A lot of deaths are already technically assisted suicides. Its done by the Physician when they make decisions regarding end of life care, and there is some risk to them of a lawsuit if its "done incorrectly." Most Physicians will recommend everyone have a Living Will in place which will help with these decisions and remove some of the possible guilt the family members experience when going through end of life issues with a loved one.
However, many times people don't know the reality of the services they are denying themselves. IV's, antibiotics, oxygen, feeding tubes and morphene are all things that can turn a life around at times and the person recovers a few good years after a crisis, even at an advanced age.
Hospice care has progressed considerably over the last 20 years, and they can provide help both with the ethical decision-making and the pallitive care that can ensure that the end of life is approached with minimal pain, suffering, fear and guilt, and with the highest quality of life possible for the remaining time.
Everyone should have a financial Will and a Living Will, and a medical power of attorney chosen. Look into hospice care at least 6 months to a year before it seems necessary--you can actually recover from the extra care and attention hospice provides and then return to it later when it is needed again.
Hospice can be provided in a nursing home, extended care setting, a hospice facility or at home. In each case it extends the amount and type of care to consider ultimate death and the quality of life until death happens.
We have such good pain medications now available that no one should suffer with great pain. We have anti-depressants, and counselling to deal with the fear and anxiety. We now know how to include the family with dignity and not to isolate the dying from their loved ones.
There are many assistive technologies, medical devices, and proceedures that help the non-dying disabled which can help a dying person to be more comfortable, functional and participatory than ever before. These have to sometimes be advocated and even fought for, particularly with the elderly, but they can make a huge difference in someone's life at the passage to the end of life.
For instance, special padding and dressings for prevention of bed sores, communication devices for those with limited movement, automated controls so the person can control the environment in their room, such as to turn on and off a TV, phone, lights, temperature, etc. specialized wheelchair seating to improve lung capacity, a vest that helps someone to cough easily with less effort.
Sunday, April 4, 2010
Movie Review - The Horse Boy
I just saw a preview of the movie, "The Horse Boy." As the parent of a 16-year old child with Autism, I was pleased to see Autism getting more public attention and that a family was willing to let the world see their son's stuggles and healing, their parenting, and their challenges with accepting and dealing with Autism on a daily basis.
There are so many things about this movie I can identify with. The period of grieving the loss of the child you might have had, the period of learning to accept the child you do have, and the period where you stretch and learn and grow into someone you never thought you could be while searching for answers to a puzzle no one has quite figured out. I understand the great love and desperation that drives a parent to try everything in their power to try to help their child -- even non-mainstream things that you would never have considered otherwise.
This journey took me all kinds of places I never would have been and developed my risk-taking skills, and I learned so much about so many things. And sometimes you just have to surrender to what is, and learn to just be with instead of force a child to change. This surrender is much like a spiritual process, and so the parents in the film have reached out to spiritual healers in Mongolia through their son's connection to animals, and the families' connection to horses.
Our son did horseback riding as part of his therapy. We couldn't afford the more formal "Hippotherapy" which involves having a specifically trained therapist, a person who also specially trains the horses, and, of course, specially trained horses. This is expensive, and might be partially unnecessary to the process, since mainly having trained people is for safety reasons, and for liability and insurance purposes. The father in the film says that he had trained horses, and taught horseback riding, and so was very familiar with horses already.
http://www.americanequestrian.com/hippotherapy.htm
We had a therapist already working for us doing ABA therapy (Lovaas type) who had rescued a police horse from being put down because of a stroke. He offered to help our son ride his huge disabled horse, and they helped each other to heal.
http://www.lovaas.com/
In some ways, I think Autism resembles a stroke in the brain, because there seems to be some type of brain injury that occurs that happens in genetically susceptible individuals. There are some behaviors that all the coaching, training and discipline in the world are intractable at any given moment, and they seem more like a brain adaptation to abnormal sensory processing than anything like a discipline issue, or a lack of information (education). This makes any Autism therapy more like rehabilitation than like education, although these two modalities resemble each other.
Autistic people use their senses differently, probably not by choice, but because they have to. And this can lead them to be more like animals, who sense the world differently than we do, and don't use a formal (structured) language to communicate. When the five senses are hypersensitive, and social/language brain activity is less sensitive, then it seems like other human abilities can come into play that we were never aware that we had. Autism uncovers unusual abilities side-by-side with very limiting dis-abilities.
I read a lot about Shamanism before and since having my son, (I am a practicing Christian by choice) and I understand how a Shamanistic method might be attractive to the parents in this film as a healing modality. When nothing else works, and your child has been given a diagnosis that is just as intense as a cancer diagnosis, you often pray first...and often. And the compelling change in the child after being with the Shaman's is proof that ancient and folk ways do have a place in healing.
"Shaman, Healer, Sage: How to Heal Yourself and Others with the Energy Medicine of the Americas" by Alberto Villoldo Ph.D.
I am concerned, however, that people don't stereotype Autism as only some kind of demon possession, although it might be characterised that way, and spiritually it might seem like that. We had a superstitious church in our city that took a 6 year old Autistic boy and tried to expel the demon from him by holding him down for hours at a time, and the child died. This is what I am afraid of...a fundamental approach toward a spiritual answer that takes Autism itself too literally and the illness is not literally demon possession.
Autistic boy dies at faith healing service
Police: Pastor's brother held on suspicion of child abuse
http://www.cnn.com/2003/US/Midwest/08/24/autistic.boy.death/
Trying to peg Autism into an already-existing category does a disservice to the child, and inhibits what you might learn from the child's illness and/or genetic differences by observing how this disease/illness is unique, and how each individual Autistic child is unique. A child might have a deep spiritual side that is relatively unaffected by his disability, or might even be enhanced by the Autism.
But it could go the other way and the Autistic might be affected by a spiritual challenge that is overshadowed by his or her manifestations of Autism symptoms. However, it is not just a spiritual problem. And even if Autism has a spiritual origin (perhaps everything in this world is of spiritual origin) it does have very real physical components that can be dealt with, and very real symptoms that must be dealt with.
The Mongolian people accepted the child and the parents and didn't seem to judge them. Acceptance is the cornerstone of a treatment modality that I am very drawn to and used this approach a lot over the last ten years with my son, which is called the Sonrise Method, by Barry Kaufman. We didn't go to the treatment center because of the expense, but I got a lot out of reading his books and following the spirit of the methods the center employs.
http://www.autismtreatmentcenter.org/
Before you can change anything, you must first accept what is. To put it another way, (as per Dr. Phil) You can't change what you don't acknowledge.
As I have learned, you can't change Autism by simply fighting with it. Increased disciplinary measures don't work (in the way we traditionally discipline), but it takes great discipline on the part of the adults in the child's life to do what does work, with enough clarity, understanding, persisitence, consistency, and with enough accuracy. What you resist, persists. And focusing on the "bad" might only enhance the unwanted aspects you are trying to modify. Forcing the child to hide the symptoms of his illness, and not to express his discomfort except in certain very specific ways, seems almost abusive, if you were to view it as if it were diabetes, or any other injury or illness.
There was a child in our state that had diabetes, and the fundamentalist religious parents chose to only use prayer as a healing method, and the girl died at age 11 from a very treatable disease. She had been displaying serious symptoms for a long time.
Parents charged in diabetes death
They didn't get medical help for sick daughter
http://www.jsonline.com/news/wisconsin/29556929.html
There were several symptoms that my son had that were considered socially odd, and we had a very difficult time changing them. We then realised that some things, like hand-flapping, were self-regulatory mechanisms that he was using to manage his energy and emotions. When we tried to completely eradicate hand-flapping at a young age, he only became more agitated and had a more difficult time focusing on what we were trying to teach him. After a few years, the hand-flapping was something more amenable to change, and he learned to bite his fingernails instead. His fingernails would be almost completely bitten off, but this was more "socially acceptable-looking" behavior and so it was tolerated for a while until we could find some other way to help him self-regulate. He went through several phases like this, with each adaptation becoming more sociably acceptable, until now he is very close to being normal. I can still spot the self-regulatory things he does, but most people wouldn't see it as any kind of problem.
At age 4, the parents in the movie were already saying that no other healing methods were working. Of the many methods we tried, most of them required some time, and quite a bit of skill and ingenuity to implement with an Autistic child. I am concerned, for instance, that many parents who try the GF/CF diet for Autism don't do it thoroughly enough and for not enough time to affect any lasting change. When we first tried it, other family members undermined the effort, and the school and extended family were totally unfamiliar with it, and not interested enough in this method to really be on-board with it. Then, several years later, on trying it again, with more resources, and more products available, and a different strategy, it worked.
The strategy that finally worked best for us with the GF/CF diet was to put the entire family on it. Paradoxially it seemed to be easier than just putting the Autistic child on it. And also, other family members' health improved as a bonus.
Karyn Seroussi wrote about this diet's use for Autism years ago, and here is a link to an article that I first read before trying this healing method:
http://www.autisminfo.com/seroussi.htm
http://www.youtube.com/watch?v=2EJUsyypI4Y
http://www.amazon.com/Unraveling-Mystery-Pervasive-Developmental-Disorder/dp/0767907981
I will post again with what these differences were.
I was not expecting to like this movie. I was sure that I would be disappointed by any parent's approach that claimed that only horseback riding, and only Shammanism worked for their son's Autism. I am tempted to think that removing the child from his home environment for an extended period of time, to an un-industrial area where the ambient toxin levels were lower, and the foods were less processed and locally grown, all contributed, in part to their son's improvements. Plus, the extended, loving focus of the parents and all the surrounding people's concern and non-judgemental attitudes probably helped the boy tremendously. The little boy who accompanied the group was very tolerant of the child's differences.
We found that having a peer who was recruited to play with our son helped him a lot. This helped him learn in a more age-appropriate way (i.e., not all coming from adults, in an adult sort of way.) A lot of Autistic children grow up to be like "mini-professors," acting more like miniature adults, because they mimic the authoritarian, information-based, and lecture-type communication given them by adults. This style, of course, doesn't often go over well with other children, who would often much rather just play. And play is a form of learning among higher-intelligence animals (as well as with humans.)
But I did like the movie. I loved seeing it with my son, and asking him if he remembered being like this or that. There were a lot of memories that came flooding back, about the difficulties, and the joys. I loved seeing the beautiful Mongolian landscapes and people. I loved seeing the great love and concern between the parents and their child. The horses were beautiful, and the suspense of what the outcome of the risks this family was taking was intriguing.
I wish everyone who thinks that parents of Autistic children are somehow "refrigerator parents" would see this movie. I hope that everyone who thinks Autism is just something that requires more discipline would see this movie. I think that people who think that Autism sometimes resembles a tantruming, colicy, child can see that it is more than that.
These children are in real distress. I think that you can see in the movie that the child does suffer and is not enjoying any benefit of a "power struggle." I think that the child's suffering should spur us to find better treatments for Autistic children and to provide more help for their overwhelmed parents. And to not look only at traditional healing modalities as the only possible alternative for treatment. This is a baffling illness and we might be limiting ourselves too much if we only look in the tired, worn paths for the answers.
It is unfortunate that insurance doesn't cover Autism treatments of any kind (until only very recently) and even if it did, it would never cover about two thirds of the things that have really helped our son.
I think that in some ways, insurance stifles innovation in healing. And by its institutional nature it can minimize and even denigrate traditional healing modalities. So I hope that all those who are concerned about the best interest of the child with Autism and their caregivers will still look in a broad spectrum of healing alternatives for the possible answers. And not every child will respond in a cookie-cutter fashion to a certain treatment. And so unless (until!) we can find a cure or better yet, a prevention, we will have to have a lot of tricks up our sleeves to try.
We have inherited a very large tool kit of healing methods, and we are only using a small portion of it. I hope we can find a more balanced approach in the future.
There are so many things about this movie I can identify with. The period of grieving the loss of the child you might have had, the period of learning to accept the child you do have, and the period where you stretch and learn and grow into someone you never thought you could be while searching for answers to a puzzle no one has quite figured out. I understand the great love and desperation that drives a parent to try everything in their power to try to help their child -- even non-mainstream things that you would never have considered otherwise.
This journey took me all kinds of places I never would have been and developed my risk-taking skills, and I learned so much about so many things. And sometimes you just have to surrender to what is, and learn to just be with instead of force a child to change. This surrender is much like a spiritual process, and so the parents in the film have reached out to spiritual healers in Mongolia through their son's connection to animals, and the families' connection to horses.
Our son did horseback riding as part of his therapy. We couldn't afford the more formal "Hippotherapy" which involves having a specifically trained therapist, a person who also specially trains the horses, and, of course, specially trained horses. This is expensive, and might be partially unnecessary to the process, since mainly having trained people is for safety reasons, and for liability and insurance purposes. The father in the film says that he had trained horses, and taught horseback riding, and so was very familiar with horses already.
http://www.americanequestrian.com/hippotherapy.htm
We had a therapist already working for us doing ABA therapy (Lovaas type) who had rescued a police horse from being put down because of a stroke. He offered to help our son ride his huge disabled horse, and they helped each other to heal.
http://www.lovaas.com/
In some ways, I think Autism resembles a stroke in the brain, because there seems to be some type of brain injury that occurs that happens in genetically susceptible individuals. There are some behaviors that all the coaching, training and discipline in the world are intractable at any given moment, and they seem more like a brain adaptation to abnormal sensory processing than anything like a discipline issue, or a lack of information (education). This makes any Autism therapy more like rehabilitation than like education, although these two modalities resemble each other.
Autistic people use their senses differently, probably not by choice, but because they have to. And this can lead them to be more like animals, who sense the world differently than we do, and don't use a formal (structured) language to communicate. When the five senses are hypersensitive, and social/language brain activity is less sensitive, then it seems like other human abilities can come into play that we were never aware that we had. Autism uncovers unusual abilities side-by-side with very limiting dis-abilities.
I read a lot about Shamanism before and since having my son, (I am a practicing Christian by choice) and I understand how a Shamanistic method might be attractive to the parents in this film as a healing modality. When nothing else works, and your child has been given a diagnosis that is just as intense as a cancer diagnosis, you often pray first...and often. And the compelling change in the child after being with the Shaman's is proof that ancient and folk ways do have a place in healing.
"Shaman, Healer, Sage: How to Heal Yourself and Others with the Energy Medicine of the Americas" by Alberto Villoldo Ph.D.
I am concerned, however, that people don't stereotype Autism as only some kind of demon possession, although it might be characterised that way, and spiritually it might seem like that. We had a superstitious church in our city that took a 6 year old Autistic boy and tried to expel the demon from him by holding him down for hours at a time, and the child died. This is what I am afraid of...a fundamental approach toward a spiritual answer that takes Autism itself too literally and the illness is not literally demon possession.
Autistic boy dies at faith healing service
Police: Pastor's brother held on suspicion of child abuse
http://www.cnn.com/2003/US/Midwest/08/24/autistic.boy.death/
Trying to peg Autism into an already-existing category does a disservice to the child, and inhibits what you might learn from the child's illness and/or genetic differences by observing how this disease/illness is unique, and how each individual Autistic child is unique. A child might have a deep spiritual side that is relatively unaffected by his disability, or might even be enhanced by the Autism.
But it could go the other way and the Autistic might be affected by a spiritual challenge that is overshadowed by his or her manifestations of Autism symptoms. However, it is not just a spiritual problem. And even if Autism has a spiritual origin (perhaps everything in this world is of spiritual origin) it does have very real physical components that can be dealt with, and very real symptoms that must be dealt with.
The Mongolian people accepted the child and the parents and didn't seem to judge them. Acceptance is the cornerstone of a treatment modality that I am very drawn to and used this approach a lot over the last ten years with my son, which is called the Sonrise Method, by Barry Kaufman. We didn't go to the treatment center because of the expense, but I got a lot out of reading his books and following the spirit of the methods the center employs.
http://www.autismtreatmentcenter.org/
Before you can change anything, you must first accept what is. To put it another way, (as per Dr. Phil) You can't change what you don't acknowledge.
As I have learned, you can't change Autism by simply fighting with it. Increased disciplinary measures don't work (in the way we traditionally discipline), but it takes great discipline on the part of the adults in the child's life to do what does work, with enough clarity, understanding, persisitence, consistency, and with enough accuracy. What you resist, persists. And focusing on the "bad" might only enhance the unwanted aspects you are trying to modify. Forcing the child to hide the symptoms of his illness, and not to express his discomfort except in certain very specific ways, seems almost abusive, if you were to view it as if it were diabetes, or any other injury or illness.
There was a child in our state that had diabetes, and the fundamentalist religious parents chose to only use prayer as a healing method, and the girl died at age 11 from a very treatable disease. She had been displaying serious symptoms for a long time.
Parents charged in diabetes death
They didn't get medical help for sick daughter
http://www.jsonline.com/news/wisconsin/29556929.html
There were several symptoms that my son had that were considered socially odd, and we had a very difficult time changing them. We then realised that some things, like hand-flapping, were self-regulatory mechanisms that he was using to manage his energy and emotions. When we tried to completely eradicate hand-flapping at a young age, he only became more agitated and had a more difficult time focusing on what we were trying to teach him. After a few years, the hand-flapping was something more amenable to change, and he learned to bite his fingernails instead. His fingernails would be almost completely bitten off, but this was more "socially acceptable-looking" behavior and so it was tolerated for a while until we could find some other way to help him self-regulate. He went through several phases like this, with each adaptation becoming more sociably acceptable, until now he is very close to being normal. I can still spot the self-regulatory things he does, but most people wouldn't see it as any kind of problem.
At age 4, the parents in the movie were already saying that no other healing methods were working. Of the many methods we tried, most of them required some time, and quite a bit of skill and ingenuity to implement with an Autistic child. I am concerned, for instance, that many parents who try the GF/CF diet for Autism don't do it thoroughly enough and for not enough time to affect any lasting change. When we first tried it, other family members undermined the effort, and the school and extended family were totally unfamiliar with it, and not interested enough in this method to really be on-board with it. Then, several years later, on trying it again, with more resources, and more products available, and a different strategy, it worked.
The strategy that finally worked best for us with the GF/CF diet was to put the entire family on it. Paradoxially it seemed to be easier than just putting the Autistic child on it. And also, other family members' health improved as a bonus.
Karyn Seroussi wrote about this diet's use for Autism years ago, and here is a link to an article that I first read before trying this healing method:
http://www.autisminfo.com/seroussi.htm
http://www.youtube.com/watch?v=2EJUsyypI4Y
http://www.amazon.com/Unraveling-Mystery-Pervasive-Developmental-Disorder/dp/0767907981
I will post again with what these differences were.
I was not expecting to like this movie. I was sure that I would be disappointed by any parent's approach that claimed that only horseback riding, and only Shammanism worked for their son's Autism. I am tempted to think that removing the child from his home environment for an extended period of time, to an un-industrial area where the ambient toxin levels were lower, and the foods were less processed and locally grown, all contributed, in part to their son's improvements. Plus, the extended, loving focus of the parents and all the surrounding people's concern and non-judgemental attitudes probably helped the boy tremendously. The little boy who accompanied the group was very tolerant of the child's differences.
We found that having a peer who was recruited to play with our son helped him a lot. This helped him learn in a more age-appropriate way (i.e., not all coming from adults, in an adult sort of way.) A lot of Autistic children grow up to be like "mini-professors," acting more like miniature adults, because they mimic the authoritarian, information-based, and lecture-type communication given them by adults. This style, of course, doesn't often go over well with other children, who would often much rather just play. And play is a form of learning among higher-intelligence animals (as well as with humans.)
But I did like the movie. I loved seeing it with my son, and asking him if he remembered being like this or that. There were a lot of memories that came flooding back, about the difficulties, and the joys. I loved seeing the beautiful Mongolian landscapes and people. I loved seeing the great love and concern between the parents and their child. The horses were beautiful, and the suspense of what the outcome of the risks this family was taking was intriguing.
I wish everyone who thinks that parents of Autistic children are somehow "refrigerator parents" would see this movie. I hope that everyone who thinks Autism is just something that requires more discipline would see this movie. I think that people who think that Autism sometimes resembles a tantruming, colicy, child can see that it is more than that.
These children are in real distress. I think that you can see in the movie that the child does suffer and is not enjoying any benefit of a "power struggle." I think that the child's suffering should spur us to find better treatments for Autistic children and to provide more help for their overwhelmed parents. And to not look only at traditional healing modalities as the only possible alternative for treatment. This is a baffling illness and we might be limiting ourselves too much if we only look in the tired, worn paths for the answers.
It is unfortunate that insurance doesn't cover Autism treatments of any kind (until only very recently) and even if it did, it would never cover about two thirds of the things that have really helped our son.
I think that in some ways, insurance stifles innovation in healing. And by its institutional nature it can minimize and even denigrate traditional healing modalities. So I hope that all those who are concerned about the best interest of the child with Autism and their caregivers will still look in a broad spectrum of healing alternatives for the possible answers. And not every child will respond in a cookie-cutter fashion to a certain treatment. And so unless (until!) we can find a cure or better yet, a prevention, we will have to have a lot of tricks up our sleeves to try.
We have inherited a very large tool kit of healing methods, and we are only using a small portion of it. I hope we can find a more balanced approach in the future.
Subscribe to:
Posts (Atom)
