Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
2017/03/14
The Curious Incident of the Dog in the Night-Time: A Review
Our protagonist, Christopher John Francis Boone, is our eyes and ears in this heart-rending tale of mystery, deceit and disability. Written in journal form, this novel tells the reader about Christopher as he attempts to solve a mysterious death of a dog and, through those investigations, discovers more about himself and the people in his life than he ever imagined.
This book begins with Christopher’s discovery of his neighbor’s poodle, who has been murdered; he discovers the dog bleeding on the ground with a pitchfork through its body. The reader then learns that Christopher lives alone with his father, that his mother is dead, that one of his neighbors has gone missing as well, and that he attends a special school where he does very well at math and is hoping to take A levels at some point. Determined to discover who killed his neighbor’s dog, he starts a journal to write down the clues he finds and to keep better track of the things he is thinking. While he is casually questioning the neighbors, one neighbor admits that Christopher’s mother had an affair with someone else from the neighborhood and, as Christopher continues to investigate, he learns that his father has lied to him- his father not only killed the dog, but he learns that his mother is actually still alive and is living in London with the missing neighbor. These discoveries are so hard on him that he runs away after a confrontation with his father and manages, with much luck and difficulty, to make it to his mother’s apartment. The story ends with Christopher’s father trying to regain lost trust and his mother single again with all parties trying to figure out how to live with and understand each other.
This novel is steeped in the challenges inherent in the lives of individuals with high functioning autism and/or Asperger’s syndrome: A pervasive developmental disorder in which the affected individual displays unusual nonverbal communication, difficulties with empathy and understanding the emotions of others, and other mental and physical symptoms. This particular book has many potential uses for a general education teacher. A teacher can use the texts to discuss different ways of thinking in general and autism in particular. Discussion of emotions, how they are expressed, and how we as individuals ‘read’ people’s emotions is also possible. As the protagonist writes the ‘story’ in journal form, creative writing about the students’ own lives could be encouraged as well. (One assignment could be for the student to write about how they would end the story after only reading the first two chapters. Another option could be writing about what metaphors are and why they can be confusing to someone with a logical mind.) Discussions of math and maps would also be relevant and assignments meant to enhance a student’s knowledge of these subjects would be worthwhile.
Giving this novel an overall rating is a bit challenging, but I finally settled on four stars. This book does several things very well: the protagonist is rather sweet and engaging and the reader finds themselves anxious to follow him through his life. We genuinely worry about him even though Christopher probably wouldn’t be able to acknowledge our concerns. The novel’s prose manages to let the characters express their emotions clearly even though the anger, fear, sadness, and frustration are never explicitly articulated. Through the actions and journal entries shared by Christopher, the reader is able to casually absorb information about Asperger’s syndrome and some of the challenges it can cause for individuals who live with this particular disability. The novel is well- written and the plot feels fairly flawless and begs us to understand and be patient with our protagonist as he navigates his challenges. However, while the written and sometimes strong language brings about positive reflection and understanding of the story, it also can turn off a reader and make it more challenging for some individuals to be willing to complete the book. The adult themes are appropriate- Christopher is 15 years old, after all- but these themes can also offend the reader or invite censorship. While this book is meant for young adults, its themes and plotline can be quite challenging for any reader including adults. This book has won awards for its storytelling including the Guardian Children’s Fiction Prize, Costa Book of the Year, the Boeke Prize, and the Waverton Good Read Award. I highly recommend this well-written novel by Mark Haddon for mature young adults and older students for an entertaining and educational read.
pictures from: http://www.benjaminmadeira.com/2014/09/analysis-haddon-mark.html, https://www.independent.co.uk/arts-entertainment/theatre-dance/features/heads-up-the-curious-incident-of-the-dog-in-the-night-time-7856401.html, https://www.penguin.co.uk/articles/find-your-next-read/reading-guides/2016/nov/23/the-curious-incident-of-the-dog-in-the-night-time-mark-haddon/
2016/09/12
What is Early Childhood Intervention and Why Is It Needed?
Early intervention (EI) is the process of developing a focused curriculum and treatment plan that is based on a thorough assessment and evaluation that fully encompassed an individual’s physical, mental, social and environmental challenged interspersed with and related to their diagnosis of a mental health disorder. By recognizing the weaknesses or challenges that a child is having with their development and actively trying to treat and change the way the body responds and reacts to the problem, early intervention has been shown to give those individuals affected with ASD the tools and abilities to responds more positively and culturally appropriately in their physical environments and in relationships with others. One reason that has been suggested for early intervention is that by helping and motivating a child to use areas of the brain that are not functioning well, new neurons and connections in the brain can be strengthened and formed. Other thoughts are that, by forcing the brain to have certain experiences, the ‘flexible’ young brain will begin to grow new connections and form new pathways towards more normal processing of information in the affected areas of the brain.
The process of early intervention should be used for all individuals that have been assessed and found to either be at risk of an autism diagnosis or are diagnosed. Another way of looking at it is that EI should be used for any individual found to have a delay in any aspect of the development process that could potentially be corrected with the use of therapy. Research suggests that the sooner… or ‘earlier’… in the child’s life that the intervention is made, the more permanent and positive change can be created in the child. How the intervention is utilized can depend on many factors including, parental or provider choice, what interventions are available, funding or lack thereof for treatment, the individual’s needs, etc… there are more than a dozen programs used for early intervention which include Floortime, Denver, SCERTS, and RDI. While these programs all have differences in how they attempt to facilitate change in the individual, the typical EI priorities usually work on forming spontaneous functional communication techniques, developing coping skills, and learning to interact and play with peers. Programs also tend to try and work on removing the motivations for negative behavior through different avenues and attempting to prevent the behavior from continuing to occur. Other samples of early intervention services that can be offered are speech or occupational therapy, assistive technology or auditory services, as well as counseling, medical or psychological services.
For a newly diagnosed child, one of the first steps is to create and develop an IFSP (Individualized Family Service Plan.) As part of that process, location(s) to begin therapy and what forms of beginning treatment should commence. Several kinds of information are incorporated in the IFSP including a rounded out examination of the child’s current development and needs, family abilities, resources, and desires, how and how much services should be provided and for how long as well as who is responsible for certain aspects of the treatment and also the goals or outcomes that are going to be focused on developing and achieving. For a newly diagnosed two year old child, an IFSP is developed and treatment usually consists of some forms of relationship development, speech or other physical therapies as well as work with interaction and self-soothing. For more newly diagnosed toddlers or babies, intervention treatment is usually performed in the home where the child knows their environment and will feel the most comfortable and open to the treatment.
It has been shown that early childhood intervention with individuals that struggle with developmental delays can create more positive social and future life outcomes. if you or a family member has used early intervention what have your experiences been?
2016/01/08
Analysis of Two Articles on Autism and Screening Tools
For an assignment, I chose two articles to study, analyze, and review on autism to understand some of the differences in focus and rhetoric used by writers to educate and hold their desired target audience. The first article was originally published in Valley Health Magazine in April 2014 and was written by Amanda Nicolson Adams. The primary focus of this article is to discuss autism and its prevalence along with the causes, screening tools, and treatments that are available for those who are diagnosed. The author has broken the article into sections so that she can concisely and specifically cover these topics without a lot of overlap or potential confusion. I chose this article for its well laid out design which is quite user friendly as well as its even tone and concisely listed information.
Dr. Adams begins the article with a quick overview on the increase of autism diagnoses in the United States and what the diagnosis actually describes in terms of its behaviors, physical and language difficulties, and the classification of ASD as a neurological disorder. The article states that hard numbers concerning the prevalence of individuals affected by autism can only be estimated due to the differences in sources and environments that affect diagnosis and treatment. “However, even conservative estimates place autism as more prevalent in pediatrics than cancer, diabetes, spina bifida, and Down syndrome combined.” Though research has confirmed that there are some biological and genetic markers, none of them are fully reliable for accurate diagnosis. A short discussion on the potential causes of autism that researchers have been able to identify make it clear that this disorder is widely misconstrued, and even with the enormous amounts of research that have been performed to discover and tabulate the precise causes, there is no clear consensus and no clear preventative measures that can be taken by parents and caregivers.
When discussing screening tools, Adams focuses on giving parents the information to begin the process of screening their children as soon as they recognize potential signs that their children may not be developing among the normal guidelines. The two tools that she recommends are the M-CHAT (Modified Checklist for Autism in Toddlers) and CARS (Childhood Autism Rating Scale). Both tools can be scored fairly quickly and the two potential negatives that she sees for these tests are that the tests can potentially create high false positives towards diagnosis and that some parents see the possibility that their child could potentially be wrongly diagnosed as a reason for not utilizing the screening tools. Her recommendation to “Screen anyway, treat anyway” is followed by the idea that early intervention treatment has no downside for the child and would help any child whether neuro-typical or autistic.
The article then closes with a discussion of treatments that are recommended for use in early intervention including ABA (Applied Behavioral Analysis), Floortime/ Relationship Development Model (RDI), Complementary and Alternative Medicine (CAM), and sensory based treatments. Her consensus is that ABA is the most effective treatment model with decades of research supporting it and that it works for children with autism “exceptionally well because of its precise teaching methodology and focus” on the strengths and weaknesses of each individual participant.
The second article for this assignment is titled, “The Modified Checklist for Autism in Toddlers: An Initial Study Investigating the Early Detection of Autism and Pervasive Developmental Disorder.” It was originally published in 2001 when the M-CHAT was being developed and studied for effectiveness and flaws. While the article is not the most current on this particular screening tool, I found myself continuously drawn back to it due to its uniqueness. In my experience, it is uncommon to find an article that discusses new research and ideas and how they are presented with the openings and recognition that newer, more comprehensive research may modify and transmute the original research into a new object altogether. Being able to look at a tool that is widely used now while in its infancy seemed like a wonderful opportunity that I have always have the ability to do, but have never felt motivated enough to attempt and complete. How could I ignore this perfect circumstance?
The article quickly summarized what autism disorder is and how important early intervention is for children in order to achieve more positive outcomes as they grow up, ending with “…there is no standard and easily administered screening instrument for young children.” Discussion on the gap between a parent’s first concerns about their child’s development and a visit to a specialist followed by a diagnosis suggests that having a quick, accurate, and easy way to identify children that need intervention as early as possible is an important and needed tool for both parents and professionals in the hopes of being able to intervene with at risk children as quickly as possible in their lives.
The paper continues on discussing the correlation with deficits and problem behavior that early intervention can minimize or change whereas behaviors can be harder or impossible to change when the individual is older and the brain has less flexibility. Recognizing that many of these at risk individuals also have unusual sensory responses to their environment and that many ‘signs’ of autism that are used to diagnose a child at 20+ months could be tracked and looked for at 18 months, the authors agree that a tool that would specifically help pediatricians more easily determine and refer at risk toddlers for early intervention would be optimal. The paper discusses the known useful characteristics of a screening device and then mentions the current tools available for use which include the Autism Behavior Checklist, the E-2 Form of the Diagnostic Checklist, the Behavior Rating Instrument for Autistic and Atypical Children, and the Autism Diagnostic Observation Schedule- Generic. Continuing by discussing the problems with the current screening tools used, the authors guide the discussion to the newest tool under development called the M-CHAT (Modified Checklist for Autism in Toddlers). It is an extension for one of the older tests which has been modified to not rely only on the observations of the pediatrician or heath care professional, but also on the observations and thoughts of the parent/caregiver. The rest of the article places its focus on how the M-CHAT works and evidence for its usefulness.
Both of these articles covered some of the same information to make sure that their audience understood the terms and concerns of the author. Both articles discussed Autism Spectrum Disorder, the behavior and deficits that are typically manifest in it (regardless of individual differences), and the importance of early intervention. The authors of these articles wanted to stress the use of screening tools to get children who are at risk into early intervention programs quickly- preferably as infants and toddlers so that there is less ‘wasted’ intervention time and more opportunity for positive change for the individual. As the article from Valley Health appears to be targeted to the average individual or parent, the author keeps the information pretty simple. The journal paper is targeted to a different audience, but also keeps the focus of its information on its chosen topic of the M-CHAT as a screening tool. The audiences that are targeted by the writings are very different and so will tend to be more variable for the targeted group. Lastly, both pieces of writing mention that while there are many kinds of treatment for autism available, the safest and most effective treatments are those that have been scientifically studied and tested.
In some ways, there were significant differences in the articles. In the Valley Health article, Adams made the case for treatments and tests that she preferred over others (the M-CHAT was a preferred screening tool.) The Journal article mentions many screening tools, but spends its focus on the M-CHAT as the article is written to share the initial research and information collected on its use. Adams uses her article to introduce autism and many basic questions people have – her focus is to really answer many basic questions that people have while the M-CHAT article is more focused on the screening tool itself and its differences from other tools available for use.
A few things that I learned from reading these articles was how differently articles are written based on their target audience. Even when the information is the same and agreed upon by both sources, the presentation and information about the topics can be very different. The Valley Health article was more generalized, which makes sense if you think that its target audience is the general public while the journal article was much more focused and had a more precise scope on the information it shared. It was useful to discover how many different screening tools there are to try and assess children and their strengths and weaknesses. I appreciated the recognition of both articles of how much parents themselves need to be involved in the process of diagnosis and treatment. A useful assignment indeed.
Dr. Adams begins the article with a quick overview on the increase of autism diagnoses in the United States and what the diagnosis actually describes in terms of its behaviors, physical and language difficulties, and the classification of ASD as a neurological disorder. The article states that hard numbers concerning the prevalence of individuals affected by autism can only be estimated due to the differences in sources and environments that affect diagnosis and treatment. “However, even conservative estimates place autism as more prevalent in pediatrics than cancer, diabetes, spina bifida, and Down syndrome combined.” Though research has confirmed that there are some biological and genetic markers, none of them are fully reliable for accurate diagnosis. A short discussion on the potential causes of autism that researchers have been able to identify make it clear that this disorder is widely misconstrued, and even with the enormous amounts of research that have been performed to discover and tabulate the precise causes, there is no clear consensus and no clear preventative measures that can be taken by parents and caregivers.
When discussing screening tools, Adams focuses on giving parents the information to begin the process of screening their children as soon as they recognize potential signs that their children may not be developing among the normal guidelines. The two tools that she recommends are the M-CHAT (Modified Checklist for Autism in Toddlers) and CARS (Childhood Autism Rating Scale). Both tools can be scored fairly quickly and the two potential negatives that she sees for these tests are that the tests can potentially create high false positives towards diagnosis and that some parents see the possibility that their child could potentially be wrongly diagnosed as a reason for not utilizing the screening tools. Her recommendation to “Screen anyway, treat anyway” is followed by the idea that early intervention treatment has no downside for the child and would help any child whether neuro-typical or autistic.
The article then closes with a discussion of treatments that are recommended for use in early intervention including ABA (Applied Behavioral Analysis), Floortime/ Relationship Development Model (RDI), Complementary and Alternative Medicine (CAM), and sensory based treatments. Her consensus is that ABA is the most effective treatment model with decades of research supporting it and that it works for children with autism “exceptionally well because of its precise teaching methodology and focus” on the strengths and weaknesses of each individual participant.
The second article for this assignment is titled, “The Modified Checklist for Autism in Toddlers: An Initial Study Investigating the Early Detection of Autism and Pervasive Developmental Disorder.” It was originally published in 2001 when the M-CHAT was being developed and studied for effectiveness and flaws. While the article is not the most current on this particular screening tool, I found myself continuously drawn back to it due to its uniqueness. In my experience, it is uncommon to find an article that discusses new research and ideas and how they are presented with the openings and recognition that newer, more comprehensive research may modify and transmute the original research into a new object altogether. Being able to look at a tool that is widely used now while in its infancy seemed like a wonderful opportunity that I have always have the ability to do, but have never felt motivated enough to attempt and complete. How could I ignore this perfect circumstance?
The article quickly summarized what autism disorder is and how important early intervention is for children in order to achieve more positive outcomes as they grow up, ending with “…there is no standard and easily administered screening instrument for young children.” Discussion on the gap between a parent’s first concerns about their child’s development and a visit to a specialist followed by a diagnosis suggests that having a quick, accurate, and easy way to identify children that need intervention as early as possible is an important and needed tool for both parents and professionals in the hopes of being able to intervene with at risk children as quickly as possible in their lives.
The paper continues on discussing the correlation with deficits and problem behavior that early intervention can minimize or change whereas behaviors can be harder or impossible to change when the individual is older and the brain has less flexibility. Recognizing that many of these at risk individuals also have unusual sensory responses to their environment and that many ‘signs’ of autism that are used to diagnose a child at 20+ months could be tracked and looked for at 18 months, the authors agree that a tool that would specifically help pediatricians more easily determine and refer at risk toddlers for early intervention would be optimal. The paper discusses the known useful characteristics of a screening device and then mentions the current tools available for use which include the Autism Behavior Checklist, the E-2 Form of the Diagnostic Checklist, the Behavior Rating Instrument for Autistic and Atypical Children, and the Autism Diagnostic Observation Schedule- Generic. Continuing by discussing the problems with the current screening tools used, the authors guide the discussion to the newest tool under development called the M-CHAT (Modified Checklist for Autism in Toddlers). It is an extension for one of the older tests which has been modified to not rely only on the observations of the pediatrician or heath care professional, but also on the observations and thoughts of the parent/caregiver. The rest of the article places its focus on how the M-CHAT works and evidence for its usefulness.
Both of these articles covered some of the same information to make sure that their audience understood the terms and concerns of the author. Both articles discussed Autism Spectrum Disorder, the behavior and deficits that are typically manifest in it (regardless of individual differences), and the importance of early intervention. The authors of these articles wanted to stress the use of screening tools to get children who are at risk into early intervention programs quickly- preferably as infants and toddlers so that there is less ‘wasted’ intervention time and more opportunity for positive change for the individual. As the article from Valley Health appears to be targeted to the average individual or parent, the author keeps the information pretty simple. The journal paper is targeted to a different audience, but also keeps the focus of its information on its chosen topic of the M-CHAT as a screening tool. The audiences that are targeted by the writings are very different and so will tend to be more variable for the targeted group. Lastly, both pieces of writing mention that while there are many kinds of treatment for autism available, the safest and most effective treatments are those that have been scientifically studied and tested.
In some ways, there were significant differences in the articles. In the Valley Health article, Adams made the case for treatments and tests that she preferred over others (the M-CHAT was a preferred screening tool.) The Journal article mentions many screening tools, but spends its focus on the M-CHAT as the article is written to share the initial research and information collected on its use. Adams uses her article to introduce autism and many basic questions people have – her focus is to really answer many basic questions that people have while the M-CHAT article is more focused on the screening tool itself and its differences from other tools available for use.
A few things that I learned from reading these articles was how differently articles are written based on their target audience. Even when the information is the same and agreed upon by both sources, the presentation and information about the topics can be very different. The Valley Health article was more generalized, which makes sense if you think that its target audience is the general public while the journal article was much more focused and had a more precise scope on the information it shared. It was useful to discover how many different screening tools there are to try and assess children and their strengths and weaknesses. I appreciated the recognition of both articles of how much parents themselves need to be involved in the process of diagnosis and treatment. A useful assignment indeed.
2014/07/10
Journey Forth #6 : The Accidental Relationship between Gluten and Casein
When I was first diagnosed with celiac disease and started to research the disorder but also the foods that were available, I ran across many people who started pushing me towards a gluten free-casein free diet not only for myself but for Bug as well- we both have the disease and I think he can thank my genes for that ;) I was skeptical and I am still a bit questioning about some theories behind the diet. This particular diet is recommended for many people with celiac disease and other food allergies and it has become one of the diets of choice for individuals with autism and other developmental disorders and is sometimes recommended for people with mental health disorders such as schizophrenia. So I'll cover the basics of both. (Can I stress that I am wading into territory that is not firmly entrenched in science or statistics yet.)
The basics of this diet are that the individual not only avoids gluten but also all foods that contain the dairy protein. Some need to do this due to a true allergy and some people report that they have reactions that are similar to gluten intolerance when consuming the dairy protein. This protein can be found in butter, cheese, cream and milk, as well as yogurt and countless other products including chocolate, lunch meat or other prepared meat products and other non-dairy products. Symptoms of a true milk allergy are very similar to gluten intolerance as well as wheat allergy and celiac disease so trying to separate out the allergies and sensitivities can be pretty rough and time consuming. The most common symptoms may include; multiple skin reactions, anaphylaxis, multiple digestive complaints (including diarrhea, vomiting, and pain), multiple reactions in the lungs (coughing, sneezing, shortness of breath or wheezing), migraines, irritability, hyperactivity and other personality changes, insomnia, fatigue, depression and anxiety... to start the list. ;) If the challenge of eliminating gluten from the diet seems to be formidable, adding the need for casein removal can make the challenge seem like a herculean task.
There are a few reasons put forward for the similarities in symptoms and the immune reactions in the body between ingestion of gluten and casein. All three have been and are currently under study by researchers.
Casein is one of the most common food allergies and some studies suggest that as much as thirty percent of the general population have elevated amounts of the antibodies in their blood.
Casein has a similar molecular structure to gluten and they both create similar metabolic byproducts from their breakdown and digestion.
The enzyme that is needed to digest dairy is found in the brush borders and the tips of the villi in the small intestine... which is the first area that is damaged in gluten consumption for those individuals who are susceptible. With the necessary enzymes being in low numbers or decimated, the digestive process fails until healing and enzyme re-population has commenced... in some cases, a year after a gluten exposure.
For many parents of children with mental health disorders or developmental delays such as autism, this diet is not seen as a “diet” per se, but as a necessity and way of life. The changes in both behavior as well as mentation have been pretty well documented in self reporting and other unofficial forums. From personal experience, I feel a lot more in 'control' of my mind when I haven't had gluten- celiac aside. These experiences as well as watching and learning from friends and parents who have navigated these particular waters, I have found a great deal of confirmation in my mind that there is a great deal of positive evidence for recommendation of this particular diet for people with specific diagnoses or conditions. So even as I stress that the scientific evidence isn't there yet, I feel like I would be remiss if I hadn’t taken the time to discuss it. Whether the problems are due to the body's confusion of the proteins, lack or appropriate digestive enzymes or even another allergy... the problems are very real and need to be dealt with by individual sufferers on a daily basis.
What are your thoughts? Do you personally have experiences with this diet and individuals who use it? Please share if you are willing to...! :)
The basics of this diet are that the individual not only avoids gluten but also all foods that contain the dairy protein. Some need to do this due to a true allergy and some people report that they have reactions that are similar to gluten intolerance when consuming the dairy protein. This protein can be found in butter, cheese, cream and milk, as well as yogurt and countless other products including chocolate, lunch meat or other prepared meat products and other non-dairy products. Symptoms of a true milk allergy are very similar to gluten intolerance as well as wheat allergy and celiac disease so trying to separate out the allergies and sensitivities can be pretty rough and time consuming. The most common symptoms may include; multiple skin reactions, anaphylaxis, multiple digestive complaints (including diarrhea, vomiting, and pain), multiple reactions in the lungs (coughing, sneezing, shortness of breath or wheezing), migraines, irritability, hyperactivity and other personality changes, insomnia, fatigue, depression and anxiety... to start the list. ;) If the challenge of eliminating gluten from the diet seems to be formidable, adding the need for casein removal can make the challenge seem like a herculean task.
There are a few reasons put forward for the similarities in symptoms and the immune reactions in the body between ingestion of gluten and casein. All three have been and are currently under study by researchers.
Casein is one of the most common food allergies and some studies suggest that as much as thirty percent of the general population have elevated amounts of the antibodies in their blood.
Casein has a similar molecular structure to gluten and they both create similar metabolic byproducts from their breakdown and digestion.
The enzyme that is needed to digest dairy is found in the brush borders and the tips of the villi in the small intestine... which is the first area that is damaged in gluten consumption for those individuals who are susceptible. With the necessary enzymes being in low numbers or decimated, the digestive process fails until healing and enzyme re-population has commenced... in some cases, a year after a gluten exposure.
For many parents of children with mental health disorders or developmental delays such as autism, this diet is not seen as a “diet” per se, but as a necessity and way of life. The changes in both behavior as well as mentation have been pretty well documented in self reporting and other unofficial forums. From personal experience, I feel a lot more in 'control' of my mind when I haven't had gluten- celiac aside. These experiences as well as watching and learning from friends and parents who have navigated these particular waters, I have found a great deal of confirmation in my mind that there is a great deal of positive evidence for recommendation of this particular diet for people with specific diagnoses or conditions. So even as I stress that the scientific evidence isn't there yet, I feel like I would be remiss if I hadn’t taken the time to discuss it. Whether the problems are due to the body's confusion of the proteins, lack or appropriate digestive enzymes or even another allergy... the problems are very real and need to be dealt with by individual sufferers on a daily basis.
What are your thoughts? Do you personally have experiences with this diet and individuals who use it? Please share if you are willing to...! :)
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2010/10/28
Migraines and Women

This week in class we studied three neurological disorders extremely common to women; migraine, Alzheimer's disorder and multiple sclerosis. I wanted to take the time to discuss the basics of migraines but also share a small autobiography from an old school friend who still suffers from migraines. I feel like unless you have truly suffered from migraines (or as my friend mentions sensory disorders and/or autism) you can have no idea what it truly is like and a definition will never been able to truly communicate that information to you. I have only had two migraines in my life and I wouldn't wish them on another living soul. I hope this information is not only informative to others, but also a forum for others to share their experiences as well for the education of my readers.
Migraines can be describes simply as a bad headache- however, that simple explanation really doesn't describe the scope, pain or symptoms of this disorder. A migraine can usually be divided into five separate phases called 'prodrome', 'aura', 'headache proper', 'headache termination', and 'postdrome'. While not every migraine sufferer will go through all five of these phases for every migraine, all migraines will usually have a few of these components. Migraines can also be divided into two types- migraines with 'aura' and migraines without. Symptoms of a migraine attack coming can happen a few hours or even days before the onset of the 'headache' and symptoms are not limited to, but can include irritation, euphoria, depression of affect/mood, intolerance of smell or sound that would usually be acceptable, aura, throbbing, pulse-like or pressure-like pain, as well as nausea and vomiting. It can be brought on by such things as inappropriate sleep, hormonal changes or menstruation, fasting, specific foods, environmental factors, possibly stress and even smoking or alcohol.
Some treatments include light medication such as over the counter pain relievers for mild symptoms as well as caffeine. For migraines that are not as mild, there are some pharmaceutical options that can be given orally, subcutaneously, or intra-nasally that have been shown to help. The most commonly used medications depending on symptoms and patient tolerance include Sumatriptan, DHE, anti-nausea medications, opiates, beta blockers, anti-epileptics, hormones such as estrogen and more. Other individuals use chiropractors, massage and acupuncture to control migraine symptoms.
I also got a pretty good biography from a friend -Renee Wrede- about her history and life dealing with migraines. I asked her specifically because I knew that at least for a while she was having them very frequently. What she wrote is a little long and is only lightly edited for spelling.
My hx of migraines
I started to noticed my headaches when I was little - about age 11. I remember pressing the side of my face against the cold window on the school-bus on the way home to relieve some of the hot throbbing pain around my eye/temple area. My family would tell me to lay down with a cool washcloth - but that didn't seem to help. Sleep and pain meds at the time offered limited relief. My PCP at the time told me that I would "grow out of it" - and seem to doubt my headaches - the sensitivity to light, sounds, touch, smell.
At age 13 I had a new doctor who first used the term "migraine" - he was able to describe my pain in detail - it was very validating. By this time I was experiencing weekly migraines and my family did not seem to believe me. By then we had noticed that cocoa triggered my migraines.
My new doctor prescribed a new upcoming pain med at the time (can't spell it) Toridol? It provided little to no relief.
I continued to experienced horrible migraines throughout school - if caught soon enough I was able to tame it down to where I could still function.
In April 2006 when my neck was broke while working with a teenage client my migraines went into overdrive. I struggled with the pain of the undiagnosed break and the migraines that seem to be a result of the break. Days went by without any relief - I was apply ice to the base of my neck as well as my head and face. I received burns for the cold on various parts of my head because covered ice packs were never "cold enough" so I opted to placing ice packs/bags of ice/frozen veggies/frozen juice cans directly on the point of pain.
I went to ER 2 -3 times a week - which eventually labeled me as "drug seeking" - although my tests always came out negative. I was diagnosed with a "mood disorder" because my pain affected my mood and my ability to work/focus/eat/socialize, etc.
8 months after the break the pain of the break had decreased but the migraines were ongoing. By now my migraines always included limited to no vision in my left eye. Black dots or white shimmering "diamond" images danced around my left vision moments before the pain began. I begged to be referred by a Neurologist - Dr. Good enough.
It was Dr. Goodenough who discovered the fracture in my neck. He also encouraged me to record my headaches and pains.
This was very informative - and helped me identify the migraines from the sinus headaches. It also helped me to identify that my hormones play a HUGE part in my migraines - they appear to cycle around my cycle. And Dr. Goodenough prescribed a daily med Topamax to prevent the migraines as well as a Relapax for when the Monster Migraines attacked. It seem to work - my migraines decreased from daily to 14 a month. Pretty good at that time.
I think my stress level, my physical and mental health continues to play a role in my migraines. I am still triggered by smells and cocoa. Now I experience 2-3 migraines a month. Did I mention that I often throw up when I have a migraine - this was particularly painful in 2006 while my neck was healing.
Despite the pain - it often amazes me how all my senses are brought to a new level - I remember laying on the floor in the dark ER bathroom - the only place that sheltered me of the light, limited smells, and muffled the sounds of the ER - and while I groaned with the frozen peas to my head I thought "I can smell bacon - they must be cooking bacon - God I want to throw up and die!" (They were in fact cooking bacon one floor below!) This is what I call the "superman affect" of my migraines - my hearing, smell, sight, touch are so enhanced that it's painful - I can only imagine that this might be similar to the term "sensory overload" that we often use with children an autism diagnoses. It's intense and it's hell.
I think one friend described migraines best when she said "At first you're in so much pain that you fear dying. Finally near the end you're in so much pain that you fear that you'll never die!"
After the break in 2006 - after the mood disorder and drug seeking labels - I wanted my life to end. The constant pain was too much - I couldn't take it any more. One night at the ER I whispered (I can't speak at a normal level during a migraine) - to the doctor on duty to kill me. "If you care about me - you'll kill me now." The room was dark - my boyfriend stood by my bedside - my connection with friends and family had also been affected by my migraines. The ER doctor laughed (loudly) and seem to take my request as a joke. Little did he know that I had already spoken to family members about custody of my son and possible funeral arrangements.
I can totally understand ending your life when you're in so much pain with no end in sight. I am grateful that a friend suggested Dr. Goodenough - it is frustrating that the ONLY assistance and support I received was from a provider whom I had to seek out. However, now I'm in a better place. Life is good - and I have a hard time believing what life was like 4 short years ago.
If you are reading this and suffer from migraines, please feel free to comment anonymously if you wish. If nothing use, I want to have a better understanding of the problems, but I also want to know how I can help people who are having these problems. Understanding the disorder I think will help. :)
2010/03/07
Boo just spent a few minutes taking a toy tractor and using pipe cleaners to "hitch" up a zebra and then filled the tractor with pipe cleaner "hay." We just had a fun afternoon playing with toys and running with Rob at the beach. Just a good day!
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2010/02/15
ABA and Difficult Situations
My husband had a disturbing experience the other day. He was shopping in a big box store with Bug and they were looking at a few toys while I got my glasses fixed. While they were doing so, a young man came into the aisle with an adult female. It became clear to my husband fairly quickly that the young man had autism and the female was not his mother, but probably his 'section 24' worker. The young man than asked to buy something and was promptly told no. This prompted him to go into a huge tantrum that seemed more of a statement and attention seeking and less of out of control behavior. The worker's reaction was extraordinary. She immediately became livid- absolutely unreasonably angry and it was clear very quickly that she was so angry that the situation would possibly go out of control for both of them. She was clearly so angry that she would be unable to help in any de-escalation of the situation. What was her next step? She looked at the young man and said “ Well, you just lost three stars, young man!”
I am so confused by ABA sometimes. In this situation, the worker allowing herself to get angry and then telling the child that due to his behavior he has lost a privilege, etc.. really seems to send the wrong message. For one thing, it feels pretty hypocritical to punish someone else for not controlling their behavior while you have lost control of your emotions/behavior. It was clear to my husband that the child's response was not “oh I should stop”. It resembled more of “Well, nothing left to lose now-already lost my privileges.” My husband quickly moved my son out of the aisle and they left as the situation did continue to rapidly spiral out of control. I was once told that anyone using behaviorism has to be very, very careful because often, the lesson that they are trying to teach is not the lesson that the other individual is picking up. And ABA is so rigid and doesn't take a lot of factors into account for the individuals involved. In some ways (and this worker expressed this) it is more about expressing and exerting control over someone else.
Now, it is possible that the worker was having a bad day and this wasn't her typical behavior. It is also possible that this is the worker's typical behavior and the child was having a bad day. Of course, we could have misunderstood the whole situation. And it is possible that the parents are either OK with this behavior or have no idea that the behavior by the worker is going on. It is also possible the the parent's know, but are so desperate for the break that they are willing to accept the worker's behavior. It is also possible that the worker is not really trained at all and is just struggling to figure out what she is supposed to do. There are probably several options that I haven't even thought of yet.
But that whole situation shouldn't have happened. In the end, it wasn't fair to the child. Sure his fake tantrum was silly, but he probably just learned to keep doing the tantrum by the worker's behavior. And the worker will probably get even more angry and quit, leaving the family in a bad spot, and leaving the child with more adverse behavior that the new worker will have to deal with. The whole situation just makes me sad.
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