fear: 1st grade.

Jonathan does not yet speak like other 5 3/4-year-old kids and I fear that his classmates in 1st grade are going to give him a hard time. He has turned into a very sensible child. If Vanessa tells him that she doesn't love him, his heart breaks and comes running to me crying. So I don't want him to have a traumatic 1st grade experience. In addition, teachers are less patient. He needs to be able to keep up even more than now.

So we are going to do another session of HBOT hoping that it will be a catalyst again to help me improve on his expressive language (due to his verbal apraxia) and continue to improve in general. We start on January 29, 2008 for 40 days.

I am proud of my baby boy. He has worked so hard. His life has been so hard at such young age. And he has come a lonnnnnnnggggggg way. I hope for a bright future for him and I believe in my heart that he will have it.

I am leaving you with a few pictures from this past week during our family reunions. Jonathan loves to be around people and share and play. He does not get overwhelmed with crowds any more and loves to be the center of the attention (loves to read to people). Oh yes, Jonathan reads like a 7-year-old child.

Jonathan and cousins coloring together (baby was helping Jonathan and he liked it)

Jonathan, Illy and Vanessa riding the elephant. They had a blast!
Jonathan and Daddy playing Tennis with aunt Sarah's Nintendo Wii. Jonathan loved it and played very well. Doing "High Fives" after Jonathan did a good play.
Jonathan was very proud of himself for winning. I captured the words "YOU WIN" on the TV screen.

Jonathan reading to his uncle Hernan.