Happy Birthday Jonathan!

It was a good birthday. I was scared because this morning he had a bit of an episode. And even when uncle Hernan and aunt Sara came home, he was not very social. But when Alex Javier came (a 7 year old NT friend), he was excited to play with Alex. They went to the basement and played for a while.

He really enjoyed his birthday cake and having everyone sing, he enjoyed blowing the candles and he enjoyed opening his presents. It was a very nice day. We only had family over and 3 friends with their kids.

Great Day! Tooth Fell Off!!!

I had a rough week at work, and did not have time to take pictures or write anecdotes this week. But today I left work a bit earlier to be home by the time the kids got home and spent all evening with them and Javier. It was a fun evening! Let me tell you about the day.

For the past couple of weeks, but his week in particular, Jonathan and Vanessa have been very playful in the mornings. They both get excited to see each other in the mornings. Once Javier gets them dressed up, they start playing in the bedroom (usually kind of rough leaning on top of each other, pushing, pulling, but gently enough to be fun). They then come to the Family Room and continue to play (again, a lot of pressure play for Jonathan). I believe he enjoys the pressure as he keeps asking Vanessa to play more. So this is therapeutic for Jonathan in 2 areas: play and sensory.

When it is time for breakfast, their new hobbie is to sit on the kitchen countertop and help me heat up food in the microwave (no surprises. Jonathan's favorite things are numbers and letters. He can read and he punches in the time as I dictate it to him). They sit there when I prepare breakfast, heat up food, even if we are just cutting fruit. If I have too many things going on the stove, I don't let them sit too close to the range. Jonathan learned how to climb up on his own with a small step ladder. His arms are much stronger since he started going to the GMS gym.

His public school teacher came today to speak about Jonathan's progress based on his old IEP and to go over the evaluation process. On his old IEP, based on her observations, he mastered all but 4 goals (out of 25). I disagree on a few, but given that we have signed a new temporary IEP until the Kindergarten one is ready, I decided not to argue. I asked her to look into activities for the summer for Jonathan (besides ESY) because I am concerned that Jonathan won't have any therapy during the summer time. She said she would look into it.

Today he lost 1 of the 2 loose teeth!. The teachers told Javier that he was very upset when it happened and insisted that he wanted them to put it back (something Javier predicted it would happen). The teachers were able to explain that they could not put it back and by the time we picked him up, he was calm and actually excited to show off his tooth in the bag. The other one should fall off anytime soon.


Given that everyone was in such good mood today, this evening we went out to eat Iranian food (Jonathan's favorite - chicken with rice) and then we went to the movies to see Ninja Turtles. It was a very good evening. Some pictures below. Both kids stayed through the entire movie. At first he covered his ears. Then he seemed to enjoy the movie. At the middle of it, he wanted to go home, but then the action started and he got interested in it again.

We started restricting his gluten intake this week. It has been very good. His attitude has been better, language better, happier, more communicative. I also started him on the Valtrex pills instead of the liquid on Tuesday (I ran out of the liquid one and the pills are very expensive as well, so I decided to finish them up before I order more of the liquid one). He developed a rash in between his upper lip and nose. Today it looks better. But with that, his awareness and language was better today as well. So I don't want to speculate, but food for thought. I also started him on NCD again. He had been on that for many months, but I had run out and I started him back on it again yesterday. Just 2 drops twice a day. Don't want to detox too much.

Excellent article from Discover magazine!

Hi, this is Javier (Jonathan's father) Alex has been busy with work and hasn't had the chance to publish this week. In the mean time, please take a look at this article published on this month edition of Discover magazine. It talks about DAN! and Yasko and biomedicine in general:

Autism: It’s Not Just in the Head

We also recommend buying the magazine, it will help raise awareness. Thanks!

New Theory: Gluten Intolerance Might Be Back!

I observed Jonathan very closely today. His reactions, interactions, questions, interests, etc. I read several postings in the Internet (I am a member of a few Yahoo autism groups). Read 3 times the Autism article that just came out in the Discover Magazine. And suddenly it clicked. It must be gluten again. He has been craving gluten products: pizza, waffles, chicken nuggets. Although I had eased up on the GF/CF diet last September when he started preschool (because it was hard to send food to school every day), I was quite strict at home. But lately I have not had the energy to cook gluten free foods and have gone the easy route: pizza, chicken nuggets, frozen waffles.

He has been gigglely, clumsy, absentminded, has loud outbursts. Looking back at when we started, he seems similar. He has not lost language. On the contrary, he can pretend now, he can clearly express what he wants, he can communicate his needs, he can engage in play if he feels interested. But something is missing that at some point we had during the past year. The first intervention that we ever introduced was GF/CF. I remember that cutting the milk and milk products was hard for us, but didn't make that much of a difference in terms of behavior. But gluten was another story. The change was so dramatic, that after the withdrawal period was over (about 4 weeks), we could tell if he had had a cookie at school that day. Now, after careful observation, I feel that that is what is going on. He has gluten back in his brain.

Despite the difficult day we lived yesterday, we had a pretty decent day today. The best was this morning when he woke up and came to our bed. Again, he was very talkative, very social, wanted to know where Vanessa was, wanted to wake us up because it was daytime, etc. Vanessa wanted her bottle, and Daddy was downstairs working, so Jonathan took Vanessa downstairs and helped Daddy warm up the bottle. He was completely engaged. The came back to my bedroom and he asked what I was doing, what we were going to do today, etc.

I fixed his supplements (a 30 minute ordeal), during which time the kids played together with a balloon and other toys (no TV) and Jonathan seemed really happy and social. After that we went to Starbucks as we do most Sundays. He ate 2 cupcakes and had chocolate milk (first load of gluten and casein). While at Starbucks, he was playful and engaging. When he finished his first cupcake, he asked Daddy for more, and Daddy said no. Jonathan did not react badly, did not scream. He turned to Vanessa and politely asked her if he could have some of her cupcake. She said no (typical selfish 3 year old answer) . But Jonathan did not cry. Asked me to ask Vanessa to give him some. So after a couple of minutes of pointless negotiation with Vanessa, Daddy bought Jonathan a second cupcake. We went to the bathroom and washed our hands and he did not mind. From there we went to Home Depot. He started to get a bit strange but was playing with his portable video game and coped. We got home and I told Daddy I was going to take Vanessa to Walmart to buy the stickers for her putty training program. Daddy called about 1 hour later asking where Jonathan's video game was because he was having a meltdown. He did not want to listen to anything Daddy was saying. Bingo. Gluten had crossed the blood brain barrier and it was making Jonathan irrational.

In the afternoon we went to visit my family. Jonathan did not want to say hello, he went straight to the TV. He communicated whenever he wanted to ask about something that interested him. It was hard to get him to be social. Later, I forced him to sit at the table and eat with us. After he ate he became more social and went to Tio Drew to play with his video game. We was obsessed with the appliances and particularly with the microwave because he could reach the buttons. He asked me if he could heat up Vanessa's milk. I told him that he could do it at home, when he replied that he could not reach at home. Then he noticed that the dishwasher was done, so he pressed a button to start it up again. And he told Tia Malu several times the time as he could read it on the Microwave. So he was social only during events where people entered his world. He did not want to participate in our world.

It will be hard, but I am going to be very strict again with the GF/CF diet for a while. At school it is very hard to do. So I will make sure that he takes his enzymes right when he comes home from school (as he always takes them in the AM), and see what happens. During Spring Break (which starts April 2nd), we will not brake the diet. We should be able to tell the different during that week.

This makes me feel better. At least I have something to work with that is somewhat tangible.

Not Feeling Very Social Lately

This week has been relatively hard to swallow. Jonathan is doing well at school, his language keeps getting better, he seems more attentive to what we tell him, but he is not feeling very social. He avoids any social encounters, he is very VERY whiny lately. If we say something that he doesn't like, he cries. It has been hard to manage. I have found my self screaming more often than what I can control it. I really try to control it, I breathe hard and deep. But boy, is it hard!. On one hand, I know that this is happening because he is detoxing, but on the other hand I feel that it is worse than normal because I ran out of all the Yasko Ora products (Ora-Liv, Ora-Pancreas, and Ora-Placenta) and his body is having a hard time regulating. I placed an order today of 11 supplements. I am hoping that he will be better next Saturday (his birthday).

Last night we went to visit our dearest friends Luis and Brooke and he did not want to join the other 3 kids. He did not want to sit and eat with them (as you can see in this picture, Vanessa, Nico and Christian are eating and Jonathan is standing away, his plate and juice on the table but he refused to sit and eat with them. Later he ate when everyone stood up), or play with them. He had his CD in his hand and all he wanted to do was to listen to it in Luis' PC. Later he even convinced Brooke to put it on the DVD. There was a small period of time when the kids were plying with a domino type game and he joined. But mostly he sucked his thumb and watched TV, or listened to the CD in the laptop.

Today, we had a birthday party. It was a pool party. When we arrived, Jonathan had a meltdown. He was terrified of going to the pool and insisted that he wanted to eat pizza. He started screaming until I told him that we would go find a place that sold pizza. Daddy and Vanessa stayed and his Grandma accompanied us to the pizza place. He ate about 4 slides and was in a much better mood by the time he was done. So we went back. He again was terrified of being there: did not want to go in the pool, did not want to be in the large room with the other people and kids, did not want to eat cake (which is very rare - he never passes an offer for cake). He insisted he wanted to go home. So to calm him down, I gave him my digital camera and he was happy for about 20 minutes.

At home, he just wanted to play video games with a small portable Disney video game player. I sat with him for a while and played with him (helped him win, showed him how to play other games, etc.) and he was completely engaged.

Is it sensory due to yeast? Is it detox? or both? I think both. I am hoping that the supplements arrive by Tuesday so his body adjusts by Saturday.

Days like today make me very depressed, very sad.

My Friend Grover

When I got home tonight, Jonathan received me with a big smile and with Grover. He had Grover give me a "hello" kiss and he was in a very good mood. He went back to the couch and sat him down and started talking to him. Then he came to me and Grover told me that he wanted Mommy's camera. That was great. I took a picture of Grover and Jonathan and then Jonathan told me to take a picture of Vanessa. So I did. This is a big deal because this is the second time he has ever acknowledged a stuffed animal (peluche) and even more amazing the fact that he is starting to use the toys to express his feelings. I posted last week that he had done it once. Today was the second time. And today it lasted for over 1 hour.

We watched NO TV tonight. Jonathan played for a long time with Grover and Vanessa. Then they went to the garage together to check it out (exploring around the house). We ate and Jonathan asked if he could play with the PlayStation. And we told him yes. It is really helping with his hand/eye coordination. He is really getting good.

On a separate note, I sent an email to the school teach asking to add OT and Visual therapy to the areas to be assessed. The teacher indicated that she was going to forward our request to the school psychologist for review and to see if we needed to call in a meeting. I haven't heard. But this school situation is starting to become a bit stressful. Javier has called a few private schools. The Reston Montessori seems open to it, and we have heard very good things about it. I just don't think that Montessori Methodology is what Jonathan needs. We are going to visit them soon.

Jonathan is losing his bottom teeth. The one to the left is almost out. I could almost grab it, but Jonathan wouldn't let me. He is probably going to swallow it. But they really bother him and he plays with them every day. Too cute. The permanent teeth are visible. They almost seem to be too far back.

Comments from Teachers

I had a long day at work today, so I could not spend much time with the kids today and take pictures. However, I did get some feedback from both the ABA therapist and the Public School teacher.

ABA Therapist (9am to 12noon): Jonathan did well today. He needed a few reminders to put jacket on, taking it off, hanging it. But he did well in circle time: attentive, sitting up nicely. He has nearly mastered most of his programs in the book. But we need to continue to focus on engaging in play with peers.

Public School Teacher (12:30pm - 3:45pm): Jonathan started the day sucking his thumb on the playground. Once inside he did a great job. He pretended to be talking on the phone during activities. He went to Kindergarten for 1 hour and did well following directions.

We definitely need to do more play dates with Jonathan. I need to find out how to switch from ABA onto another type of therapy that is more effective towards his current needs. It is hard since I work and cannot do it myself.

Dopamine!

For those of us doing alternative medicine to recover our kids, knowledge is power. The Drs. involved in this alternative medicine share a wealth of knowledge. Particularly Dr. Bernie Rimland (founder of Autism Research Institute and cofounder of DAN! --- passed away recently) and Dr. Amy Yasko. I have been following both protocols very closely. However, I have really learned about the biochemistry of the human body from Dr. Yasko's work.

Dopamine (from Wikipedia) is a chemical naturally produced in the body. In the brain, dopamine functions as a neurotransmitter. Dopamine has many functions in the brain. Most importantly, dopamine is central to the reward system. Dopamine neurons are activated when an unexpected reward is presented. In nature, we learn to repeat behaviors that lead to unexpected rewards. Dopamine is therefore believed by many to provide a teaching signal to parts of the brain responsible for acquiring new motor sequences, i.e., behaviors.

Movement
Via the dopamine receptors D1, D2, D3, D4 and D5, dopamine reduces muscle contraction. Shortage of dopamine can cause Parkinson's disease, in which a person loses the ability to execute smooth, controlled movements. The phasic dopaminergic activation seems to be crucial with respect to a lasting internal encoding of motor skill.

Cognition and frontal cortex
In the frontal lobes, dopamine controls the flow of information from other areas of the brain. Dopamine disorders in this region of the brain can cause a decline in neurocognitive functions, especially memory, attention, and problem-solving. Reduced dopamine concentrations in the prefrontal cortex are thought to contribute to attention deficit disorder.

Yasko's protocol focuses on looking at DNA-based genetic predispositions that may cause chemical imbalances in the body and uses supplements to by-pass these "mutations", correct the methylation cycle so that the body can function properly (e.g., fight viruses and bacteria, detoxify from metals and environmental toxins immediately to prevent accumulation, etc.). In Jonathan's case, he is genetically predisposed to having low dopamine in his brain (COMT L136L +/- and VDR/Taq +/+). And because he has a high load of toxic burden in his body, his methylation cycle cannot function properly enough to make enough dopamine and the rest of the chemicals needed to function.

So, in my opinion, low dopamine may be a big reason why our kids have low attention, stimmings, strange movements, memory problems, etc. We pay little attention to supplementing to increase dopamine. I am going to order Yasko's Nerve Calm and Mood D RNAs which theoretically help with dopamine in the brain.

In the following sequence of photos, you can see how Jonathan is all over the place as he plays Bingo with Daddy. He really wants to play, but he wants to watch TV and he wants to move around and simply cannot concentrate. We are seeing this trend more and more lately. I am going to send a post to Dr. Amy for her advise on what to do here.

He is excited as he sees that wheel turn

Daddy prompted him a couple of times to check his board for a match. He found a match.

Lost focus and started watching TV. Daddy called his name several times.

He got excited to play again .
This picture clearly illustrates how he is not concentrating on what he is doing. With his right hand he is covering the matching number while he is staring at the wheeling waiting to turn it again. He ended up covering the wrong number. The irony is that his biggest obsession is numbers and letters. Something is clearly going on his his little brain.

Despite the lack of concentration that he is showing lately, he had an excellent day at this OT class today. The therapist indicated that he was able to play with shaving cream without issues for the first time. And that he also completed other activities that he hated in the past.

We went shopping and he enjoyed being inside the cart's car with Vanessa. This is a huge thing. He did not tolerate feeling pushed or be so close to Vanessa and we had to use 2 carts. So again, some regressions while we see improvements.

Ups and Downs Today

Our children are so moody, it is sometimes depressing. One minute (which could extend to days) they are engaged, happy, social, etc., the next minute they withdraw. That happened to Jonathan today. I have not added any new supplements. I did run out of Yasko's enzymes. Perhaps that made a difference.

Last night, we went to a friend's house and since we knew we were coming back very late, we asked Grandma to stay in our room and sleep over. When we got home, we slept in the guest bedroom. In the morning, when Jonathan woke up and went to our bed and saw Grandma, immediately asked where "Mommy" was. And even insisted in talking to me. He called me (he knows my cell phone number by heart) and asked me where I was. I told him I was in the guest room in the basement and he came down to see me. He was so excited to see us. This is huge. Lots of motor planning happened here.

However, his OCD kicked in and he listened to his Tecnomerengue music CD most of the morning. Despite the fact that Grandma tried to get him to play with her and Vanessa. After I gave him his morning supplements, he stopped playing with his CD and started playing with Vanessa and with some toy horses we have, they wore our shoes, etc. They had a fun hour of play.

In the afternoon, we called our friends Brooke and Luis to arrange a "play date" with the 4 kids. We met them at Rio Grande and had lunch with them. Jonathan was not interested in Nico and Christian. We brought him pizza. He eat his 2 slides and then got interested in the machine that makes the tortillas. The 4 kids were watching the tortillas being made. That was fun to watch.

We later went to a plaza area outside the restaurant to play with a ball. Jonathan did not want to play. At first, he sat on the stairs and watched carefully the other kids playing. At parks he usually plays soccer, but not today. After a little while, he simply withdrew and started rocking. I broke that quickly asking him if he wanted ice cream and he immediately got excited about it. We ate ice cream and came back home. It was obvious that he was not enjoying himself and it was sad for us to watch him that way.

At home, we spent 1 hour doing homework (GMS sends writing and cutting exercises weekly). He did well the first 20 minutes. He then started to lose focus. By the time we were done, it was like pulling teeth. He did not have any focus. He loves numbers and letters, reading and writing, but I think that his body would not really sit still any longer.

I made several observations today.

Inappropriate Behavior:

• Continued OCD behavior with music CD
• Humming
• Seeking sensory input (craves being hugged, rocks, pinches ear)
• Lack of patience (if he asks for something, it has to be right now. He has no tolerance for waiting)
• Defiant - lots of "no". His attitude is "his way or no way"
• No interest in toys
• More frequent thumb sucking
• He cannot answer "why" or "how" questions appropriately. He either gives an answer that has nothing to do with the question or sucks his thumb and withdraws.
• Some ADD trails - cannot sit still for more than 10 minutes and do homework or watch TV or do anything. He cannot focus. Moves around. Forgets the task. Even with his CD, he will put it on one device for not more than 5 minutes and switch to another CD player, DVD or PC. He will never listen to one song in its entirely. Nowadays the only thing he will do for 30 minutes straight is play with PlayStation. And he is getting quite good at it!

Positive Observations:

• Better abstract thinking - he knows what day of the week it is and what yesterday and tomorrow are (e.g., today is Sunday, he knows there is no school on Sundays. Tomorrow is Monday and there is school. And Yesterday was Saturday. Can't say what he did yesterday yet)
• His expressive language is still "rote" but he can put more words together to express his needs and his pronunciation is very clear. Also, he clearly understands (FINALLY) the "I" and "you" pronouns. "He" and "she" are still a problem. And he has no true understanding of "we" and never uses it spontaneously.
• Expresses concern for Vanessa constantly and must know where she is all the time.
• He is using toys to express his feelings - today he used a stuffed cookie monster to tell me that cookie monster wanted to go to the park. He has also used the CD to tell me how he feels.

I am going to focus this week on improving his supplements. I collected stool for the DDI Comprehensive Stool Analysis. That test is going to tell me how his gut is doing. I may need to implement the GF/CF diet again. I am also waiting to hear from our insurance whether or not they are going to cover the urine tests so I can do another one. I wish I could do them weekly. I just cannot afford them weekly without insurance.

Another Good Day!

Jonathan and Vanessa spent all day with Grandma and uncle Hugo (daddy's twin brother). They went to have breakfast at Silver Diner, then to the Zoo and then came home to play with lots of toys. Jonathan enjoyed the Zoo. So did Vanessa. Mom and Dad spent the day at an IEP conference. Lots of information.

I will add pictures tomorrow. But I am happy that he had a good and engaging day today.

OCD is Better These Days!

The past couple of days, Jonathan has not even asked for his Tecnomerengue music CD. On Wednesday, I received feedback from his teacher at the GMS Institute that he had one of the best days at school since he started last September 2006. His afternoon preschool teachers wrote a couple of notes that he was in a great mood. And today again he was very engaged with Vanessa and us even. And his receptive language seemed better than ever. This afternoon he diverted from playing with toys as he wanted to take pictures with all the digital cameras we have in the house (OCD). But I quickly told him that he could only use his Disney digital camera, he took several pictures of Vanessa and easily transitioned to something else. We played together with some small dolls and did some pretending (I am trying the Floortime method, but it is VERY hard), and did homework and watched the beginning of Over the Hedge together with Vanessa. It was a nice evening. No screaming, or crying.

One of the feedback that we got from the GMS Institute teachers last week was that he needs to do a lot more homework. He really needs to exercise his fine motor skills (writing, painting, cutting, etc.). And on Tuesday, when Jake Greenspan saw him, he could quickly tell that Jonathan needs visual therapy. He does not see what is in front of him. His brain does not process it well. I could tell easily these days as he was screaming for his CDs, yet they were right in front of him on the table. But if I used words to describe where they were, Jonathan could quickly find them. Jake gave me the name of a good visual therapist in the DC area. I will call next week to set an appointment. I need to check if the insurance will cover it or not before we jump on that wagon.

Today, when we did homework, I could tell that (1) he has trouble writing a line from point A to point B if the route is not clearly defined (like a street with lines). If it is faded and he cannot see the path clearly, he cannot make the connection in his brain. The exercise shows the same path 3 times, the first is clearly defined, the second one is faded a bit, and the third one has just A and B and he should use what he learned or could even see from the ones above because the brain is able to fill in gaps. But he can't. This action of filling in the gap is usually a function of GABA (a substance produced by the pancreas). I am supplementing it, but I think I need to add some more. And the same thing happens to the language. (2) The second item I noticed is that his posture to cut paper is not appropriate. Even though I have been taking him to private OT and the GMS does OT, he is having trouble here. He spent over 20 minutes cutting a piece of paper. It is good to see it now before his Kindergarten IEP. That way I can really fight to get an OT for him (that is if we decide to send him to Kindergarten instead of holding him back. Whichever way, he needs more work in all these areas: OT, Sensory, Visual, Auditory, Fine and Gross Motor skill).

Other than that, I am pretty happy with his behavior these past 2 days. He has been a little hyper, but he is detoxing (I am pretty certain he is). I also think that he needs extra yeast herbs. I will buy some tomorrow.

Good Eval with Jake Greenspan

We met Jake Greenspan today (Dr. Stanley Greenspan's son). We had been waiting 1 year. Dr. Greenspan's book (Children with Special Needs) was the first book I ever read regarding autism. I was intrigued on Floortime. I later read "The Boy Who Loved Windows" and got sold on the idea that Floortime was a great therapy. But honestly, after reading the books and trying it on my own, I realized how hard it was to do. Kelly Dorfman, a nutritionist in the DC Metro area, told me that Dr. Greenspan's son had opened a DIR clinic and that I should go see him. When I called, the wait list was about 1 year. I added Jonathan's name and waited. But it finally came today.

Jake was great. We spent 3 hours with him and he was very detailed. He really observed Jonathan to the tiniest detail while he asked us questions and gave us directions. I must say that I learned a great deal today. He will send us a report in 2 weeks detailing his recommendations.

One thing that shocked me was that he thought that Jonathan was ready to start working on Milestone 6 (those of you who have read Dr. Greenspan's book - there are 6 milestones to development. DIR added a 7th). I was excited to hear that. He really engaged well with us and Jake and although his play skills are still rudimentary, they are there.

Overall, we had a great evaluation and I can't wait to get the report and plan our next steps. He mentioned that we need to do 6 to 8 20-min sessions a day with complex emotional thinking. Jonathan can open and close circles of communication, but we need to make it rather challenging. He needs this so he can start interacting with his peers.

Roller Coaster of Emotions

Today was an interesting day. Jonathan woke up all excited that it was Sunday. He came to our bed and told us that it was daytime and asked for Vanessa. Dad told him that Vanessa was in her room and told Jonathan to go get her. He was so excited. And even though he had his CD in his hand, he wanted Vanessa to accompany him to his room to read books and play. It was really nice to witness (while I was still trying to get some sleep).

However, at around 11am, after he had listened to his CD for 10 times, Dad told him no more CD and he had a meltdown. I don't remember seeing him so so sad in a long time. But despite that, I was happily shocked by the way he communicated with me. I had no choice but to break Dad's command. He came to me and said: "Mommy, I'm so sad. Dad yell at me. Too loud. I want my CD. I don't want to play with toys. I am so sad. The CD is so sad. The CD don't want to take a break." A new tiny milestone. He was expressing himself through the CD.

He hugged me a lot today. And every time he hugged me, he rocked. Another regression. However, his hugs were very emotional. As he was looking for support. He did it throughout the day.

We went to visit our extended family and he did quite nicely. Interacted very well with our uncle as he asked him for a particular movie, followed him to obtain it and followed directions to put it on the DVD. He listened and followed directions quite nicely.

Overall, despite the OCD, the rocking and the humming (he hummed all day), he had pretty good language, and followed directions nicely.

Great Connection with Vanessa

Jonathan had a better day today. He played with sister Vanessa everywhere we went (Starbucks, Cactus Cantina (restaurant), playground, home). They held hands, hugged, followed each other, sang together, argued in the car (Vanessa was telling Jonathan what to do and Jonathan did not agree and told Vanessa what he was going to do instead. It was quite comical to witness). He carried his darn CD everywhere, but he really connected with Vanessa all day. He played with the CD in the computer for not more than 10 minutes at a time. That is a good sign.

I stopped the gut herbs and started giving him twice the probiotics. We'll see how he does.

Playing with my Hair Again

He'd better be detoxing like crazy because all the bad habits have returned and more. Shortly before he was diagnosed, Jonathan was obsessed with playing with my hair. He would not look at my eyes, just play with my hair. After the diagnosis and after I learned a little bit about the odd behaviors, I started playing with him so he would look at my eyes. I would put my forehead against his and look at his eyes and tell him in a playing manner to look at me because I could only see one eye ("un ojo" in Spanish). We played like that for a long time. Eventually he stopped it. His eye contact had gotten almost perfect until this week. Today I asked him to look at me and he just wouldn't. Tonight, we went to a restaurant with our best friends (Brooke and Luis), and he refused to play with the other kids, insisted that he wanted to sit on his chair until dinner was served and then he came to my laps and started playing with my hair and putting his face against mine and saying "un ojo". I feel very connected to him this way, but I also know it is not normal. So I am happy and sad at the same time.

What is confusing is that he is regressing on many behaviors yet he is not losing language. Although today he did not remember our friends' names. However, he was able to easily articulate what he wanted and didn't want to do. I need to order the Urine Toxic Metal test to see what is going on. I also have the suspicion that he has bad bacteria in his gut that I have not been able to kill with the herbs that Yasko recommended. I need to do another comprehensive stool analysis test soon.

Tonight I started giving him extra Cod Liver Oil and extra Yasko HHC Multivitamins. So I expect the regression to be even worse over the weekend.

Obsessed with Order

I noticed that in the past 3 days, Jonathan has been obsessed with ensuring that things are in order. If he is watching a movie, and the movie ends, he wants it out of the DVD and will not transition to the next activity until it is done. Same with the PlayStation, same with his music CD. I took him to a public restroom today and he would not quit telling me to lock the door until I did.

This behavior is not normal in him. So it might be a reaction to Valtrex. If so, that actually makes me happy. Based on anecdotal events, I have heard that Valtrex produces regression. In some kids it lasts about a month. I just started Valtrex up again last Thursday after having taken a long 5 month break.

Per Dr. Yasko, Jonathan has severe B12 deficiency. I need to give him Methyl B12 in every shape or form. If I give him too much, he makes too much ammonia and that throws everything off. So I am doing the shots 3 times a week, the nasal spray daily (2 squirts) and I give him B12 in tablets. I have not done the patches yet. I had run out of the shots and they arrived today. I put one tonight. Hopefully he will do fine tomorrow. I hate it when he regresses.

Fun at the Shopping Mall

Last night we went to the Shopping Mall so Dad could get a haircut. I took the kids to the playground with a bit of skepticism because Jonathan did not want to play in it 4 days ago. To my surprise, he was very excited to play. He and Vanessa ran around, got on all the equipment and then Jonathan decided to pretend that he was going to buy dinner. He started to run outside the playground into different areas to bring me different kinds of food. Another 4 year old spotted Jonathan playing and asked if he could join, and Jonathan said yes. Then Vanessa joined. That was fun to watch.

He is still very very VERY obsessed with the CDs. But he had a better day yesterday!.

Regression not Preventing Other Advances

It has been a week since I posted. I was very very disappointed with Jonathan's regression. And it got even worse when I re-introduced Valtrex on Thursday February 22, 2007. On Saturday Jonathan started humming again and his obsession with the CDs got out of control. I know it is due to detox (both viral and metals), but boy is it hard to re-live.

Today he had a great day though. When he woke up, he already knew it was Monday and it was school day. So he did not even approach his music CDs. In the morning, he came down and told me he wanted breakfast and then had an argument with his Dad because he did not want to watch TV, but rather he wanted a DVD. He said: "Dad, I don't like TV. I want a movie in the DVD. Got it?". He is saying "got it?" to us a lot.

His OT was very happy today to see him play with other kids. She introduced him to a high functioning 7 y.o. and Jonathan started leading the play. When he got home, he and his sister went out to play with the snow. Yesterday he cried because he did not want to touch the snow. Today, he did not want to come in the house.

My big "wow" for the week is the fact that he learned an abstract concept and I don't know how or when. But last week he didn't understand it. He learned that when he is playing video games (PlayStation), he is not supposed to die. The past month, we introduced PlayStation to him because a couple of kids in the neighborhood he plays with were making fun of him because he could not play. He is great with video games. He has several kiddy ones like Leapster and others and he can play like a professional. But PlayStation was different. In a month he has gotten really good (he already reached level 4 of one rather hard Disney game). But he loved to get killed. Within the past 24 hours he learned that dying is actually not good, so in a manner of survival, he reached level 4 in just a day. Today he came to me and said: "mommy, help me please with level 4. It is hard and it is scary. I don't want to die. Please help me play". Yes, he used that much language :)

Regressive Behavior in the past week:

• Paying with music CDs for hours - this includes playing the CDs in every CD or DVD player in the house (4), in every computer (3), opening/closing the devices, fast forwarding, etc.
• More tired than usual
• Humming
• Mild hyperactivity
• Some sensory issues - especially touch

Improved Behavior in the past week:

• Better abstract thinking
• Better organization of sentences - more conversational language
• Feels a bit more pain when he gets hit than usual
• Lying :) - if I tell him no, he says that his dad said yes

Great Dentist Visit

Jonathan and Vanessa had their 3rd dentist visit. Today was the best visit ever. Jonathan remembered everything he had to do (except spitting when brushing his teeth. He still swallows). He let the Dr. clean his teeth, squirt water in his mouth and suck it with the suction device, and scrap plaque out. I am so proud of him. He was a trooper. His bottom front teeth are lose. He may lose them any minute :) The Dr. found a couple of spots on 2 molars that may turn into cavities. Despite the fact that I've heard that it is best not to put fluoride on our kids' teeth, I asked the doctor to put it on those two teeth. I don't want him to develop cavities.

Regression May Be Due to Detox

I got Jonathan's Urine tests results over the weekend. It is not showing that he is dumping loads of metals, but Dr. Yasko made a note that he is starting to detox. His Amino Acids are more in balance and his Beta-alanine is in the red area, which indicates that he is detoxifying if the methylation support is in place (which has been in place since October 2006). I don't like the fact that his obsessions (playing with music CDs in different CD players) are back, but he did make a couple of verbal remarks this weekend that looked promising. So I will be patient.

Short Week of Therapies

Due to the snow in the DC Metro area, the public schools have closed all week. Jonathan spent all day at the daycare again. Today, fortunately, his ABA Shadow could make it to the daycare. She indicated that he had a good day. He needed slight reminders to pay attention to the class and sit down with the group. They did a group play and Jonathan was not at all interested in participating. But on the positive spin, he is doing much better transitioning from activities.

The schools are again closed tomorrow. No SMILE (Sensory Gym Program). No ChildFind (Public School Pre-school Early Intervention program). He normally has 3 hours in the morning of SMILE or ABA and 3.45 hours in the afternoon of ChildFind. So he normally spends little time at the daycare. Abuita (Grandma) is going to try to take him snow sliding so he doesn't have to stay in the daycare all day. He has trouble tolerating that.

Happy Valentine's Day! - No School Today

We had a snow/ice storm last night and all the schools and daycares closed today. The kids missed Valentine's Day at school and exchanging their Valentine's cards. But they had fun at home while Mom and Dad tried to work.

Improvements Since December

Even though Jonathan had difficulties at school during the first 3 weeks of January 2007, he actually had a tremendous developmental improvement during the past 2 months.

The biggest breakthrough is amount of complex pretend that he has developed playing with Vanessa. His imagination is taken off. They play with the kitchen where they cook and eat, they feed themselves, and us, animals and babies. They pretend they are going to school and Mommy is one of the teachers and Daddy is the other teacher. Jonathan knows the names of the 3 schools he goes to and pretends he goes from one school to another. He also pretends he is Dad and he is going to work. They love the movie Monster House and now pretend that a robber house that they have is the Monster House and they feed the house. It is quite remarkable to see them come up with ideas.

The other great improvement is his ability to tie events together in his mind. He is now able to tell me what he ate today, what school he went to, and even what games he played and what stories he read. He really liked reading "Peter and the Wolf" last week and asked us to go to the Bookstore on Saturday to get it for him. That is a complex motor planning thought :) .

I stopped the Strep herbs for about 3 weeks and I believe that the Strep returned. He had eased up on the obsessions but they returned (specially with playing music CDs). This week he is playing more than being obsessive. I started giving the herbs again 2.5 weeks ago. Nonetheless, there are many areas where there is still a lot of work: expressive language is still at about 3 years old (he will be 5 in 1 month), imagination is still at about 2 years, social skills is an issue, his receptive language is also at about 3 years old, and he is starting to show ADD trends.

Besides the EDTA suppositories, I also started a new chelation therapy: DMPS suppositories. So far I have given him 3. I can see great cognitive improvements the day after. I want to be more aggressive with chelation therapies, but I am terrified of IV chelation. I also started giving him the Methyl B12 shots along with the Nasal spray. I did an Amino Acids urine test and a urine toxic metal test but have not received the results yet.

Difficulties During January

Jonathan had a major set back in January. In order to re-arrange his daily activities so I could start my new job, I worked with his current daycare to change his schedule from half days to full days. In doing that, I changed his morning Pre-School classroom to another room full of 5 year-old children (25 of them). Jonathan the first few days was confused but tried to cope. The second week he was not very happy to go to school but did not complain much. The third week he had a meltdown. He told me that he was scared of going to school. That he was "different". And other comments. I spoke with his shadow therapist and she told me that Jonathan had completely regressed emotionally and socially in that room. I spoke with his afternoon public school teacher and she said that Jonathan had been very sad since the beginning of the year. I went back to the daycare and talked to them about changing Jonathan to a room with younger children (ages 3.5 to 4). The week we did that, he completely changed and started enjoying going to school again.

I am concerned because I am not sure that he is ready for Kindergarden. The County is going to do a full assessment this month to see what kind of services Jonathan is eligible for. We are thinking about holding him back 1 year, so he would repeat preschool this September and go to Kindergarden when he is 6. We have to find a full-day private preschool that accepts children with high functioning autism.

Jonathan was selected to be part of NAA's 2007 Calendar. His picture was selected to symbolize "Hope" at the end of 2007 (December 2007). Let's pray for a miracle!

Purchase one to help donate money for research. The website is: http://www.nationalautismassociation.org/proddetail.php?prod=2007Calendar

Poor Kaiser!

Jonathan and Vanessa have decided that our dog, pit bull mix named Kaiser, is their new toy. They chase him around the house and then hug him until he gets tired and pulls away :) Poor Kaiser. After about 10 minutes of this, he just goes to his cage to relax.

Jonathan is more curious about playing with toys now. He is not playing with electronic toys anymore. We bought him a small video gameboy and he does not spend more than 1 hour playing with it. He is now starting to engage more on some pretend play (like pretending he is a doctor and taking Vanessa's temperature) or pretending he is cooking. This is an exciting moment. He is showing some skills that were never developed, so that brings more hope. Yesterday, his ABA therapist told me that she was shocked that he was defiant with her. It is good to see the attitude demonstrated appropriately. We just now have to watch it because he might try to use that too much.

New Hobby!

Jonathan is now interested in helping me mix his supplements. He helps me cut the tablets, crush them in the mortar, then mix them in his banana baby food. I normally cut all the pills for 1 week and organize them in a pill's container. I separate the morning and evening sets. I feel like I am a pharmacist when I prepare his supplements. But I can see the difference, so I am happy to do them.

Jonathan is very curious now. He comes home and immediately asks what I am going to do so he can help. Granted, he is still not as advanced with his play skills as I would like him to be, but just the fact that he wants to imitate is a great improvement. He is also interested in being in the kitchen when we cook. The other thing that surprised me yesterday was that I asked him the names of his teachers (per school) and he told me. First time ever I didn't have to ask him several times and prompt him. Also the names of his friends (he has 1 friend in each school - he is going to 3 schools) and he remembered them too. I am very proud of him. His memory is sticking more and more.

Yesterday we went to the movies to see Happy Feet and he loved it, laughed when appropriate, was upset (a bit only) when the penguin was sad, was scared at a couple of parts but coped well and even pointed out to me that a shark wanted to eat the penguin.