I am big on reading up on what is new in autism research. I have decided to go ahead and post links to any articles that I find that are of interest.
This one is on research into the possibility that it is caused by brain inflamation stemming from a problem with the immune response in the nervous system.
Doctors closer to finding cause of autism
November 14, 2004
Better and Worse?
It has been a while since I posted an update on Chandler P. Chelation has gone really well and each week that we have done it he has had real improvements. Unfortunately, due to financial restraints, we have to take a break from chelation for a bit. Since we have, his improvement has slowed.
Sorta.
It had kinda slowed down, although he was still making small gains, then about two weeks ago, he got a bad cold. He is almost recovered now, but oddly, he has become more interactive, with better eye contact and even being flirtatious with us, but his speech has dropped way off. I am hoping that this is just one of those setbacks that every one says are commonplace, and that he will pick back up soon.
Sorta.
It had kinda slowed down, although he was still making small gains, then about two weeks ago, he got a bad cold. He is almost recovered now, but oddly, he has become more interactive, with better eye contact and even being flirtatious with us, but his speech has dropped way off. I am hoping that this is just one of those setbacks that every one says are commonplace, and that he will pick back up soon.
October 12, 2004
OT - What does a popsicle taste like?
Today my 4 year old was eating a popsicle. I asked him if it was yummy. He said, "Yeah, it tastes like a question mark".
?
?
October 9, 2004
Confirmation that Gluten is BAD
I should also mention the mid week slump we had. On Wed. Chandler managed to steal half of his brother's PB and J sandwich, and oh boy did we get confirmation that the GFCF diet is working. He was miserable to deal with for the next two days. I guess it was a good reminder that all the work on the strict diet is worth the work, and just how far he has come, but I don't want any more of those reminders.
Chelation - Round Three
... I've got to believe it's getting better... Its getting better all the time....
We have finished round three and he continues to improve. This week was one of new achievements and more engagement. Yesterday he was in my husband's office and saw his baseball hat on the floor. He said "hat" and picked it up and put it on his dad's head. This turned into a fun game for him. Each time he put it on his dad's head, he would look him in the eye and wait for dad to put it back on his own head.
He is starting to use words more spontaneously. He was sitting on a bench that swings for several minutes while it was still. Someone started pushing it and he looked her in the eye and said, "swing". When he plays with his trains, he says, "choo, choo". He has added about 10 words to his vocabulary just in the last 5 days.
Today was exciting for me. I took him to occupational therapy. He is not crazy about the mini trampoline in there and his OT has to put him on it and bounce him up and down while he stands there with his knees locked, blank expression, waiting for it to be over so he can get off. Today he saw it and got right on it and started jumping up and down like a crazy person, laughing his head off, saying, "jump, jump, jump...." I started crying. It is so great to see him behaving like a two year old.
We have finished round three and he continues to improve. This week was one of new achievements and more engagement. Yesterday he was in my husband's office and saw his baseball hat on the floor. He said "hat" and picked it up and put it on his dad's head. This turned into a fun game for him. Each time he put it on his dad's head, he would look him in the eye and wait for dad to put it back on his own head.
He is starting to use words more spontaneously. He was sitting on a bench that swings for several minutes while it was still. Someone started pushing it and he looked her in the eye and said, "swing". When he plays with his trains, he says, "choo, choo". He has added about 10 words to his vocabulary just in the last 5 days.
Today was exciting for me. I took him to occupational therapy. He is not crazy about the mini trampoline in there and his OT has to put him on it and bounce him up and down while he stands there with his knees locked, blank expression, waiting for it to be over so he can get off. Today he saw it and got right on it and started jumping up and down like a crazy person, laughing his head off, saying, "jump, jump, jump...." I started crying. It is so great to see him behaving like a two year old.
October 4, 2004
Say Cheese!
We are starting round three of chelation and he is doing so well! He just seems a little brighter and happier every week. He uses his words more easily and learns new ones more quickly. It seems a steady trend.
So we haven't be able to get many good pictures of Chan for the last year, and I think I gave up and kinda put the camera in a drawer. So we got new cell phones with camera's in them, and surprise! Chandler is posing for the camera now!
Just a sample from this week.
So we haven't be able to get many good pictures of Chan for the last year, and I think I gave up and kinda put the camera in a drawer. So we got new cell phones with camera's in them, and surprise! Chandler is posing for the camera now!
Just a sample from this week.
October 1, 2004
Blessed are the meek
I came across this story last week and it meant so much to me. It was a wonderful reminder of how powerful these quiet little children can be, and that God can use them profound ways.
Autistic child's gift teaches lesson
about God's love; leads to church start
By George Henson
Staff Writer
THORNDALE—Some people think the days of miracles are past, but Pastor Larry Griffith says he knows better. He’s seen God use a child’s toy to start a church.
Griffith took a step of faith when he prepared to travel to Brazil with Evangelist Sammy Tippit earlier this summer, leaving behind his pregnant wife.
“One of the hardest things I’ve ever had to do was get on that plane instead of staying with her,” Griffith said.
But he still felt God’s leading to go. He received confirmation as he said his good-byes to his two sons.
His oldest son, Dallas, is 9 years old. He also is autistic. His father says Dallas lives primarily in his own world, and the key components of that world are his little toy Hot Wheels cars.
“He is very possessive of his toy cars, and had his favorite one that he always kept with him—his security blanket—in his hand,” Griffith recalled.
While some autistic children are not very vocal, Dallas is. Dallas asked his father to bring him back a car from his trip.
“Part of the price you pay for being a preacher’s kid is that everything is a life lesson,” Griffith said. “So I preceded to tell him that I would try, but I wasn’t sure if I would be able to or not. And he should remember that in Brazil, the children were very poor, and many of them had never had even one car or any other toy.”
Dallas stood before his father for a few seconds and then held out the hand that held his most precious possession.
“He told me to give it to a boy in Brazil. My wife and I were dumbfounded and just stood there in tears.” Autistic children tend to be self-centered and reluctant to share, Griffith explained.
“We knew at that moment that God was up to something very special,” he said.
The flight from Texas to Sao Paulo, Brazil, was a long one, and all the way there, Griffith’s thoughts were drawn back to his son’s gift of his most prized possession.
“I began to see that as a picture of what God has done for us—the way he gave his son that we might have eternal life,” he said.
In Brazil, he preached at First Baptist Church in Jardra, and he recounted the story of his son’s gift. In the midst of telling that story and relating to the congregation how it was a picture of God’s love, he asked if a 9-year-old boy were present. A boy named Jefferson came to front. Griffith presented Jefferson with the first toy he ever possessed on behalf of his son, Dallas, who was giving the first gift he ever gave.
“The congregation just wept,” Griffith said.
After the service, four men said they had been impressed that they needed to share the story of God’s gift of love with people in a nearby neighborhood that had no church. One of the men owned a garage where he worked on cars and said it could serve as a church for the community.
The next day, Griffith and the four men went door-to-door through an impoverished neighborhood. The residents’ poverty had hardened their hearts toward God, he said.
“They said, ‘God doesn’t love me.’ But as we shared the story of Dallas’ gift and God’s gift of his Son, we would see hearts melt, and 27 people gave their hearts to Christ that first day,” Griffith recalled.
The men decided that with so many making professions of faith in Christ, the meetings in the garage could not wait until the next Sunday but needed to start that night. Each of the 27 who had made commitments to Christ was present.
Griffith and the men continued witnessing to the people and telling the story of a boy’s gift and how it mirrored God’s gift. By the end of the week, 131 people had made professions of faith in Christ.
When Sunday came, the garage overflowed with people.
“It was the most amazing thing I’ve every seen God do—start a church with an 88-cent car,” Griffith said.
The church in the garage still doesn’t have a name. Charter members have to go through paperwork and receive city approval before they have an official name. But unofficially, Griffith has his own name for the congregation.
“I call it First Baptist Church of Dallas.”
Autistic child's gift teaches lesson
about God's love; leads to church start
By George Henson
Staff Writer
THORNDALE—Some people think the days of miracles are past, but Pastor Larry Griffith says he knows better. He’s seen God use a child’s toy to start a church.
Griffith took a step of faith when he prepared to travel to Brazil with Evangelist Sammy Tippit earlier this summer, leaving behind his pregnant wife.
“One of the hardest things I’ve ever had to do was get on that plane instead of staying with her,” Griffith said.
But he still felt God’s leading to go. He received confirmation as he said his good-byes to his two sons.
His oldest son, Dallas, is 9 years old. He also is autistic. His father says Dallas lives primarily in his own world, and the key components of that world are his little toy Hot Wheels cars.
“He is very possessive of his toy cars, and had his favorite one that he always kept with him—his security blanket—in his hand,” Griffith recalled.
While some autistic children are not very vocal, Dallas is. Dallas asked his father to bring him back a car from his trip.
“Part of the price you pay for being a preacher’s kid is that everything is a life lesson,” Griffith said. “So I preceded to tell him that I would try, but I wasn’t sure if I would be able to or not. And he should remember that in Brazil, the children were very poor, and many of them had never had even one car or any other toy.”
Dallas stood before his father for a few seconds and then held out the hand that held his most precious possession.
“He told me to give it to a boy in Brazil. My wife and I were dumbfounded and just stood there in tears.” Autistic children tend to be self-centered and reluctant to share, Griffith explained.
“We knew at that moment that God was up to something very special,” he said.
The flight from Texas to Sao Paulo, Brazil, was a long one, and all the way there, Griffith’s thoughts were drawn back to his son’s gift of his most prized possession.
“I began to see that as a picture of what God has done for us—the way he gave his son that we might have eternal life,” he said.
In Brazil, he preached at First Baptist Church in Jardra, and he recounted the story of his son’s gift. In the midst of telling that story and relating to the congregation how it was a picture of God’s love, he asked if a 9-year-old boy were present. A boy named Jefferson came to front. Griffith presented Jefferson with the first toy he ever possessed on behalf of his son, Dallas, who was giving the first gift he ever gave.
“The congregation just wept,” Griffith said.
After the service, four men said they had been impressed that they needed to share the story of God’s gift of love with people in a nearby neighborhood that had no church. One of the men owned a garage where he worked on cars and said it could serve as a church for the community.
The next day, Griffith and the four men went door-to-door through an impoverished neighborhood. The residents’ poverty had hardened their hearts toward God, he said.
“They said, ‘God doesn’t love me.’ But as we shared the story of Dallas’ gift and God’s gift of his Son, we would see hearts melt, and 27 people gave their hearts to Christ that first day,” Griffith recalled.
The men decided that with so many making professions of faith in Christ, the meetings in the garage could not wait until the next Sunday but needed to start that night. Each of the 27 who had made commitments to Christ was present.
Griffith and the men continued witnessing to the people and telling the story of a boy’s gift and how it mirrored God’s gift. By the end of the week, 131 people had made professions of faith in Christ.
When Sunday came, the garage overflowed with people.
“It was the most amazing thing I’ve every seen God do—start a church with an 88-cent car,” Griffith said.
The church in the garage still doesn’t have a name. Charter members have to go through paperwork and receive city approval before they have an official name. But unofficially, Griffith has his own name for the congregation.
“I call it First Baptist Church of Dallas.”
September 20, 2004
Chelation - Round One goes to the Challenger!
Words cannot describe how much hope I feel right now. After his first round of DMSA, 5 days, Chandler has taken some giant steps back to the little boy he was during his first year.
His eye contact is amazing, not quite what a regular child does, but now he is in the ball park. He will stand in front of Scott and I and look back and forth at each of us until one of us responds and pays attention to him.
I have set a few mental benchmarks for him so that when I saw them I would know that he was getting better. One was the first time he would call me "mommy" which he did in June, the first day that he was given DMSA as part of the "chelation challenge" to see if he had any metal poisoning. Another that he has yet to pass is the day he calls his big brother by name, as he has never referred to him with anything other than a shove or the occasional laugh.
This week we passed a benchmark when my boy did something I have been waiting six months to see. Friday at speech therapy he pointed to something! The therapist pointed to a tiny picture of a butterfly, and Chan pointed and said, "Bufry"! Sunday at church we were waiting for the elevator and he pointed to the floor number and said, "One".
Saturday, my mom bought him new shoes and he was kinda rolling up on his toes feeling them out. My mom and I started jumping and saying, "jump" and he watched both of us for a minute or two and then joined in. Looking at us straight in the eye and saying, "jump" with a big smile on his face!
Sunday morning we were driving to church and Scott and I started singing this song that plays on Noggin to our older son. Really simple song, "open, close, open, close. Up and down and up and down. Hot dog, Hot dog. Yum, yum, yum. Clap, clap, clap." When we stopped, Chandler started singing! "Haaa daaaa, haaaa daaaa. claaa, claaa, claaa." We were totally stunned so we sang the song again and he repeated it!!! I practically wet myself.
The list goes on and on. He is calling me "mommy" almost as much as "ma, ma" now. He runs to the kitchen at least once a day and asks for an "apple".
Yesterday were at a birthday party and there was a guy in a big bear costume and he said, "bear". He has been saying "bear" today. He was playing on the slide and would go to the top, look at me with huge eyes and a giant smile that very clearly communicated, "Hey mom! Look at me!", then slide down and do the same at the bottom. "Mom! Did you see what I did!" He did it over and over.
I have read that many parents are completely thrilled at what they see when they start chelation on their autistic children, but still didn't think I would be this excited. I have reminded to try to temper my expectations a bit in case he does not continue to improve this dramatically, or in case he has a set back, but right now it is hard not to get my hopes up that this is a sign that he might fully recover.
Praise God for the blessing that He brought us this week.
His eye contact is amazing, not quite what a regular child does, but now he is in the ball park. He will stand in front of Scott and I and look back and forth at each of us until one of us responds and pays attention to him.
I have set a few mental benchmarks for him so that when I saw them I would know that he was getting better. One was the first time he would call me "mommy" which he did in June, the first day that he was given DMSA as part of the "chelation challenge" to see if he had any metal poisoning. Another that he has yet to pass is the day he calls his big brother by name, as he has never referred to him with anything other than a shove or the occasional laugh.
This week we passed a benchmark when my boy did something I have been waiting six months to see. Friday at speech therapy he pointed to something! The therapist pointed to a tiny picture of a butterfly, and Chan pointed and said, "Bufry"! Sunday at church we were waiting for the elevator and he pointed to the floor number and said, "One".
Saturday, my mom bought him new shoes and he was kinda rolling up on his toes feeling them out. My mom and I started jumping and saying, "jump" and he watched both of us for a minute or two and then joined in. Looking at us straight in the eye and saying, "jump" with a big smile on his face!
Sunday morning we were driving to church and Scott and I started singing this song that plays on Noggin to our older son. Really simple song, "open, close, open, close. Up and down and up and down. Hot dog, Hot dog. Yum, yum, yum. Clap, clap, clap." When we stopped, Chandler started singing! "Haaa daaaa, haaaa daaaa. claaa, claaa, claaa." We were totally stunned so we sang the song again and he repeated it!!! I practically wet myself.
The list goes on and on. He is calling me "mommy" almost as much as "ma, ma" now. He runs to the kitchen at least once a day and asks for an "apple".
Yesterday were at a birthday party and there was a guy in a big bear costume and he said, "bear". He has been saying "bear" today. He was playing on the slide and would go to the top, look at me with huge eyes and a giant smile that very clearly communicated, "Hey mom! Look at me!", then slide down and do the same at the bottom. "Mom! Did you see what I did!" He did it over and over.
I have read that many parents are completely thrilled at what they see when they start chelation on their autistic children, but still didn't think I would be this excited. I have reminded to try to temper my expectations a bit in case he does not continue to improve this dramatically, or in case he has a set back, but right now it is hard not to get my hopes up that this is a sign that he might fully recover.
Praise God for the blessing that He brought us this week.
September 16, 2004
Chelation - day three
Today Chan made a noticeable leap in verbalization and eye contact. All kinds of eye contact with me today, happy smiley and even flirty.
He was playing a video game that shows objects and then tells what color they are. Scott and I were watching tv and I saw him out of the corner of my eye really, out of his chair, wiggling around and babbling, and just thought he was being silly, but when I started paying attention, I realized that he was looking at both of us and saying, "per per", "per per", I looked at the screen and there was a purple cup.
He got out of his chair to get our attention to tell us it was purple!
A few minutes later both boys were fighting over the computer and pulling on dad and he was so busy trying to get the game back up so they would calm down, that he didn't even see Chandler. He was pulling on Scott's shirt, and crying with this look of desperation on his face of a normal child trying to get his dad to look at him, all the while saying, "da da, da da". Honest to God he was desperate for his dad to make eye contact with him. I have never seen that expression on his face before. I was totally surprised. Usually he would be that upset but looking at the thing he wanted fixed (which is what Scott was looking at). It was the difference between, "Daddy fix that", and "Daddy look at me".
I kept telling Scott to look down, but both boys were so loud he didn't hear me and Scott didn't see it at all.
He was playing a video game that shows objects and then tells what color they are. Scott and I were watching tv and I saw him out of the corner of my eye really, out of his chair, wiggling around and babbling, and just thought he was being silly, but when I started paying attention, I realized that he was looking at both of us and saying, "per per", "per per", I looked at the screen and there was a purple cup.
He got out of his chair to get our attention to tell us it was purple!
A few minutes later both boys were fighting over the computer and pulling on dad and he was so busy trying to get the game back up so they would calm down, that he didn't even see Chandler. He was pulling on Scott's shirt, and crying with this look of desperation on his face of a normal child trying to get his dad to look at him, all the while saying, "da da, da da". Honest to God he was desperate for his dad to make eye contact with him. I have never seen that expression on his face before. I was totally surprised. Usually he would be that upset but looking at the thing he wanted fixed (which is what Scott was looking at). It was the difference between, "Daddy fix that", and "Daddy look at me".
I kept telling Scott to look down, but both boys were so loud he didn't hear me and Scott didn't see it at all.
September 14, 2004
Chelation - for real this time
So we finally got the death flu out of the way and are back on course. I started Chandler on his first round of DMSA yesterday. He will be on the meds for 5 days at a time with breaks in between to give his body a chance to process all the junk out.
Yesterday I didn't see anything new, but this morning he seems a bit different. He was dancing with Ernie and Burt this morning, copying them while they were doing their exercises. I have only seen him do that once before.
He came to get me to give him something more to eat after breakfast, and the usual routine is he comes to me in my chair, pulls on me and whines, say in place and encourage him to say "up", he starts crying and pulling harder, and either he eventually says "up" or I give in. Just now he came over, grabbed my hand looked me in the eye and just said "up". So we walked to the kitchen and as soon as he got to the gate he said, "apple". It was a more smooth transaction than normal. This, by the way, is the third day in a week that he has asked for an apple.
He just seems happy today. Not silly or laughing, just in a good mood.
Yesterday I didn't see anything new, but this morning he seems a bit different. He was dancing with Ernie and Burt this morning, copying them while they were doing their exercises. I have only seen him do that once before.
He came to get me to give him something more to eat after breakfast, and the usual routine is he comes to me in my chair, pulls on me and whines, say in place and encourage him to say "up", he starts crying and pulling harder, and either he eventually says "up" or I give in. Just now he came over, grabbed my hand looked me in the eye and just said "up". So we walked to the kitchen and as soon as he got to the gate he said, "apple". It was a more smooth transaction than normal. This, by the way, is the third day in a week that he has asked for an apple.
He just seems happy today. Not silly or laughing, just in a good mood.
September 11, 2004
Chelation - sort of
I started Chandler on DMSA, but it was a false start as the next day I got sick, handed the care of the boys off to daddy and went to bed for two days. He was not really up on what I was doing and frankly I was on to much Ny-quill to care, so Chan only got about a day and a half on it.
Something cool did happen though. Chandler was in the play room watching a vocabulary video, one of the words of the video being "apple". He came running out of the playroom and pulled me to the kitchen, looked at the apples and said, "apple". He has never asked for a specific food before. If you hold up a banana he will name it for you, but he has never asked for one. He ate the apple down and then dragged me to the kitchen and did it again.
I gotta go buy more apples.
Something cool did happen though. Chandler was in the play room watching a vocabulary video, one of the words of the video being "apple". He came running out of the playroom and pulled me to the kitchen, looked at the apples and said, "apple". He has never asked for a specific food before. If you hold up a banana he will name it for you, but he has never asked for one. He ate the apple down and then dragged me to the kitchen and did it again.
I gotta go buy more apples.
September 7, 2004
Nystatin after two weeks
So it was good, then bad, then good again and now blah.
He responded pretty well for the first 5 days or so, coping with things better, not getting frustrated very easily, more eye contact with mommy. Then things took and a turn and he was back to where we started. I called the doc and he said to make sure he was not getting any sugar at all, so I went to the strictly organic baby food (only veggies) and water to drink. I even took him off his liquid vitamins because there was a bit of sugar in them. And he got better again. I found out that he had been successfully sneaking his brother's juice, so poor Web is now only drinking water in case he leaves it lying around.
He perked back up again for a few days. Then Web got sick. Then Chan got sick. Then Chan got a hold of his brother's breakfast while mom and dad were distracted and he got two pieces of toast. Now everyone is walking around the house whining and crying. Including mommy.
I am hoping that we can get these boys better, then get all the gluten out of Chandler's system, make sure the yeast is down, then start chelation.
You know when you are trying to run a marathon and some jerk runs out of the crowd and knocks you down? That sucks. I feel like that now.
I cry a lot.
He responded pretty well for the first 5 days or so, coping with things better, not getting frustrated very easily, more eye contact with mommy. Then things took and a turn and he was back to where we started. I called the doc and he said to make sure he was not getting any sugar at all, so I went to the strictly organic baby food (only veggies) and water to drink. I even took him off his liquid vitamins because there was a bit of sugar in them. And he got better again. I found out that he had been successfully sneaking his brother's juice, so poor Web is now only drinking water in case he leaves it lying around.
He perked back up again for a few days. Then Web got sick. Then Chan got sick. Then Chan got a hold of his brother's breakfast while mom and dad were distracted and he got two pieces of toast. Now everyone is walking around the house whining and crying. Including mommy.
I am hoping that we can get these boys better, then get all the gluten out of Chandler's system, make sure the yeast is down, then start chelation.
You know when you are trying to run a marathon and some jerk runs out of the crowd and knocks you down? That sucks. I feel like that now.
I cry a lot.
August 26, 2004
Nystatin - Day 5
So some really cool stuff happened yesterday. Jennifer, Chandler's floortime therapist, was really happy after their session in the morning as he was doing some appropriate play. He was taking people figures and putting them in the swings and on the benches, and taking turns with her better than he had before on the interactive games they were playing. She reported that he didn't get frustrated or protest like usual when something didn't go his way. I am definitely seeing that too.
This morning when she got here, she said, "Chandler, let's go to the playroom", and he did! He ran straight in, even passing the TV, which was on, with out a glance.
He did that for me last night too. We were playing in the play room and I said, "ok Chandler, time for bed, let's go to the bedroom, and he ran straight in! First time in his life.
So, so proud of my boy.
Julia, his OT, says that his eye contact with her as not been as good in the last few weeks, including yesterday. I choose to believe that there are just to many cool things in the OT room that distract him. But then again, I also like to think that his autism is just a "phase" and he will snap out of it any day now. I love the smell of denial in the morning.
This morning when she got here, she said, "Chandler, let's go to the playroom", and he did! He ran straight in, even passing the TV, which was on, with out a glance.
He did that for me last night too. We were playing in the play room and I said, "ok Chandler, time for bed, let's go to the bedroom, and he ran straight in! First time in his life.
So, so proud of my boy.
Julia, his OT, says that his eye contact with her as not been as good in the last few weeks, including yesterday. I choose to believe that there are just to many cool things in the OT room that distract him. But then again, I also like to think that his autism is just a "phase" and he will snap out of it any day now. I love the smell of denial in the morning.
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