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.
Friday, July 31, 2009
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.
Thursday, July 23, 2009
Little Bug's Superhuman Feats of Oral and Gastro Intestinal Wonderment!
Yesterday was like any other day. Any other day in which your child can't distinguish food items from non food items at 2 years and 362 days of age. In the past month alone, he has eaten, attempted to eat, or mouthed the following items:
Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*
(the items with astericks next to them were successfully consumed.)
Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!
I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)
She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"
I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"
We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.
Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*
(the items with astericks next to them were successfully consumed.)
Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!
I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)
She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"
I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"
We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.
Wednesday, July 22, 2009
Book Review
I have gotten back into the swing of ASD research and wanted to share some of my experiences.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
Tuesday, July 21, 2009
No more training wheels
This is Little Bug's last week at Birth to Three. Nick and I are a bit panicked. For us, this means that we no longer have a team of 5 highly educated, informed, and dedicated people supporting us through this.
This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.
Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.
They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.
I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.
This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.
Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.
They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.
I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.
Tuesday, July 14, 2009
Seriously hair raising
So last night, Nick and I apparently lost our minds because we decided to do our twice a year hair cut for Little Bug. I remember now why it is only twice a year.
Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.
Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.
Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.
Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.
I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.
Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.
Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.
Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.
Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.
I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.
Thursday, July 9, 2009
It is a gift
I marvel at Little Bug every day, but have been more so recently as the anniversary of his diagnosis has come. I know I have neglected this blog, but I needed some space to appreciate from a distance this gift. Granted a year ago, this was not a gift in any sense of the words. This was a cruel joke that knocked me on my ass and took my breath away. It paralyzed us with fear and tortured us mentally.
I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.
He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.
When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.
Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.
This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.
And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.
To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.
My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.
I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.
I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.
He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.
When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.
Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.
This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.
And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.
To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.
My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.
I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.
Wednesday, July 8, 2009
IEP meeting results
Sorry for the delay... things have been a bit hectic in a mundane way.
We had the IEP meeting, and for the most part, it went well. Little Bug will be going to a special education preschool for 2.5 hours a day 4 days a week.
The meeting starting off a bit rocky as the school district had the IEP completed and stated that they would review it so we could sign it. Given that Nick and I had created three IEP goals for Little Bug's social, adaptive, and speech concerns, this didn't go well.
Luckily, the school backed down quickly and included our ideas. Surprisingly, the only idea they seemed hestitant to include was a goal about him sitting in a chair for at least 5 minutes. Of all the goals to argue about, that was the one I never would have expected.
They thought that if he watched other children do it, he would. We explained, and his current therapists confirmed, that it doesn't work that way. It is simply difficult for him to sit in a chair.
For additional services, he will receive 30 minuts a week of speech and OT.
As we are winding down his stay at Birth to Three, we are trying to flesh out our home program for the summer. We are getting on some waiting lists for OT, will be continuing speech therapy with his current therapist, and have asked his Autism therapist for a list of 10 things to work on for the summer.
All in all pretty successful.
Fourth of July on the other hand, was not successful. Little Bug's auditory defensiveness is increasing. He spent the whole day hiding in the bushes- first because of the airshow practice, then the airshow itself, then the fire trucks, and finally the local fireworks.
He has begun to scream and cover his ears in public whenever there is music, clapping, chopping- at restaraunts, and any other loud noise. We are unsure how to deal with this without going down the noise cancelling head phone road.
In other news, he will be three in 17 days.
We had the IEP meeting, and for the most part, it went well. Little Bug will be going to a special education preschool for 2.5 hours a day 4 days a week.
The meeting starting off a bit rocky as the school district had the IEP completed and stated that they would review it so we could sign it. Given that Nick and I had created three IEP goals for Little Bug's social, adaptive, and speech concerns, this didn't go well.
Luckily, the school backed down quickly and included our ideas. Surprisingly, the only idea they seemed hestitant to include was a goal about him sitting in a chair for at least 5 minutes. Of all the goals to argue about, that was the one I never would have expected.
They thought that if he watched other children do it, he would. We explained, and his current therapists confirmed, that it doesn't work that way. It is simply difficult for him to sit in a chair.
For additional services, he will receive 30 minuts a week of speech and OT.
As we are winding down his stay at Birth to Three, we are trying to flesh out our home program for the summer. We are getting on some waiting lists for OT, will be continuing speech therapy with his current therapist, and have asked his Autism therapist for a list of 10 things to work on for the summer.
All in all pretty successful.
Fourth of July on the other hand, was not successful. Little Bug's auditory defensiveness is increasing. He spent the whole day hiding in the bushes- first because of the airshow practice, then the airshow itself, then the fire trucks, and finally the local fireworks.
He has begun to scream and cover his ears in public whenever there is music, clapping, chopping- at restaraunts, and any other loud noise. We are unsure how to deal with this without going down the noise cancelling head phone road.
In other news, he will be three in 17 days.
Subscribe to:
Posts (Atom)