Monday, April 30, 2007
He finally fell asleep as it was time for me to get up and shower. When I left the house, he was still sleeping. I checked his backpack in the afternoon and had no notes indicating that he was strange or tired. So he must have had a normal day.
Abuita picked him up early and took him to a playground. When he got home, he saw me and came running towards me and screaming "hi mommy". That was nice to see after 4 days of feeling ignored. He immediately asked for his Leapster toy. I tried to ask him how his day went, but he didn't want to answer. I was able to get him to tell me that he didn't eat lunch.
When my brother arrived with his kids, Jonathan did not acknowledge them. When they left about 30 min later, again, Jonathan did not say bye. He kept playing with his Leapster. It ran out of battery and he came to tell me to change them. We didn't have any batteries and in the past he would have had a meltdown. This time, we told him that we would get them tomorrow and he was ok with the answer and told me he wanted to play with with Disney.com on my PC. He seemed more connected today. When he was playing with Disney.com, he was telling what was going on. Later, he told me about a story he read today "the hungry caterpillar" and told me what happened to the caterpillar. He was definitely a bit more social today than in the past few days.
Today he ate very well. He had split peas soup (blended) and chicken with rice. I am hoping he sleeps all night. I need a good night sleep.
Sunday, April 29, 2007
We all got ready, and left to the HBOT. While Jonathan and Daddy were to the chamber, Vanessa, and I went with Abuelito Omar, my brother and his family to the Petting Zoo.
HBOT Day 28
Daddy said that the dive went well. Uneventful. When they finished, they came over to the Petting Zoo. Jonathan did not want to be inside. He wanted to go. We gathered our stuff and went to Fuddrocker's. Jonathan all this time had his Leapster toy and did not want to play with the girls (Vanessa and her cousin Illy). He did not even acknowledge Vanessa.
We left and went home as the rest of my family was due to come for dinner. Jonathan did not want to be near the girls. He just went to the sofa and played. When people arrived, he came over and sat on the kitchen floor and played.
He had a very stinky bowel movement, for what I am thinking that he is having gut issues (perhaps due to the HBOT).
He did not ask to play with Playstation for the past week (odd). He didn't want to play outside with the girls. He spent the entire day playing with his Leapster toy. Sometime got on my PC to play with Disney.com. He reverted to asking for things using short language: "mom, apple juice". I had to correct him. He also did not want to eat anything but waffles (which are loaded with gluten).
We cannot stop the HBOT. We are only 12 dives to go. But he has really regressed socially and I am not sure how to adjust his supplements to help with that.
Saturday, April 28, 2007
HBOT Day 27
Daddy said that the dive went well and uneventful. They came home and I fixed some lunch. He wanted to play with the computer and I let him while I was fixing the house. My brother, his wife and 2 kids came today to stay for a few days.
Jonathan seemed really lots into this cyber space. He didn't want to talk much, play or interact. Just wanted to play with his electronic toys. He has not lost language but simply does not want to participate much.
When my brother arrived, he didn't say hi, he didn't acknowledge them. But when I asked him where the baby was and what she was doing, he told me. So somehow, he can multitask but cannot express it.
Friday, April 27, 2007
Today Jonathan was really in his world. I had to call his name many times for him to react and pay attention. On the way to the HBOT, he did not want to converse. He only spoke to tell me what color the traffic light was.
HBOT Day 26
Inside the chamber, Jonathan had a hard time with his right ear again. But after he popped it, he put on his hood and watched TV ok. The other kid came over to him, and he immediately told him no and tried to move passed me and away from him. So I see 2 areas where he is regressing.
Daddy and Vanessa came over to pick him up as I had another engagement after that. They went to eat pizza and went home. He did not take his pills this night.
Thursday, April 26, 2007
Jonathan has been very interested in a Disney Princess movie (Vanessa's movie). He woke up and immediately asked me to put it on. He likes the silly parts, not the princess sweetness type scenes. He really enjoys the funny parts. I don't think it is self-stimulatory OCD. I think it is a bit of an obsession, but perhaps the one that really young kids have when they want to have the same book read over and over again. A few months ago, he would watch the same movie over and over again, but this time he is actually following the story and tries to use it to create his own pretend stories. Interesting how it all develops.
On the way to the HBOT, Jonathan decided to watch Curious George. He watched the commercials, and there was one with birds. He started to sing the song and kept telling me what was going on as I could not watch it with him. I told him "Papito, why don't you fly?" and he said "because I don't have 2 wings" and I said "but pretend sweetie" and I quickly turned around and he was pretending with his arms. That was really cool. This is very normal for normally developing kids, but a really big deal for the autistic kids. The first part was logical (I don't have 2 wings). That is what high functioning autistic kids normally would answer. But pretending is more abstract thinking. It is very difficult for our kids to do, yet crucial for proper development. So all the pretending he is doing lately is absolutely wonderful.
HBOT Day 25
Today's dive went well. The technician put Shrek 2 on, and Jonathan wanted Dora. But the other kids wanted to watch it, so he accepted it very well. When we reached 1.5 atms, and I put the hood on and turned the air on, he noticed the air flowing in. Today was the third day that he mentioned that he could feel the air coming out of one hole, and thought the other hole was broken. There are 2 tubes. One that blows the oxygen in and one that takes the carbon monoxide out. So I explained that one hole is where the air is pushed into the hood and the other hole sucks the air out and into the box on the wall. He was totally amazed on how that worked. Analyzed it, and asked me a couple of questions. Curiosity. Another thing that we look to bring out in our kids.
As we were watching the movie, I asked him a question. But he was really into the movie. So I touched the top of the hood to ensure that it was tight (that is the way to check if the hood is full of oxygen) and he turned to me and asked "what did you say mommy?" and his voice and tone were soft and spontaneous. I asked him again, but I was a bit amazed that he asked me that question that way. It felt as if he really wanted to know what I was thinking or asking.
When we got home, he wanted to watch that Princess movie again. Then he very eloquently said "mommy, can you give me some grape juice please?" So now I am picking up on the tone and the structure of the sentences rather than the question itself. He has been asking for what he wants for sometime, but it is the tone. It didn't sound robotic.
HBOT is causing a terrible constipation issue. He is having bowel movements, but the stools are hard. So yesterday it seems as he broke a blood vessel and had some blood when I cleaned him and today as well. I checked the stool, and it was clear of blood, so it looks like a problem as it comes out and not inside the colon. I am going to buy Cascara Sagrada tomorrow as Dr. Yasko suggests that when there is constipation. I also ordered other types of probiotics. The Oxygen kills the gut bacteria (except Strep) and that I think is the problem right now.
With HBOT, I have noticed quite a few improvements, especially in the area of awareness, curiosity, abstract thinking, complex pretend ideas, language (both receptive and expressive), energy and some social behavior. However, I see more attention problems, hyperactivity and silliness. I was told that I will see changes 6 to 8 weeks after the end of this batch of 40 dives.
- Curcumin - 1/4 capsule (AM) - This helps with converting sulfur to glutathione instead of Taurine
- L-Carnitine – 1/4 capsule (AM) - Provides energy to the cells (mitochondial support)
Wednesday, April 25, 2007
We was quiet on the way to the HBOT. He was playing with his Leapster toy and paying attention to the traffic lights and telling me when stop, slow down or hurry up and go. I tried to have a conversation with him, and he did well for the first couple of minutes. Then I asked him a more complicated question, and he hesitated, as he could not find the words and then said: "Mommy I don't want to talk anymore". I realized that he had everything in his head, but his apraxia won't let him express it.
HBOT Day 24
Today it was cooler. The technician fixed the A/C unit last night, so the chamber was comfortable. We got in and today Jonathan had a bit of trouble with the compression. His ears bothered him. He must have a bit of fluids due to allergies. I'll call the doctor tomorrow and order a prescription for Zyrtek.
We watched Dora the entire hour. Jonathan was totally into it. He answered all of Dora's questions, and laughed when it was funny. When we finished, he asked me where we were going and I told him that we needed to go to the grocery store to get bananas and then home. I knew he wanted to go to Toys R Us, but he has so many cartridges that I figured he would forget.
Well, he didn't. But instead of screaming at me, he invented a Dora story. He told me that I was Boots, he was Dora, he called the Map to map out the route he wanted. His motor planning was very nice and complex. He told me that we were first going to the grocery store, then toy store and finally home. He used his imagination, and pointed me to this pretend ideas (a bad guy was in the corner of the car, etc.). It was fun to play.
The plan was first grocery store, then toy store and finally home. We went to the grocery store, and he was excited to help me. When we finished, he took out his imaginative Map and put an invisible check mark and told me that toy store was next. We was so excited. When we arrived, he was jumping of excitement. He new exactly what he wanted and where it was. We took it and went to the cash register to pay. There were people in front and he was very patient. He kept walking in circles and it wasn't that he had to go to the bathroom. I believe he still has middle ear balancing problems. He needs to constantly move to find his body in space. We got our turn, paid and went home.
His receptive language has improved greatly in the past two weeks. But his expressive language has really improved. We desperately need a speech therapist. I think we need to work on some pronounciations and tones. And even though he still gets stuck with complex questions, he has improved soooo much in this area. Still not age appropriate, but definitely developing nicely.
One thing that I realized a couple of days ago as I attended a parent's group meeting is that I strongly feel that Jonathan is reacting well to the HBOT because I killed his instestinal strep. Strep feeds with oxygen, and I was scared it was going to increase. But instead, he is waking up!
Tuesday, April 24, 2007
When I dropped him off at daycare, I left a small note in the basket saying: "Jonathan, Vanessa, Daddy and Mommy love you very much". When I picked him up at 4:45pm, the teacher told me that Jonathan did really well this morning in circle time and that he was extremely happy and proud that Mommy left him a message. That was a very nice comment. The ABA therapist also wrote a comment in his book about the same reaction. I will make sure to leave a note everyday. So he can associate that we are always thinking of him.
When I got home with Jonathan, I checked his backpack and read a note from his public school teacher saying that he was assessed today for speech but because he was very hyper and had trouble concentrating, the assessment did not go well. At first, I was sad since he had such a terrific morning and a fantastic day yesterday. But then I thought that it was actually a good thing because I do want the school to provide as much speech therapy during Kindergarten as possible, and this assessment will help me prove it.
HBOT Day 23
Today, when we arrived Jonathan said: "I don't want to go in the truck. I don't like to be inside the submarine". He has been articulating his feelings quite well lately. I told him that we had no choice. We got in to discover that the air conditioning was broken. It was about 90 degrees inside. There were only 2 kids today, so we had more space inside and less human bodies to generate heat. However, Jonathan was sweating like crazy and Gage was very unhappy and crying. You could tell that he was very uncomfortable. Jonathan was totally into the Dora movie. He answered every question that she asked and then turned around and told me what was going on. It was very cute.
When we finished, Daddy and Vanessa were outside waiting for us. I had an autism parents support group meeting tonight and Javier went to pick Jonathan up. Daddy said that the night went well. They stopped on the way home and the kids got spaghetti and meatballs and they all went home to eat it.
Because I did not get home until passed 11pm, Jonathan skipped his supplements today. One time is okay. I hope he has an OK day tomorrow.
Monday, April 23, 2007
We have done many MANY interventions since Jonathan was diagnosed on September 24, 2004. I have kept a journal of all the improvements and regressions that I have seen since. My journal is mostly in my head. I have a photographic memory although I have actually written many of my observations down. I still remember the day that he communicated with me via a simple drawing. We were at an OT session and I showed him how to draw a happy and a sad face. I told him what they meant. Jonathan didn't speak. He erased my happy face and drew a sad face and when I asked him who that was (is that daddy, is that mommy, etc.), he nodded no to everyone I pointed out until I mentioned his name, and he nodded yes. He was 33 months, had no language (other than vocalizing the ABCs and the numbers) and that was the first time ever that he had told me how he felt. That was a very intense moment. Very emotional (happy) for me.
Sunday, April 22, 2007
HBOT Day 22
We dropped Vanessa off with Abuita, Tia Nelci and Tia Maria Alejandra (who is visiting) and took Jonathan and Daddy to the HBOT. When he exited the chamber, he was again in a good mood. He asked what we were doing next.
Maria Alejandra and Vanessa
Saturday, April 21, 2007
HBOT Day 21
On Saturdays and Sundays our sessions are at 11:30am. Daddy goes in with Jonathan. The dive went well. When Jonathan got out, he again was in a great mood. We went home and he immediately asked to play with Playstation.
A bit later, Vanessa came home after spending the morning and part of the afternoon with Abuita and tia Nelci. Jonathan came down and started playing with Vanessa and me and pretending the he was Mickey Mouse and that we had to find the club house. He wanted to go outside and we went outside and walked down 2 blocks looking for it. He made up everything we had to do, and say, etc. Excellent imagination.
4 kids from our neighborhood came over to play with our dog Kaiser and Vanessa. They wanted to play with Jonathan too, but Jonathan felt a bit intimidated and went back to his Playstation. The kids were between 7 and 8 years old. When they left, Jonathan came back out. We had a BBQ with friends and family and he came out to eat and continue to play and pretend. I really need to concentrate more on socialization.
Friday, April 20, 2007
Thursday, April 19, 2007
HBOT Day 19
Today's dive was uneventful. We watched Curious George and the time went by quickly. I believe the air blowing into the hood bothers him because he keeps trying to scratch his eyes though the plastic. But he tells me every time I ask him that he is okay.
On the way home, we stopped at BJ's to buy food. He was in a great mood. He got into the cart and I pushed. Everything I wanted to put inside the cart, he asked if he could take it (milk, juice, cheese, etc.) He was so proud of himself every time he grabbed one item and put it into the cart. Later, he decided he wanted to get down and push the cart. We finished picking the items and walked to the register. As we are walking, he told me that he didn't want to crash (I kept telling him to watch out because he was running into things) and he became very coordinated, watched every inch and did not run into anything.
He loves to handle the cash register. So I told him what buttons to push and he learned that he had to check where the barcodes were so the scanner could read them. He was so happy. I was so happy to see him to happy.
Wednesday, April 18, 2007
HBOT Day 18
We arrived and Jonathan was happy to say hi, but didn't want anyone to help him get his shoes and sweater off. We got into the chamber and he did well. He had trouble popping one ear, but after a few tries, he was ok. Even though he had gone potty before we entered the chamber, he had to go again. His urine was pretty dark, possibly his creatinine was high give the color and time of the day.
When we all finished our food, Jonathan insisted that he wanted to play with my computer. I allowed to play while I fixed his supplements. He is so good with that computer. He can use the mouse perfectly.
Tuesday, April 17, 2007
As I was leaving she told me that she had worked extensively with children with down syndrome and autism, and his autism is very very mild. She used her fingers to denote that he had just a tiny bit of it. Just a bit. "You can almost drag it out of him". Gosh, that is exactly what I am trying to do!
HBOT Day 17
We arrived and Jonathan was social. Said hi to everyone and noticed a clock on the wall. He ran to the technician and very happily told her that it was 2 minutes to 6pm and we had 2 minutes to get into the chamber. She laughed and told him he was right and to hurry up and get ready. We got into the chamber. He is a professional by now. I felt asleep again inside the chamber while he watched TV. He now helps me take his neck seal off when we are done. When we got out of the chamber, he now has a new routine: turn the DVD off. The technician finds it cute. It is starting to annoy me. We'll see.
Monday, April 16, 2007
When I arrived from work, Jonathan was playing Playstation. He asked his grandma early today to go to the Toy Store to buy a game. Abuita didn't realize that the playstation game he picked (Ant Bully) was for 10+ years. When they got home and he started playing. He got a little frustrated but he was persistent. Finally, after I would say an hour and a half, he finished the first level. He was so excited. He turned to Abuita and said excitedly: "we win!". Then he looked at her and said: "you didn't win, I win". She started laughing. That was really nice language.
Later, I called him down for dinner. He and I were fighting as I wanted him to eat lentin soup and he was giving me all kinds of excuses. But he ate almost all of it. I stood up to get his rice with chicken nuggets and he followed me. He saw my cell phone and said: "I want mommy's phone. I ate all the soup so I can have mommy's phone". I simply couldn't say no to that. He had never given me a justification as to why he can have something. Big deal.
Later, he asked me if he could play with my PC. I showed him a new page (http://www.starfall.com/). He really liked it and was very interactive with it. Vanessa sat with him and he showed her what he was doing. Very cute to watch. About 15 minutes later, I was fixing his supplements when he called me up and said: "look mommy, I am going to make a flower". And I asked him how. And he said: "first we put seed in bucket, then we water, then we wait and then we have flower". He was looking right at me when he said all this, so although I know that he saw it first on the PC, he understood and was able to articulate it. I can tell he didn't simply memorize it. Then I asked him to change to another game. He found one called Peg the Hen. And he loved it. He started making up a story as he was watching the hen fly and get wet and get caught in a spiderweb. I should have taped that. But I was overwhelmed watching him.
Later, I bathed the kids and I asked Jonathan a few questions using regular language (not the Indian-like language that we have all gotten so used to speaking around the house). He came to me and said: "my name is Jonathan" and I said: "and who am I?" and he said: "you are Alex, my mommy". He paused and said: "and daddy's name is Javier" and I asked "what about your sister's name" and he said "Vanessa, my sister is Vanessa". And I asked him how old he was, and he said: "I am five. Vanessa is 3". And I said "no, her birthday will in May, in 1 month" and he said "oh, so she is 2?" And I said "yes, she is 2, she is almost 3" and he looked at me and smiled. That was really cool. Lots of abstract thinking.
I believe that HBOT is definitely doing something. We have not had a session in 2 days, so I am going to ask tomorrow if it is normal to see improvements 48 hours after the last dive. There could be a correlation. Also, lowering the dosages on the mitochondrial support supplements might have made a positive impact. We need to keep monitoring him.
I believe that we are now ready for RDI. I need to read the book and get to understand to protocol well. We really need to concentrate now on Relationship.
• University officials say 33 dead, including a gunman
• Four hospitals report 29 wounded
• Attacks mark deadliest mass shooting in U.S. history
This is a very sad day.
Sunday, April 15, 2007
Jonathan played with the Playstation on and off during the day. He also played with disney.com on my laptop again on and off during the day. He joined Vanessa in the afternoon for some pretend play and wrestling :) Here are some pictures.
Tonight, shortly after Jonathan fell asleep, he sat on his bed crying softly. I came by to check on him, and he had his eyes closed and was sweating. I asked him what was going on, but he didn't answer. He didn't even open his eyes. And went back to his pillow, put his thumb in his mouth and kept on sleeping. I am thinking that he had a night terror. Javier thinks that the nightmare could be because of the Playstation. I need to watch this closely.
I re-adjusted his supplements a bit today. I am sure that he will have a reaction as he always does, but I think that this is important. I mainly lowered the dosage I was giving him for mitochondrial support (cut ADT and BH4 down to half the dosage). He has been weird these past days (specially Friday) and the HBOT technician mentioned to me at the beginning that HBOT increases mitochondrial reactions in the body.
I am also giving him extra herbs to help loosen up his stools. When he was a baby, he had terrible constipation. After starting the DAN! protocol, it fluctuated. With Yasko, his bowel movements have been very good. The past week has been hard on him. He cried yesterday because he was very constipated. I also heard that the HBOT plays a role in unbalancing the gut.
Saturday, April 14, 2007
HBOT Day 16
When we arrived at the site, Jonathan was a bit shy. But when we entered the trailer, the shyness went away. He immediately went to the technician and asked her if he could put today's movie in. She is very impressed that he is able to handle all the electronic equipment so easily. She said today that she had never met a 5 year old so technologically inclined. It was funny to hear. But it is true. He can handle any TV, DVD, VCD, CD player, PC. It is his pasion.
I took pictures of Daddy and Jonathan inside the chamber today, and ran out of battery when Vanessa entered the chamber. That would have been cute to capture. Jonathan doesn't actually put the hood on until the chamber is pressurized at 1.5 atmospheres, but we wanted to take pictures, so we put on the hood and Daddy took it off before the technician closed the door.
Yes, 4 adults and 4 kids fit in this chamber. It is hard to imagine, but it is not as bad as you might imagine. There are TVs on the outside of the chamber that show through the small windows you see the left side, and we get to watch kiddy movies (lots of Barney and Dora) for 1 hour.
Vanessa and I went to a toy store to purchase a Barbie doll that she had been asked for the past week. We picked Jonathan and Daddy up an hour later. I attended a short conference afterwards and then we met up quickly with a few friends at a restaurant before we headed to the airport to pickup my father. He was in a very good mood. He played with friends and had a great time. Luis' mother was there and told me that she noticed that Jonathan was acting very differently from the night before. We all noticed how much pretend he was playing today with Christian's Ninja Turtles and enjoying it. The day ended on the same note, lots of pretend with Vanessa with a Toy Story Woody doll, some playstation, but great mood. What the video below of what we captured today.
Friday, April 13, 2007
HBOT Day 15
He did well in the chamber. I was tired and fell asleep a couple of times, but Jonathan didn't let me sleep. Kept telling me "wake up Mommy". When we finished, we drove home quickly as we were going to pick up with Daddy and Vanessa and head over to Joe's Crab restaurant to meet up with some friends for dinner. Jonathan doesn't like going there much. We don't know why. He wasn't thrilled, but he was okay and said that he wanted to eat pizza.
Thursday, April 12, 2007
When they got home, they showed Jonathan the dragon robot they bought. Jonathan did not care for it.
This morning, Jonathan woke up in a better mood, and seemed to be more on this side of the world than his. He came down early, watched TV, asked to eat cereal and then Vanessa started playing with the Dragon. Jonathan got very intriged and decided to play with it too. Here is a small video I took with my point and shoot digital camera:
HBOT Day 14
Jonathan got home after getting his allergy shots, I bathed him and we ran out the door to make it ontime. He watched Mickey Mouse Clubhouse again (I am staring to think this is borderline OCD). When we got the trailer, we got into the chamber without issues. He watched TV while I spoke with a father of another autistic child. I was shocked to learn that he was a pediatrician and his wife was a special education teacher that specializes in children with autism and had the terrible luck of having a severily affected child. It was nice to hear that although he is a pediatrician, he believes in Yasko and started her protocol 4 months ago. He doesn't believe it is yet the answer, but it is the best thing out there right now.
When we got home, Jonathan was very moody. He wanted spaghetty with cheese. And he was pushy. After eating, his mood changed. Poor thing, he was just very hungry. He played with Vanessa for a while and we took them to bed.
Wednesday, April 11, 2007
HBOT Day 13
He fell asleep on the way to the chamber. Our fault for sending him to bed so late that night before. When we arrived, I woke him up and picked him up and carried him into the trailer. I was happily surprised to feel that he was hugging me hard. He had never done that before. Vanessa has always grabbed onto me firmly, but Jonathan has never had the motor skill necessary to grab onto my neck firmly. So although small, this is a nice improvement. It shows stronger motor skills and less hypotomia.
He did really well in the chamber, although he was hungry and kept asking what we were going to eat for dinner. Poor thing. When we left, he sat in a chair so I could put his shows, and he kept asking the technician what she was doing: "Are you putting bridge back?" (there is a bridge-like wood that she puts inside the chamber to slide the very disabled kids (the kids with Cerebral Palsy that can't walk or move). And she said yes and explained why. Then he kept asking her everything she was doing. And Jen was very pleasant and kept explaining in detail what she was doing.
We went home and he had trouble eating. He wanted to play with my PC (http://www.disney.com/) and didn't want to sit at the table. He has been very accommodating all these days except today. He cried and screamed. Javier was getting a bit anxious. Jonathan finally ate some vegetable soup and rice with scrambled eggs and went back to my laptop.
A bit later, he went potty and I noticed that his urine was crystal clear. I had not seen that in a few weeks. Crystal clear urine means that heavy metals are being excreted. When I told Javier, we both breathed. His crying and lack of flexibility are just detox!
Tuesday, April 10, 2007
HBOT Day 12
When we arrived, Jonathan was in a great mood and said hi to everyone. We went inside the chamber and he was in perfect mood. I covered his ears and 5 minutes after pressurization, we spent the hour going through the material for my citizenship exam. It was funny. We interacted the entire hour.
When we arrived at home, we turned around to go to the Grocery store to get milk and juice. The kids had a good time riding the cart :)
Monday, April 9, 2007
Then Jonathan pretended that he was Mickey Mouse and we had to address him as Mickey the entire night until he went to bed. It was pretty funny.
Now that I know how to embed videos from YouTube, here is another one. It is 5 minutes long. Sorry. But fun to watch. Enjoy it.
Sunday, April 8, 2007
Jonathan was not as social at first as he has been in previous occasions. He wanted to watch a DVD movie and I told him to ask Andrew (my cousin). He was confused about who Andrew was, but was very open to allowing anyone to help him. So I'll treat that as a positive. He and Vanessa ate lunch before we all did, watched the movie and overall behaved very well.
The day was pretty nice, calm and uneventful. After lunch, the kids played with Abuita (their grandmother). Jonathan loves to be tickled and Vanessa loves to tickle him. Later on they played with my sister-in-law Sara at hide and seek and Jonathan really enjoyed it. He still has trouble understanding the concept. But he is doing much better.
Video of Jonathan and Vanessa playing hide and seek with Sara
No HBOT Today - Easter
Saturday, April 7, 2007
HBOT Day 11
When we arrived at the trailer today, Jonathan was anxious. It surprised me since he seemed to have overcome the anxiety. One Mom was there and said "hi Jonathan" and Jonathan did not respond and grabbed onto me like he was terrified. He did that at first, but had stopped after the 3rd day. Perhaps his intestinal yeast is acting up. But he went in the chamber promptly with Daddy and Vanessa and I left to Barnes and Noble to spend that hour together. We had a nice time reading books.
When I arrived to pick Daddy and Jonathan up, Jonathan came out of the chamber in a much better mood. We all got in the car and he asked to watch the Mickey Mouse Club House DVD we bought last week. He was so cute singing the song. He almost knows all the lyrics. I have to tape him tomorrow. On our way home, Daddy asked him if he was hungry. He said yes. Daddy asked what he wanted to eat and Jonathan replied pizza. We tried to persuade him to eat his favorite chicken and rice, but he insisted he wanted pizza. It is hard to maintain a gluten free diet with this child lately. So we went to get him pizza.
In the afternoon, he spent about 1.5 hours playing Playstation. He completed another level of Flushed Away. My goodness he is getting really good at it. But he got tired and came down to the family room to spend time with us before we left to the Circus.
His first Circus Ever
The Ringling Brothers were presenting at the George Mason University Patriot Center for a couple of weeks. Javier bought tickets yesterday. We honestly were very concerned that he would have sensory problems or simply be bored or have some type of meltdown. But it was the total opposite. Jonathan had a fantastic time and he behaved very well. He had trouble regulating the input at first: lights, sound, crowd. He sat in his chair and asked what we were going to see. I told him it was a Circus. But he didn't have a clue. I told Vanessa it was a Circus like Dumbo, but Jonathan did not relate to it. So he sat and stared at the stage sucking his thumb waiting for the show to start. He was very patient.
When the show started, he got a bit scared. Covered his ears, and had Daddy cover his ears. As all the horses and the clowns and the people got out and danced, Jonathan started to feel more comfortable and let go of the ears. Daddy was talking to him and pointing with his finger at different events going on. After about 15 minutes, Jonathan was totally engaged. There were a couple of events that he didn't care for too much, but there were others that he was really into.
During half-time, he was patient and waited. Vanessa and Daddy went to walk around the Patriot Center and got pictures taken, while Jonathan and I stayed in our chairs and watched the people.
He really likes popcorn. He grabbed the box we bought when we entered the arena and started eating like crazy. Genetics are really interesting. As I observed Jonathan closely today, I noticed that he eats popcorn the same way I used to eat it (stuffing my mouth until I couldn't add anymore). Years ago, my first boyfriend found that habit very annoying and after years of asking me not to do it (not very lady-like), I changed my habits and learned to eat 2 pieces at a time. Now my son is doing the exact same thing I used to do. Some habits are definitely inherited. Sometimes boredom seems like something that he inherited (Dad used to get bored easily as a child) instead of an autistic behavior and it makes judging what is going on a bit harder. Today at the beginning he seemed really bored.
Jonathan really enjoyed today's show. Javier and I were really excited to see how he paid attention and enjoyed the show. When it was over and we left, he said: "I liked the Circus". Those words sounded like music to our ears.
"At first, dreams seem impossible, then improbable, and eventually inevitable."
Friday, April 6, 2007
Jonathan had a pretty good day today. He spent all day at the daycare, and when he got home he was happy and energetic. He negotiated with me how many minutes of Playstation he would play after bath. It was quite comical. To my amazement, he got totally undressed and then dressed himself up for the first time EVER (pants, shirt, socks). He did not even want me to help him. He put his t-shirt backwards and when I pointed it out, he said: "oopsy, that was silly". This is very exciting.
He knows we need to leave at 5:20pm. It was 5:03pm and he knew he had a few minutes to play Playstation. Right at 5:20pm he said: "Mom, it's 5:20. It's time to go!".
HBOT Day 10
Okay. Jonathan is a complete professional by now. He now knows the drill at the HBOT trailer. When we arrived, he said hi to the technician, took his shoes off, climbed right inside the chamber. No problems. I got in, and he immediately asked me to cover his ears and we sat and watched TV while we were being pressurized. After that, he helped me turn the oxygen on, he put his hood on and we watched TV. Today they had a "sign language" movie on, and he was imitating them quite well.
Today, the oxygen regulator was acting up. We normally put the pressure at 20, but he was not getting enough oxygen inside the hood, so I talked to the technician and even though she did something outside to fix it, I had to increase the oxygen flow to 35 (which is really really high) just so that he would get his hood filled. I played with it the entire hour. I hope he got enough oxygen for the money we have to pay for each dive (session).
When we finished, he got off and ran to the TV station where they play the DVDs (go figure he knows where it is already). He told the technician that he wanted to turn it off, and she told him that he could do it. He was very excited. Then came down to where I was and told me that he was very excited because he turned the DVD off.
Recap. I think we all had a terrible day yesterday. Not just autism, but moodwise everyone was simply not having a good day. Today was much better. Jonathan's language was good (although Tuesday has been his best day so far) and appropriate and better focused than yesterday. He was not as hyper. And he was in a really good mood all the time. He normally has a hard time regulating his volume (he really screams when he talks but Daddy tends to do that - it runs in Daddy's family - so it could be genetics). But I tell him that he is screaming and he lowers the volume.
When we arrived at home, his grandmother was waiting for us and invited us over to Olive Garden for dinner. I was not very thrilled after last night's experience, but I gave him an enzyme pill and we went.
I was pretty shocked at how well he did. He was very polite. Asked the waiter for "Apple Juice please". He did some nice "sensory" type stuff that he had never done before, such as grabbing ice with his hand out of the glass and observe it. He did not try to eat it, but this is a good beginning. He was so cute when the waiter brought the bread and salad and the waiter was putting parmesan cheese on everyone's salads and when he got to Jonathan, he looked at the waiter and said: "no cheese on bread. Cheese for my pasta". And the waiter was really nice and told him no problem.
I took a few pictures of Jonathan eating his spaghetti. He has a routine where he has to have Parmesan cheese in a different plate and he uses his fingers to grab some from the plate and put it on his spoonful of pasta. And then, after he ate his entire plate (he is a 54 lb. great eater ), he asked Daddy to put just cheese on the plate and and the cheese alone. Today was a nice day - specially compared to yesterday.
He loves cheese: