Nice Day at a Clay Pottery Place

My brother came to visit last week and he and his family are staying with us. It has been really nice for both Jonathan and Vanessa as my 3 year old niece loves to play with them. Jonathan and Illy play really well together. And Vanessa and Illy have become best friends. Really cute. Jonathan tells the girls what to do and they do it. Illy is not as not as defiant as Vanessa can be at times. Vanessa has now the tendency to tell Jonathan that she doesn't love him or ignores him, and that breaks his heart.

Jonathan is very loving lately. Today he told me that he loved me very much and he wanted to give me a hug as soon as he got out of the car. Later he looked at me and told me that my hair looked good and he loved it. Just little things like that that make a huge difference.

My brother gave his wife a Nintendo Wii and Jonathan really likes it. He is getting really good at Tennis and Bowling. He didn't like Baseball and Golf as much. But the games are hard and require good coordination (you play standing up) and concentration. So I am thinking about getting him one for his birthday.

At Tae Kwon Doe he did really really well today. It has been about a month since he started and he already learned all the moves and the names of the moves. And he does everything the instructor says. What I liked seeing is that the instructor would give a 2 to 3 step instruction verbally and he could follow it perfectly without having the instructor repeat himself or even correct him. During concentration time, he can close his eyes and meditate for a couple of minutes. But he does not sit straight. I need to work with him on posture. And when he kicked the instructor's hands (per the exercise), he did not put his hands up properly. I need to work with him on that too. The other thing I noticed is that when he was told to sit down on the side, he did but he rocked himself. And he rocked hard. I need to research why. He has been very hyper lately. He rocked while watching the instructor and paying attention. So it is not as bad as when he did it and sucked his thumb and dove into his world. It is more like an "ADD" type of movement where his body needs constant input to self-regulate. But he is doing it more lately than ever before.

Today we went to a pottery place and he painted a telephone bank. Daddy helped. Jonathan really liked it.

He still has the tendency to say things that have no meaning. He can tell me an entire phrase of actions that have no meaning. Perhaps only to himself. I cannot even tie them back to a movie. And the other thing that is driving me crazy is that he screams when he speaks. He cannot regulate his volume. I fine myself asking him to speak softly every 5 minutes.

I am documenting the items that he still has trouble with so I can look back and compare. But he is truly doing amazingly well. He is talking and playing and fully engaged all the times. He is also making very nice connections in his brain and remembers things that he never cared for in the past. He can tell anyone now what Santa gave him for Christmas. He can tell time better (before, now, later). He asks very good questions. He is starting to ask how things work. How is a complicated type of question. It requires abstract thinking and imagination to understand the answer. And his DAN! said that that is a milestone. We are getting there. He already asks how he can get something done, but how something works requires that the person is analyzing something and using the imagination to try to figure out how something works.

Still taking all his supplements. No changes.

Jonathan and cousin Illy playing

Jonathan and Daddy at the pottery place painting a telephone bank

Merry Christmas!

Merry Christmas - Feliz Navidad!

It has been almost a month since I last posted. We have been so busy between work, extra-curricular activities, Christmas, etc., that by the time I am done in the evenings, I am too tired to post.

This month has been interesting and I am just going to mention a couple of events. I will try to post more pictures during the week.

I was so busy last month, that I did not keep up with ordering Jonathan's supplements. And we paid a very high price as he started regressing. Even the school mentioned that he could not focus so much.

So I ordered everything (a very large order) and started him back on all his missing supplements 2 weeks ago. Within a week he started behaving better. This week his language and sentences are much much much better. It was like he was drifting away and we got him back. That teaches me to never run out of supplements.

Overall he is doing well and I am pleased with his progress. I am concerned that we are in the middle of school year and his language is still very appraxic. I want to do another HBOT session, but we cannot afford it until the middle of next year. I have been chelating him with both EDTA and DMPS suppositories for the past 9 weeks hoping that that will help.

With respect to Christmas, this year he was very interested in gifts. He still does not understand the meaning of Christmas, or even Santa. He asked Santa for 2 things, but he did not really care about Santa much. But he liked opening gifts like never before. I will post a small video tomorrow.

Jonathan cuddling with Andrew (my little brother-cousin) while watching TV. Never before seen.

I had a very nice Christmas. Watching Jonathan enjoy having the family over, opening gifts, be excited about his gifts and play with everyone was the best Christmas gift I could ever have.

Happy Holidays!

Comprehension is Improving Quickly

The past week, but particularly the past 2 day, we have noticed that Jonathan's little brain is comprehending things much better than he did in the past. He is now able to take what we say and paraphrase it. Which he could never do before. But he is also hearing, understanding and he is making logical statements. For instance, last weekend we were in the car and he told me "mommy, the DVDs in the car do not turn off EVEN IF the car is off" - which they do because they are portable. I was very impressed to hear him say that. She said it a couple of times actually. And he does not take what I say anymore by law. He asks "why" a lot. We argue quite a bit. "I want chocolate". "No, can't have it right now". "But why?". "Because you need to eat your dinner before you eat chocolate." "But I already ate dinner at McDonnalds". Life is rather colorful :)

Today he called me on my cell phone and asked "Mommy, where are the chocolate cones?" (the oreo cookies sugar cones that I buy for his ice cream). I told him that Vanessa broke them last night by accident. So he asked "so what are you going to do? are you going to buy more? when?" Wow, 3 questions at once. I explained that I would stop at the grocery store on my way home and I would get him some. He was sad but said "Ok".

Dr. Yasko published a list with her suggested dosage for supplements depending on mutations and results of tests. I was very excited to see that. I already collected the ones that apply to Jonathan based on his genetics and there were a few that I was missing. I'll introduce them in December and run some tests in January to see where else I need to adjust his supplements.

First Tae Kwon Do Lesson

I am so proud of Jonathan. Even though I feel that we are "stuck" again, he is actually developing quite nicely. He is now sooo interested in doing all kinds of activities. He is thirsty for new things to do. He is always asking "what comes next". Or says "I want to do something new today". He wants to help me cook all the time. He helped put the Christmas tree up with great enthusiasm. And today, his grandmother took him to a try-out Tae Kwon Do class, and he did awesome. Came home so excited about it and told me that he is going on Mondays, Wednesdays and Fridays.

He has become rather self-sufficient. He gets his own snacks at home. He wanted scrambled eggs tonight, so he grabbed the 2-step stool, opened the frig, grabbed the eggs, took the pan out and told me that he wanted eggs and wanted to hep make them. He serves his own juice. He now even goes to the bathroom and closes the door when he is doing number 2. I know these are normal behaviors from a 5-year old. But since we didn't witness the development of these behaviors like we are with Vanessa, all of this is new and exciting. And they seem to be better controlled as time goes by.

His receptive language has gotten much much much better. Faster than his expressive language. We need to work hard on that area. His apraxia is very pronounced. However, most people can understand when he wants something or simply wants to communicate.

Baking Cup Cakes

Setting up the Christmas Tree

First Tae Kwon Do Class

Happy Thanksgiving!

It has been over a week since I updated the blog. We are keeping very busy. My brother came to the US with his family and we went on a short vacation to a town near-by. It was very nice.

Jonathan is doing great. He is interacting with everyone, he is curious, he wants to help me with everything. But at the same time some of his old obsessions have returned. The past 2 week he has been putting DVDs and music CDs in DVD players for just a few minutes and then finding another one to put them on. He is also humming quite a bit.

I have actually been thinking about him all week. On one hand, many people have been telling us for the past 2 weeks that Jonathan acts like a normal child. Mainly because they see him playing with other children in playgrounds or moon bounces, or even playing with swords and hide and seek. But then when he wants to communicate what he is thinking or experienced, he has trouble putting the sentences together. And if you don't know him, it is hard to actually understand what he is telling you. I find myself translating. I understand him. I have learned to communicate with him in such way that I understand 95% of what he says. I believe Dad and Abuita do as well. And now even my father is getting better at it. But tonight he came to tell me that he had bumped into the door and hit his lip and even though I understood enough to help him complete the thought, my brother told me that he would have never understood what he was trying to say. He can repeat the phrases that he hears at school or on TV without problems and they are clear enough that anyone can understand him. So it is not a vocal or motor problem. It is his apraxia. It is very pronounced still. I am glad that today's event with my brother took place so I can refocus. Sometimes, since I live with him, I feel that he is more advanced that he is because I understand him. But he still has a very severe communications problem. I need to focus on that this year or else the first-graders are going to give him a very hard time next year.

Here are some pictures from this week. He has been very happy and playful and also alert. We went to a birthday party (moon bounce pictures). Then we went to a ski resort for a couple of days. It was cold but not much snow to ski. He also played chu chu train with Vanessa and his cousin. We also went to a great colorful park. And in the last picture you'll see Jonathan helping my brother blow his birthday candles. He wasn't into birthdays until this year. It was a full and fun week.

Veteran's Day Weekend

This weekend we met a very nice lady and her family for a play date. Her son M. is on the spectrum and is a few months younger than Jonathan. Undoubtedly we compared the two boys to give her an idea of where Jonathan was a year ago and even just a few months ago compared to now. Her son seems to be more metal toxic than Jonathan, yet he is high functioning. Which is a great position towards recovery. She is counseling with a great DAN! doctor. I wish her the best reaching that goal. Vanessa and the lady's younger son played very nicely and Vanessa kept nice memories of that play date for a few days. Jonathan was not as interactive and playful as he is at other places. I think it is because he was fascinated with a marbles game they had and wanted to play that over and over. He then played with the trains and M. for a few minutes and it was nice to watch Jonathan give M. the trains and engage in play even if it was for just a couple of minutes.

Jonathan has been a bit more obsessed these days than normal. It is funny how when a child improves, that becomes the new baseline of what we think of "normal". So a tiny bit of regression is noticed as abnormal. He has been playing video games on the PC with a particular CD for 4 days. I hid it today because he needs to disengage from that behavior. By tomorrow he probably won't even ask. Cross my fingers.

Jonathan has been making a noise with his throat as if he had something in his throat that bothered him (like allergies). I give him zyrtec and he gets weekly allergy shots. So I am not sure if it is due to the tree leaves falling down (which has affected my nose and throat and made my voice hoarse and I am on medication for that) or a reaction to a supplement or food. I am not even sure how to check. We noticed today that he doesn't scratch his throat first thing in the morning and it does start after his supplements. The only thing I added a couple of weeks ago was the Houston's Fenol enzymes. I'll finish this week and give him a break next week to compare.

We went to the shopping mall over the weekend to shop for a nice outfit for Jonathan for the Veteran's Day event he was going to have on Monday at school, and decided to have a picture with Santa taken since there was no line. It was soooo hard to get the kids to smile naturally. The staff took 6 pictures of them. They are so much more photogenic in other places. I don't know why it was so hard to get a picture with Santa. But at leased we got one semi-decent. Last year I was very sad because Jonathan looked very autistic and my dad made fun of me and told me not to react like last year. This year, the first set turned out looking very autistic. But since there was no line, I requested a second set. He looks fake, but not autistic.


Other than the obsession with the Aladdin games CD and the throat noise, he is doing quite well. He is playing a lot with Vanessa. He does seem a bit more absentminded than normal. I think he still has some severe muscle tone issues. Since we are going to have BCBS insurance starting in January, I called his old OT and requested his spot on Mondays back. They will get back to me.

On Monday they had an event at school and we dressed Jonathan up. He looked adorable, although I think he didn't feel very comfortable. His class had been rehearsing the Pledge Allegiance and he rehearsed with us a bit. Daddy attended the event and said that it went well. Jonathan sat with the rest of the class and did what the teacher told him to do.

Good School Report

I haven't had time to update the blog lately. Daddy and I started a detox diet and it has been really hard on us. I can only imagine what our kids go through. We had 3 really tough days (headaches, lack of energy, cravings, bad moods). Today is better.

Jonathan has had a very good week. Tonight he was a bit strange. He seemed in his world all the time. Lots of humming. But he had been doing quite well during the week. Perhaps just tired. Perhaps yeast. I ran out of diflucan.

We had the parent-teacher conference on Monday. The teacher told us that she is very pleased with his progress. He is doing very well in class. For a child with social problems, he is quite social. Academically he is doing very well except with rhymes. He does not understand rhymes, cannot point them out in a sentence and cannot make one up. He did very well in the Fall DRA standardized test (min was 61 and he got a 159). But he got zeros in the rhymes section. The teacher told us that she is going to work with him on that.

I feel very joyful to know that Jonathan can take standardized tests. Back in February we were told that he would possibly not do well on standardized tests and I am so happy to have prove them wrong. The nice thing is that everyone in Jonathan's class got over 140 except 3 kids that got less that 61 and 2 that got over 191 which is the school year-end goal. Which means that Jonathan is in a group of very verbal and intellectual kids. That might be another reason for his recent improvements in language and social skills.

Happy Halloween

What a great day. Jonathan had a costume parade at school. I decided to go last minute as I was concerned that he would notice other parents and felt sad that we were not there. So I went and boy was he happy to see me. That was priceless.



I ran into Jonathan's school teacher and she stopped to tell me that something quite extraordinary had happened yesterday. Jonathan was leading a group of 5th graders and they were doing what he was telling them to do. She said she would give me the details next week in the parent-teacher's conference, but she and the other teachers were so very proud of him and she wanted to share that with me. Later today, she emailed me and told me another story that took place today:

"Jonathan spent recess playing with JXZ. He seemed to be having a blast. As we got in line to come in, he turns to JXZ and says, "I want to be your friend everyday!" JXZ smiled and said, "Me too!" This was great! I just love the sweetness of kindergarten!!!!!!!!!!!!!!!!!!! Jonathan is becoming quite social. :>)"

That brought tears to my eyes!

We went trick or treating in the evening. Jonathan and Vanessa were so excited to go out tonight. Jonathan was dressed as Shrek. Vanessa was dressed as Ariel. And their friend A. was dressed up as Batman. A.'s mom was there facilitating the kids while I was taking pictures. Daddy dressed up as Darth Maul and walked with Vanessa. She had high heels and I was terrified that she was going to fall down on one of the steps. But she didn't. They had a blast. We walked to about 20 houses. And then the kids fought to give chocolates to the kids coming to our house. Great evening.

Happy and Engaged

Jonathan came over to our bed very early (2am). He did it yesterday too. I cannot remember the last time that he did that. The only reason I can think of is that it was a bit colder than usual.

Today Jonathan was in a very good mood, from the moment he woke up to the moment he went to bed. When I got home, he came to give me a hug. I had not even approached him to say hi, and he came and hugged me gently and said hi. That was a very nice welcome.

He has been very interested in activities lately. Activities that are not necessarily related to electronic toys. He wants to play all the time. Yesterday, he pretended that he was a wizard and converted me into a pig, then told Vanessa that she was a witch and Vanessa converted him into a frog. Then he pretended that he needed a vial to get back to normal. Today, when I got home, he wanted to play in the backyard with Vanessa. They went outside to play for almost an hour. He then ate dinner and asked me if he could play a little bit of playstation. Even though he can now reach to put the CDs in the device, he asks first. That is very reassuring.

I started him on melatonin tonight. Just 1 mg. Let's see how that goes. I think that is the last piece I needed to implement for the Vitamin K protocol. I read 2 days ago that Yasko feels that children with the ACAT mutation may suffer from high oxalates. She recommends vitamin K2 among other things. Not as high as the ones I am following, but she already figured it out. Although I have not done the last set of mutation test, Yasko believes that Jonathan has the ACAT mutation based on test results. She has made comments in 3 of his tests results. So I feel that the high vitamin K protocol is another piece to Jonathan's big puzzle.

Here are some pictures from tonight's evening play at the playground:

Starting to Eat Vegetables

Since I can remember, I have been telling myself that I need to teach Jonathan to eat more variety of foods, including vegetables. As a baby, he was great at eating his veggies baby food and then fruits. But as his symptoms got worse, so did his diet. He craved rice carbs and started to reject vegetables and most fruits (with the exception of bananas and apples).

For about 2 weeks I have been researching what to do about his gut, as I know that that keeps being one of his major problems. So I reached out to several yahoo groups and everything pointed back to GF/CF SCD (specific carbohydrate diet). Yasko recommends GF/CF low protein diet. So I feel a bit lost. Nonetheless, one thing I know I need to work on is getting more veggies and fruits in his body. I'll worry about the protein next month.

All week I have been giving Jonathan different veggies. He gagged the first 2 days with the carrots and broccoli. But it is getting easier and easier. Today he ate a carrot, broccoli and cauliflower. And I gave him a small piece of tilapia fish (I know, I am trying to get the mercury out and the last thing I need to give him is fish, but I want him to learn to eat everything), and he ate it and liked it. Big progress.

This past week, Jonathan has been behaving very well. He has surprised us with new behaviors and language. For instance, all week he has been interested in drawing and playing with pretend toys and has not played with his computer or leapster. On Friday, he did not suck his thumb all afternoon and just a small bit before dinner. He has been playing with Vanessa and they have been fighting a lot because they want to do opposite activities. And today, he wanted something, so he went to my dad and told him in his ear (as a secret) to help him put a movie in the basement. He had never done that (speak a secret into someone's ear spontaneously).

We spent the weekend at aunt Nelci and uncle Billy's house. Jonathan was very playful. It was raining, so he watched a couple of movies. But as soon as the sun came out and we asked him if he wanted to go outside, he ran out and told me that he wanted to go outside and play. He and Vanessa played with the dog's agility training equipment.









Jonathan is able to tolerate the VSL#3 probiotics. The first week was rough, but he is doing rather well.

Today I noticed that he cried a lot (usually sign of detox) and his tongue was whiter than normal (usually sign of bacterial infection or detox). We'll see how it is in a couple of days.