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!
Tuesday, August 25, 2009
Thoughtful House to be on NBC Dateline this Sunday
Very exciting news, I hope! Thoughtful House, the autism treatment center we have started to work with for Josh and will be visiting in a few weeks, will be featured on NBC this coming weekend. This is a HUGE deal as the "alternative" and biomedical approaches to treating autism are rarely portrayed in a positive light in the media, mostly due to these approaches placing some blame on vaccines, I believe. So, for those of you who are interested, set your DVR and hope that this invaluable information can be presented in a fair manner so that autism treatment and prevention can be taken to the next level. With 1 in 150 kids and 1 and 95 boys being diagnosed with autism, we need to pay attention and get to the bottom of this epidemic.
Here are the times:
- 10 minute segment on Today show this Friday, 8/28
- 10 minute segment on NBC Nightly News on Saturday or Sunday, 8/29 or 8/30
- 60 minute Dateline special on Sunday, 8/30
Here is a link to a letter from Thoughtful House with their thoughts on this opportunity:
http://www.thoughtfulhouse.org/newsletters/2009-08.pdf
Here are the times:
- 10 minute segment on Today show this Friday, 8/28
- 10 minute segment on NBC Nightly News on Saturday or Sunday, 8/29 or 8/30
- 60 minute Dateline special on Sunday, 8/30
Here is a link to a letter from Thoughtful House with their thoughts on this opportunity:
http://www.thoughtfulhouse.org/newsletters/2009-08.pdf
Wednesday, August 19, 2009
Didn't realize how long it has been
Wow, I didn't realize how many weeks I let go by without an update. I am not sure where August has gone. I finally spent a few weeks to deal with a lot of my feelings and grief that I hadn't dealt with yet. I put aside things around the house, which I am still paying for (and I am SO sorry if I am delinquent on a thank you note to you!) and took time for myself. I think I spent the first several months in action mode after we knew Josh's diagnosis and I needed to deal with all my feelings I brushed aside during that time. I've had my angry, sad, and just plain tired days. I needed that time, and I'm sure these times will come and go, but I'm getting back into being a bit more productive again.
We have been seeing marked improvements in Josh, as have his therapists. Josh's speech is improving in clarity and he's picking up more and more phrases. He is doing a great job with puzzles now as well as picking up the idea of matching, sorting and grouping. I have also been able to get some parent training while Josh is in his ABA therapy. It has been helpful and I've gotten some great pointers on dealing with behaviors that are difficult for our family. We have already seen improvements with sharing toys, playing with Emma, reducing biting (a sensory issue, stim rather than behavioral so my tactics weren't helping), and getting to bed without 20 trips around the house guessing which ball he says he wants to sleep with (his pronunciation for baseball, basketball, soccer ball, and bouncy ball are almost indistinguishable).
Josh had an issue with ingrown toenails on both of his big toes. We did all we could to treat them without antibiotics, but were unsuccessful. He ended up having to take a round of antibiotics, accompanied by an anti-fungal since he'd likely have his yeast overgrowth issue come back in his digestive system. He finished them, then broke out in hives all over his body. It took me awhile, and with input from our local nutritionist, figured out he did not tolerate the sulfate-based antibiotics well. Anyway, his toes have cleared up for now, and hopefully we have dodged the need for surgery to correct his wide nails until he gets older and won't need sedation.
He recently had his 1-year evaluation with ECI (Early Childhood Intervention). It was 1 year ago when we first had him evaluated because we were concerned about his speech delays and head banging. Then, ECI said his speech delay was about 3 months behind. We thought it to be more by most standards, but it was three months by state standards. Now, his speech is about a year behind, but his cognitive language is only a few months behind. It's greatly helped because he knows his colors, shapes and letters.
Josh has an amazing memory (as does Emma) and attention to details. It was so easy to teach him his letters and he's pointing out letters and shapes everywhere we go. He points out the "triangle" every time we see a yield sign in the car. I remember when Emma was two, I was amazed by her memory and sense of where we were at. She would point out where different places were located as we drove through town. She knew EVERYONE's names. Josh has started to do the same. When we drive down the main road out of our neighborhood, he points to our friends' neighborhood, says, "That way. Jennifer and Nate." He points toward their street. As we drive by the road that we used to take to daycare he says the name of our former daycare. Yesterday, when I took him to his ABA therapy, a car pulled up next to us and Josh started saying, "Hi Jake!" I talked with his mom. Jake isn't the child who goes to Josh's therapy center, but a sibling! I was amazed. It just gives me more confidence that he knows so much that is going on, even though we struggle with communication and socialization skills. If we can keep progressing like this, I know we'll be more and more amazed by all that he has inside of him. I know he's a smart and loving boy and I hope he recovers fully someday so that everyone can instantly see what we see.
I had my first phone appointment with the Thoughtful House nutritionist. She was great and gave us some adjustments for his diet and has ordered lab work to check his metabolic levels. I'll be interested to get those results and see how they compare to the initial labs we had done in March. She also gave me some great suggestions for hiding more vegetables in foods for him. I've turned it into a game with Emma, since she's liked a lot of these new recipes as well. She's the taste tester to let me know if the food tastes good or not, then I have her guess the hidden vegetables.
So, now that I'm getting our house and life back under control again (relatively), my blog plan is to blog more often and write less each time. I let my ideas pile up, then figure I don't have enough time to write about them. Emma will also be back in school, so I can get updates done during nap time, I hope. I have tons of Emma stories to share about our summer home together, as well as updates on Kate as her little personality is showing more and more each day. Emma's off to first grade on Monday and is excited about going back to school. I am going to miss her. She is great company going to Josh's therapies and has been a real trooper going all around with us with relatively little complaining. She's given us themes for our weeks, created adventures and games for us to play, helped me with Josh's therapy exercises and provided some good laughs. So, I've loved having her around and I'm sure having her back in school will be easier in some ways and harder in others.
To end on a funny note, Josh's occupational therapist had to explain part of his therapy to me in case it was replicated at home. Josh was completing a farm puzzle, one that we have at home as well. She said he started making the animal sounds for the farm animals and she encouraged it. He got to the goat and stopped. I told her he probably stopped because I was never sure what a goat says when we did the puzzle at home. She didn't either, so she said she told him, "Goats are always eating. Chomp. Chomp. Chomp." Josh repeated back, "Hump. Hump. Hump." We got a good laugh.
Blessings,
Bonnie
We have been seeing marked improvements in Josh, as have his therapists. Josh's speech is improving in clarity and he's picking up more and more phrases. He is doing a great job with puzzles now as well as picking up the idea of matching, sorting and grouping. I have also been able to get some parent training while Josh is in his ABA therapy. It has been helpful and I've gotten some great pointers on dealing with behaviors that are difficult for our family. We have already seen improvements with sharing toys, playing with Emma, reducing biting (a sensory issue, stim rather than behavioral so my tactics weren't helping), and getting to bed without 20 trips around the house guessing which ball he says he wants to sleep with (his pronunciation for baseball, basketball, soccer ball, and bouncy ball are almost indistinguishable).
Josh had an issue with ingrown toenails on both of his big toes. We did all we could to treat them without antibiotics, but were unsuccessful. He ended up having to take a round of antibiotics, accompanied by an anti-fungal since he'd likely have his yeast overgrowth issue come back in his digestive system. He finished them, then broke out in hives all over his body. It took me awhile, and with input from our local nutritionist, figured out he did not tolerate the sulfate-based antibiotics well. Anyway, his toes have cleared up for now, and hopefully we have dodged the need for surgery to correct his wide nails until he gets older and won't need sedation.
He recently had his 1-year evaluation with ECI (Early Childhood Intervention). It was 1 year ago when we first had him evaluated because we were concerned about his speech delays and head banging. Then, ECI said his speech delay was about 3 months behind. We thought it to be more by most standards, but it was three months by state standards. Now, his speech is about a year behind, but his cognitive language is only a few months behind. It's greatly helped because he knows his colors, shapes and letters.
Josh has an amazing memory (as does Emma) and attention to details. It was so easy to teach him his letters and he's pointing out letters and shapes everywhere we go. He points out the "triangle" every time we see a yield sign in the car. I remember when Emma was two, I was amazed by her memory and sense of where we were at. She would point out where different places were located as we drove through town. She knew EVERYONE's names. Josh has started to do the same. When we drive down the main road out of our neighborhood, he points to our friends' neighborhood, says, "That way. Jennifer and Nate." He points toward their street. As we drive by the road that we used to take to daycare he says the name of our former daycare. Yesterday, when I took him to his ABA therapy, a car pulled up next to us and Josh started saying, "Hi Jake!" I talked with his mom. Jake isn't the child who goes to Josh's therapy center, but a sibling! I was amazed. It just gives me more confidence that he knows so much that is going on, even though we struggle with communication and socialization skills. If we can keep progressing like this, I know we'll be more and more amazed by all that he has inside of him. I know he's a smart and loving boy and I hope he recovers fully someday so that everyone can instantly see what we see.
I had my first phone appointment with the Thoughtful House nutritionist. She was great and gave us some adjustments for his diet and has ordered lab work to check his metabolic levels. I'll be interested to get those results and see how they compare to the initial labs we had done in March. She also gave me some great suggestions for hiding more vegetables in foods for him. I've turned it into a game with Emma, since she's liked a lot of these new recipes as well. She's the taste tester to let me know if the food tastes good or not, then I have her guess the hidden vegetables.
So, now that I'm getting our house and life back under control again (relatively), my blog plan is to blog more often and write less each time. I let my ideas pile up, then figure I don't have enough time to write about them. Emma will also be back in school, so I can get updates done during nap time, I hope. I have tons of Emma stories to share about our summer home together, as well as updates on Kate as her little personality is showing more and more each day. Emma's off to first grade on Monday and is excited about going back to school. I am going to miss her. She is great company going to Josh's therapies and has been a real trooper going all around with us with relatively little complaining. She's given us themes for our weeks, created adventures and games for us to play, helped me with Josh's therapy exercises and provided some good laughs. So, I've loved having her around and I'm sure having her back in school will be easier in some ways and harder in others.
To end on a funny note, Josh's occupational therapist had to explain part of his therapy to me in case it was replicated at home. Josh was completing a farm puzzle, one that we have at home as well. She said he started making the animal sounds for the farm animals and she encouraged it. He got to the goat and stopped. I told her he probably stopped because I was never sure what a goat says when we did the puzzle at home. She didn't either, so she said she told him, "Goats are always eating. Chomp. Chomp. Chomp." Josh repeated back, "Hump. Hump. Hump." We got a good laugh.
Blessings,
Bonnie
Monday, July 27, 2009
Good progress and official diagnosis
I am SO overdue on a post. We can blame Kate for deciding she doesn't want to go down for the night until closer to 10:00. By the time dishes are done, I haven't really had the energy or inspiration to write. We can also blame the Bachelorette since I'm hooked watching it Monday nights. Enough excuses. Kate and Josh are both napping, so I'm going to get a go on an update.
We are off and running on all of Josh's therapies. He's been doing his ABA all day Tuesdays and Thursdays for about a month now. He is very happy there and I was able to observe him by camera last week. He is responding very well to the therapists and enjoys the individual attention he gets. Some of you have asked for more details on ABA and what he does there. ABA is behavioral therapy to teach him how to behave and is an individual program based on his development. His current program includes the following:
We continue to see many improvements in other development! Josh is making eye contact with us when requesting to watch a show. He gets the remote, comes to one of us, looks in the eye and says, "Watch Barney, please." And, he's figured out that a smile makes us a little more likely to say yes. He has a long way to go on eye contact, but it's definitely improving. Another exciting moment was when we were at the doctor's office (not the HORRIBLE visit I mentioned on Facebook!). There was a toy car in the room. Josh pushed it around and made car sounds. Typically, he pushes cars back and forth to watch the wheels turn around, or picks them up to spin the wheels with his hands and watch them spin. So, this is a big step in "appropriate play" in our new world lingo.
He's been throwing out several longer phrases. He was playing with a toy vacuum recently. He wanted it on and said, "ON." I told him, "You can turn it on." He said, "I can turn it on" and proceeded to turn it on. Very exciting! The most exciting verbal expression from the last two weeks was last week. There was a small package at the bottom of the swim diaper box. It had a small blow up beach ball in it. I set it on the table while I got him dressed to swim. He pointed to the package and asked, "What's that?" He asked me two times! This is exciting because Josh initiated the conversation and asked me something. For all of the language Josh has been building, it is usually naming objects or requests for things he wants. So, for him to initiate conversation was extremely exciting!
I mentioned that Josh is starting to imitate a lot more. Emma hurt herself last week can came over to me crying. Josh was right behind her copying her every sound and move. Emma touched her head and cried. Josh touched his head and cried. Next thing I know, I am hugging one child on each leg, with echoing cries. I chuckled my way through that situation.
I have been reading about Texas laws on insurance coverage for autism treatments. For years, parents have been avoiding getting an autism diagnosis because it shut the door on insurance coverage. It was treated as a mental disability that was not treatable. Texas and several other states have passed laws in the last two years to require insurance companies to cover autism treatments including ABA therapy. Our insurance covers 30 visits/year without the diagnosis, but with a diagnosis will cover 60 visits/year and that can possibly be extended depending on how much is spent on our other therapies. One of the ladies at the ABA therapy center Josh is at, helped us work through insurance coverage and with his autism diagnosis, we are currently approved for 60 visits! I cannot begin to explain what a relief this is and I just know God is walking me through this journey we're on.
The last few months have been an absolute blur. We went from picking up on there being more going on with Josh than a speech delay, getting metabolic testing, to starting to read about autism, to realizing he had it, to figuring out what that meant for us and how we were going to deal with it. As a mom, there is such an emotional connection to your child, that when something isn't right with your child, you feel it too. We got this diagnosis from the pediatrician and were given a packet of resources and told that she'd write referrals if we needed them for the therapies we decided on. I was so lost. There were so many things to understand, so many decisions to make, all while grieving for what this means for Josh's future. I feel like a switch turned on inside of me. What mattered the day before didn't matter anymore. Nap time and after getting the kids to bed, I was online reading about autism, reading books from the library and just absorbing everything I could. I had a pit in my stomach and waking moments at night would flow countless autism words and treatments through my head. I prayed, but even that was a blur. At some point in this, God gave me peace. I hit a point of overwhelming peace and knew that Josh would be okay. I don't know what "okay" will look like, but I know we'll be fine. God took over at some point and as we've hit critical decision points, I get these overwhelming feelings that tell me what to do. I can only explain it as faith. I find this important to share, as you have all been so complimentary of our treatment path for Josh, but I have to share that it has been nothing I have done. I have felt lost quite a bit of the time and if it weren't for all the angels God has sent along the way, I would be a total mess. God sent me angels to help me research, listen to my theories about new symptoms and rashes, talk through treatment options, figure out how to fund treatments, give me words of love and encouragement, and also to treat me like I am still Bonnie.
Lastly, we got Josh's "official" diagnosis from a developmental pediatrician. We weren't going to bother with the label since we were just worried about getting Josh help, but with Texas laws, the label helps us get additional insurance coverage for Josh's therapies. The diagnosis for Josh is PDD-NOS which stands for Pervasive Development Disorder-Not Otherwise Specified and is on the autism spectrum. He scored a 10 on the assessment. The cut off for the autism spectrum is 7. 12 and over is considered classic autism. The doctor was extremely nice and took his time with us. From the emotional side, it wasn't a shock to us and based on my reading, I knew the diagnosis. He was very complimentary on the treatment paths we have chosen for Josh as well as how early we have been able to intervene. He also found merit in the theory that malabsorption and digestive issues can cause kids to end up on the autism spectrum. He said Josh was extremely analytical and smart and was very optimistic about his prognosis for recovering and progressing in his development. We will benchmark again in a year and he felt hopeful that "Josh will be a different child the next time I see him." He recommended some genetic testing to rule out some of the potential causes of autism and also so our kids will know if they are carriers for one of the genetic causes of autism. He also recommended some testing to further confirm malabsorption issues. I'll review all of that with Thoughtful House when we head there next month.
Kate is turning into Laura P. Laura P. is a little girl I used to babysit. Simply, when her mom was gone, she cried. When I babysat her, I would attempt to comfort her and walk her around as she cried for her mother. There was little I could do to make her happy. I had figured out at some point that turning on home videos of her parents settled her down. Well, Kate has been screaming for me when I have been getting out of the house. She cried for Danny for 45 minutes on Sunday when I went out with Emma. My mom watched her while Danny and I took Josh to the developmental pediatrician. She screamed for my mom. Both times, she stopped when I walked in the house. It makes me feel sad to be apart from her if that is what she does. I remember babysitting Laura P. and it was stressful. I don't want to put others through that. So, we'll keep working on it and hopefully this is just a phase. Kate is laughing quite a bit more. She has rolled over a couple of times and we're trying to convince her to do it more!
Emma has been continuing to work on learning the value of a dollar. She earns $3 per week for doing her chores. If she complains or doesn't do her jobs, we take money off of what she'll get for the week. I like the amount because she can't get a significant toy too frequently (a $10-$15 one). She has to save a few weeks and our hope is that she'll learn to save her money. Emma is not a natural saver. If she has money, it's burning a hole in her pocket and she'll find something that costs less than what she has. I regret the day she learned about the dollar section at Target. I grit my teeth and refrain from buying her any toys so that she'll learn to save and value what she buys. She has been dreaming about American Girl dolls for months. I explained to her that they are $95. If she can save half of the money, we will pay the rest. I figure that if she wants it bad enough to save that much, she'll understand the value by that point. We have also showed her the similar dolls at Target that are $22. After Easter, she had enough money to buy one of those and she did. She occasionally goes back to American Girl doll magazines and talks about saving up $45 (I rounded down for her) for one. Last week, she resolved to save. At $7 in her bank, she knew she had a way to go, but really wanted one. We went into Bath and Body Works together and she spotted a pink rubber duck. Yes, a pink rubber duck. She wanted it. I told her I was not going to spend $4 on a rubber duck that we didn't need. She said she could use her money. Really, Emma? Sigh. I feel defeated. "It's my money, Mommy," she told me. I sighed another breath of defeat, "Fine, Emma. It is your money and if you find value in a pink rubber duck, whatever." I can only hope that some day, she'll learn to value a dollar, or else appreciate being able to bathe in a rainbow of rubber duckies.
Over and out. No promises on my update schedule, but it can only get better, right?
We are off and running on all of Josh's therapies. He's been doing his ABA all day Tuesdays and Thursdays for about a month now. He is very happy there and I was able to observe him by camera last week. He is responding very well to the therapists and enjoys the individual attention he gets. Some of you have asked for more details on ABA and what he does there. ABA is behavioral therapy to teach him how to behave and is an individual program based on his development. His current program includes the following:
- Receptive comprehension. Recognizing names of objects, following commands, etc.
- Identical matching. Putting block puzzle pieces into their corresponding spots, matching cards, objects.
- Manding. Teaching to make requests. They set up scenarios or take natural opportunities to get him to request what he wants.
- Fill-ins. A phrase is started and he fills in the blank, such as "Ready, set, go." "I love you." "A cow says moo."
- Play time. How to socialize with peers. When we were observing, the therapist set up a scenario where a peer had a toy Josh wanted and worked with him to request it.
- Spontaneous imitation. Copying what someone else is doing. We have seen HUGE improvements here! Being able to copy and mimic someone else's words and behavior is a critical step in language development.
- Instruction following.
We continue to see many improvements in other development! Josh is making eye contact with us when requesting to watch a show. He gets the remote, comes to one of us, looks in the eye and says, "Watch Barney, please." And, he's figured out that a smile makes us a little more likely to say yes. He has a long way to go on eye contact, but it's definitely improving. Another exciting moment was when we were at the doctor's office (not the HORRIBLE visit I mentioned on Facebook!). There was a toy car in the room. Josh pushed it around and made car sounds. Typically, he pushes cars back and forth to watch the wheels turn around, or picks them up to spin the wheels with his hands and watch them spin. So, this is a big step in "appropriate play" in our new world lingo.
He's been throwing out several longer phrases. He was playing with a toy vacuum recently. He wanted it on and said, "ON." I told him, "You can turn it on." He said, "I can turn it on" and proceeded to turn it on. Very exciting! The most exciting verbal expression from the last two weeks was last week. There was a small package at the bottom of the swim diaper box. It had a small blow up beach ball in it. I set it on the table while I got him dressed to swim. He pointed to the package and asked, "What's that?" He asked me two times! This is exciting because Josh initiated the conversation and asked me something. For all of the language Josh has been building, it is usually naming objects or requests for things he wants. So, for him to initiate conversation was extremely exciting!
I mentioned that Josh is starting to imitate a lot more. Emma hurt herself last week can came over to me crying. Josh was right behind her copying her every sound and move. Emma touched her head and cried. Josh touched his head and cried. Next thing I know, I am hugging one child on each leg, with echoing cries. I chuckled my way through that situation.
I have been reading about Texas laws on insurance coverage for autism treatments. For years, parents have been avoiding getting an autism diagnosis because it shut the door on insurance coverage. It was treated as a mental disability that was not treatable. Texas and several other states have passed laws in the last two years to require insurance companies to cover autism treatments including ABA therapy. Our insurance covers 30 visits/year without the diagnosis, but with a diagnosis will cover 60 visits/year and that can possibly be extended depending on how much is spent on our other therapies. One of the ladies at the ABA therapy center Josh is at, helped us work through insurance coverage and with his autism diagnosis, we are currently approved for 60 visits! I cannot begin to explain what a relief this is and I just know God is walking me through this journey we're on.
The last few months have been an absolute blur. We went from picking up on there being more going on with Josh than a speech delay, getting metabolic testing, to starting to read about autism, to realizing he had it, to figuring out what that meant for us and how we were going to deal with it. As a mom, there is such an emotional connection to your child, that when something isn't right with your child, you feel it too. We got this diagnosis from the pediatrician and were given a packet of resources and told that she'd write referrals if we needed them for the therapies we decided on. I was so lost. There were so many things to understand, so many decisions to make, all while grieving for what this means for Josh's future. I feel like a switch turned on inside of me. What mattered the day before didn't matter anymore. Nap time and after getting the kids to bed, I was online reading about autism, reading books from the library and just absorbing everything I could. I had a pit in my stomach and waking moments at night would flow countless autism words and treatments through my head. I prayed, but even that was a blur. At some point in this, God gave me peace. I hit a point of overwhelming peace and knew that Josh would be okay. I don't know what "okay" will look like, but I know we'll be fine. God took over at some point and as we've hit critical decision points, I get these overwhelming feelings that tell me what to do. I can only explain it as faith. I find this important to share, as you have all been so complimentary of our treatment path for Josh, but I have to share that it has been nothing I have done. I have felt lost quite a bit of the time and if it weren't for all the angels God has sent along the way, I would be a total mess. God sent me angels to help me research, listen to my theories about new symptoms and rashes, talk through treatment options, figure out how to fund treatments, give me words of love and encouragement, and also to treat me like I am still Bonnie.
Lastly, we got Josh's "official" diagnosis from a developmental pediatrician. We weren't going to bother with the label since we were just worried about getting Josh help, but with Texas laws, the label helps us get additional insurance coverage for Josh's therapies. The diagnosis for Josh is PDD-NOS which stands for Pervasive Development Disorder-Not Otherwise Specified and is on the autism spectrum. He scored a 10 on the assessment. The cut off for the autism spectrum is 7. 12 and over is considered classic autism. The doctor was extremely nice and took his time with us. From the emotional side, it wasn't a shock to us and based on my reading, I knew the diagnosis. He was very complimentary on the treatment paths we have chosen for Josh as well as how early we have been able to intervene. He also found merit in the theory that malabsorption and digestive issues can cause kids to end up on the autism spectrum. He said Josh was extremely analytical and smart and was very optimistic about his prognosis for recovering and progressing in his development. We will benchmark again in a year and he felt hopeful that "Josh will be a different child the next time I see him." He recommended some genetic testing to rule out some of the potential causes of autism and also so our kids will know if they are carriers for one of the genetic causes of autism. He also recommended some testing to further confirm malabsorption issues. I'll review all of that with Thoughtful House when we head there next month.
Kate is turning into Laura P. Laura P. is a little girl I used to babysit. Simply, when her mom was gone, she cried. When I babysat her, I would attempt to comfort her and walk her around as she cried for her mother. There was little I could do to make her happy. I had figured out at some point that turning on home videos of her parents settled her down. Well, Kate has been screaming for me when I have been getting out of the house. She cried for Danny for 45 minutes on Sunday when I went out with Emma. My mom watched her while Danny and I took Josh to the developmental pediatrician. She screamed for my mom. Both times, she stopped when I walked in the house. It makes me feel sad to be apart from her if that is what she does. I remember babysitting Laura P. and it was stressful. I don't want to put others through that. So, we'll keep working on it and hopefully this is just a phase. Kate is laughing quite a bit more. She has rolled over a couple of times and we're trying to convince her to do it more!
Emma has been continuing to work on learning the value of a dollar. She earns $3 per week for doing her chores. If she complains or doesn't do her jobs, we take money off of what she'll get for the week. I like the amount because she can't get a significant toy too frequently (a $10-$15 one). She has to save a few weeks and our hope is that she'll learn to save her money. Emma is not a natural saver. If she has money, it's burning a hole in her pocket and she'll find something that costs less than what she has. I regret the day she learned about the dollar section at Target. I grit my teeth and refrain from buying her any toys so that she'll learn to save and value what she buys. She has been dreaming about American Girl dolls for months. I explained to her that they are $95. If she can save half of the money, we will pay the rest. I figure that if she wants it bad enough to save that much, she'll understand the value by that point. We have also showed her the similar dolls at Target that are $22. After Easter, she had enough money to buy one of those and she did. She occasionally goes back to American Girl doll magazines and talks about saving up $45 (I rounded down for her) for one. Last week, she resolved to save. At $7 in her bank, she knew she had a way to go, but really wanted one. We went into Bath and Body Works together and she spotted a pink rubber duck. Yes, a pink rubber duck. She wanted it. I told her I was not going to spend $4 on a rubber duck that we didn't need. She said she could use her money. Really, Emma? Sigh. I feel defeated. "It's my money, Mommy," she told me. I sighed another breath of defeat, "Fine, Emma. It is your money and if you find value in a pink rubber duck, whatever." I can only hope that some day, she'll learn to value a dollar, or else appreciate being able to bathe in a rainbow of rubber duckies.
Over and out. No promises on my update schedule, but it can only get better, right?
Thursday, July 9, 2009
4th and assessment results
So, I'm off to a slow start on my July blogging, but am getting back in the game.
We had a great 4th of July. The kids all wore their red, white and blue and Emma was able to thank a service man in Target who was in uniform. He was really nice to her and it was the perfect thing to do on the 4th. We did most of our celebrating on the 3rd, starting with a visit to my parents' house. We brought the blow up pool and the kids had a blast in their back yard. They cooked a great lunch for us. That evening, Danny's parents brought dinner over for us and we ate really well, again! Both of our families were great to us and gave me a nice break from cooking for the day. We watched fireworks from our front yard. I have always loved fireworks and have great memories of watching them growing up and hope to create some of those same memories with the kids as they get older. For now, we'll settle with Emma thinking it's awesome to see our neighborhood fireworks from the front yard.
I think Emma is starting to get a little bored with being home, but when I suggest some new things to do, she isn't interested. She's been acting out more than normal and I'm not sure if it is just part of her age and becoming more independent with her words and actions, or if she is using that for more attention now that Kate is here on top of our lives being turned upside down with all that we're doing for Josh. We'll figure it out and I pray it is just temporary. She is a sweet little girl and I don't want to spend my days punishing her more than praising her. She and Josh can be quite a comedic pair (see below). Last week, the kids wanted an umbrella stroller from the garage and were pushing it around the house. Josh went and got Emma's bike helmet and brought it to me to put it on. I put it on him and he went to sit on the stroller. I asked if he wanted me to push him and he replied, "No. Emma." He wanted Emma to push him. She was "busy" doing art, but he was all smiles waiting for her. I made her come see him and asked how she could resist playing with that smile?!? She obliged and they had a blast!
On the treatment front, we are all set to see an autism specialist in Austin in September. We will be heading to Thoughtful House in mid-September. After visiting with our nutritionist last month, she expressed some concerns with the vitamin dosages from our pediatrician. It really woke me up! I believe we are on the right path to treating Josh, but I want an expert to oversee Josh's treatment. We are working with mega-doses of vitamins and that can be toxic if not fully understood. I have done quite a bit of reading from the doctors at Thoughtful House and think that's the right place for us to be. My gut says our nutritionist is top notch and I had her re-work Josh's vitamin prescription, but I need someone on the medical side as well. I started the process to get Josh seen at Thoughtful House, beginning with about 2 hours of online forms, a complete medical, nutritional, developmental description of Josh. Since then, I've had a call with one of their coordinators to review all that information and gather more details. I faxed them all assessment and lab work we've done and also did a phone developmental assessment with them. I'll have a phone appointment with their nutritionist in August, then an exam with a doctor in September. We're looking forward to it. Until then, I'm continuing to work with our nutritionist here.
We received a lot of assessment results this past week. I requested the written reports from Josh's occupational, physical and speech assessments to send to Thoughtful House. Wow. Eye opening. I was most surprised by the physical therapy assessment. I always thought he had the fewest delays in gross motor skills (he runs and climbs, right?). However, that assessment ranked Josh in the 3rd percentile for gross motor skills based on the PDMS-2 assessment. In age equivalent, his skills ranged from 11 to 21 months. I was shocked. She had verbally told us the areas he needed work, but this is a much bigger gap than I pictured in my mind. We've been doing his exercises and seen great improvement so far. We'll see what the PT sees at his appointment next week.
From his occupational therapy assessment, his fine motor skills were in the 12th percentile, age equivalent 22-28 months. His speech percentile is 13th, but is only considered a "mild impairment." I don't get that, but I guess that is because he is pretty functional especially with his receptive language (he's come SO far here in the last 6 months!). We had been waiting to get on the schedule for all three therapies and there has been a hold up getting insurance approval for speech. I'm following up on that, but went ahead and got PT and OT scheduled to start tomorrow. OT will be on Friday mornings and PT on Wednesday mornings.
Josh is still enjoying his ABA therapy on Tuesdays and Thursdays. We met with his therapy counselor this week to go over their assessment results (VB-MAPP assessment). It tests several categories of skills expected by 18 months, 19-30 months, and 31-48 months. A child is set to attend a "typical" pre-school after passing assessments in all categories in the 31-48 month range. Josh had 3 categories in the 18 month level with gaps, the majority of categories in the 19-30 month were lagging, and he had only a few skills met in the 31-48 month grouping. Based on these results, his development plan was created and we'll get feedback on his progress every therapy session.
Honestly, it's a little alarming to see these assessment results in writing. We've been having so many more good days with Josh and we see so much progress. We often revert back to talking ourselves out of there being a problem, he's just a little delayed. So, we need these reality checks to keep us motivated to seek and provide treatments for him.
Josh is improving SO much! His fits and tantrums are significantly reduced, he is constantly picking up new words, his eye contact is improving, his balance is better. We have much to be thankful for, including the thoughts, prayers and support of our friends and family!
Subscribe to:
Posts (Atom)
