(NO HBOT) Little Things Matter

Normally, we (parents of children with developmental delays) are more attuned to changes in our kids behaviors. We crave more positive changes as they may signal improvements and we feel hope in our hearts that they are moving into the right developmental direction. And when we see regression, we withdraw into depression. Because remembering difficult times is very hard to deal with emotionally. So raising a child with developmental delays, from Down Syndrome to ADHD to Autism, is a roller coaster of emotions for us parents.

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.

2.5 years later, Jonathan can now speak and he can tell me when he is sad or about to get mad or happy or sick or scared. What a wonderful improvement. He is not recovered yet, but this is a major improvement.

Despite his great improvements, we continue to notice every tiny change in his behavior and feel extremely happy or sad about each of them (depending on what we notice). Today, his school teacher sent a note saying "Jonathan usually wants us to cut his pizza into strips, but today he picked it up and ate it without being cut :) Way to go Jonathan". That tiny improvement made my day!

Tia Maria Alejandra brought the kids a magnetic build kit toy (Magnetix for 6+ year-old kids) made out of magnetic balls and tubes and the child makes shapes with it. Jonathan loved it. He started to build triangles and squares, but really liked it when Maria Alejandra showed him silly things to do.

After they played with that toy, Jonathan initiated playing and asked Vanessa to go outside to the swings and the slide in our backyard. It was awesome to see them play. They are now having some simple conversations, and they fight because they don't like to share some toys. I am trying to teach Jonathan that he is the big brother and needs to let Vanessa play, but I have to admit that the fighting sounds like music to my ears for the most part. I do lose my cool when they both scream louder than the other. But it is great that they are using language to communicate. I will work on managing this behavior better.

(HBOT 22) Jonathan Loved Bowling

Jonathan slept late today. He did not want to eat breakfast. He complained yesterday of having a stomach ache and he had a bit of fever yesterday. So it is hard to say whether it is detox or virus or something else.

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.

We came home and Jonathan asked if he could play with a new PC video game I found a couple of days ago for him. He loves it. He, my Dad and I sat by the kitchen island working with our computers. When we finished, we went to Moby Dick for lunch and met up with Vanessa and the rest of the gang. Tia Maria Alejandra suggested going bowling. I was a bit skeptical, but it turned out to be a fantastic idea. Jonathan was happier than I had seen him in a very long time. He coordinated everyone's turns, he learned quickly the rules, he played well for the first time and for a 5 year old. It was awesome. When we got home, we bathed the kids and Javier watched a new Barbie movie with them. They fell asleep quickly after the movie was over. Great day.

Maria Alejandra and Vanessa

(HBOT 21) Lots of Mickey Mouse Pretend

Today Jonathan woke up telling all of us that he was Mickey Mouse and calling us by the names he gave us last week. I am Minnie, Daddy is Goofy, Vanessa is Daisy, my Dad is Pete, Abuita is Clarabelle.

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.

(HBOT 20) Half Way There

When I picked Jonathan up, he was laying down on the green pillow. I hate seeing him there. He saw me, came by and left. He was a bit weird and was humming like crazy: in the car all the way home, at home while bathed him and changed him and going to the HBOT. It was hard to break him away from being submerged in his world

HBOT Day 20

When we arrived, Jonathan got in with no issues. Today although he asked me to cover his ears, half way into the compression process, he took my hands off his ears and said that he didn't need them anymore. We had an uneventful dive. Everything nice and quiet. He hummed the entire hour though.

When we left, Jonathan told me that he wanted Pizza. He was in a great mood. I have noticed that every time we leave the HBOT, he is in a great mood and very engaging. Abuita arrived home at the same time that we did. His aunt came by from NJ for the weekend and they both took Vanessa and Jonathan to the pizza parlor. He was happy and engaging.

(HBOT 19) Such a Good Helper

When I got home today, Jonathan was already home with Abuita waiting for me. He wanted to play with his Leapster toy, but it is broken (the touch screen is not working) and had a meltdown. I was able to get him to stop, changed him and told him that we had to leave at 5:20pm. That got his attention. He told me that he wasn't going to cry anymore and that he was Mickey Mouse. From then on, he was Mickey.

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.

(HBOT 18) He Fixed the Microwave Today

When I arrived to pick him up, he was laying down on the big green pillow. Seeing that always bothers me, kind of hurts me. Makes me wish I could quit my job and just be with him and keep him engaged and in this world 100% of the time. But reality is different.

I ran into a lot of traffic, so I told Jonathan that we were in a hurry, we had to get home and change quickly and leave. No time to bathe. I told him we had to leave at 5:20pm and it was 5:12pm when we arrived home. He told me: "Mommy, we have 8 minutes to go". That was shocking. So he can now add or subtract depending on how you see it.

When we arrived, my Dad was in the kitchen and I ran upstairs to change. I came down, changed him and left.

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 finished, the technician took out the DVD before he left the chamber. When he ran upstairs to the DVD player, he noticed she had stopped it. That is a good thing to try to change that new routine or obsession (depending on how you see it)

On our way home, he told me that he was Mickey and only refer to him as Mickey. He wanted pizza. I asked Javier to get pizza, but his mom was on her way home and picked it up. In the car, Jonathan kept tell me that he wanted to go to Tony's to get the pizza. I told him that Abuita was getting it. He said: "no, About is not home, I don't want to wait" It is great that he can make those abstract connections in his head.

As I am heating up the food, I noticed that the microwave's sound had returned. Jonathan had taken the sound off about 2 weeks ago (by pressing a combination of buttons randomly) and Javier and I tried to fix it with no success. I couldn't find the user's guide either. You never realize how important the beeping sound of the microwave is until you don't have it. Today, apparently while I was changing my clothes to go to the HBOT, Jonathan went to the bathroom, grabbed his step stool, got on top of the counter top, pressed a couple of buttons on the microwave and fixed the sound. My Dad witnessed it without knowing what Jonathan was doing. Javier and I confused whether Jonathan fixed it consciously or not. We asked him to show us what he did, but he couldn't.

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.

(HBOT 17) School Teachers are Noticing Now

When I arrived today at school to pick Jonathan up, his teacher stopped me in the classroom to talk to me about him a bit. She asked me to make sure that every morning I leave her a note whether he had eaten breakfast or not, because she has learned that if he comes hungry, he is not very social. When he comes and had already had breakfast, he jumps right in to play with other kids. Then she told me that she noticed that in the past week Jonathan is more attentive and curious and makes very good observations like today he pointed out that the note on the board indicated that they were not going to have TV today and he is trying to figure out what is going on at all times. She said: "He is starting to talk. He is staring to be more expressive". He had never done that before, so she was intrigued.

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.

(no HBOT) Lots of Expressive Language

Something strange yet amazing is happening to Jonathan. He is talking more spontanously. Today I heard probably about 30 words or more that I did not know he knew. It is like a "wow" day.

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.

Today is Dedicated to VA Tech

I will be dedicating today's blog to those students that died in today's shooting at Virginia Tech University in Blacksburg, VA.

Story Highlights

• 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.

(No HBOT) Laid Back Day at Home

We didn't have HBOT today. They called early to tell us that the oxygen didn't arrive yesterday as expected and for safety reasons, they were cancelling everyone's sessions. We stayed home all day because it rained and no one felt like dealing with the rain and crowded shopping centers.

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.

Supplements Adjustments:

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.

(HBOT 16) - Very Playful Today

Today started as every other day. Nothing out of the extraordinary. We got the kids ready to go to the chamber and they were both in good spirits.

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.

(HBOT 15) - Bitter Sweet Day

When I picked Jonathan up, he was playing by himself. He was talking to himself. He saw me and came running towards me. We said bye to everyone and went home. I bathed him quickly and ran out the door as we were going to be late. He played with my phone the entire trip

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.

When we arrived, he didn't say hi to anyone and sat next to Daddy, asked Daddy for his phone and sat silently playing with the phone. Vanessa joined the other kids in the playground. Nothing we said to Jonathan convinced him to go to the playground. When his pizza arrived, he behaved like never. He was very very VERY picky about the tomato sauce in the pizza and that the cheese was not perfectly aligned on top of the pizza after cutting it. After a good 10 minutes of patience, I lost it. I screamed at him that I was going to take the pizza away unless he stopped being picky. He stared at me and started crying and I walked away to clear my head. When I returned, Daddy took over and he finished eating. He looked at me with teary eyes and I opened my arms. He came to me and sat on my laps and hugged me and I rocked him for a little bit until he felt better. After about 1 hour, he was in a better mood and joined the other kids to eat some cake.

It was a very hard day. But it is not his fault. It was a long day, he was tired, hungry and cranky.

(HBOT 14) - Dragon Day

Vanessa and Dad went to the Discovery Store last night to use a gift card that Jonathan received for his birthday. It should have been Jonathan, but we figured whatever we buy from there would be a cool toy and we just don't have time with the oxygen chamber to go shopping.

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.

(HBOT 13) - A Bit Strange Today

When I went to the daycare to pick him up, he was laying down on the green pillow. He had not done that in about 1 week. We got home, I bathed him and got him ready for the chamber. He didn't have time to play with his Playstation, but he did seem a bit strange.

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!

(HBOT 12) - No Playstation Today

There was a lot of traffic going home from work today and I made it just in time to change Jonathan's clothes and mine and run out to make it ontime to the HBOT. He is normally very demanding about playing PlayStation before we leave for the HBOT, but he was very accomodating today.

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 :)

(No HBOT) Jonathan was Mickey Today

When I got home tonight, Jonathan and Vanessa were chasing Kaiser (our pit bull mix dog) around the house. The poor dog didn't know where to run, so I opened the door to the back yard, he ran out and out went the kids!

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.

(No HBOT) Happy Birthday Beba!

Today we celebrated my grandmother's birthday. We all call her Beba. She is from Navarra, Spain. I cannot post her age because she will kill me. Her actual birthday was on the 5th, but we went to her house today to spend time with family and to sing happy birthday to her.

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

(HBOT 11) - Fun Night at the Circus!

This morning it was totally great to see him and Vanessa watch Mickey Mouse Club House on TV and respond to Mickey's questions. Specially the ones where Mickey asked problem/solving questions and Jonathan knew right from wrong. He probably was able to do it before in his mind (he is very smart), but he articulated it and spontaneously today better than ever before. For example, Mickey asked if you would use a shovel to bathe the kitty, and Jonathan said "No", then Mickey asked what to do, and Jonathan said: "ask the mystery mouse ktool" (since that is usually the routine and he knows that if the answer is not within the 3 options given, the 4th option is the mystery mouse ktool); and when Mickey asked what type of tool to use, Jonathan said "cleaner". The appropriate tool was a soap, but Jonathan had the idea, just the wrong word. He sang along and stood up when Mickey commanded it, etc. Vanessa has been doing that for almost 1 year (she will be 3 next month), but Jonathan had never interacted so appropriately with TV shows before. Very nice to watch.

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."
-Christopher Reeve

(HBOT 10) - Chin Up and Fight!

Thanks for listening yesterday. I do need a massage (like Rafah said). Every day is hard, but yesterday was particularly harder. Things were better today. Thank you.

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:

(HBOT 9) - Living with Autism is Very Hard

I am focusing this blog on documenting Jonathan's positive behaviors and improvements (if any) throughout the day and commenting on items that we still need to work on. Sometimes I do talk about certain regressive behavior that I observe and bother me. But the idea is to track improvements because our ultimate goal if full recovery.

However, there are times when this life catches up to us and we need to vent a little. We want to scream to the world how hard living with a child with autism is, and how hard it is on us as parents and as individual people. No one can really related to us unless they have a child with this disorder. Different disorders such as Fragile X and Down Syndrome are close, but the difference is that autism spectrum disorder (including autism, ADHD, PDD-NOS, Aspergers, etc.) is brain and body poisoning and we are desperately trying to rip it out of their tiny bodies and in the process we lose track of everything else around us. Only 10% of children diagnosed with autism recover, and we are shooting to be part of that statistics. But the reality sometime hits hard.

Talking about how we feel is almost non-existent, because we need to focus on being positive if we want to win this war. Because both Javier and I are in this together, sometimes it is hard to turn to each other for support. We both find support in our friends. During the past 3+ years, our behavior as we live this agonizing life has turned some of our closest friends away. We have also separated ourselves as we have no energy to socialize and pretend to be something we are not, and have just chosen to remain close to a handful of friends. It is simply hard because living with autism is a constant nightmare and you become introvert as you don't want to talk about this all the time.

I admit that I am sick and tired of living in this world. A world where everyone pities me (us), a world where every bit of conversation is surrounding autism. A world where anyone that we interact with brings up ever detail they see in Jonathan (both positive and negative). And both Javier and I are trying to live "normal" lives as often as we can so we don't drown in this world that was not what we dreamed of. We (I, in particular) have chosen to talk to a handful number of close friends when I feel sad, so I get it off my chest and keep on going. Those people know who they are and I want to thank them for being there for me when I have needed them the most. I hope that someday I can return the favor. Our families have also been a great support, although sometimes we feel suffocated. But we know family means well and we love everyone and thank them for their support. But the truth is that I don't want to continue to live and breathe autism for the rest of my life. And when I find a new therapy that seems to work, I get excited that that is going to be our Silver Bullet. But there are no Silver Bullets. All I want is to dream that my son will be a "normal" child so I can have a "normal" life. That is the dream of every parent with an autistic child.

HBOT Day 9

Today Jonathan did not do too well at school. He was very very hyper and did not follow directions. The Therapist wrote a note mentioning that she had to prompt him frequently. His Grandmother picked him up in the afternoon and called me on my cell to tell me that he was very hyper and non-attentive. So several people noticed the same behavior.

He did well at the chamber. I was very tired and I had a headache (I have had a very bad headache for the past 24 hours due to some personal stress) and fell asleep inside the chamber while Jonathan watched videos. When we got out, Jonathan was very distracted. Did not hear anything that I was saying (e.g., put your shoes on, put your jacket on, he opened the front door even though I told him not to, etc.).

In the car, he was distracted watching a video. Daddy called and said that he was a the shopping mall and asked that we meet there. So we did. When we arrived, we put our name in the Cheesecake Factory waiting list and went in to meet up with Daddy. Daddy and Vanessa were waiting to take a picture with the Easter Bunny. Vanessa got scared, but Jonathan liked the bunny and got a cute picture with him. We then went to get them new shoes.


At the shoe store, he was very distracted, walked in circles and made lots of noises. One of the attendants was staring at him. I tried to correct the behavior, but it was hard to be on top of it and be with Vanessa as she was picking out what shoes to try on. When the attendant came to help us and measure his feet, Jonathan was very distracted and unwilling to cooperate. He would not stand straight (he almost seemed like he needed to go to the bathroom, but I knew he didn't need to go) and just wasn't listening to the commands (e.g., stand straight, put your feet on this platform, etc.). He was in his own world. I helped him get his feet measured. She brought a couple of models and we chose the one that fit him best. He did not agree or disagree, or made any comments.

We were going to stop by to see Abuita as she was working, but we were running late for our Cheesecake Factory appointment. When we arrived, they sat us immediately. We sat down in good spirits pretending to be a "normal" "happy" family. When the waitress arrived, we asked the kids what they wanted to eat and drink (although we knew already) and she took their orders. Jonathan was very edgy. He wanted pizza, and pizza. He was demanding. When bread arrived, he wanted the white bread. It was warm, so he started screaming that he wanted Daddy to blow on it. Daddy did, and Jonathan kept screaming. About 3 of these and Javier lost his temper. Then Orange Juice arrived and he was not happy because it had pulp. More screaming. Javier got upset again. Kept repeating to Jonathan not to scream and was very short and demanding back to Jonathan. It is embarrassing to be in a restaurant with a child that screams very loudly and have people around you turn and stare as they are annoyed. It became a very unpleasant situation. And reality hit. We are not "normal". We have a child that understands and communicates less than our soon to be 3 year old girl. Sometimes he behaves really well at restaurants and some other times we regret sitting at that restaurant (like tonight). And I am not sure that HBOT or anything else is going to ever "cure" him. He will get better, but this is going to be a life-long event. And I haven't come to terms with that yet. I don't want to give up. I am just tired. Like one of my best friends once told me: "siempre que llovió, paró". Which means that every time it rains, the rain eventually stops. Tomorrow will be another day.

Today, again, the media reported on Autism in Oprah's show. I recorded it. I am going to watch it now. I hope by the time Vanessa has her kids, autism is a thing of the past.

(HBOT 7 & 8) - First Appropriate "When" Question

I am going to start with yesterday's observations. I fell asleep last night with Vanessa and missed my posting.

Jonathan had a fantastic day yesterday. He interacted all morning at Daycare and the ABA Therapist wrote several notes about how social and playful he was with his classmates and participated in all activities without being prompted. In the afternoon he had a play date with a friend that goes to GMS (Gym) and he really enjoyed it.

HBOT Day 7 (03APR07):

When we arrived at the site, Jonathan was not too excited to go into the chamber. We had Monday off, so he probably thought it was over. He kept hiding behind me, was not very social to the staff and seemed anxious. Once we entered the chamber, and they closed the door, he urged me to cover his ears with my hands and press against his ears. I did that and although he seemed anxious, he coped all the way until they completely pressurized us. No complaints, no crying. When we reached 1.5 atmospheres and pressurization was over, he was excited and asked if he could help put his hood on. We watched Flushed Away comfortably because there were only 4 of us (2 parents and 2 kids) in the chamber. When we exited the chamber, Jonathan was in a great mood and told one of the staff members that he was happy because he helped Mommy to take off his hood.

*****************************************************
Today's Observations:

When I took the kids to school in the morning, Jonathan's teachers grabbed me as I was leaving his classroom to tell me that they could not explain what had happened to Jonathan yesterday but he was very talkative (would not shut up), loud at times as he is having a hard time regulating his speech, and extremely interactive with the other kids and in class. He participated in all activities which he normally avoids a couple and seemed overall very happy. They had never seen him that happy since he joined the center. You can imagine my happiness. I thanked them and left. As I walked to my car, I cried of happiness. HBOT may be working.

Abuita (Grandma) picked him up at around noon to take him to eat at Moby Dick (his favorite place - Iranian food) and then to the doctor's office for his weekly allergy shots. As they were driving, he asked her for his gummy candy. She said she didn't have any and that she would buy some soon. He asked: "When you buy more Abuita?" And she responded: "tomorrow". He learned about days and months a few weeks ago, but he had not demonstrated to know that "when" questions related to time and days or even months. And the fact that he appropriately asked a question that was going to lead to a particular time or day and understood the answer is a huge step. Great progress.

HBOT Day 8

The routine is simple now. It took a few days to get the hang of it, but we have a nice routine. I leave work at 4pm and arrive at home at 4:45pm. I bathe Jonathan and dress him with the clothes provided by the HBOT people. Inside the chamber we must only wear 100% cotton clothes. So the American Hyperbarics staff provide the 3 of us with a pair of pants and shirts when we signed up. They also advised us that we must shower before going in, no jewelry, no creams or lotions on skin, no make-up, no aluminum deodorant. So after I get Jonathan ready, he plays Playstation for 10 minutes while I shower and get dressed. We leave at 5:20pm and arrive at the church where the trailer is parked at 5:55pm. The session starts at 6pm. We have 32 more to go.

He did great today. When we arrived, he was excited, walked right in, said hi to everyone and wasted no time to go inside the chamber. Inside, I again covered his ears but he was calm today. We watched Barney and Dora, and he talked and he danced with Dora and had a good time. On the way home, he hummed a lot. But responded to each of my questions without hesitation.

When we got home, we sat down to eat and he ate peas soup with us. Since he started the HBOT, he has been more open to trying different types of foods. He then went to our bedroom to play Playstation for a bit before going to bed. He is really getting quite good at it. Another nice day.

One really exciting thing. We received the Stool test results and it showed no Strep, no E.Coli and rare Yeast. I am soooo happy. Yasko strep herbs worked. They killed the bad bacteria just as Yasko said they would. I gave them to Jonathan for 16 weeks on an empty stomach twice a day. It was hard and he hated that, but it paid off. I am going to order the MAP urine test to check for Chlostridia.

(No HBOT) No HBOT on Mondays

We had a day off today, but we saw more improvements today than in the past week. This morning I left home earlier and Javier got the kids ready and drove them to school. On their way out, our roof contractor was arriving to fix our roof. Jonathan saw him and said: "What are you doing climbing up the ladder?" The contractor looked at him and responded: "I'm going to fix your roof". And Jonathan understood perfectly and said: "ah, ok".

He goes to Occupational Therapy (OT) on Mondays. Grandma takes him. When she arrived at the daycare, she could not find Jonathan where he usually is. He is usually either laying down on a big green pillow sucking his thumb or in a corner. Today, he was on the floor playing with a few other kids. The teacher told Grandma that today Jonathan spoke more than ever. He would not stop talking. He also had a good OT day. He was more hyper than normal, but today's report says (among other things): Jonathan has been talking a lot today. His awareness was better than usual.

Later in the evening, when we all got home, Vanessa wanted to go outside to play (we have a small playground in our backyard) and he followed. He had not gone outside to play in months.

Overall, he seems more observational, more curious, and definitely more talkative.

On the negative side, HBOT has increased his stimmings (humming, rocking, moving constantly) and it is disrupting his gut (he again pooped on his pants). It has happened just about ever day since day 2 of HBOT. I knew it was going to cause gut issues, I guess I wasn't really psychologically prepared for pooping on pants.

(HBOT 6) - Jonathan Asked Vanessa for a Kiss

I am going to start with the very last experience of the day. We were getting the kids ready for bed. Vanessa was ready and I was putting her to bed, when Jonathan entered the room, went to Vanessa's bed (she was already in bed) and said to her: "Good night Vanessa. Give a kiss". And Vanessa gave him a kiss on the nose. Jonathan turned around and said: "Good night Mommy", and went to his room. I put Vanessa to bed, went to Jonathan's room and asked Javier if he had told Jonathan to come to Vanessa's room and say good night. And he said no. And we both stared at each other amazed of what just had happened.

Jonathan loves Vanessa. He has strange ways to show it, but he really cares about her deeply. He gets concerned when he hurts her, he gets upset with me when I reprimand Vanessa, he gets happy when she is happy. Whenever they are doing something, he always points the obvious out to Vanessa, calling her name: "Look Vanessa, the movie ended". But he had never come to her room to say good night. We have taught him to do so since she was a baby, but he was never this spontaneous. Could it be the HBOT?

HBOT Day 6

Daddy went to the chamber with him again. He said that this time it was really good. Although Jonathan was still uncomfortable during pressurization, he coped. Then they watched Flushed Away for 1 hour and the session was over. Everything was calm and normal. He said bye to everyone in good spirits and we left.

All he wanted to do today was play PlayStation. We are getting to a point that we may restrict it or forbid it for a while because he does not play with anything else. He spent a couple of hours in the afternoon playing the video games and it was time to eat and go to the Theater.

We went to see Diego (Dora's cousin) at Warner's Theater in DC. At first we was not very interested in going to the play, but once we got inside and he saw the scenario, he got interested. They gave the kids baby leopards masks and he was very excited with his. He actually had a very good time. He danced and jumped. He paid attention to the play, repeated what they asked the audience to repeat and followed the plot closely. At times we seemed a bit lost, and I helped him a out. I didn't want to lose him. I knew once he put his thumb in this mouth, that was it. But he didn't. He never complaint that he wanted to go. When the play was over, the crowd was overwhelming, and I mean really overwhelming and pushy. I asked Javier to carry Vanessa because people were pushing hard. I am completely shocked that Jonathan did not mind the crowd. We walked slowly towards the exit and he did not have a sensory overload for I think the first time. That was awesome.

I have observed some small but nice improvements over the past 6 days. The HBOT operator told me that normally people start seeing noticeable improvements around day 10. But I have also seen some disruption in what seemed to had gotten better. So we just need to sit tight and be patient. Hopefully, what seemed to had gotten better and is no longer that great will come back (eye contact, pretend play, etc.). This is a marathon, not a sprint! (I keep reminding myself as I want this to end sooner than later. But I know it won't).

Positive Observations:

• Language has gotten much better: longer sentences and more complex, conjugating the verbs more appropriately, using pronouns better, asking more questions, can answer some "why" questions appropriately
• He is more talkative about his feelings now and can read feelings in other people's faces (happy, sad, mad, scared)
• More observational of his surroundings. He is paying more attention to the environment: buildings, cars, etc. He is also paying more attention to people, what they are wearing
  
• Memory has improved. Or perhaps it has always been good, but he can articulate things better now. He knows his birthday, Vanessa's birthday, what day it is (day of the week, day of the month, month, year: Sunday April 1 2007). Although this I need to watch as this is also a "savant" type of behavior. It is good, just need to watch so it does not become obsessive.
  
• Sleeps well. I was told that HBOT can cause sleep issues. So far so good.
  

Areas of Concern:

• He is humming more than ever. I believe it has become constant at this point
• He is rocking more than usual - most likely to help him regulate his body and calm himself
• He cannot stand or sit still. He moves all the time as if his body was looking for input on where it is in space (this is why I wanted to do another loop of Tomatis, but we need to wait 3 months after the HBOT to allow his body to stabilize)
  
• His eye contact has deteriorated. He is having a really hard time looking at us straight in the eyes when communicating with us
  
• He again had a bowel movement on his pants. 4 times this week. It is becoming concerning
• Has little to no interest in playing with pretend toys lately
• Completely fixated again on electronic gadgets: our phones, playstation, electronic toys, etc.
• His eyes seemed to hurt today. It is usually calcium deficiency. So I started supplementing calcium today. I know Yasko doesn't like it, but calcium is critical. I will run a test to see where it is very soon.