We are beginning to worry that Jonathan's minor regressions are sticking. He seems very absentminded, he is moving a lot again, his OCD has returned, and he seems in his own little world more than normal. I believe it has been 2 weeks since we noticed the regression.
Javier and I are a bit down this week after having the parent-teacher conference with his 1st grade teacher and also seeing that he is regressing. Academically, the teacher said that he is doing really well. He is even a bit more advanced in writing and math. She told the OT, ST and special ed teacher that she didn't understand why he has an IEP when he is a very good student and they told her to make sure to tell us because they know how far Jonathan has come these years and they fully credit it to our hard work and dedication. But the area that the teacher is very concerned about is his social skills. He has no friends. He doesn't hang out with anyone. Had not identified himself with any of the little groups already formed. He is a loner. During recess he is always by himself. His social interaction is so isolated, or better yet non-existent, that the Special Ed teacher and the 1st grade teacher suggested that a short-term and long-term goal are added to his IEP asap. In addition, they suggested the he starts participating in a social program that the school psychologist has. They are going to speak to the psychologist and let us know when he can start.
In kindergarten, he seemed to have more friends than now. But even though it hurts me dearly, it is no surprise. I have been trying to tell everyone at school that he has a social problem and they removed the goal from his IEP while he was still at kindergarten. But his 1st grade teacher spoke to the Special Ed teacher because she has seen hundreds of 1st graders and Jonathan's lack of friends and social involvement in the classroom worries her. She also witnessed a situation that raised a red flag in her head immediately. There was a child this past Tuesday in recess that fought with another child and was by himself. The teacher noticed that Jonathan was alone in a corner walking around and approached him. She asked Jonathan if he could play with the child because he was a great friend and Jonathan, after seeming like he was thinking about it for a few seconds, turned to his teacher and said "my brain is very big". The teacher could not say much and told Jonathan that that was great. She didn't tell us whether Jonathan did play with the kid or not, but I didn't care to hear anymore about it either.
Thursday, October 30, 2008
Sunday, October 26, 2008
Minor Regression / Started Swallowing Pills
It has been a few days since I last posted any observations. He seemed to exhibit some minor expressive language improvements, but nothing very dramatic. Last week, we all got home at home. I had a bad cold and his dad had strep throat. On Saturday 10/18/2008, he seemed to exhibit some signs of a cold. But the next day, all symptoms were gone. He has progressively since last Saturday regressed behaviorally. Not too much to be too disruptive, but enough for my husband and I to notice and worry. But what is bothering me is that he is not responding to his name when we talk to him unless we get in his face.
Yesterday he had 2 slides of pizza and his eyes simply looked totally drugged. That is so scary to me because I thought he was over with his insensitivity to gluten, but he is not. In fact, there is something really wrong with his gut. His stools are a mess, the diflucan is not helping and now gluten is affecting him again. Also, the past week he has been overly obsessive about watching a movie (Madagascar) like in the old days. 3 or 4 times a day and melts down if we say no. That to me is strep. He has viruses and bacteria in his body again.
On a positive note, this week he started swallowing pills. I was so worried for years to have him do it (lots of kids start as early as 4 years, but I was not ready to teach him), but lately he could not take the mesh that we make every day with all his pills (we open them into prune baby food). His taste is getting better and with that comes rejecting really nasty stuff. Today he swallowed all but the Vit. C which is very very big. That one we opened into the baby food.
Yesterday he had 2 slides of pizza and his eyes simply looked totally drugged. That is so scary to me because I thought he was over with his insensitivity to gluten, but he is not. In fact, there is something really wrong with his gut. His stools are a mess, the diflucan is not helping and now gluten is affecting him again. Also, the past week he has been overly obsessive about watching a movie (Madagascar) like in the old days. 3 or 4 times a day and melts down if we say no. That to me is strep. He has viruses and bacteria in his body again.
On a positive note, this week he started swallowing pills. I was so worried for years to have him do it (lots of kids start as early as 4 years, but I was not ready to teach him), but lately he could not take the mesh that we make every day with all his pills (we open them into prune baby food). His taste is getting better and with that comes rejecting really nasty stuff. Today he swallowed all but the Vit. C which is very very big. That one we opened into the baby food.
Tuesday, October 14, 2008
Very Active Weekend
This weekend we decided to take the kids to an amusement park with several friends since it was a beautiful weekend. There were 15 of us (8 kids, 7 adults). Jonathan was very excited. He loves this park. When we met the other folks, Jonathan immediately joined the other 3 boys in play. They got on most of the rides together. We later broke into separate groups because some wanted to do rides that Jonathan doesn’t like. We went on a 3D ride. Later that evening, we went to a restaurant to have dinner, and Jonathan was playing with his Dad’s iPhone, when one of the boys took it and started playing. Jonathan did not say anything and just watched him. Another other boy came and started talking with the boy that took the iPhone and pushed Jonathan to the side and told him that they didn’t want him to play with them. Jonathan was heartbroken. He cried and I took him to the bathroom when he told me what happened. He asked me “why mommy, why don’t they want to play with me?” I told him that I thought it was probably a mistake, but it wasn’t. These are the types of problems that Jonathan is going to face now. Since he doesn’t quite know the unwritten rules of society yet, he gets pushed to the side. The other 2 boys have ADD and are having trouble at school with their academics and memory. I was talking to their moms before that happened. They are so worried about how to get them to pay attention, learn and complete their work. I, on the other hand, have no trouble with academics or memory. Jonathan is advanced in those areas. But he evidently still has social problems that will become more prominent in the future. The other 2 boys are very social. Funny how these things work.
On Sunday I took the kids to the museum. Jonathan started to show lots of interest a couple of weeks ago to things that he never cared about before. So my new therapeutic strategy is to expose him to as many experiences as possible. Less TV and video games during free time and more nature and other activities. He was very excited in the museum. We went to the insects exhibit and he loved having insects in his hand. We entered a room full of butterflies and that was great. He was so gentle yet started matching all the live ones to a cheat sheet they gave us. He was amazed to see one eat. We saw dinosaurs, and whales. We went into a store (Vanessa wanted to buy a stuffed whale) and he bought a necklace with a blue whales . He sleeps with it he loves it so much. He prefers live animals to museum skeletons. I am going to make a schedule of activities that will include going to see live animals (zoo, aquarium, horseback riding, etc.)
Since Monday was a holiday, I took the day off and took the kids to a park that is by a river and has lots of rock to climb. We made a barbecue and Jonathan was very curious. First he reacted like the teachers are teaching him at school “mom, fire, smoke. You have to dock if you see smoke”. And he did. I told him that it was a BBQ and that was the way to start it and it was not going to get to anyone. So he relax and watched his grandfather set the BBQ with charcoal and a match. Then he watch me put the full on the grill and was curious how the food was going to cook if the fire was gone. And I showed him that the charcoal was very hot and that is how the food cooks. He later played ball with Vanessa, and collected leaves that fell off the trees. Then they played climbing on the rocks. It was a fun day and full of new experiences.
This morning, he woke up and thought that he had his field trip to the pumpkin patch. I couldn’t find the note, but he remembered that something was due on the 14th and that he had to wear long pants and long sleeves. So he changed back and when I found the note, I learned that what was due today was the authorization note with the payment. So he is remembering things. So he changed back to shorts.
I changed his probiotics on Friday to Klaire Labs Detox formula. I was giving him VSL#3. That is the only change and on Sunday his stools were finally firm. He has had very soft stools for the past 4 to 5 months. It could have been the very strong VSL#3 formula. I’ll keep monitoring.
On Sunday I took the kids to the museum. Jonathan started to show lots of interest a couple of weeks ago to things that he never cared about before. So my new therapeutic strategy is to expose him to as many experiences as possible. Less TV and video games during free time and more nature and other activities. He was very excited in the museum. We went to the insects exhibit and he loved having insects in his hand. We entered a room full of butterflies and that was great. He was so gentle yet started matching all the live ones to a cheat sheet they gave us. He was amazed to see one eat. We saw dinosaurs, and whales. We went into a store (Vanessa wanted to buy a stuffed whale) and he bought a necklace with a blue whales . He sleeps with it he loves it so much. He prefers live animals to museum skeletons. I am going to make a schedule of activities that will include going to see live animals (zoo, aquarium, horseback riding, etc.)
Since Monday was a holiday, I took the day off and took the kids to a park that is by a river and has lots of rock to climb. We made a barbecue and Jonathan was very curious. First he reacted like the teachers are teaching him at school “mom, fire, smoke. You have to dock if you see smoke”. And he did. I told him that it was a BBQ and that was the way to start it and it was not going to get to anyone. So he relax and watched his grandfather set the BBQ with charcoal and a match. Then he watch me put the full on the grill and was curious how the food was going to cook if the fire was gone. And I showed him that the charcoal was very hot and that is how the food cooks. He later played ball with Vanessa, and collected leaves that fell off the trees. Then they played climbing on the rocks. It was a fun day and full of new experiences.
This morning, he woke up and thought that he had his field trip to the pumpkin patch. I couldn’t find the note, but he remembered that something was due on the 14th and that he had to wear long pants and long sleeves. So he changed back and when I found the note, I learned that what was due today was the authorization note with the payment. So he is remembering things. So he changed back to shorts.
I changed his probiotics on Friday to Klaire Labs Detox formula. I was giving him VSL#3. That is the only change and on Sunday his stools were finally firm. He has had very soft stools for the past 4 to 5 months. It could have been the very strong VSL#3 formula. I’ll keep monitoring.
Tuesday, October 7, 2008
(HBOT 160) - First Fight at School
Today was the last day of HBOT. We completed 160 hours. Amazing. I need a break. Over two months of getting home at 9pm was getting old. He did well during all the dives. I noticed some subtle improvements, but I expect some more a few weeks after the sessions are over.
Today he had his first fight with another kid at school. It wasn't his fault and the teacher was extremely apologetic. But it was a new experience. He decided to join a couple of classmates during recess for play. The game was about super heros and one of the kids told Jonathan to be the bad guy. Jonathan refused and the kid got mad at him and hit him in the mouth with his head. Jonathan was taken to the school clinic and treated while the other kid was taken to the principal's office and his mom was called in. School called me too to let me know that he was in the clinic but I didn't get any more details. Jonathan was upset about it when he got home. During the HBOT he told me what happened and I told him that it was probably an accident and he said "no mommy, it was not an accident, the boy really wanted to hit me". When I got home, I read a note from the teacher and called her at her house. She explained what happened and apologized. I feel bad for Jonathan that this happened, but it is all normal stuff and that made me very happy. Kids fight all the time. Although I don't agree with the boy's tactics, I love the fact that Jonathan went to play, did not agree with the rules and expressed himself. Perhaps next time he will defend himself.
Today he had his first fight with another kid at school. It wasn't his fault and the teacher was extremely apologetic. But it was a new experience. He decided to join a couple of classmates during recess for play. The game was about super heros and one of the kids told Jonathan to be the bad guy. Jonathan refused and the kid got mad at him and hit him in the mouth with his head. Jonathan was taken to the school clinic and treated while the other kid was taken to the principal's office and his mom was called in. School called me too to let me know that he was in the clinic but I didn't get any more details. Jonathan was upset about it when he got home. During the HBOT he told me what happened and I told him that it was probably an accident and he said "no mommy, it was not an accident, the boy really wanted to hit me". When I got home, I read a note from the teacher and called her at her house. She explained what happened and apologized. I feel bad for Jonathan that this happened, but it is all normal stuff and that made me very happy. Kids fight all the time. Although I don't agree with the boy's tactics, I love the fact that Jonathan went to play, did not agree with the rules and expressed himself. Perhaps next time he will defend himself.
Thursday, October 2, 2008
(HBOT 156) - Hungry for More Independence
On Tuesday, when I checked Jonathan's backpack and the "Tuesday folder" (public schools send information home for parents to review in a special folder every Tuesdays) I found October's school lunch schedule and Jonathan was very interested in reading what the cafeteria had to offer every day. He told me which days he wanted to eat at school "like other kids" and what days he wanted me to pack his lunch.
He has been buying lunch on Fridays since he started. And he likes doing what other kids do. But he is a picky eater, so he won't eat quesadillas if that is all they are selling. But he really likes using his own lunch money. He knows his "lunch money" number and feels like the other kids. So he picked more days he wanted to use his own lunch money and order himself.
Same thing applies to snack time. I know that for snack they can get ice cream, so I asked him if he was going to also buy snack, and he said "mommy, on Thursdays they only have orange ice cream. Yikes." He was so cute.
He has been reading a lot this week on his own. Particularly a couple of books that he brought home from his school's library and from his own book collection. He is reading fast lately. But I have been paying attention to his eyesight when he reads and he tends to move his eyesight. The lady that wrote to me a couple of days ago about the vision problem might have hit a good point. What I thought could be dyslexia can actually be a vision problem. I am going to look into that. Thanks Tammy.
Another note for this blog is that he has not had a single bowel movement accident since he started diflucan again. His stools are not yet in the consistency they used to be, but he is able to control his BM. That is a big relief.
He has been buying lunch on Fridays since he started. And he likes doing what other kids do. But he is a picky eater, so he won't eat quesadillas if that is all they are selling. But he really likes using his own lunch money. He knows his "lunch money" number and feels like the other kids. So he picked more days he wanted to use his own lunch money and order himself.
Same thing applies to snack time. I know that for snack they can get ice cream, so I asked him if he was going to also buy snack, and he said "mommy, on Thursdays they only have orange ice cream. Yikes." He was so cute.
He has been reading a lot this week on his own. Particularly a couple of books that he brought home from his school's library and from his own book collection. He is reading fast lately. But I have been paying attention to his eyesight when he reads and he tends to move his eyesight. The lady that wrote to me a couple of days ago about the vision problem might have hit a good point. What I thought could be dyslexia can actually be a vision problem. I am going to look into that. Thanks Tammy.
Another note for this blog is that he has not had a single bowel movement accident since he started diflucan again. His stools are not yet in the consistency they used to be, but he is able to control his BM. That is a big relief.
Subscribe to:
Posts (Atom)