Sunday, September 30, 2007
When I came downstairs to the kitchen, my dad told me that Jonathan went downstairs, laid down with him while he finished watching a moving, and played with him a bit then came up. He has gone downstairs before to see my dad and sometimes play with his laptop and other times jump on his bed. But the fact that he laid down in his bed and watched the end of a movie with him is pretty awesome.
I told Jonathan that today he could not play with any electronic toys. At first, he was not too happy. Cried a bit actually. But then he adjusted and I am glad that we did it. He played with Vanessa all day. ALL DAY. All pretend play. They pretended they were going grocery shopping (that was cute) and whenever I needed to get something from the pantry, he charged me. That was awesome. They cleaned. Pretended to be at a hair cuttery and Vanessa took one of her toddler's scissors and cut off a lot of her own hair. They made up stories after stories. I know that RDI concentrates on no electronic toys. So this is a good start.
One of his friends from the neighborhood came over. He also has high functioning autism. His mom called to arrange to take the kids bike riding. Jonathan and Vanessa were eating lunch when they came over and Jonathan got really happy to see him. I told Jonathan that he had to finish before they left. He did and asked me if he could leave the table to go play with A. I said yes. He went to play with A., but A. was obsessed with trying to talk to his mom. Jonathan looked at A. and said something to him. A. didn't pay much attention to Jonathan, so Jonathan said to him "A. look at me. Your mom is talking to my mom. Do you want to play?". And A. said yes to Jonathan. Both A.'s mom and I turned quickly and smiled. That was good.
I think that Jonathan is making a nice turn around. About time because that last 2 weeks have driven me crazy. His head is clearer (maybe the extra diflucan (prescription to kill the yeast) or the effects of the HBOT). Whatever it may be, I hope it lasts.
It was an outstanding day. It was hard at times, as he would ask if he could play a bit with his leapster or computer. But we gently kept telling him that not now, and he would turn around and play more with Vanessa. Towards the end of the day (around 7 pm after dinner), we let him play a little bit of playstation. When his uncle Hugo came over, he came down very excited to greet him and said "Tio Hugo. I am playing playstation Cars. Come on, let me show you!". About 30 minutes later, Jonathan quit the playstation on his own. Great sign.
In addition, he ate mashed potatoes today. Victory!!!! He always gags, but today he ate it without complaining or gagging.
Saturday, September 29, 2007
His gut is a mess again. Therefore, he is going back to a full Gluten Free / Casein Free / Soy Free diet. I paid close attention to him that past 2 days, and he looks and behaves like he is high, he is on drugs again. With a bad gut, comes a leaky gut, which allows gluten and casein to go into his bloodstream and ultimately his brain. So, back to square one.
His yeast is high again. But a yeast free diet is really hard to do. No sugars, no chocolate. Almost impossible. I will reduce it as much as I can, but I will rely on Diflucan and probiotics to help me with the yeast. High yeast also makes him a bit druggy and increases his sensitivity to touch and sounds.
We went to a birthday party today. He had a little bit to eat but seemed happy and energetic. When we arrived, he was not interested in the playground or in anything else. He laid down on a bench. Then he sat down next to me and refused to play. It really killed my heart to see him like that. We almost left because I just couldn't see him so withdrawn. But Vanessa wanted to play, so we stayed. 1.5 hours later, a couple of friends came to the party with their kids and Jonathan really likes to play with their son (A.). I don't know exactly why. He started playing with A. and the other kids in the party for a long time, until we cut the cake. It made me happy to see Jonathan so happy and engaged. Like his DAN! Dr. said, the important thing is that he CAN do it.
There is something new that I want to investigate and try. It is a high Vitamin K protocol, that calls for higher dosages of Vitamin K2, Magnesium, Vitamin A and sodium bicarbonate. The purpose of this protocol is to bring calcium under control, normalize the immune system, and reduce calcium oxalate crystals found in autistic kids and that slows down the excretion of metals during chelation. K2 will slowly get rid of calcium deposits, and will put calcium back into the bones and teeth. Elevated circulating calcium causes all sorts of problems, including neurological problems. Once I get the gut under control, I am going to give this a try.
Friday, September 28, 2007
We went to get him a haircut this evening. He seemed more sensitive to the clippers than last time (his yeast is truly out of control), but cooperated. The lady that cut his hair told me that she didn't mind that he was moving a lot and being sensitive because she has several autistic clients and she learned to be gentle. I told her that Jonathan had autism and she just could not believe it. She told me that it couldn't be. He talked to her, he looked at her, laughed at the cartoons, he talked to me, seemed "normal" to her (as she said). She then told me about 3 of her clients and how they just won't look at her but they have gotten better with the clippers and are very loving. When Jonathan got out of the chair, he was shocked to see his hair on the floor and asked if that was his hair. She looked so surprised. She kept staring and kept telling me that if I hadn't told her, she would have never guessed. She then went to talk to a coworker and pointed at Jonathan telling her that he has autism, and the other woman came to me asking me how come he did not seem autistic. Her nephew was 7 years old, learned to speak at 6 and but still was very delayed and autistic. I talked to them again about therapies and biomedicine, etc. They then called Jonathan up and offered a treat and he was thankful and happy and turned to tell me "let's go mommy, I am hungry. Let's go eat". The look in their faces was priceless. So we left.
I have to admit that to get that kind of external assessment is very encouraging. I notice the tiniest bit of regression in my son and it kills me. But it helps to hear comments from people that are exposed to kids on the spectrum and get a reaction. Because he really has come very far. But he is such a trooper. I couldn't be more proud of him.
We went to a restaurant and he was very playful with Vanessa. Then we wanted to play tic tac toe with daddy and paint and just be silly. When he got bored of waiting (we waited too long), since I didn't let him and Vanessa go wild, he asked for my phone. It was inevitable, but it didn't upset me. He is starting to turn around. This is most likely the consequence of the HBOT and I need to just ride it. 6 more weeks for the effects to wear-off.
I love having a focused goal. We won't do HBOT for another 4 to 5 months, so I am going to concentrate on that gut, varicella and mercury.
Thursday, September 27, 2007
One of the things that we talked about was Jonathan's Porphyrin test results. And the conclusion is that we need to get more aggressive with the chelation. I won't do IV. But we are going to increase the strength and frequency of the EDTA suppositories. I would absolute love to do Yasko's metal program, but we cannot afford it right now. The suppositories are covered somewhat by insurance. So I'll start with that, and then add the metals program.
The other big issue is his gut. I had it in very good shape and something happened to him after the 60th HBOT dive when we started diving at higher pressure. He got a bad die-off reaction, and since then his stools are very foul. They are well formed but boy are they stinky. Sorry to talk about stools, but this is very important. And I won't increase the EDTA until I see that his gut is better. I am going to add a different probiotic (stronger) and I will also increase his diflucan from 5ml to 10ml (gradually of course). Once I see that the stools are "normal", then I am going to increase the EDTA and the diflucan. I am also going to add DMPS suppositories in about 6 weeks. Although he does not have the SOUX genetic enzyme mutation, the fact that he has a CBS upregulation problem I know will cause his taurine to increase. So I'll work hard to keep it down. But I need to chelate that mercury and EDTA alone is not going to do it.
Here are the results of his French Porphyrin test results:
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1.5 - 3.5
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0.4 - 0.8
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1.0 - 2.9
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2 - 5
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50 - 90
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High levels of 5cxP, prcP and cP
Jonathan fits this profile
High levels of 6cxP, 5cxP, prcP and cP
Jonathan slightly fits this profile. His 6cxP is just a bit high. To some it may not be considered high
High levels uP and cP
Jonathan does NOT fit this profile
High levels uP
Jonathan does NOT fit this profile
Porphyria Cutanea Tarda:
High levels uP and 7cxP
Jonathan does NOT fit this profile
Monday, September 24, 2007
He always sort of withdrew into his own world after each vaccine. But somehow, he made it back out. But those vaccines always left him a bit handicapped and by they time he had the second flu vaccine when he was 27 months, he could not recover from that last one. He developed normally although a bit slow but always reached his milestones. The first Hep B 24 hours after birth made him lose some motor planning and muscle tone (e.g., lost ability to latch onto the breast to eat) and developed thrush (yeast in his mouth), but he caught up. With the DPT, he was delayed in rolling over and started to develop ear infections. The pneumonia at 9 months gave him tons of yeast (candida) and made him anxious and he developed sensory integration problems (could not be touched, sensitive to sounds and some textures, etc.) and severe anxieties. The first flu shot at 11 months made him lose the ability to play appropriately with other toys. The MMR at 13 months sent him into a world of numbers, letters, shapes and colors. Major obsessions. The 18 months vaccination delayed his speech. He had said a couple of words and lost those words. He also lost some eye contact and had a really high threshold to his surroundings so he would sometimes not respond to his name and would zone out. We checked with the pediatrician and he said it was not autism. He was in his universal world but would come out at 3 years. He started saying words again at 23 months. He became obsessed with the VCR (pushing videos in and out) flushing toilets, turning lights on and off, closing doors (doors were a big one), etc. But he was still adorable and playful. At 27 months he received his second flu shot and at 28 months he stopped talking. He developed terrible tantrums. He lost eye contact. He would not respond to his name. He was not interested in playing with toys. Walked in tip toes. And he lost the ability to understand language. We got scared and requested an appointment with a neurologist. Today 3 years ago such neurologist gave us the bad news and told us that he would most likely need to be institutionalized.
Today I am glad to say that I disagree with such neurologist. Although he is not fully recovered yet, he is mainstreamed and is a beautiful happy boy.
Sunday, September 23, 2007
Today Jonathan continued to show signs of regression. And it is very frustrating, especially after reading Jenny McCarthy’s book and watching her son on 20/20 (TV show). I hope that he comes out of this soon and makes another leap jump towards recovery. I have decided to start investigating other therapies outside of Yasko such as the high dosage Vitamin K and Vitamin A, adding DMPS suppositories next week, and more intense play therapies.
Characteristics observed this weekend:
- Toe walking when he is happy/excited
- Will not respond to his name unless we scream at him or touch him
- He is more hyper than normal
- He is repeating what he watches on TV or the computer as pretend instead of inventing something on his own (such as Green Eggs and Ham or pretending to be his Kindergarten teacher)
- He is not doing any pretend lately. Just wants to play with electronic toys or rough with Vanessa
- Very defiant
- Parallel plays with other kids instead of joining them in play
- Lost some of his eye contact
- Craving carb foods
I hope that this regression is temporary, perhaps due to the HBOT. We are going to visit his DAN! Doctor this week and I am going to discuss other alternatives with him.
Saturday, September 22, 2007
We went to visit our friends this weekend and they had another couple over with kids the same age as ours. And Jonathan's behavior was so different and odd, that our friends started up the Autism conversation which led to explaining to the new couple that Jonathan had autism, which made them say "ohhhhh, ok".
I finished reading Jenny McCarthy's book today and found myself comparing notes. I really liked her book. But it is inevitable not to compare. And kept wondering "why if she only did the conservative biomedical approach, did her son recover?" I thought about it all day. We have done so much more than she describes in the book for the past 3 years and Jonathan still has autism. His language is really not age appropriate at all and he still has social problems. One thing that I am glad we didn't have to live is seizures. So I know that she had it rough. I lived it through her book and cried. I cannot imagine. But why do some kids recover more easily than others? What exactly makes some kids such tough nut? Is it the amount of mercury injected into the kids? Is it the amount of hours of behavioral and speech therapy? Who knows. But I am very happy for her though.
I was able to relate to her quite a bit. And all of sudden I felt this huge sadness for not having had the time lately to stay on top of the new therapies, for not handling my finances better so I could do more tests. I am a bit lost actually. Jonathan has regressed and plateaued and I am not sure where to start. But her book was very good, inspirational particularly for the new moms out there, and funny. And she has a section in the back for how to get started. I wish I had had something like that 3 years ago. And I applaud her to getting the word out. I really like what she is doing and I thank her. Someone is going to start listening hopefully. I know she won't stop until someone starts doing something more drastic.
I need to fix my own situation and try to read and research more, try new things, never give up. I need to organize myself so that the insurance pays more. This is ridiculous. I wish I had the luxury of being a stay-home-mom. But you can only do so much, right?
We went to a soccer practice today and Jonathan had a nice time. He dropped the obsession with his teacher today and has been a bit more playful. He is obsessed with Dr. Seuss' books and movies though. And today, when we went to our friends' house, we noticed the Jonathan parallel plays more than what he participates. It is a big upgrade from before, but yet. I am so hungry for "typical behavior" that I can't but notice and feel outraged sometimes.
I have to note that he has made a 200% improvement in the past 6 months since we started the HBOT therapy. But we are not done/there yet.
Friday, September 21, 2007
We went to visit our friends for dinner and they had invited another couple with kids. There were 3 5.5 year-old kids and 3 3.5 year old kids. 5 of them played together and Jonathan stayed near the TV. I fed him because I know he needs to eat to function in a social group. About 30 minutes after, he joined the other kids. About 20 minutes later I noticed that he was talking to them as if he were the teacher. No one was paying attention to him. He then turned to the parents and came over saying things like "excuse me everybody, eyes on me. ..." and continue to give us some type of direction of things to do. After about an hour, I talked to him and asked him to stop pretending to be his teacher. He asked me why. He wanted to pretend he was his teacher and I told him that it was annoying. So he stopped for a bit, played with the kids some games, but went right back into talking like her again. Why is this happening? He hadn't been so obsessed with imitating someone's behavior in a very long time.
He fell asleep in the care the way home. So he didn't take his evening supplements, including his probiotics. I have still not received the diflucan. And I know his yeast is out of control.
On the positive side, one thing that both Javier and I noticed last night is that he is no longer humming. I cannot recall the last time he did. That is a good sign.
Thursday, September 20, 2007
I sent a note to the teacher in the middle of the day asking her if she had noticed an improvement in Jonathan's behavior because he has been getting about 10 hours worth of sleep at night since Tuesday night, and she responded "He is having a great day today! I can see a difference. Thanks for your help in making him successful!" That made my day. I have to admit that I am still very worried about him fitting in, getting along, understanding and being understood. He is coming home so exhausted, that I feel it is because he is making an extraordinary effort to be with the group, play and participate and communicate. It will pay off in the end, but I can't help but to feel a bit sad that my son is having such a rough life so early on in his life.
This afternoon and evening he played a lot with his computer. I got the GABA last night and gave it to him yesterday. So I believe that helped. But I think that his yeast is really getting out of control again. He is absentminded and he is not using language as efficiently as he did a couple of weeks ago. So it could be a combination of the HBOT doing his healing process and yeast. We should receive the dyflucan tomorrow and I'll continue to observe over the weekend and into next week if it was yeast.
Tuesday, September 18, 2007
Jonathan had trouble getting up this morning. He hardly ate any breakfast. And when I left for work, I had a gut feeling that he would not do too well. When I got home, my dad told me that Jonathan didn’t want to go bike riding. He didn’t seem very energetic. So I decided to feed the kids early and put them to bed as early as I could. I was tired also and so was Javier. We all went to bed very late all weekend and it was showing.
We ate relatively early (about 7pm), showered the kids, gave Jonathan his supplements, Methyl B12 shot and suppositories and put them to bed at around 8:45pm. We read them book for 10 minutes and Jonathan was sound asleep by 9pm.
At around 9:30pm, I got an email from Jonathan’s teacher asking if his sleep pattern had changed because the past 2 days he has been more tired than normal, very sleepy and with no energy. Wow, mommy’s gut feelings are mostly right, aren’t them? I explained to her the situation and hopefully he will return to normal in a couple of days.
I also ran out of several supplements, but the 2 that might influence are dyflucan and GABA. When he takes 500mg of GABA at bedtime, he normally wakes up at around 7pm full or energy because he had a very restful night. I have noticed in the past year and a half that whenever I don’t give him GABA, he does not sleep as well. He hasn’t taken GABA in 5 days, and perhaps he is not really resting as much, even if he sleeps 8 or 9 hours. Also, he is a gut kid and whenever his yeast gets out of control, he tends to be super tired, especially in the afternoons. I noticed that pattern a while ago. I should receive the GABA tomorrow night and the dyflucan no later than Friday. I hope that with 10 hours of sleep every night, GABA and back to dyflucan, his energy and happiness returns.
Monday, September 17, 2007
Today I went to the parents support group meeting we normally have monthly. We didn't have one in August because everyone was on vacation. So we spent a nice time today catching up and learning about how some of the therapies have been working for our kids.
Most reported very positive results on the neuro-feeback therapy. Better attention, some pretend play. Overall parents feel that it is a good therapy. It is just as expensive as the HBOT, so I'll need to wait a bit before trying it. But I can see how it would help Jonathan. Especially with his attention.
on HBOT, some of us reported very positive results. A couple reported not much improvement. One mom told us about her bad experience with HBOT where her daughter's e.coli bacteria grew tremendously and she felt that her daughter almost died. So we really need to be very careful and take good notes and observation whenever doing any of these therapies as no child responds identically to any of these interventions.
Lastly on non-biomedical intervention, some parents reported that visual therapy might be very helpful. It seems involved and requires parents to force the child to exercise. Jake Greenspan recommended it for Jonathan. I just haven't had the time. But I also see where this could be extremely beneficial. Jonathan has a real hard time staring or observing for a decent period of time.
On the biomedical side, nothing truly knew was mentioned. Most of us are doing a combination of therapies (e.g., Yasko, DAN!, Homeopathy, Energy therapy). Biomed is critical to the success of the other interventions.
It is really good and important for us parents of children with autism to have a support group. It is a great way to share ideas, but most importantly it is very therapeutical. I always leave feeling that I learned something new and pumped to learn and investigate more. Online groups don't do justice.
Sunday, September 16, 2007
A few weeks ago, I taught him to say "excuse me" if he wanted to interrupt conversations and ask someone a question. But how do I teach him to loosen up his speech? I called a speech and language center last week to see if they could accept Jonathan for speech therapy. I think that I am going to need guidance from a speech therapist regarding this topic very soon. We stopped ST because the therapist could not see Jonathan anymore.
He otherwise is very sweet. He is very respectful now when he interrupts people. He always says "excuse me" or "please" and "thank you". But he is not at the point yet to smoothly ask people to help him out.
Today we went downtown to celebrate that we finished HBOT and just do something different. Our weekends have been restricted the past 2 months doing HBOT every weekend. Jonathan and Vanessa were excited to see something new. We decided to ride boats and walk around in a nearby park. The kids had a great time (as you will see in a couple of pictures below). At some point, we went to buy water. My dad ordered a bottle of water and Jonathan asked the lady "do you have apple juice?" and she said "well, yes sweety" and Jonathan responded "well, go get it". Her look changed in a second and I quickly corrected him in front of her and told her to say "can I please have one?" He said it and she went to get it. He thanked her on his own, but she was not happy. Later, during the day, Jonathan kept ordering Vanessa around with a very demanding tone of voice. And last night, he asked Abuita to do something, but the tone was again like he was ordering her or demanding in a rude way and she made a comment to me "I wonder who he got that "ordering around" from?".
He was very very hyper this evening. I also noticed that he was walking a lot with his tip toes today (without shoes). I'll assume it is high ammonia, high taurine. I will give him some extra yucca.
But we had a very nice, relaxing and fun day today.
Saturday, September 15, 2007
We finish today and we won't be doing another set until the mobile unit returns next year. That will give me enough time to chelate some more and keep detoxifying him before we go for a third one. This therapy has really awaken Jonathan. He is talking non-stop.
When he came back, I told him that it was Aric's birthday and that they were going bowling to celebrate and he got very excited. Jonathan is full of energy these days and grabbed Vanessa and told her to play with toys.
I went to visit my grandmother at the hospital while they went to the birthday party. Daddy and Abuita said that they did great. Jonathan really enjoys bowling a great deal and had a terrific time. At cake time, he was happy and sang and enjoyed the party.
At home, Jonathan decided to pretend that he was in his kindergarten class, he was his teacher, Vanessa was the assistant to the teacher and they did a few games, got me involved too. Hilarious.
At bedtime, today for the first time, Jonathan asked Vanessa to sleep with him and she said yes. They went to bed together, read a book (Jonathan read a book while Vanessa pretended and invented the story) and then I turned the light off and they chatted for a little bit. This is very exciting. This is what kids do in sleepovers I guess, and Jonathan is starting to get interested in having someone sleep in his room.
Friday, September 14, 2007
Today he played with Vanessa with all the turn taking toys that we have (Bingo, I Spy, etc). And he was the one moving on from one game to another (his transitioning is getting better). He would tell Vanessa "okay Vanessa, I don't want to play this anymore, let's play something else".
Daddy gave him the Dr. Seuss' DVD and he screamed of happiness. He and Vanessa watched Green Eggs and Ham 3 times and acted it out. Very cute. He went to bed with it.
I put a B12 patch today behind his ear. Testing if that would be better. I put a band aid to make sure it doesn't fall off.
Thursday, September 13, 2007
We had a good dive. Jonathan is really tired of diving. We are almost done. But he keeps asking inside how much time left to go home.
He ate all his split peas soup. He is really getting better at eating all the soups. We load them with grains and vegetables.
Wednesday, September 12, 2007
I also noticed that his language was more complexed. We are now truly conversing. He still has to rote tone when he speaks in full sentences.
Tuesday, September 11, 2007
When he woke up, I told him and Vanessa that it was Daddy's birthday (well, Daddy tried to remind them, but neither got the clue, so I told them) and Jonathan spontaneously looked right at daddy and sang happy birthday. He looked happy and calm. A few minutes later, after he finished his breakfast, he went to his computer for a bit before he headed to Kindergarten. No more celebrating.
That evening, we went to eat to a new restaurant. The kids were very playful and I was glad that the place was kids friendly, because they were loud. We sang happy birthday to daddy and went home. We got the kids ready for bed, read them a book and called it a day.
When I went back downstairs, I found a printout (yes, he knows how to print). It was the September calendar with a couple of events. And to our surprise, what he had highlightened was Monday's dentist visit (with a happy face with a broken tooth) and a cake on Sept 11 depicting daddy's birthday. Very cool.
Today Jonathan came home with another "good behavior" note. On Monday, I learned that the kids should get a least one a week and they need to collect 10 of them to get a big diploma. So far, Jonathan got 2 and today I got him more involved in taking ownership of those 2 pieces of paper.
One thing that I wanted to blog today is that Jonathan brought home a drawing and although we have not figured out if he picked out the colors of one of the teachers did, what impressed me was that he did all the coloring inside the lines. That is something that the ABA therapists worked very hard with him for months, and even after they left, he still had not fully mastered. Way to go!
Monday, September 10, 2007
Daddy said that Jonathan was a complete champion. The Dr. had to use the drill for a couple of seconds to clean up the decay well, and Jonathan let her do it (no anesthesia) and had his mouth open and did everything she said. He did not have sensory problems at all. Daddy was totally amazed.
After that, they went to the pediatrician’s office to get his weekly allergy shot. Because kindergarden is dismissing at 4pm and we are not done with the HBOT, we switched to getting the allergy shots on Mondays until Sept 16. After that, we will resume our Wednesday evenings. He then went home and Daddy picked Vanessa up and they played until bedtime.
Today we had the school’s parent evening event. I went to the event and Daddy stayed home with the kids. The kindergarden teachers had us all sit in the tiny chairs and she had a presentation ready. She told us about the curriculum, and the activities, what to expect. She had a folder with information and she gave us a website where we could keep in touch with her. I really liked her approach and I can tell that she is passionate about the kids. And she is fun. Jonathan seems really happy when he comes home from school and I can totally see why. She is very energetic yet everything has a structure and it looks really well organized. I think this is going to be a great year for Jonathan. And I intend to get as involved as possible.
When she was done, I personally approached her to ask her how Jonathan is doing. She said that he is doing really well. He is fitting in. He is blending with the class. I asked her how his attention span was, and she said that he is really good. He pays attention and responds to just about everything (unless he doesn’t understand in which case she repeats with different words). And whenever he sucks his thumb, all she does is touch his hand. She does not say a word and he immediately takes it out and joins the group again. I told her I was worried about his attention span and she said that the first 2 days he was a bit jumpy. So she put an X on the floor when they had to sit and pay attention and she told him to sit there. He did for 2 days with no problems and at the beginning of the third day she told him that if he sat quietly and paid attention, she would take the X off the floor. He told her that he didn’t need the X and she took it off and since then he has been really good about sitting until told to stand. This is exactly what I wanted to hear. That she would be able to use behavior modification of this sort to bring him into the group. The 2.5 years of ABA is now really paying off. Thank you LEAP Ahead.
After that, I spoke with the assistant who was also with him at the other daycare in the afternoons (in Group 5). I asked her how she saw him compared to the Group 5 class at the daycare. And she said that it was night and day. Jonathan is doing really well in this classroom. He is rarely on his own or bored. He is very happy all the time and he is simply very lovable and cheerful. They love his laughter (Group 5 also liked it. They sent a note a few weeks before he stopped going there about his laughter and how much they liked it). Apparently he giggles and laughs in a fun way that all enjoy. She told me that in just 1 week she can already see an improvement in Jonathan’s behavior and involvement. He really enjoys the academics and he is very engaged. Whenever they see him zone out (which is not often she said), she just touches his back and he turns and pays attention. And because he already knows his letters and such, he likes to participate. But he knows how to wait and take turns. She told me that she feels Jonathan is going to do really really well in this class this year. And I could feel a bit nut in my throat. I have noticed a change in Jonathan this week. He is happier and he is more talkative. And he is also making more things up. And he is now very independent. He pours his own juice, he feeds the dog, he gets the glue to glue things, he cuts whatever he wants to put on our "Art" wall and tapes it on his own, etc. All this in just one week. So I agree with them that this class seems like will help Jonathan a great deal.
The meeting was very good. Very encouraging for me. Specially because this is a public school and I didn't know what to expect. But I am happily surprised to see it so well organized. They are starting to assess the kids based on the curriculum they are teaching and their final goal (all kids will leave kindergarden knowing how to write a full sentence) and they are going to meet with us parents the first week in November to let us know where our kids are compared to the curriculum (not compared to other kids) and how we can help the teachers move our kids along.
When I left the class, I had a couple of tears in my eyes. All I could think of was “my God, we made it to "mainstream" kindergarden with typical (normal) kids. He is not going to go to an institution for kids with autism”. It has been so hard. The past 3 years have been the hardest of my life. He was first diagnosed on Sept 24, 2004 and the prognosis was not very encouraging. The future was “Institution for kids with Autism”. And I changed my attitude towards “mainstream”. We made it to the mainstream world. We have a long way to go still, but we are out of the woods. This year, working at my company I was able to help an institution for kids with autism and I got to see what that would be like and that was horrendous. And last night, all I could think of was that he was not going to need that.
Sunday, September 9, 2007
The biggest thing that impressed me what his ability to search in YouTube and find what we wants. Yesterday he wanted to find a couple of videos based on his favorite kiddy books. But we could not find them. Today, after he arrived from the HBOT, he sat in front of the PC (I gave him a 45 minute limit, which I then forgot to follow up on) and a few minutes later he called me up "mommy, come. Look. I found it. I found Goodnight Moon". I came down and dropped my mouth. He did. I searched for it yesterday under several criteria and didn't get to it. Today, he simply searched for "goodnightmoon" and there it was. And like that, he is now finding all kind of kiddy videos. It is scary. I am not sure how to restrict his access from YouTube because there are really gross things out there. What a dilemma.
Aside the situation with youtube, I am thrilled that Jonathan is inventing or coming up with innovative solutions to obstacles. Like a kid his age should do.
We went to a baptism today. A very dear friend of mine had a second baby 3 months ago and the baby girl was baptized today. When we arrived, Jonathan was hungry and the food served (mostly salads) was not appealing to him. Vanessa did eat a bit of Spanish style rice and salad with me. But Jonathan was cranky, so daddy took him somewhere near to eat. When they came back, Jonathan was energized and happy. He started playing with Vanessa and soon enough my friend's first son (who is 2) joined them and the three of them started running and screaming and playing and having a great time. All the other people were enjoying watching them play. It was a good afternoon.
At home, he and Vanessa played beautifully for a while. They ate early and went to bed early (for a change :)
Saturday, September 8, 2007
He really likes to go bowling. Abuita said that he is now even trying to throw the ball without the metal guides made for little kids. They played a couple of rounds and they came home.
At home, it is very hard for him to play with toy. He wants to play with his computer. He got very interested is books again about 2 or 3 weeks ago, especially the Dr. Seuss' ones. He told me he wanted to see a video for "Green Eggs and Ham" and I had the brilliant idea of looking it up in www.YouTube.com. Well, he has gotten addicted to that, which is very scary. They sing a song at school that he really likes called Chicka Chicka Boom Boom. It teaches the alphabet with music. He asked me to find it in youtube and I did. He saw me typing the words in the search section and he now does it, finds it and finds his Dr. Seuss' ones. It is great but dangerous. This kid learns way too quickly. Now, he turns his PC on, launches IE, goes to youtube and finds his videos without any assistance and he learned it in a day.
I restricted his PC to 1 hour. After that, I told him to shut it down and he did. We got ready and went to visit a friend who was having some friends over. Jonathan fell asleep in the car. He slept for about 45 more minutes at our friend's house. When he woke up, he was confused as to where he was. He wanted to hug me for about 5 minutes. 5 min was enough and he started walking around the house to find something to do. I did not tell him what to do or where to go. He slowly started joining the other 5 kids. Suddenly, he was gone playing with them. After about 2 hours of crazy play, they all started screaming louder. It sounded like they were playing monster and Jonathan was the monster. I was concerned that Jonathan was making to much noise and told daddy that we should tell him to lower his voice. All the parents (the 6 of us) and a couple more friends were sitting at a table, some drinking, some eating and all talking when daddy said to me "honey, we have been waiting 5 years to see Jonathan play with other kids and now that he is you want to tell him to be quite? No, let them kill each other up there" And everyone else at the table backed him up and I found myself enjoying hearing how Jonathan was playing with the other kids. Once he felt comfortable, he was friendly and playful. Something good for me to know. And when we left, he gave everyone a hug goodbye and turned to tell the other kids "guys, I'm leaving. I'm going home. See you later" and we all left.
Friday, September 7, 2007
He has to wear a name tag every day and Daddy and Mommy forgot to put it on before he went to school. He was very anxious that he didn't have it. Everyone in his class has it and he had to have his name tag. So daddy went back home to get it. It think otherwise his day would have been ruined.
His teacher sent me the following note: "He is trying so hard. I am very proud of him. He seems to be adjusting nicely. We all had a nice first week." I am proud of him too :)
We had a pretty good dive. We continue to dive at 1.75 ATA during the weeks. I am not sure if they take them below 1.5 ATAs during the weekends since not everyone on the weekends is ready for the deeper dives. However, I think the deeper dives are actually better and I am glad that we get 4 out of 6 days of it.
We had some friends over and Jonathan played with them almost the entire time. They would at times take breaks from each other. Sometimes do some parallel playing. But overall, they played for about 5 hours. We told Jonathan when they arrived to shut his PC down and that forced him to play.
Thursday, September 6, 2007
My dad said that today's school bus drop-off was great also. He is paying attention to the route and he is the first in line now to get off the bus when it gets to our stop. He has excellent sense of direction (he got that from me :) So I feel a bit more relieved that his attention span is focused during the transportation time. That was something that worried me greatly.
Today we had a good dive. Jonathan's language is really good this week. His tone is great. He picks up on my tone also. I asked him what he wanted to eat on the way back in a singing manner, and he responded singing back.
I asked him what he read today and he said "mommy, we didn't read" and I asked why and he said "I don't know. We don't have books" and I asked why and he said "because Mrs. X did not buy any books". That was too cute. That is probably not accurate and they do have books somewhere that he has not seen, but his thought process is interesting.
Today he ate 2 bowls of lentil soup :)
Wednesday, September 5, 2007
"Jonathan was delightful! He did really well yesterday. Very busy, fun filled day for all."
That note filled my heart with pride.
When he arrived home in the school bus, he knew where thet stop was, told the driver that the person waiting outside was his grandfather and said bye to a couple of kids that he was talking to in the bus. Wonderful.
We went to visit my aunt and uncle as my brother was in town for a couple of days and he was pretty talkative. Mostly about eating his pasta (I made Gluten Free spaghetti for him and my uncle) and then he played with my other brother who lives in town.
On the way home, he read 3 books and sand 2 songs with Vanessa and me. Simply extraordinary.
Tuesday, September 4, 2007
He had been telling people that he was going to start Kindergarden on September 4. And today, when we woke him up and told him it was September 4, he got all excited. I told him that he had to eat breakfast because his teacher told us so, and he ate almost all his GF/CF pancake. I have decided to simply go GF/CF again to help him with the transition into a large room of neurotypical kids. He is going to need all the help we can give him.
Daddy dropped him off at SACC (school's before and after care center) and Jonathan did not seem too happy. But he stayed. A nice lady came over to talk to him and take him inside. He seemed puzzled and a bit sad, but did not cry. Daddy's heart broke :(
In the afternoon, he rode the public schoolbus. I came home early to receive him the first day. My dad is going to wait for him from now on. The bus was late. When it arrived, all the kids that live in the area exited the bus and no sign of Jonathan. The coordinator asked me if I was missing mine, and I said yes. She asked me for his name and I told her. She turned and yelled out Jonathan's name and I could hear his voice saying "What? What?". She told him that I was outside but I think we was too confused. However not overwhelmed. She asked me to step inside so he could see me. I did and called out his name. He turned and looked at me and yelled out "mommy!!!" He was trying to get his backpack and lunch bag when the lady called his name the first time, but they were stuck. When he saw me, he pulled them harder and got them loose. And ran out to me. The coordinator and the driver laughed and said bye. They were very very nice. My dad told her that he would be here tomorrow and she said that that was great.
When we got inside the house I asked him how his first day went. He was actually in a very good/talkative mood. He said it went well. And all of a sudden he turned around and said "mommy, I opened my apple juice today ALL BY MYSELF". He was so proud of himself. I was too. I told him that that was great and asked about the apple sauce. He said "I opened the apple sauce by myself and the cheese and pasta too".
On the way to the HBOT I asked him a lot of questions. And I found myself hearing wonderful things back. I dreamed for the longest time to someday be able to ask Jonathan what he did and have him answer with detail what he did. And today has been the closest. He told me what song they sang at circle time and what story they read (Chicka Chicka Boom Boom). He told me that he really likes that story and he wants it in CD to listen to it in his computer. I asked him if he heard it in the computer in his class and he said no, that the teacher read it. But he saw it had a CD and he wants to get that book and put the CD in this computer and read along. He told me what painting he made (himself and a palm tree) and all about lunch time. And whenever I asked him something that he couldn't remember, he would say "I don't know mommy. I don't remember". A typical answer. We conversed the entire ride. This never happened before the HBOT. It was a very special moment.
During today's dive, Jonathan's ears bothered him more because he was covering his ears and didn't really seem in pain, just very uncomfortable. But it might be the noise more than having to pop them. The other parent that usually sits on one end, sat where we have been sitting in the past 2 weeks and told me that that corner is less noisy. So I am going to try putting the headsets on him tomorrow. They have tight headsets to filter out some of the noise the chamber makes when it is compressing.
It was a wonderful day. Jonathan's language today was amazing. Being in a room full of neurotypical kids I think is going to help him tremendously.
Monday, September 3, 2007
The kids got up and played beautifully. They went to Jonathan's room to read books. Even though they cannot really read the words (Jonathan knows a few but not all), they made up stories just watching what was going on in the book. That made me very happy.
They spent all morning together, playing a bunch of pretend games while I separated the supplements (a 2-hour task). Vanessa started hugging Jonathan and Jonathan would hug Vanessa. They were wrestling and hugging. Not too rough so I let them play. Suddenly, Vanessa hugs Jonathan and says "Jonathan, you are my best friend". Oh my goodness, I had a nut in my stomach when I heard that. Jonathan then hugged Vanessa and said "Vanessa, I love you". And Vanessa responded the same way. That was a priceless moment. They suddenly disappeared. When we asked where they were, they said they went upstairs to change. Now, that was something new. Although they did not completely change (they took out a bunch of clothes out of the closet but did not put them on), this is a great beginning.
Today's session was at 1pm. Special one because of the holiday. When we got home, we ate. I prepared ground turkey with potatoes and carrots. I told him that he had to eat it all. It was a bit of a struggle, but he ate most of it. That was a great breakthrough.
Later in the afternoon, he was hungry again and asked me to make spaghetti. I made him some gluten free one and made extra for tomorrow's lunch at school.
In the evening, he wanted to watch a movie and said to Abuita "I am going to watch a movie because this is my house". That was really cute.
Before we went to bed, I bathed the kids and cut their nails. Cutting Jonathan's hand nails has never been problematic. I started doing it since he was born and he always let me. Same with Vanessa. But the feet were a different story. When he was a baby I could cut them. Up until he was about 14 months old. After that, it because a battle. When he turned 19, Daddy had to hold him down and I had to really grab his feet hard. After the diagnosis, I learned about a disorder (very common in children diagnosed with autism) called Sensory Integration Disfunction. Basically, his central nervous system was not sending the right information all the time, and his senses were out of sync. Stuff either hurt him too much or did not at all. For instance, he could fall down in a driveway and not feel the pain, but cutting his toe nails was like killing him. He was very sensitive to sounds and had to cover his ear. But could not smell things very well. It is more involved than just these samples, but we worked hard with his OT (occupational therapist) to wake-up some of the nerves that were not responding so they could help with the ones that were overly responsive. We brushed his skin at first about 8 times a day. As many times as we could remember. We did Tomatis (auditory processing) to assist with nervous system, etc. Little by little he had become better at controlling his impulses. If he knew something was coming, he would not overreact.
Tonight I was really surprised to notice that he had absolutely no resistance whatsoever when I cut his toe nails. They don't grow too fast, so I cut them once every 2 weeks. Too weeks ago, I still had to fight a bit with him and hold his feet really hard. Today, I didn't. He didn't mind. I asked him if it hurt him, he said no. The moment I pressed his foot harder, he told me I was hurting him. I can tell that it is not that he is now under-sensitive, but that his senses may be more at sync than ever.
Sunday, September 2, 2007
In the morning, we had Daddy's family over for breakfast. Tia Nelci and Tio Billy were here for the weekend to help Abuita move. He was really excited to see Tio Billy again because he likes to play with him. Tio Billy is silly and Jonathan likes silly. After we all ate breakfast, Jonathan and Daddy left.
Jonathan is now obsessed with Dr. Seuss' book. Especially Green Eggs and Ham. He has memorized it. He reads all the words in it, but I believe he memorized each word. He cannot read other books like this one. He came home and read it to Vanessa a couple of times. Then he started playing with his laptop. I came over to change him back to the HBOT uniform. I was rushing and he told me "mommy, when you go slow, I can play more. When you go fast, I cannot play a lot. So go slow so I can play a lot". And I smiled at him for making such good logic but told him that unfortunately I had to go fast this time.
He did well in the HBOT. We read his books and watched the Magic School bus. He was in a rush to get out. I tried to explain that he had to be patient. I asked him if he knew what patience was and he said no. So I told him that patience meant that he had to wait until he cold do what he wanted to do. I could see it in his eyes that he was processing that explanation. He waited patiently for his turn to get out of the chamber.
When we arrived at home, we gathered a few items and headed over to our friends' house. At first he didn't want to play much with Christian and Nico. He was very hungry. But I showed him I was making food and he got a bit better. He ate the grilled chicken that Dad made. He ate it all. I am excited because he normally does not eat all the food when it is not something he is used to eating.
After about an hour, he started playing with the boys. He later wanted to watch one of his DVDs - Arthur. I asked Christian but he said that he was watching a movie and we needed to wait until it was over. So I told Jonathan he had to be patient and wait and he asked why. I told him that he had to wait because it was Christian's house and he was watching a movie first. Jonathan accepted that explanation. As soon as the movie was over, he screamed at me to come and put Arthur because the other movie was over.
Today I added 1 EDTA (chelation) capsule in the evening. And we ran out of Dyflucan (for the yeast). I am going to give him a break from it and just give him 20+ drops of Grapefruit Seed Extract plus all his other herbs and see how he does.
Saturday, September 1, 2007
After the HBOT, I gave him gluten free pasta and he said he wanted to eat it outside. I told him that it was sunny, so the smarty went to the place I keep everyone's sunglasses, and got his sunglasses, came back and told me that he was now ready for the sun. That was funny. He and I ate outside and talked about kindergarden, his new teacher, what he did at HBOT, etc. I was mostly me asking but when he responded he added events. It was nice.
After we got back inside, he told his grandfather that he wanted to throw the ball. He did it yesterday also. And he is now throwing it from even further back.
Tia Nelci and Tio Billy came over and he played with Tio Billy on the PC for a bit. They played beautifully. He asked Jonathan what to do and Jonathan would tell him and do it and then they would watch the game go different ways and scream and laugh at the PC. It was comical. After that, they all went bike riding. Vanessa got an ear infection, so they came back quicker than usual. Then they all left to help Abuita move into a new apartment and Vanessa and I stayed home to let Vanessa nap.
I cannot put my finger on it, but he is a bit more talkative, a bit less obnoxious.
Today he did not take his morning supplements.