Quick post to share exciting accomplishments from this week! Josh's language has been reaching a new level. He has started to tell us words about his day! He went to his therapy on Monday. In the evening, he said to me, "New friend. Eric." When we returned to therapy Wednesday morning, I asked his therapist if a new friend named Eric started this week and she confirmed it.
He had his speech therapy yesterday and she commented on how much he was talking. She said his other therapists stopped them in the hallway because they couldn't believe how much he was talking! She said he did so many new things in therapy yesterday that she couldn't write them all down. The rest of the day was horrible with raging fits and head banging like I haven't seen in months, but I'll let go of that with today's accomplishments.
Tonight was the first time Josh let me read an entire story to him!!! We "read" books every night, but usually Josh has complete control of the book and will point to a few pictures and sometimes name them. We were excited to get to that point. I often try to read to him (honestly, a little discouraged to try some days), but have never gotten past reading more than one page. We got through all of "How animal mommies love their babies" tonight.
After reading and saying prayers, we talked in bed. He said "soccer ball" and I told him that Emma has another soccer game tomorrow. He said, "Nana, Uppa." referring to Danny's parents going to her last game. I told him that Nana will be there and that Grandma and Grandpa were coming too. I said that tomorrow is Uncle Chris' birthday and he would come over to celebrate tomorrow as well. Josh said, "Cake. Candles. Hot. Sing."
I am just on cloud nine!!! So often Josh's speech seems so memorized and often jumbled. For example, I thought I taught him to answer what his name was and how old he is, but he often doesn't distinguish the two questions apart. He'll repeat phrases he knows, but they don't always match the situation. But this new speech where he is telling us about what he did, what his experiences are and what he likes, is so exciting.
I have often wondered what his third birthday will be like, if he would understand or care about the celebration, or get excited about opening presents. I have renewed hope that there is still more to come. And, we'll just have to wait and see what his 3rd birthday will be like.
Friday, September 25, 2009
Our long awaited visit to Thoughtful House
Last week, we made our long awaited trip to Austin to go to Thoughtful House. We saw Lucas Ramirez for two hours, then had an hour follow up with the nutritionist. We had been anticipating this visit for such a long time. My parents travelled down with us so they could help watch the girls while we had our appointments with Josh. We could not have done it without them and we feel blessed to have their support!
A few weeks ago, we had sent off a stool sample for analyis and got the results back a few days before our appointment. It showed a high level of bad bacteria as well as strep in his digestive system. The lab also tested for which antibiotics and natural remedies the strains of bacteria were sensitive and resistant to.
During our visit with Lucas, we went through Josh's medical history, all lab work as well as our current assessment of his behaviors. I had completed these assessments back in July as well when we started processing paperwork to go to Thoughtful House. It was nice to see how in just two months there were areas I had previously categorized Josh as moderate-to-severe that I now categorize as slight-to-moderate.
Our action plan is to treat the bacterial and strep infections in Josh's system, adjust his supplements we had started with the nutritionist here in Dallas, and follow up in a few months. One of the things that I loved about Lucas was that he offered us tips on handling behavioral issues with Josh. Since he has a son with autism, he had been through self-injury and severe tantrums. Josh threw a huge fit in his office and he was great in giving us suggestions on handling it, as we were emotionally attached to the situation, and he wasn't. I have often wondered how to tell the difference when Josh was hitting his head into the wall or floor because he was in pain vs. to get attention from me.
He was great to talk to and also corrected me in saying sorry to Josh when he didn't want the snack I had for him. He pointed out that I didn't do anything wrong and by apologizing to Josh, I was implying to him that I did something wrong. We ask him to say sorry for hitting his sister (doing something wrong), so when I say sorry, he'll take it that I did something wrong. Seems obvious, but following in generations of apologizers in my mother's family (sorry,mom!), "sorry" is a word that flows out of my mouth all too frequently. This makes perfect sense because Josh is extremely literal. In the car, I had to hit my brakes suddenly and the motion made Josh scream. I said, "Sorry, Josh." Quite often, when I hit the brakes suddenly, he'll scream, then say, "Sorry, Josh." That was what I taught him. So, it was good that things like this were pointed out to me. It makes sense.
As we started all our assessments and treatments earlier this year, I expressed a feeling that we were somewhere in the middle of the typical world and the autism world. Many ASD kids are far worse off than Josh. Often, in ABA therapy, I'm told by other parents how lucky we are that Josh is verbal. There is this feeling of guilt being around other parents who covet the simple words coming from Josh's mouth. My parents got to see that on our visit. While they were in the waiting room with the girls, they saw many kids coming and going and visited with some of the families. They had tears in their eyes as they told me about some of the kids they met with much more severe symptoms and understood what I meant.
I'm in a different place now emotionally. I think I've gone through my phases of grief, or at least the initial round. August was my month to be angry and depressed, but September has been my month of acceptance. I feel like we are coming around to seeing more of what Josh can do rather than what he cannot. We are learning to be patient and compassionate rather than selfish (never-ending work to do here). We are seeing the blessings that have come from this. While we are doing everything we reasonably can for Josh, I accept that there is no "cure" and he may never be typical. However, he has overcome so much already and I am choosing to move forward without an outside benchmark of his success. He has a great sense of humor, an incredible memory, a smile to die for, and is working so hard to do the right thing. At two, I think he's worked hard to overcome so much.
I have been reading Ten Things Every Child with Autism Wishes You Knew. It is written so well and really helps to bring out compassion for Josh rather than frustration. I really think this book has helped me come around more on focusing my efforts on just loving, supporting, and accepting Josh. I begin each day with a prayer for patience, strength and love. One day at a time.
A few weeks ago, we had sent off a stool sample for analyis and got the results back a few days before our appointment. It showed a high level of bad bacteria as well as strep in his digestive system. The lab also tested for which antibiotics and natural remedies the strains of bacteria were sensitive and resistant to.
During our visit with Lucas, we went through Josh's medical history, all lab work as well as our current assessment of his behaviors. I had completed these assessments back in July as well when we started processing paperwork to go to Thoughtful House. It was nice to see how in just two months there were areas I had previously categorized Josh as moderate-to-severe that I now categorize as slight-to-moderate.
Our action plan is to treat the bacterial and strep infections in Josh's system, adjust his supplements we had started with the nutritionist here in Dallas, and follow up in a few months. One of the things that I loved about Lucas was that he offered us tips on handling behavioral issues with Josh. Since he has a son with autism, he had been through self-injury and severe tantrums. Josh threw a huge fit in his office and he was great in giving us suggestions on handling it, as we were emotionally attached to the situation, and he wasn't. I have often wondered how to tell the difference when Josh was hitting his head into the wall or floor because he was in pain vs. to get attention from me.
He was great to talk to and also corrected me in saying sorry to Josh when he didn't want the snack I had for him. He pointed out that I didn't do anything wrong and by apologizing to Josh, I was implying to him that I did something wrong. We ask him to say sorry for hitting his sister (doing something wrong), so when I say sorry, he'll take it that I did something wrong. Seems obvious, but following in generations of apologizers in my mother's family (sorry,mom!), "sorry" is a word that flows out of my mouth all too frequently. This makes perfect sense because Josh is extremely literal. In the car, I had to hit my brakes suddenly and the motion made Josh scream. I said, "Sorry, Josh." Quite often, when I hit the brakes suddenly, he'll scream, then say, "Sorry, Josh." That was what I taught him. So, it was good that things like this were pointed out to me. It makes sense.
As we started all our assessments and treatments earlier this year, I expressed a feeling that we were somewhere in the middle of the typical world and the autism world. Many ASD kids are far worse off than Josh. Often, in ABA therapy, I'm told by other parents how lucky we are that Josh is verbal. There is this feeling of guilt being around other parents who covet the simple words coming from Josh's mouth. My parents got to see that on our visit. While they were in the waiting room with the girls, they saw many kids coming and going and visited with some of the families. They had tears in their eyes as they told me about some of the kids they met with much more severe symptoms and understood what I meant.
I'm in a different place now emotionally. I think I've gone through my phases of grief, or at least the initial round. August was my month to be angry and depressed, but September has been my month of acceptance. I feel like we are coming around to seeing more of what Josh can do rather than what he cannot. We are learning to be patient and compassionate rather than selfish (never-ending work to do here). We are seeing the blessings that have come from this. While we are doing everything we reasonably can for Josh, I accept that there is no "cure" and he may never be typical. However, he has overcome so much already and I am choosing to move forward without an outside benchmark of his success. He has a great sense of humor, an incredible memory, a smile to die for, and is working so hard to do the right thing. At two, I think he's worked hard to overcome so much.
I have been reading Ten Things Every Child with Autism Wishes You Knew. It is written so well and really helps to bring out compassion for Josh rather than frustration. I really think this book has helped me come around more on focusing my efforts on just loving, supporting, and accepting Josh. I begin each day with a prayer for patience, strength and love. One day at a time.
Thursday, September 3, 2009
So disappointed in NBC
I'm so disappointed in the Dateline special, and am almost sorry I asked friends and family to watch it. Over the last several months, we have been surprised that there seems to be a lack of media interest in autism treatments. Our ears perked up on a July morning when we heard a blurb on the Today show talking about a study on the link between GI issues and autism. We ran to the TV to hear Dr. Nancy Snyderman follow up saying there is no link and parents should stop wasting time and money with special diets and dietary supplements that do not work and will not help their children. My jaw dropped. Diet changes alone had been helping Josh dramatically. So, we looked up the study ourselves and read it. The commentary along with the study didn't close the door on the link and said the study showed there is more to study.
Here is a link to the interview where Dr. Snyderman puts her personal spin on the study it doesn't appear she read:
http://today.msnbc.msn.com/id/26184891/vp/32168581#32168581
Here is a link to details on the study performed:
http://www.webmd.com/brain/autism/news/20090727/gi-problems-and-autism-no-link-found
We were so excited to learn that Dr. Wakefield and Thoughtful House were going to be featured in a major media outlet after being so disheartened with the coverage in July. However, when I saw the 10 minute clip on Friday's Today show, it appeared they were going to turn the story into a debate about whether or not vaccines cause autism. So, rather than a light-hearted update on my family in today's blog entry, I feel the need to tackle my view on how the media is handling autism and the vaccine debate.
As a parent, I want to see the hope in treatments for autism and the show barely touched on the actual treatments for autism that Thoughtful House and other DAN (Defeat Autism Now!) doctors perform. They made it seem that parents were following Dr. Wakefield because he had a sympathetic ear on what caused their child's autism. I took offense to that. Yes, parents want to understand what happened to their child, but more importantly, we want every opportunity to TREAT our children. Parents are not stupid people! Mainstream medicine and the media tell parents that autism is a psychiatric disorder, for which there is no treatment. That is not the case as parents of autistic children and these doctors are taking the time to learn and explore treatment options that follow biomedical practices. If Thoughtful House has patients from 48 states and 48 countries, it is because they are helping autistic children! Why on earth would there be this large of a following for treatments not covered by insurance if there were not results? I might have been stupid enough to blindly listen to past pediatricians who vaccinated my child with 5 vaccines at the same time he prescribed prednisone, albuterol, polmicort and antibiotics, but those days are over for me and my family. I am choosing to be educated about our health and make my own decisions rather than blindly trusting what a medical association says is "safe."
As for my thoughts on the topic of vaccines, I think they are a piece of the puzzle, but not the sole cause. Josh had health problems almost since birth, and in our autism puzzle that was his predisposition. Once I figured out his food allergies by doing elimination diets while nursing him (eliminating all common allergens from my diet and testing his reaction by eating them), I got his wheezing and allergy issues under control. It was his second year when the ear infections started to kick in, along with more eczema, runny noses, viruses, herpes simplex and so much more. I have obtained copies of is medical records since birth and taken a look back and he had a rough second year and took more antibiotics than I had recalled. I think his turning point was around 18 months old. Our new pediatrician put him on a slower vaccine schedule and her policy was to give measles, mumps and rubella individually rather than all together since she had seen the MMR vaccine change kids in her practice. She also did not give more than two vaccines at one time. So, at 18 months, Josh received just the measles and IPV vaccines. About 6 weeks later, the viruses kicked in, followed by the herpes simplex virus and it went downhill from there. His speech and awareness regressed, head banging ensued. We called ECI for an evaluation when he was 21 months old and it's gone on from there. His speech, imitation, response to his name were gone. Over the months to follow, there was some regression and some progress and our concerns grew from there. He continued to get ear infections and we continued to give him antibiotics. He spent his 2nd birthday watching the helicopter blades spin on a ride at Chuck-E-Cheese for 45 minutes. I didn't think it was odd, I thought it made him happy. His obsession with fans and things that spinned grew exponentially. At his 2-year checkup, we had enough behavior concerns that his pediatrician talked more seriously with me about vaccines and we opted to not do any at that checkup. Christmas was an all-time low. He was on antibiotics and went absolutely crazy! He was either crying or banging his head for days. I stopped the medication and he improved, but the head banging and severe tantrums continued for months. We expressed our concerns to our pediatrician and she encouraged us to perform metabolic tests on Josh, as she had seen digestive and malabsorption issues cause behavioral issues in kids. We performed that lab in March, 2 weeks after Kate was born and several weeks before we read and suspected autism. So, we are truly blessed our pediatrician was more conservative on vaccines, gave alternatives to antibiotics when we started having issues with his behavior, and that she was familiar with biomedical and nutritional testing. We were already on the path for treatment before we knew of autism.
I like how our pediatrician puts it best. Everyone is born with a garbage can to collect the toxins they are exposed to. Some have large garbage cans and some have small ones. Our job is to make sure we account for those kids with the small garbage cans. Basically, when there are more toxins than a body can handle, they get stuck in the digestive system and can leak into the bloodstream and the brain. So, do I think vaccines cause autism? No, not in a healthy child with a healthy immune system. I do, however, believe that the medical community owes it to parents to research these theories further. With 1 in 150 children being diagnosed with autism and 1 in 94 boys, we owe it to our future generations to figure out why these numbers are so high. Something is going on, and rather than shutting the door on researchers who are trying to figure out why, doctors should be lining up to figure out what these doctors are doing to reverse the autism diagnosis in so many children! As an adult, you are told not to get a flu shot when you are sick. However, pediatricians continue to prescribe antiobitics and administer vaccines for children in the same visit. I can't tell you how many times Emma was diagnosed with an ear infection and prescribed antibiotics in the same visit she was administered four vaccines.
We need to be smarter people. We don't care about what we eat, what we clean with, or the chemicals on our carpet until they affect us. We trust that when a doctor says we need a medication or vaccine and that it is safe, that is true. They are smarter than we are, right? No. There are so many things that I wish I knew before having children, but I'm looking forward, not backward. But I do want others to think about their health and that of their children and know that you don't have to do everything a doctor tells you. Read about vaccines!!!! Read how they work to get your body to build antibodies to a given disease. Read about the diseases they are made to prevent and consider an alternative schedule. YOU get to choose the vaccination schedule for your child, not a doctor. If your child has an infection, a virus or their immune system is obviously busy fighting something, your can wait to vaccinate until the next appointment! I am hearing of more pediatricians doing this, most often after they have had a child close to them diagnosed with autism. Do our children need 36 vaccines by the age of three, more than any other country? Is chicken pox life threatening enough to warrant the vaccine ingredients to be injected in your 1-year-old? Read the ingredients on the vaccines.
I am SO thankful for the parents and doctors who have gone before us and pieced together the underlying health issues and how it can link to autism! I cannot imagine we would have made a fraction of the progress we have to date if there were not already proven paths for us to jump on. So, as I am disappointed in the reporting of NBC on this topic, it hasn't changed a thing except my skepticism of their objectivity. I cannot wait to make our first visit to Thoughtful House in just under two weeks! And, I look forward to the day when the news about biomedical autism treatments gets the front page treatment it deserves!
Here are links to responses to the Dateline episode from Thoughtful House and Dr. Wakefield:
http://www.thoughtfulhouse.org/newsletters/2009-08a.pdf
http://www.thoughtfulhouse.org/newsletters/2009-08b.pdf
Enough on this tangent. I felt like I needed to address this after being prematurely excited about the Dateline episode.
Coming up, Emma coverage! She started first grade and is such a big girl!
Here is a link to the interview where Dr. Snyderman puts her personal spin on the study it doesn't appear she read:
http://today.msnbc.msn.com/id/26184891/vp/32168581#32168581
Here is a link to details on the study performed:
http://www.webmd.com/brain/autism/news/20090727/gi-problems-and-autism-no-link-found
We were so excited to learn that Dr. Wakefield and Thoughtful House were going to be featured in a major media outlet after being so disheartened with the coverage in July. However, when I saw the 10 minute clip on Friday's Today show, it appeared they were going to turn the story into a debate about whether or not vaccines cause autism. So, rather than a light-hearted update on my family in today's blog entry, I feel the need to tackle my view on how the media is handling autism and the vaccine debate.
As a parent, I want to see the hope in treatments for autism and the show barely touched on the actual treatments for autism that Thoughtful House and other DAN (Defeat Autism Now!) doctors perform. They made it seem that parents were following Dr. Wakefield because he had a sympathetic ear on what caused their child's autism. I took offense to that. Yes, parents want to understand what happened to their child, but more importantly, we want every opportunity to TREAT our children. Parents are not stupid people! Mainstream medicine and the media tell parents that autism is a psychiatric disorder, for which there is no treatment. That is not the case as parents of autistic children and these doctors are taking the time to learn and explore treatment options that follow biomedical practices. If Thoughtful House has patients from 48 states and 48 countries, it is because they are helping autistic children! Why on earth would there be this large of a following for treatments not covered by insurance if there were not results? I might have been stupid enough to blindly listen to past pediatricians who vaccinated my child with 5 vaccines at the same time he prescribed prednisone, albuterol, polmicort and antibiotics, but those days are over for me and my family. I am choosing to be educated about our health and make my own decisions rather than blindly trusting what a medical association says is "safe."
As for my thoughts on the topic of vaccines, I think they are a piece of the puzzle, but not the sole cause. Josh had health problems almost since birth, and in our autism puzzle that was his predisposition. Once I figured out his food allergies by doing elimination diets while nursing him (eliminating all common allergens from my diet and testing his reaction by eating them), I got his wheezing and allergy issues under control. It was his second year when the ear infections started to kick in, along with more eczema, runny noses, viruses, herpes simplex and so much more. I have obtained copies of is medical records since birth and taken a look back and he had a rough second year and took more antibiotics than I had recalled. I think his turning point was around 18 months old. Our new pediatrician put him on a slower vaccine schedule and her policy was to give measles, mumps and rubella individually rather than all together since she had seen the MMR vaccine change kids in her practice. She also did not give more than two vaccines at one time. So, at 18 months, Josh received just the measles and IPV vaccines. About 6 weeks later, the viruses kicked in, followed by the herpes simplex virus and it went downhill from there. His speech and awareness regressed, head banging ensued. We called ECI for an evaluation when he was 21 months old and it's gone on from there. His speech, imitation, response to his name were gone. Over the months to follow, there was some regression and some progress and our concerns grew from there. He continued to get ear infections and we continued to give him antibiotics. He spent his 2nd birthday watching the helicopter blades spin on a ride at Chuck-E-Cheese for 45 minutes. I didn't think it was odd, I thought it made him happy. His obsession with fans and things that spinned grew exponentially. At his 2-year checkup, we had enough behavior concerns that his pediatrician talked more seriously with me about vaccines and we opted to not do any at that checkup. Christmas was an all-time low. He was on antibiotics and went absolutely crazy! He was either crying or banging his head for days. I stopped the medication and he improved, but the head banging and severe tantrums continued for months. We expressed our concerns to our pediatrician and she encouraged us to perform metabolic tests on Josh, as she had seen digestive and malabsorption issues cause behavioral issues in kids. We performed that lab in March, 2 weeks after Kate was born and several weeks before we read and suspected autism. So, we are truly blessed our pediatrician was more conservative on vaccines, gave alternatives to antibiotics when we started having issues with his behavior, and that she was familiar with biomedical and nutritional testing. We were already on the path for treatment before we knew of autism.
I like how our pediatrician puts it best. Everyone is born with a garbage can to collect the toxins they are exposed to. Some have large garbage cans and some have small ones. Our job is to make sure we account for those kids with the small garbage cans. Basically, when there are more toxins than a body can handle, they get stuck in the digestive system and can leak into the bloodstream and the brain. So, do I think vaccines cause autism? No, not in a healthy child with a healthy immune system. I do, however, believe that the medical community owes it to parents to research these theories further. With 1 in 150 children being diagnosed with autism and 1 in 94 boys, we owe it to our future generations to figure out why these numbers are so high. Something is going on, and rather than shutting the door on researchers who are trying to figure out why, doctors should be lining up to figure out what these doctors are doing to reverse the autism diagnosis in so many children! As an adult, you are told not to get a flu shot when you are sick. However, pediatricians continue to prescribe antiobitics and administer vaccines for children in the same visit. I can't tell you how many times Emma was diagnosed with an ear infection and prescribed antibiotics in the same visit she was administered four vaccines.
We need to be smarter people. We don't care about what we eat, what we clean with, or the chemicals on our carpet until they affect us. We trust that when a doctor says we need a medication or vaccine and that it is safe, that is true. They are smarter than we are, right? No. There are so many things that I wish I knew before having children, but I'm looking forward, not backward. But I do want others to think about their health and that of their children and know that you don't have to do everything a doctor tells you. Read about vaccines!!!! Read how they work to get your body to build antibodies to a given disease. Read about the diseases they are made to prevent and consider an alternative schedule. YOU get to choose the vaccination schedule for your child, not a doctor. If your child has an infection, a virus or their immune system is obviously busy fighting something, your can wait to vaccinate until the next appointment! I am hearing of more pediatricians doing this, most often after they have had a child close to them diagnosed with autism. Do our children need 36 vaccines by the age of three, more than any other country? Is chicken pox life threatening enough to warrant the vaccine ingredients to be injected in your 1-year-old? Read the ingredients on the vaccines.
I am SO thankful for the parents and doctors who have gone before us and pieced together the underlying health issues and how it can link to autism! I cannot imagine we would have made a fraction of the progress we have to date if there were not already proven paths for us to jump on. So, as I am disappointed in the reporting of NBC on this topic, it hasn't changed a thing except my skepticism of their objectivity. I cannot wait to make our first visit to Thoughtful House in just under two weeks! And, I look forward to the day when the news about biomedical autism treatments gets the front page treatment it deserves!
Here are links to responses to the Dateline episode from Thoughtful House and Dr. Wakefield:
http://www.thoughtfulhouse.org/newsletters/2009-08a.pdf
http://www.thoughtfulhouse.org/newsletters/2009-08b.pdf
Enough on this tangent. I felt like I needed to address this after being prematurely excited about the Dateline episode.
Coming up, Emma coverage! She started first grade and is such a big girl!
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