I took Jonathan to an auditory processing and speech therapist for an evaluation on Thursday. Since my new goal is to fully recovery his language now that all his other autistic type symptoms are 90% recovered, my next approach is to go back to the beginning: Tomatis. We did 7 loops 3 years ago (each loop is 10 days with a 2-month break). That was the very first therapy we did after his diagnosis, even before we started the gluten free/casein free diet. And he was a good responder. No miracles, but good improvements were observed, particularly in the area of motor skills.
I know that language is the last thing to fully recover. He did 2.3 years of ABA and learned a large vocabulary from that. But even with speech therapy, his language is still not where it should be. He currently is 3 waiting lists for speech therapy. One is about 2 years old and they still have not placed him. Due to his school and activities schedule, I can only do late afternoons and speech therapists that participate in my insurance are booked. But he received speech at school plus as I mentioned above, 2.3 years of ABA.
My biggest concern is expressive language. He does not speak like a 6-year old. He speaks like someone that is learning a new language. He needs to think through his sentences before he speaks or when he speaks without thinking, we switches words and makes some grammatically mistakes. And his tone is someone flat - 80% of it lacks melody. My other biggest concern is that his DAN! Dr. said that his flat tone will probably stay forever. And since I am more optimistic than that, I need to find a way to bring melody to his voice. The fact that he can demonstrate that he is capable of speaking with melody leads me to believe that I can bring that out. But it won't be easy. That I know. I am shooting for 1.5 years.
So, my two choices right now (besides continuing biomedical interventions) are auditory processing and neurofeedback. I already did the neurofeedback evaluation and I need to find the time to take him to therapy sessions. The other important one is auditory processing. I took him for an evaluation and I was very happy with the outcome. I like knowing where the physical problems are so I can concentrate on those areas. I don't do well without a target.
During the evaluation, the first thing that both the Occupational Therapist (OT) and the Speech Therapist (ST) told me is that "there is no autism in him". The one therapist that first helped me back in 2004 when we did the first loop was still there. And she had tears in her eyes watching the new Jonathan speak to her. "He is talking!!!". She hadn't seen Jonathan in 2 years. But when she met him, things were really bad (and no language). So her comments are a great benchmark. I remember when Jonathan first communicated his feelings during the second loop through drawing a happy and sad face. She was there and was amazed to see that. Now, he was telling her all about summer camp, and played beautifully and did all the exercises they asked, was always engaged, happy, humorous, etc.
After the evaluation was done, the OT and ST explained the tests. In the visual evaluations, he did very well and rated as a 9 year old. Except for an exercise where he had to follow a pen with his eyes, and he had his whole head follow the pen. However, in his auditory processing and sequencing test, he only reached the standard deviation for 1 of the 5 major tests they did (was in the 47th percentile which is just 3 points below the standard deviation of 50 and very normal). The other 4 were below 10th percentile. They noticed that if they introduced visual help, he could do them and reach the 50th percentile. But ears only are not working optimally. That is great news so I can concentrate on this. It actually explains a lot.
They proposed one 10-day loop and a re-evaluation in 6 months with a home program. I am excited about it. I need to get everything setup to do it the last 2 weeks in august. I have confidence that the insurance will cover a large portion. Once this is done and I have received payments from the insurance, I'll do the neurofeedback.
The fact that these therapists told me that they don't see autism anymore (although they do see other problems like auditory processing and sequencing problem) is very encouraging. I am having Children's Hospital do a re-evaluation on August 4th. Same department that gave him the High Functioning Autism 3 years ago (almost a year after the first pediatric neurologist diagnosed him with severe autism). That way I can match apples to apples. I do believe he is still in the spectrum, he is still hyperlexic (reads and writes but has problems with pragmatics), has some social problems (particularly due to language), and has some obsessions. His DAN! believes he will be re-diagnosed with aspergers. I'll keep you all posted.
Saturday, July 26, 2008
Wednesday, July 23, 2008
3 1/2 Weeks of Summer Camp Down
It has been a while since I last updated the blog. Jonathan started a two-week sports camp and finished it and he did very well. I am very proud of him. He lost quite a few items in the process, but he loved it and learned so much. My heart filled of joy this past weekend when he asked me to play something and it was "rock, paper and scissors". He learned how to play that in the camp. He learned lots of games. Every morning, when I dropped him off, the kids were playing ball and a couple would call Jonathan up to come join them. That was music to my ears.
His receptive language has really improved tremendously. I know I keep saying that, but it seems better every week. This week he is attending a different camp. He got used to it very quickly. When I took him yesterday, the girl asked her a few questions about his classroom. He answered everything. Then she asked him for his last name and he told her without hesitation. I asked her how he was doing and she said that he was going great.
The most important thing to note in today's blog is that I got the results from the mitochondrial exam that was done a month ago and all the results were normal. One thing the Dr. noted is that Jonathan fits all the criteria for EDS (Ehlers-Danlos Syndrome) and in the report she encourages to keep him away from contact sports and to have his heart checked for a potential issue with the great vessels. I took him on Monday to a pediatric cardiologist who checked him with an EKG and an ultrasound. Everything was normal. The cardiologist suggested that we check again when he is a teenager, but for now he is totally normal. No signs of any type of heart abnormality.
The genetic Dr. concurred that Jonathan's history of low muscle tone could be an indicative of mitochondrial disorder, but since it cannot be accurately tested (not even with the muscle biopsy) and he seems pretty energetic now, she suggested that he keep him on the mito cocktail he is on and add creatinine. I haven't done that yet. She wanted to wait for the genetic test results to come back before going to different levels. She suggested that if I really wanted to test the mitochondrial theory, I could get an MRI done. But again, the treatment is the same mito cocktail I am already giving him. So I decided to wait for the genetic test results to arrive and if normal, I will just continue with my current plan. The results arrived today. "No evidence of an inborn error of metabolish was found". With that, I close this chapter and continue with other therapies.
Overall, Jonathan has improved in the past 3 weeks. Particularly his language has improved. He is very excited about summer camp. Has no anxiety. And when he comes homes, he does fairly well telling us about what he did. It is still all over the place, but he tries. When we ask him the names of friends, he tells us that he doesn't remember.
His receptive language has really improved tremendously. I know I keep saying that, but it seems better every week. This week he is attending a different camp. He got used to it very quickly. When I took him yesterday, the girl asked her a few questions about his classroom. He answered everything. Then she asked him for his last name and he told her without hesitation. I asked her how he was doing and she said that he was going great.
The most important thing to note in today's blog is that I got the results from the mitochondrial exam that was done a month ago and all the results were normal. One thing the Dr. noted is that Jonathan fits all the criteria for EDS (Ehlers-Danlos Syndrome) and in the report she encourages to keep him away from contact sports and to have his heart checked for a potential issue with the great vessels. I took him on Monday to a pediatric cardiologist who checked him with an EKG and an ultrasound. Everything was normal. The cardiologist suggested that we check again when he is a teenager, but for now he is totally normal. No signs of any type of heart abnormality.
The genetic Dr. concurred that Jonathan's history of low muscle tone could be an indicative of mitochondrial disorder, but since it cannot be accurately tested (not even with the muscle biopsy) and he seems pretty energetic now, she suggested that he keep him on the mito cocktail he is on and add creatinine. I haven't done that yet. She wanted to wait for the genetic test results to come back before going to different levels. She suggested that if I really wanted to test the mitochondrial theory, I could get an MRI done. But again, the treatment is the same mito cocktail I am already giving him. So I decided to wait for the genetic test results to arrive and if normal, I will just continue with my current plan. The results arrived today. "No evidence of an inborn error of metabolish was found". With that, I close this chapter and continue with other therapies.
Overall, Jonathan has improved in the past 3 weeks. Particularly his language has improved. He is very excited about summer camp. Has no anxiety. And when he comes homes, he does fairly well telling us about what he did. It is still all over the place, but he tries. When we ask him the names of friends, he tells us that he doesn't remember.
Monday, July 14, 2008
He is Making Comparisons
Jonathan continues to come out of his bubble. Every day is a new experience for me. This morning, he and Vanessa were talking and she wanted to see his belly. Vanessa told him that her belly was smaller. And he said: "Vanessa, I am fatter than you. You are skinny" Then Vanessa said: "But mom is skinny too Jonathan" and he said: "Yes she is, but you are more skinny than mom". Then Vanessa said "but Dad is fat like you Jonathan" and Jonathan said "but that is fatter than me". Now, what kind of conversation is this for a 4 and 6 year old to have I ask? However, I enjoyed it. Then I told them that they were both fine and didn't need to worry about being fat or skinny, just being healthy. That they have to eat lots of fruits and vegetables.
Friday, July 11, 2008
Second Week at Summer Camp was Successfull
I am learning so much from Jonathan and from life. This week has been particularly difficult, yet rewarding. One of Jonathan's uncle, daddy's older brother, passed away on July 4th. It has been a very sad week. Daddy is away until next Tuesday and I am home with the kids and my dad. My dad has been a tremendous help and company. The kids have been great. They miss daddy and Vanessa cries every day because she wants daddy, but they have behaved beautifully.
This week's summer camp has been different than what I expected and due to our recent loss, I had a mixture of feelings. A realization of what is important versus what is not. An appreciation for life and for what we have. Jonathan has been a little miracle in my life. He has taught me more about life than anything or anyone else without really knowing. Every day to me is like a little miracle. New words, no behaviors, the "awakening" phase as I call it. And Vanessa has also been a miracle in my life, complementing what Jonathan has given me. Her energy, happiness and charisma are contagious. She has been Jonathan's best therapist. And this week I have appreciated them more than before.
During this week’s camp, Jonathan had to really be on his own. I have been so scared, but I contained myself from pulling him and played it by ear. I wanted to push the envelope a bit more to see how much he can tolerate. And to my surprise, he has coped quite well. It is hard to fully know how he is doing compared to other NT kids since I don't get feedback or a report from the camp organizers. But since I don't get negative notes nor have I been called, I assume he has done well enough to fit in with the other 6 year-old kids.
Each day went something like this: I dropped him off at 9am every day. I signed him in their master book and he would put his backpack on the floor among all the other backpacks (at least 20 other ones) and would join the kids in the playground. They would remain in the playground until they were pulled together to board a school bus that would take them to a local elementary school. It was his responsibility to pay close attention and when his group was called, he had to go join Miss Shana and his classmates, without forgetting his backpack. And he did. They would remain in the elementary school until 11:45am, when they would return to the recreation center for lunch and afternoon activities. He had to feed himself (which he was very used to because at kindergarten he learned to do that) and clean after himself. I put 3 bottles of water in his backpack hoping that was enough for the day. He told me it was. In the afternoon, they would go to the indoor swimming pool for an hour. He had to change and put on his bathing suit all by himself, remember to put all his clothes in this backpack and put his backpack somewhere in the pool area. When the hour was over, he had to go to the boy’s bathroom, dry up on his own, and change his own clothes and put on his shoes, put all his wet clothes in the backpack and follow the group to another activity area. They were supervised but there was no hand holding from the leaders (I asked about this). The first day, he came home wet. It was a little bit of a mess. And he lost his snack bag and flip flops at the pool. As time has passed, he has learned to take care of his belongings, dry up better and change his clothes appropriately. So far, he recovered the flip flops but lost one of his bathing suits. And today, he came home wearing someone else' underwear. However, given the circumstances, I am very proud of his accomplishments. I honestly say that I underestimated his ability to take care of himself and his belonging and I will start to push him more to be more self-sufficient.
He told me today that he really likes summer camp. He has another week of sports camp next week. I am more comfortable now.
He is also more talkative this week. It could be because he is now spending 7 hours a day with other children, older than him in most cases and he is learning from them. This week he is very interested in watching Ben 10 on TV and he is really getting into it. He also told me today that he wanted to go see the journey to the center of the earth movie. And we are now having meaningful conversations like never before. We had a very long conversation for about 10 minutes on Wednesday regarding life and death. It was coincidental to our current circumstance because he doesn't know what is going on. But it was sparked by a Ben 10 episode when Ben 10's grandfather dies. The day after watching that episode, he asked out of the blue "mom, where do people go when they die?" As you can imagine, that caught me by total surprise. I said “to the sky” which is what we Hispanics believe in. He kept asking why. So I improvised some of my answers. This is a tremendous breakthrough. This is my "why is the sky blue" kind of why question. In my opinion, we have graduated from the “why” questions and need to continue to observe how the “how” questions mature and evolve.
He is also reasoning very well. A note to make is that although he is recovering and improving all around, he will always be a "numbers and letters" kind of kid. He may always carry the "aspergers" diagnosis (whenever he gets it, hopefully soon) because he is just so fascinated by numbers. His latest fascination is people's age. He wants to know everyone's age. But now, when he is pretending with Vanessa, he adjusts their ages depending on the game and makes sure that Vanessa is always 2 years younger than him. He says "well mommy, if I am 40 then Vanessa is 38". We went to his pediatrician’s office yesterday for his allergy shot, and he just spoke away with the nurse like never before. This nurse has administered the shots for the last 3 years and she knew Jonathan at his worse. Her mouth dropped after a few minutes into the conversation. He told her where daddy was and where he was going for camp, answered every question she asked and if she said something incorrect, he would politely tell her the correct answer, etc. Then he goes "hey Mrs. Karen, do you know how old my daddy is?" and she started guessing ages. He played along until the 4th miss, when he told her 36. Then she said "wow Jonathan, you know? I am 20 years older than your dad. Do you know how old I am?" And he looked up a bit and then said "well, that makes you 56 years old". His pediatrician was there, listening in the background and they looked at each other’s eyes and said "wow Jonathan, you are really smart" and then told me how incredible it was that he could do math like that. To me is like Dustin Hoffman in Rain Man and I reject that a bit. But I know that he will do well in math. So that is a relief. I am grateful that he is starting to come out of Autism and if he is going to keep some traits, I welcome math.
For the record, I took Vanessa to her 4 year-old checkup and brought the measles vaccines to have her pediatrician inject it. I spoke with her about it last year and told her that I wanted to break them apart. She told me that she only purchased the MMR together, but if I purchased it on my own, as long as the vial was intact and with a good expiration date, she could administer it. Jonathan’s DAN! Dr. carries them and I purchased it last month. The pediatrician injected it on July 9th. That day she seemed a bit more tired than usual and irritable. But I pumped her with probiotics and Vitamin C. Because we travel, I feel more comfortable if my kids are protected. If I didn’t have a chance to separate the MMR, I would never give it to Vanessa. But since they can be administered separately, we decided to do it. I will have the doctor administer the Mumps vaccines late November and the Rubella in May 2009.
This week's summer camp has been different than what I expected and due to our recent loss, I had a mixture of feelings. A realization of what is important versus what is not. An appreciation for life and for what we have. Jonathan has been a little miracle in my life. He has taught me more about life than anything or anyone else without really knowing. Every day to me is like a little miracle. New words, no behaviors, the "awakening" phase as I call it. And Vanessa has also been a miracle in my life, complementing what Jonathan has given me. Her energy, happiness and charisma are contagious. She has been Jonathan's best therapist. And this week I have appreciated them more than before.
During this week’s camp, Jonathan had to really be on his own. I have been so scared, but I contained myself from pulling him and played it by ear. I wanted to push the envelope a bit more to see how much he can tolerate. And to my surprise, he has coped quite well. It is hard to fully know how he is doing compared to other NT kids since I don't get feedback or a report from the camp organizers. But since I don't get negative notes nor have I been called, I assume he has done well enough to fit in with the other 6 year-old kids.
Each day went something like this: I dropped him off at 9am every day. I signed him in their master book and he would put his backpack on the floor among all the other backpacks (at least 20 other ones) and would join the kids in the playground. They would remain in the playground until they were pulled together to board a school bus that would take them to a local elementary school. It was his responsibility to pay close attention and when his group was called, he had to go join Miss Shana and his classmates, without forgetting his backpack. And he did. They would remain in the elementary school until 11:45am, when they would return to the recreation center for lunch and afternoon activities. He had to feed himself (which he was very used to because at kindergarten he learned to do that) and clean after himself. I put 3 bottles of water in his backpack hoping that was enough for the day. He told me it was. In the afternoon, they would go to the indoor swimming pool for an hour. He had to change and put on his bathing suit all by himself, remember to put all his clothes in this backpack and put his backpack somewhere in the pool area. When the hour was over, he had to go to the boy’s bathroom, dry up on his own, and change his own clothes and put on his shoes, put all his wet clothes in the backpack and follow the group to another activity area. They were supervised but there was no hand holding from the leaders (I asked about this). The first day, he came home wet. It was a little bit of a mess. And he lost his snack bag and flip flops at the pool. As time has passed, he has learned to take care of his belongings, dry up better and change his clothes appropriately. So far, he recovered the flip flops but lost one of his bathing suits. And today, he came home wearing someone else' underwear. However, given the circumstances, I am very proud of his accomplishments. I honestly say that I underestimated his ability to take care of himself and his belonging and I will start to push him more to be more self-sufficient.
He told me today that he really likes summer camp. He has another week of sports camp next week. I am more comfortable now.
He is also more talkative this week. It could be because he is now spending 7 hours a day with other children, older than him in most cases and he is learning from them. This week he is very interested in watching Ben 10 on TV and he is really getting into it. He also told me today that he wanted to go see the journey to the center of the earth movie. And we are now having meaningful conversations like never before. We had a very long conversation for about 10 minutes on Wednesday regarding life and death. It was coincidental to our current circumstance because he doesn't know what is going on. But it was sparked by a Ben 10 episode when Ben 10's grandfather dies. The day after watching that episode, he asked out of the blue "mom, where do people go when they die?" As you can imagine, that caught me by total surprise. I said “to the sky” which is what we Hispanics believe in. He kept asking why. So I improvised some of my answers. This is a tremendous breakthrough. This is my "why is the sky blue" kind of why question. In my opinion, we have graduated from the “why” questions and need to continue to observe how the “how” questions mature and evolve.
He is also reasoning very well. A note to make is that although he is recovering and improving all around, he will always be a "numbers and letters" kind of kid. He may always carry the "aspergers" diagnosis (whenever he gets it, hopefully soon) because he is just so fascinated by numbers. His latest fascination is people's age. He wants to know everyone's age. But now, when he is pretending with Vanessa, he adjusts their ages depending on the game and makes sure that Vanessa is always 2 years younger than him. He says "well mommy, if I am 40 then Vanessa is 38". We went to his pediatrician’s office yesterday for his allergy shot, and he just spoke away with the nurse like never before. This nurse has administered the shots for the last 3 years and she knew Jonathan at his worse. Her mouth dropped after a few minutes into the conversation. He told her where daddy was and where he was going for camp, answered every question she asked and if she said something incorrect, he would politely tell her the correct answer, etc. Then he goes "hey Mrs. Karen, do you know how old my daddy is?" and she started guessing ages. He played along until the 4th miss, when he told her 36. Then she said "wow Jonathan, you know? I am 20 years older than your dad. Do you know how old I am?" And he looked up a bit and then said "well, that makes you 56 years old". His pediatrician was there, listening in the background and they looked at each other’s eyes and said "wow Jonathan, you are really smart" and then told me how incredible it was that he could do math like that. To me is like Dustin Hoffman in Rain Man and I reject that a bit. But I know that he will do well in math. So that is a relief. I am grateful that he is starting to come out of Autism and if he is going to keep some traits, I welcome math.
For the record, I took Vanessa to her 4 year-old checkup and brought the measles vaccines to have her pediatrician inject it. I spoke with her about it last year and told her that I wanted to break them apart. She told me that she only purchased the MMR together, but if I purchased it on my own, as long as the vial was intact and with a good expiration date, she could administer it. Jonathan’s DAN! Dr. carries them and I purchased it last month. The pediatrician injected it on July 9th. That day she seemed a bit more tired than usual and irritable. But I pumped her with probiotics and Vitamin C. Because we travel, I feel more comfortable if my kids are protected. If I didn’t have a chance to separate the MMR, I would never give it to Vanessa. But since they can be administered separately, we decided to do it. I will have the doctor administer the Mumps vaccines late November and the Rubella in May 2009.
Monday, July 7, 2008
Started Regular Summer Camp
Jonathan started summer camp last week. He attended a regular summer camp at a farm and loved it. I was so worried, but the leader said that he did great. He fit in and did everything and made 1 friend. He had no trouble understanding and following directions. Each day they had different activities. "Mom, I saw the cows today and their poop is really big :)". "Mom, I saw the pigs today and they stink". "Mom, I made honey bread today". Those are just a few samples. He was excited to come home and tell me about his day. The last day, they had water day and he had no trouble getting wet with the other kids. He even took his shirt off.
For the July 4th weekend, we went to his aunt's house in NJ and it was quite incredible to observe him. He loved it: "Mom, this is a really cool house. I have never been here before. I love this house". We could not understand why he kept telling us that he had never been there before. I even asked him to find the bathroom and he didn't really seem to remember but suddenly he did. Then he said "Oh, I remember the bathroom". It is quite an amazing thing for me to witness. This awakening. He even played with the dogs and threw the balls and was totally into it.
Today he started the new summer camp - Sports. He is going to be in this camp for 2 weeks. One different sport each day. He did really well. He seemed a bit lost this morning since all the kids went to play in a big circle and he didn't really know what was going on. But he was not anxious and went voluntarily. He said bye to me and walked towards them. I was worried all day. But when my dad picked him up, he said that he sounded very happy. When I got home, he told me that it was a fun day and they played basketball and went to the pool.
I did tell the leaders in advanced that Jonathan had high functioning autism and both (last week's and this week's) seemed okay with it. They both had the same reaction - "don't worry. I've had autistic kids before". But once I dropped him off, the leaders did not hold his hand for anything. He was treated as a regular neurotypical kid. That is what I want (I think). He is doing well so far.
Tonight, as I got the kids ready for bed, Jonathan noticed the word "PRINCESS" hanging on one of Vanessa's walls. It is a decoration that someone gave Vanessa when she was born. Each letter is hanging on its own. He came to me and said "mom, why didn't you make the word "PRINCE" for my room? I want to be a PRINCE". I loved it. He is just noticing everything and behaving as any neurotypical kids "I want what my siblings have". I love it!!!
Things that worry me:
For the July 4th weekend, we went to his aunt's house in NJ and it was quite incredible to observe him. He loved it: "Mom, this is a really cool house. I have never been here before. I love this house". We could not understand why he kept telling us that he had never been there before. I even asked him to find the bathroom and he didn't really seem to remember but suddenly he did. Then he said "Oh, I remember the bathroom". It is quite an amazing thing for me to witness. This awakening. He even played with the dogs and threw the balls and was totally into it.
Today he started the new summer camp - Sports. He is going to be in this camp for 2 weeks. One different sport each day. He did really well. He seemed a bit lost this morning since all the kids went to play in a big circle and he didn't really know what was going on. But he was not anxious and went voluntarily. He said bye to me and walked towards them. I was worried all day. But when my dad picked him up, he said that he sounded very happy. When I got home, he told me that it was a fun day and they played basketball and went to the pool.
I did tell the leaders in advanced that Jonathan had high functioning autism and both (last week's and this week's) seemed okay with it. They both had the same reaction - "don't worry. I've had autistic kids before". But once I dropped him off, the leaders did not hold his hand for anything. He was treated as a regular neurotypical kid. That is what I want (I think). He is doing well so far.
Tonight, as I got the kids ready for bed, Jonathan noticed the word "PRINCESS" hanging on one of Vanessa's walls. It is a decoration that someone gave Vanessa when she was born. Each letter is hanging on its own. He came to me and said "mom, why didn't you make the word "PRINCE" for my room? I want to be a PRINCE". I loved it. He is just noticing everything and behaving as any neurotypical kids "I want what my siblings have". I love it!!!
Things that worry me:
- He keeps making noises with his throat as if he has something stuck. Today he even said that it bothered him. I am going to make an appointment with his pediatrician. This is a daily event. I don't think it is allergies anymore.
- He still hums, although he has dramatically improved
- He is holding his private areas constantly. He says it doesn't hurt and he doesn't need to go to the bathroom. So I don't know why. I need to ask his pediatrician.
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