We received contact from a local hospital and their therapy clinic. They are highly focused on OT and more specifically, Sensory Modulation Disorder. This Disorder isn't in the DSM so it is an undiagnosed but suspected disorder.
Unfortunately, this means another wait period of 3 to 6 months. The nice thing about this situation is that we have ample time to create better goals for Little Bug. Our last goals were focused on bathing, dressing, not biting himself or others.
This time, our goals are going to be more focused around the following:
1. Sensing HOT versus COLD.
2. Sensing and identifying pain.
3. Sensing and identifying bodily sensations- hunger, thirst, heat, etc.
You may think these goals seem basic- they are. They are also incredibly difficult for Little Bug. He will touch items that are burning hot and have no reaction. He played in ice on his birthday until his little fingers were bright red and felt frozen to everyone else. Didn't bother him. He can have a fever of 102 and up and yet act no different.
How anyone would go about meeting those goals is beyond me. What I do know is that we need to do it. Our hope is that the more he learns to modulate his system, he will be able to do the things above.
Wednesday, August 5, 2009
Friday, July 31, 2009
Yeah, I'm a lurker
I love to read the ASD blogs, but rarely comment on them. While most people are more outgoing online, I clam up (except here in my own little world).
I do have to acknowledge what I think is an amazing post:
http://www.blogher.com/worst-parenting-day-ever
I read the parent blog http://www.squidalicious.com/ often. I like this blog because it usually gives my perspective a good kick in the butt.
I do have to acknowledge what I think is an amazing post:
http://www.blogher.com/worst-parenting-day-ever
I read the parent blog http://www.squidalicious.com/ often. I like this blog because it usually gives my perspective a good kick in the butt.
103
That was this weeks high point. This has been a really rough week for everyone involved, but especially Little Bug.
See, we will in WASHINGTON. We are not equipped for this as most homes and some businesses don't have air conditioning. Ours would be one of those homes.
Little Bug didn't notice the heat. We are pretty sure based that he can't really modulate temperature. For example, on his birthday, he sat and played in a bucket of ice. While that seems normal, he played with it until his fingers barely moved. It didn't bother him. In fact, he was more upset about not being allowed to play in the ice than anything else.
What Little Bug has noticed this week is a complete change in his routine. Nick is on vacation. He isn't allowed to play outside in the afternoons- way too hot. He is being nagged, reminded, prompted, and prodded into drinking water. None of the food he normally eats is being served- too hot to cook. He isn't allowed to wear anything he wants.
For the most part, he did well until yesterday. He hit his breaking point. He is tired. He is covered in heat rash. He wants to play outside. He doesn't like the food. He is sick and tired of being yelled at for trying to climb out our windows. (Side Note- I mean that literally. We don't normally open the windows as he will push the screen out and try to get out. With it being over 100, we had to suck it up and do it. He has made several escape attempts.)
Fortunately for him, we are going to Hama and Bumpa's. There won't be yelling because with the marine fog, the low will be in the 50s and the high will be in the 70s. He will get to see two of his *favorite* people in the whole wide world and his second favorite dog.
See, we will in WASHINGTON. We are not equipped for this as most homes and some businesses don't have air conditioning. Ours would be one of those homes.
Little Bug didn't notice the heat. We are pretty sure based that he can't really modulate temperature. For example, on his birthday, he sat and played in a bucket of ice. While that seems normal, he played with it until his fingers barely moved. It didn't bother him. In fact, he was more upset about not being allowed to play in the ice than anything else.
What Little Bug has noticed this week is a complete change in his routine. Nick is on vacation. He isn't allowed to play outside in the afternoons- way too hot. He is being nagged, reminded, prompted, and prodded into drinking water. None of the food he normally eats is being served- too hot to cook. He isn't allowed to wear anything he wants.
For the most part, he did well until yesterday. He hit his breaking point. He is tired. He is covered in heat rash. He wants to play outside. He doesn't like the food. He is sick and tired of being yelled at for trying to climb out our windows. (Side Note- I mean that literally. We don't normally open the windows as he will push the screen out and try to get out. With it being over 100, we had to suck it up and do it. He has made several escape attempts.)
Fortunately for him, we are going to Hama and Bumpa's. There won't be yelling because with the marine fog, the low will be in the 50s and the high will be in the 70s. He will get to see two of his *favorite* people in the whole wide world and his second favorite dog.
Wednesday, July 29, 2009
Parents and Self Advocates
Recently in the NY Times, two perspectives were provided of a life with Autism. One was that of a parent and the other of a self advocate. These perspectives were provided in response to the following study-
http://www.sciencedaily.com/releases/2009/07/090708153233.htm
An excerpt:
“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.
"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”
The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/
The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.
The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/
The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.
I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.
I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.
When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.
I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.
I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.
I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.
I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.
http://www.sciencedaily.com/releases/2009/07/090708153233.htm
An excerpt:
“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.
"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”
The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/
The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.
The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/
The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.
I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.
I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.
When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.
I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.
I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.
I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.
I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.
Tuesday, July 28, 2009
Birthday!!!!
A sharky day. A day filled with new experiences. A day to celebrate the wonderful little boy we have.
Monday, July 27, 2009
Another article regarding Gastrointestinal diseases and ASD
http://news.yahoo.com/s/hsn/20090727/hl_hsn/withautismdietrestrictionsmaydomoreharmthangood
MONDAY, July 27 (HealthDay News) -- Children with autism do not have a higher incidence of gastrointestinal problems than other children, a new study has found.
However, autistic children do have a higher rate of constipation and eating issues, such as eating the same foods over and over, according to the study. But any number of factors, including medication, could cause these issues, the researchers said.
The findings appear in the August issue of Pediatrics.
Dr. Patricia Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center, said that the study is an important one because it was the first to scientifically compare the incidence of gastrointestinal (GI) problems in an autistic population with incidence in children who are developing normally.
Even so, it's unlikely to quell a controversy that has been raging for more than a decade.
"A couple of highly publicized cases of autism and loose stools in the late 1990s led to an impression that children with autism had a higher rate of GI dysfunction," she said. "It wasn't well characterized, but that got the story onto the national scene."
This, in turn, led to theories that diets free of gluten and the milk protein casein might help the problems, along with treatment with the hormone secretin. Some even proposed that problems with the gut might be the cause of autistic symptoms, giving the matter added urgency.
But the evidence in favor of these hypotheses was "fuzzy," Manning-Courtney said.
For the new study, researchers followed 124 children with autism and 248 children without autism until they turned 18.
Gastrointestinal diagnoses were classified into five groups: constipation; diarrhea; abdominal bloating, discomfort or irritability; gastroesophageal reflux or vomiting; and feeding issues or selectivity (people with autism often stick with the same food choices and have other "ritualistic tendencies" in eating).
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation. Feeding issues were present in about 24 percent of the autistic children and 16 percent of those who weren't autistic, the study authors found.
Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.
"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."
Medications that autistic children take can also interfere with appetite and eating.
"In our study, around 50 percent of children were on stimulant medications, and those might affect appetite and might have something to do with issues with food," Ibrahim said.
Keith A. Young, vice chairman for research in the psychiatry and behavioral science department at Texas A&M Health Science Center College of Medicine, said he thought "the really interesting thing they found was that there wasn't any indication of celiac disease."
In the group studied, the researchers found just one case. A possible link between celiac disease and autism was proposed as far back as 1961.
"The only difference [between the two groups] was the constipation, which they kind of dismiss," Young said. "And I tend to agree with their conclusion that constipation might be related to the dietary habits of autistic kids."
The constipation and feeding difficulties identified in the study, though, are not the symptoms that people have been buzzing about, Manning-Courtney pointed out. It's mostly been about diarrhea and loose stools.
But the study was a small one and did not rely on rigorous, comprehensive diagnoses of autism for the participants, so it may just stir the pot for people on both sides of the debate.
The researchers, however, are urging parents away from restrictive diets.
"Patients with autism should be investigated the same way as normal patients when they have GI symptoms," Ibrahim said. "And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."
Manning-Courtney concurred. "For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."
MONDAY, July 27 (HealthDay News) -- Children with autism do not have a higher incidence of gastrointestinal problems than other children, a new study has found.
However, autistic children do have a higher rate of constipation and eating issues, such as eating the same foods over and over, according to the study. But any number of factors, including medication, could cause these issues, the researchers said.
The findings appear in the August issue of Pediatrics.
Dr. Patricia Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center, said that the study is an important one because it was the first to scientifically compare the incidence of gastrointestinal (GI) problems in an autistic population with incidence in children who are developing normally.
Even so, it's unlikely to quell a controversy that has been raging for more than a decade.
"A couple of highly publicized cases of autism and loose stools in the late 1990s led to an impression that children with autism had a higher rate of GI dysfunction," she said. "It wasn't well characterized, but that got the story onto the national scene."
This, in turn, led to theories that diets free of gluten and the milk protein casein might help the problems, along with treatment with the hormone secretin. Some even proposed that problems with the gut might be the cause of autistic symptoms, giving the matter added urgency.
But the evidence in favor of these hypotheses was "fuzzy," Manning-Courtney said.
For the new study, researchers followed 124 children with autism and 248 children without autism until they turned 18.
Gastrointestinal diagnoses were classified into five groups: constipation; diarrhea; abdominal bloating, discomfort or irritability; gastroesophageal reflux or vomiting; and feeding issues or selectivity (people with autism often stick with the same food choices and have other "ritualistic tendencies" in eating).
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation. Feeding issues were present in about 24 percent of the autistic children and 16 percent of those who weren't autistic, the study authors found.
Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.
"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."
Medications that autistic children take can also interfere with appetite and eating.
"In our study, around 50 percent of children were on stimulant medications, and those might affect appetite and might have something to do with issues with food," Ibrahim said.
Keith A. Young, vice chairman for research in the psychiatry and behavioral science department at Texas A&M Health Science Center College of Medicine, said he thought "the really interesting thing they found was that there wasn't any indication of celiac disease."
In the group studied, the researchers found just one case. A possible link between celiac disease and autism was proposed as far back as 1961.
"The only difference [between the two groups] was the constipation, which they kind of dismiss," Young said. "And I tend to agree with their conclusion that constipation might be related to the dietary habits of autistic kids."
The constipation and feeding difficulties identified in the study, though, are not the symptoms that people have been buzzing about, Manning-Courtney pointed out. It's mostly been about diarrhea and loose stools.
But the study was a small one and did not rely on rigorous, comprehensive diagnoses of autism for the participants, so it may just stir the pot for people on both sides of the debate.
The researchers, however, are urging parents away from restrictive diets.
"Patients with autism should be investigated the same way as normal patients when they have GI symptoms," Ibrahim said. "And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."
Manning-Courtney concurred. "For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."
Gastrointestinal diseases and ASD
A new study regarding the above is out and demonstrates the following:
Autism not tied to bowel movement patterns
Thu Jul 23, 2009 3:12am IST Email | Print | Share| Single Page[-] Text [+] By David Douglas
NEW YORK (Reuters Health) - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.
Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood.
However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health.
Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders.
During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain.
There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.
Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."
SOURCE: Archives of Disease in Childhood, July 2009.
© Thomson Reuters 2009 All rights reserved
When reviewing this on msnbc.com, the video showed their head medical specialist stating that this means special diets do no good. While I don't necessarily agree with all of the Bio Medical interventions- chelation for example, others, like fish oil and the GFCF diet seem rather harmless.
My question is to whether from the study above, you can invalidate the experience many parents go through? While I don't think it is a cure all and firmly believe that intensive early intervention helps the most, does it hurt to try this diet or oil?
By the way, Little Bug's birthday was this Saturday and as soon as I have the pictures, you'll get a post.
Autism not tied to bowel movement patterns
Thu Jul 23, 2009 3:12am IST Email | Print | Share| Single Page[-] Text [+] By David Douglas
NEW YORK (Reuters Health) - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.
Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood.
However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health.
Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders.
During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain.
There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.
Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."
SOURCE: Archives of Disease in Childhood, July 2009.
© Thomson Reuters 2009 All rights reserved
When reviewing this on msnbc.com, the video showed their head medical specialist stating that this means special diets do no good. While I don't necessarily agree with all of the Bio Medical interventions- chelation for example, others, like fish oil and the GFCF diet seem rather harmless.
My question is to whether from the study above, you can invalidate the experience many parents go through? While I don't think it is a cure all and firmly believe that intensive early intervention helps the most, does it hurt to try this diet or oil?
By the way, Little Bug's birthday was this Saturday and as soon as I have the pictures, you'll get a post.
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