See the YouTube video here
President Obama, congratulations on the new job -- hope all is going well so far. I hope and pray that the ‘change’ you want to achieve can be realized, especially regarding, Autism. I know who you are; let me introduce myself. My name is John Kirton and my wife, Robin, and I are the parents of six Autistic children. Yes, that’s right… six children on the Autism Spectrum.
Last year we were in People Magazine, Good Morning America, Inside Edition and Larry King Live. The documentary about our family, Autism x 6, first aired on the Discovery Health channel in October 2008. And was on again this past week. Not quite the media attention you’ve received but we are still working on that. You may ask, what are our goals? To increase the awareness, acceptance and services for people and families affected by Autism.
Let me get to my main point for sending you this message. Last year during the campaign, you said you would appoint an ‘Autism Czar’ to deal proactively with Autism. Mr. President, as a Dad of 6 Autistic children, I’m asking you to please appoint a qualified coordinator—NOW!
What are some of the qualifications that I and most parents of Autistic children are looking for? We need someone who truly, TRULY understands Autism. Not, an academic. Someone who understands the ‘real world’ of Autism. He should be a father of Autistic children, with at least a couple of children on the spectrum. Why is that so important? He needs to have firsthand knowledge to understand parents and their struggle with the emotions and finances of Autism.
When Congress passed the Combating Autism Act they recommended the establishment of an Autism Advisory Board made up of scientists, clinicians, and advocates. Now, it may be all well and good to have an ‘advisory board’ IF Autism was not a National Health Emergency, which it is. There is WAY too much talk and thinking about doing something about Autism. The time for action in NOW — Mr. President!
The Autism Czar position must not be a ‘paper tiger’ this tiger MUST have teeth, BIG teeth – that carries the weight of the President behind it. Funding must not be only, allocated, but available immediately. If we don’t spend the pennies it will take TODAY, it will cost many, many dollars in the future.
Across this nation, State legislators are working on insurance mandates, that aren’t getting out of committees or are watered down. This is not helping families of Autism. We need someone, like you Mr. President, to care about us and our children.
Imagine for a moment that your daughter, Natasha, who is almost the same age as my Sarah, has Autism. Natasha wears diapers, she spends much of her waking hours tearing the sheet rock paper off of the walls in her bedroom. Natasha is only able to talk with guttural sounding words, such a MAAA for Mom or DAAA for Daddy. Many of the times you talk to her, Natasha stares off into space like she doesn’t hear a word you are saying. You worry about her future. Will Natasha be able to carry on a conversation with you one day? Will she fall in love, can she? Will Natasha get married? What will her life by like? Can you imagine this for Natasha? I don’t need to imagine this about my Sarah. This IS her life and I DO, indeed, worry about her future life.
Like the ‘war on terror’ and the ‘war on drugs’, we need a “War on Autism”. Someone with military experience may be a plus.
Some want to discover what causes Autism, however maintaining a focus on the WHY of Autism may cause us to lose sight of what Autistic persons and their families have concerns about as well, like housing, education, employment, quality of life issues and long-term support.
The Autism Czar or coordinator must understand and work on a wide variety of issues and concerns within the Autism community. The following, not in any peculiar order, needs to be on his ‘short’ list.
• Have an Autism Czar for each state
• Each state needs an clearinghouse of information and services
• Dr. training is needed to help them recognize Autism
• Mandating that insurance companies cover Autism treatments
• Overhauling the IDEA program to insure that Individualized Education Plans are actually tailored to the students' particular learning needs, not to the schools needs, beliefs or budget constraints.
• Increase the scope of the IEP to add behavior training and nutritional needs
• Maintain a blog that accepts comments from the public
• Lets expand the availability of services that help Autistic children, such as ABA
• And let funding for research focus on finding more of what will help, not necessarily what caused the Autism
• Many parents believe that they are not getting straight answers on Autism from the CDC, let’s check into that
• Insure that all areas of Autism’s perspectives are addressed, such as
• Biomedical research on causes, treatments, and cures
• Disability services
• Accessibility
• Community inclusion
• Education and therapy for self improvement
• And public education for autism acceptance
• Create a coordinated effort for research to prevent duplication or wasting of funds
• Let’s loosen up SSI requirements to include those diagnosed with milder forms of Autism
•And also include SSI for families that (quote) make too much, when you have child with Autism money dries up VERY quickly
• This list just the beginning, the Autism Czar will find a lot more that needs to be addressed
Let these services, treatments and accommodations be available to all Americans, but not be mandatory. If a person with Autism does not want to (quote) be fixed, that needs to be their choice. Personal and parental choice MUST be honored and maintained.
It’s been said that when you see one person with Autism, you’ve seen ONE person with Autism. So again the Czar must have firsthand knowledge of the ranges of Autism in individuals. That is all I have to say for now, however I’d be very happy to meet with you or your staff to discuss in detail some of the points that I’ve brought up.
Thank you for your time and concern, Mr. President, we pray every night that you will help us, and the Autism community. Thank you.
Tuesday, March 10, 2009
Wednesday, March 4, 2009
Autism Opinions and Noses, Everybody Has One
Now it's Schizophrenia. The bad thing about research is for every 'study' that supports one set of views, there are three others that support an opposite conclusion. Autism? It's the water, bad parenting, vaccinations, genetics, heavy metals, pollution, preservatives, etc.. etc., etc...
As the Dad of six children with Autism I'm more concerned with research that can help the Autistic person to have a more full life. Research to uncover the best in education, social training, nutrition and treatments. Some funding spent on 'why' is acceptable, but the bulk needs to be addressing the here and now and plan for the future.
Funding for Autism research is good, funding to help with day to day living, is better.
Autism is a spectrum disorder, caused by a spectrum of reasons, needing a spectrum of treatments and a spectrum of funding. (Spectrum: A broad sequence or range of related qualities, ideas, or activities).
Our country must get moving to discover what can be done improve this situation. If every parent of Autism will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.
As the Dad of six children with Autism I'm more concerned with research that can help the Autistic person to have a more full life. Research to uncover the best in education, social training, nutrition and treatments. Some funding spent on 'why' is acceptable, but the bulk needs to be addressing the here and now and plan for the future.
Funding for Autism research is good, funding to help with day to day living, is better.
Autism is a spectrum disorder, caused by a spectrum of reasons, needing a spectrum of treatments and a spectrum of funding. (Spectrum: A broad sequence or range of related qualities, ideas, or activities).
Our country must get moving to discover what can be done improve this situation. If every parent of Autism will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.
Thursday, February 26, 2009
New Autism x 6 Dates and a Podcast
Our documentary, "Autism x 6", is back after a two month break. It will be showing on the Discover Health channel the following times: Mar 04, 8:00 pm, Mar 04, 11:00 pm, Mar 07, 1:00 pm (all times are EST).
Also I've been interviewed by the Autism Hangout. My podcast is here
Enjoy some ramblings and blather from a Dad with 6 Autistic children.
Also I've been interviewed by the Autism Hangout. My podcast is here
Enjoy some ramblings and blather from a Dad with 6 Autistic children.
Thursday, February 19, 2009
Parents of Autism - Keep and Protect Your Children
When I read this article my blood reached the boiling level very quickly. If you haven't read it yet in some of our previous blogs, our children were removed from our home for 2 weeks by the state of Utah. Read this and make sure you get involved to protect your rights... Dad
Giving the State a Grasp on Your Kids
Part II of an in-depth look at Article 18 of the UN Convention on the Rights of the Child
When Kevin and Peggy Lewis volunteered their child for special education services, they never dreamed they would need a lawyer if they wanted to change their minds.
After their son developed several learning issues, including an inability to focus in class and difficulty processing and understanding oral and written communication, the Lewis's turned to the Cohasset Middle School in Massachusetts for help.1 But after a year in the school's special education program, their son was not improving academically, and felt harassed by school officials who were closely monitoring and reporting on his behavior - everything from chewing gum in class to forgetting his pencil.2
Initially, the Lewis's requested that the school pay for private tutoring, but as their relationship with the administration continued to decline, the exasperated parents finally decided to withdraw their son from the school's program and to pay for private tutoring out of their own pockets.3
Apparently, that option wasn't good enough for the school.
In December 2007, Cohasset hauled Kevin and Peggy into court, claiming that the parents were interfering with their son's "constitutional right to a free and appropriate education."4
After a day-and-a-half of argument, the judge sided with the school in an unwritten opinion.5
"This is truly devastating to all parents who have children on an IEP," Peggy said, referring to the individual education plans for special education students. "What it means in fact when you sign an IEP for your child, you sign away your parental rights. . . . Now Cohasset has their grasp on my kid."6
"Help" for Parents
At first glance, it seems odd that a school would take parents to court to compel them to accept state services. After all, as observers of the case commented, schools usually objects when parents demand more aid for their children, not when the parents try to withdraw their child from the program.7
But according to the UN Convention on the Rights of the Child ,once parents have asked the state for assistance in raising their children, the state has both the responsibility and the authority to see the job through - even if the parents no longer support the state's solution.
In addition to imposing legally-enforceable "responsibilities" on parents, Article 18 of the Convention also requires states to "render appropriate assistance to parents and legal guardians in the performance of their child-rearing responsibilities," and to establish "institutions, facilities and services for the care of children."8
At first glance, the offer of "assistance" to parents may appear harmless, and even generous, but appearances are often deceiving. While the government may claim to offer services to parents on a purely "voluntary" basis, parents soon discover that government "assistance" isn't always free.
When "voluntary" doesn't mean "voluntary"
For examples of this dangerous trend, one need look no further than the nation of Sweden, the first western nation to ratify the Convention.
In addition to mandatory sex-education, free child care for working parents, and a national ban on corporal punishment, Sweden's local municipalities are also required by law to offer parents a broad array of "voluntary" services that promote "the favourable development of children and young persons."9 Unfortunately, according to Swedish attorney and activist Ruby Harrold-Claesson, voluntary care "in no way is voluntary since the social workers threaten the parents to either give up their child voluntarily or the child will be taken into compulsory care."10
If the state determines at a later date that the "voluntary" services are not helping, the municipality has both the responsibility and the authority to physically "take a child into care and place him in a foster home, a children's home or another suitable institution."11 According to Harrold-Claesson, since the emergence of such programs, "children are being taken from their parents on a more routine basis."12
Unfortunately, these disturbing trends are not confined to Sweden. Even here in the United States, "voluntary" services for parents are often the first step toward state control of families.
Holding Children Hostage
As a young mother of three, "Katianne H." faced tremendous difficulties in making ends meet.13 Although she was never unemployed, Katianne had difficulty putting her job ahead of the needs of her young family. So when her three-month-old son Xavier developed severe allergies to milk and soy protein, her pediatrician recommended that she relieve some of the pressure placed upon her by requesting that her son be placed in "temporary out-of-home care."14 Thinking such a placement was truly "voluntary," Katianne agreed.
Within a few months, Xavier was weaned from the feeding tube to a bottle, but when Katianne sought to bring him home, the state refused.
It would take more than two-and-a-half years - and a decision from the Nebraska Supreme Court - before Katianne would win her baby boy back.15
In a unanimous ruling, the court said the child should have been returned to his mother as soon as his medical condition was resolved. Instead, state authorities drew up a detailed plan requiring the mother to maintain steady employment, attend therapy and parenting classes, pay her bills on time, keep her house clean, improve her time management, and be cooperative with social workers. When she failed to fully comply with all these obligations within fifteen months, her parental rights were terminated.16
The Court condemned the state for keeping Xavier "out of the home once the reasons for his removal had been resolved," and warned that a child should never be "held hostage to compel a parent's compliance with a case plan" when the child could safely be returned home.17
A familiar pattern
According to studies, scholars, lawyers, and advocates, voluntary placement in the United States - like "voluntary" placement in Sweden - is often the first step toward the state getting a grasp on children. Here are just a few examples from within our own borders:
· A 1994 study in New Jersey found that "parents often report signing placement agreements under the threat that court action against them will be taken if they do not sign," particularly parents who have "language or other barriers making it difficult or impossible for them to read and understand the agreement they were signing."18 There are also no "clear legal standards to protect a family once it has entered the system," even if it enters voluntarily: "existing legislation grants judges and caseworkers virtually unrestricted dispositional authority."19
· In 1998, Melville D. Miller, President and General Counsel of Legal Services of New Jersey, warned that when parents sign voluntary placement agreements, parents give the state "custody of their children without any decision by the court that they have abused or neglected them."20 In addition, voluntary placement often waives a family's opportunity for free legal representation in court, leaving families - particularly poor families - with "no assistance in advocating for what they need" when disputes with the state arise.21
· In 1999, Dr. Frank J. Dyer, author and member of the American Board of Professional Psychology, warned that parents can be "intimidated into "voluntarily" signing placement agreements out of a fear that they will lose their children," and that in his professional counseling experience, birth parents frequently complain that "if they had known from the outset that the document that they were signing for temporary placement of their children into foster care gave the state such enormous power over them, they would have refused to sign and would have sought to resist the placement legally."22
· The Child Welfare League of America, in its 2004 Family's Guide to the Child Welfare System, reassures parents that the state "do[es] not have to pursue termination of parental rights," as long as the state feels that "there is a compelling reason why terminating parental rights would not be in the best interest of the child."23 If parents and social workers disagree about the fate of a child in "voluntary placement," the CWLA simply states that "if you decide to bring your child home, and the agency believes that this would interfere with your child's safety, it has the right to ask the court to intervene. You also have the right to explain to the court why your child's safety would not be in jeopardy if he came home."24
· The National Crittenton Foundation, in a web booklet published for young, expectant mothers who are currently in the foster care system, warns in large, bold print that by signing a voluntary placement agreement, "you will most likely lose all custody of your baby, even if you want to regain custody of your baby after you turn 18."25
Never Too Late
If one can learn anything from the stories of the Lewises, Katianne, and the plight of Swedish parents, it is that the government wields incredible power over parents who have "voluntarily" accepted its aid when caring for their children. These parents are often poor, struggling, and searching for the means to keep their families together, but instead of helping them, the open hand of the state can easily become a clenched fist, either bullying parents into submission or forcibly taking their children from them.
Thankfully, it is not too late to protect children and their families by protecting the fundamental right of parents to raise their children, and to reject government programs that are unneeded or unwanted. The state should only interfere with the family for the most compelling reasons - not because loving parents were misled about the true nature of "voluntary" care.
Please consider sending this message to your friends and urging them to sign the Petition to Protect Parental Rights.
This article was written for ParentalRights.org by Peter Kamakawiwoole, Jan. 29, 2009.
The article with links is here
Giving the State a Grasp on Your Kids
Part II of an in-depth look at Article 18 of the UN Convention on the Rights of the Child
When Kevin and Peggy Lewis volunteered their child for special education services, they never dreamed they would need a lawyer if they wanted to change their minds.
After their son developed several learning issues, including an inability to focus in class and difficulty processing and understanding oral and written communication, the Lewis's turned to the Cohasset Middle School in Massachusetts for help.1 But after a year in the school's special education program, their son was not improving academically, and felt harassed by school officials who were closely monitoring and reporting on his behavior - everything from chewing gum in class to forgetting his pencil.2
Initially, the Lewis's requested that the school pay for private tutoring, but as their relationship with the administration continued to decline, the exasperated parents finally decided to withdraw their son from the school's program and to pay for private tutoring out of their own pockets.3
Apparently, that option wasn't good enough for the school.
In December 2007, Cohasset hauled Kevin and Peggy into court, claiming that the parents were interfering with their son's "constitutional right to a free and appropriate education."4
After a day-and-a-half of argument, the judge sided with the school in an unwritten opinion.5
"This is truly devastating to all parents who have children on an IEP," Peggy said, referring to the individual education plans for special education students. "What it means in fact when you sign an IEP for your child, you sign away your parental rights. . . . Now Cohasset has their grasp on my kid."6
"Help" for Parents
At first glance, it seems odd that a school would take parents to court to compel them to accept state services. After all, as observers of the case commented, schools usually objects when parents demand more aid for their children, not when the parents try to withdraw their child from the program.7
But according to the UN Convention on the Rights of the Child ,once parents have asked the state for assistance in raising their children, the state has both the responsibility and the authority to see the job through - even if the parents no longer support the state's solution.
In addition to imposing legally-enforceable "responsibilities" on parents, Article 18 of the Convention also requires states to "render appropriate assistance to parents and legal guardians in the performance of their child-rearing responsibilities," and to establish "institutions, facilities and services for the care of children."8
At first glance, the offer of "assistance" to parents may appear harmless, and even generous, but appearances are often deceiving. While the government may claim to offer services to parents on a purely "voluntary" basis, parents soon discover that government "assistance" isn't always free.
When "voluntary" doesn't mean "voluntary"
For examples of this dangerous trend, one need look no further than the nation of Sweden, the first western nation to ratify the Convention.
In addition to mandatory sex-education, free child care for working parents, and a national ban on corporal punishment, Sweden's local municipalities are also required by law to offer parents a broad array of "voluntary" services that promote "the favourable development of children and young persons."9 Unfortunately, according to Swedish attorney and activist Ruby Harrold-Claesson, voluntary care "in no way is voluntary since the social workers threaten the parents to either give up their child voluntarily or the child will be taken into compulsory care."10
If the state determines at a later date that the "voluntary" services are not helping, the municipality has both the responsibility and the authority to physically "take a child into care and place him in a foster home, a children's home or another suitable institution."11 According to Harrold-Claesson, since the emergence of such programs, "children are being taken from their parents on a more routine basis."12
Unfortunately, these disturbing trends are not confined to Sweden. Even here in the United States, "voluntary" services for parents are often the first step toward state control of families.
Holding Children Hostage
As a young mother of three, "Katianne H." faced tremendous difficulties in making ends meet.13 Although she was never unemployed, Katianne had difficulty putting her job ahead of the needs of her young family. So when her three-month-old son Xavier developed severe allergies to milk and soy protein, her pediatrician recommended that she relieve some of the pressure placed upon her by requesting that her son be placed in "temporary out-of-home care."14 Thinking such a placement was truly "voluntary," Katianne agreed.
Within a few months, Xavier was weaned from the feeding tube to a bottle, but when Katianne sought to bring him home, the state refused.
It would take more than two-and-a-half years - and a decision from the Nebraska Supreme Court - before Katianne would win her baby boy back.15
In a unanimous ruling, the court said the child should have been returned to his mother as soon as his medical condition was resolved. Instead, state authorities drew up a detailed plan requiring the mother to maintain steady employment, attend therapy and parenting classes, pay her bills on time, keep her house clean, improve her time management, and be cooperative with social workers. When she failed to fully comply with all these obligations within fifteen months, her parental rights were terminated.16
The Court condemned the state for keeping Xavier "out of the home once the reasons for his removal had been resolved," and warned that a child should never be "held hostage to compel a parent's compliance with a case plan" when the child could safely be returned home.17
A familiar pattern
According to studies, scholars, lawyers, and advocates, voluntary placement in the United States - like "voluntary" placement in Sweden - is often the first step toward the state getting a grasp on children. Here are just a few examples from within our own borders:
· A 1994 study in New Jersey found that "parents often report signing placement agreements under the threat that court action against them will be taken if they do not sign," particularly parents who have "language or other barriers making it difficult or impossible for them to read and understand the agreement they were signing."18 There are also no "clear legal standards to protect a family once it has entered the system," even if it enters voluntarily: "existing legislation grants judges and caseworkers virtually unrestricted dispositional authority."19
· In 1998, Melville D. Miller, President and General Counsel of Legal Services of New Jersey, warned that when parents sign voluntary placement agreements, parents give the state "custody of their children without any decision by the court that they have abused or neglected them."20 In addition, voluntary placement often waives a family's opportunity for free legal representation in court, leaving families - particularly poor families - with "no assistance in advocating for what they need" when disputes with the state arise.21
· In 1999, Dr. Frank J. Dyer, author and member of the American Board of Professional Psychology, warned that parents can be "intimidated into "voluntarily" signing placement agreements out of a fear that they will lose their children," and that in his professional counseling experience, birth parents frequently complain that "if they had known from the outset that the document that they were signing for temporary placement of their children into foster care gave the state such enormous power over them, they would have refused to sign and would have sought to resist the placement legally."22
· The Child Welfare League of America, in its 2004 Family's Guide to the Child Welfare System, reassures parents that the state "do[es] not have to pursue termination of parental rights," as long as the state feels that "there is a compelling reason why terminating parental rights would not be in the best interest of the child."23 If parents and social workers disagree about the fate of a child in "voluntary placement," the CWLA simply states that "if you decide to bring your child home, and the agency believes that this would interfere with your child's safety, it has the right to ask the court to intervene. You also have the right to explain to the court why your child's safety would not be in jeopardy if he came home."24
· The National Crittenton Foundation, in a web booklet published for young, expectant mothers who are currently in the foster care system, warns in large, bold print that by signing a voluntary placement agreement, "you will most likely lose all custody of your baby, even if you want to regain custody of your baby after you turn 18."25
Never Too Late
If one can learn anything from the stories of the Lewises, Katianne, and the plight of Swedish parents, it is that the government wields incredible power over parents who have "voluntarily" accepted its aid when caring for their children. These parents are often poor, struggling, and searching for the means to keep their families together, but instead of helping them, the open hand of the state can easily become a clenched fist, either bullying parents into submission or forcibly taking their children from them.
Thankfully, it is not too late to protect children and their families by protecting the fundamental right of parents to raise their children, and to reject government programs that are unneeded or unwanted. The state should only interfere with the family for the most compelling reasons - not because loving parents were misled about the true nature of "voluntary" care.
Please consider sending this message to your friends and urging them to sign the Petition to Protect Parental Rights.
This article was written for ParentalRights.org by Peter Kamakawiwoole, Jan. 29, 2009.
The article with links is here
Tuesday, February 10, 2009
Your Aspergers Neighbor's Guide to Social Graces
This is a copy of my response to an email I received from someone who sought advice on dealing with his new neighbor who is an adult with Aspergers syndrome because this new neighbor is showing up at his door and talking about the same stuff way too often...
"I totally understand what you are starting to experience. I have an adult autistic friend who says the SAME things to me over and over again, and every time I see him. Another one calls me about ten times a day, ahh!
This is very common behavior with Asperger's syndrome. For, these folks have a hard time socially. They have difficulty with social graces because they have a hard time catching on and understanding what the rest of us consider to be socially appropriate. They are often very literal in their understanding and often don't understand, perceive and empathize with others feelings and points of view. They can be or seem self-absorbed and be emotionally immature at times or often, and dependent also, especially when someone is kind to them. My opinion is that this new neighbor that keeps showing up at your door wants to be friends, friendly or neighborly with you. And, he doesn't realize he's becoming a pest. I've found that the best way to handle such an abundance of friendliness is polite honesty. For example, I told my phone friend I can only talk to him about once a week. So, I pick up the phone only about once a week. I also politely remind him that I have six kids, a messy house, etc to take care of. He takes it very well. As for my friend that repeats, I half tune him out, and say an occasional "Yeah", "Okay" and "Uh huh". And, when he kept flaking out when we made appointments at the barber for him, I finally said that if he doesn't show up next time, then he's not getting a haircut ever again--so he showed up next time. I haven't had an autistic friend show up at my door at all times of the day and night before, but we have had a neighbor boy show up about that often. We told him not to come over on Sundays, and we set a few rules that he needs to follow or he goes home.
Basically, your neighbor is socially and emotionally innocent, like a child. Just be patient, kind, honest and straight forward. He may very well not understand, get confused and get mixed messages if you don't tell him in plain terms when are good times to visit, including specific hours and days, how often, etc. But also keep it short. I think that a good idea to do the next time he shows up at your door, ask him what he wants, does he want to come in and visit, is he lonely, bored, want to be your friend, etc. Asking him what is up and what he wants every time he comes would be good. And, if he shows up more often than you tell him he can, at the wrong times, or when you don't feel like visiting, the first few times, tell him that he's coming over too often, at the wrong time, that you're busy or it's not a good time. He will probably comply with your request. However, if he still doesn't get it, I advise you to close the curtains and don't answer the door. Like the rest of us, autistic folks have different personalities and it's possible he may get hurt, offended, angry, etc. But if so, don't worry, he'll get over it. And, you'll know he'll be over it when he starts showing up again, heh heh... My repeating friend sometimes doesn't call me for months because he got upset at something usually trivial I said or done, then calls again when he's gotten over it--and wants my help again. I know of another autistic adult who gets so easily offended at stuff--usually minor again-- that he doesn't call his family for years at a time.
...Thank you for seeking help about this situation. I'm glad you wrote me, you obviously have a lot of care and concern about others, and asking for advice in dealing with your neighbor shows this. And, I also applaud you for taking steps to be polite to your neighbor while at the same time, protecting yourself so that you don't get emotionally drained...
Sincerely,
Robin Kirton
(Mom)
"I totally understand what you are starting to experience. I have an adult autistic friend who says the SAME things to me over and over again, and every time I see him. Another one calls me about ten times a day, ahh!
This is very common behavior with Asperger's syndrome. For, these folks have a hard time socially. They have difficulty with social graces because they have a hard time catching on and understanding what the rest of us consider to be socially appropriate. They are often very literal in their understanding and often don't understand, perceive and empathize with others feelings and points of view. They can be or seem self-absorbed and be emotionally immature at times or often, and dependent also, especially when someone is kind to them. My opinion is that this new neighbor that keeps showing up at your door wants to be friends, friendly or neighborly with you. And, he doesn't realize he's becoming a pest. I've found that the best way to handle such an abundance of friendliness is polite honesty. For example, I told my phone friend I can only talk to him about once a week. So, I pick up the phone only about once a week. I also politely remind him that I have six kids, a messy house, etc to take care of. He takes it very well. As for my friend that repeats, I half tune him out, and say an occasional "Yeah", "Okay" and "Uh huh". And, when he kept flaking out when we made appointments at the barber for him, I finally said that if he doesn't show up next time, then he's not getting a haircut ever again--so he showed up next time. I haven't had an autistic friend show up at my door at all times of the day and night before, but we have had a neighbor boy show up about that often. We told him not to come over on Sundays, and we set a few rules that he needs to follow or he goes home.
Basically, your neighbor is socially and emotionally innocent, like a child. Just be patient, kind, honest and straight forward. He may very well not understand, get confused and get mixed messages if you don't tell him in plain terms when are good times to visit, including specific hours and days, how often, etc. But also keep it short. I think that a good idea to do the next time he shows up at your door, ask him what he wants, does he want to come in and visit, is he lonely, bored, want to be your friend, etc. Asking him what is up and what he wants every time he comes would be good. And, if he shows up more often than you tell him he can, at the wrong times, or when you don't feel like visiting, the first few times, tell him that he's coming over too often, at the wrong time, that you're busy or it's not a good time. He will probably comply with your request. However, if he still doesn't get it, I advise you to close the curtains and don't answer the door. Like the rest of us, autistic folks have different personalities and it's possible he may get hurt, offended, angry, etc. But if so, don't worry, he'll get over it. And, you'll know he'll be over it when he starts showing up again, heh heh... My repeating friend sometimes doesn't call me for months because he got upset at something usually trivial I said or done, then calls again when he's gotten over it--and wants my help again. I know of another autistic adult who gets so easily offended at stuff--usually minor again-- that he doesn't call his family for years at a time.
...Thank you for seeking help about this situation. I'm glad you wrote me, you obviously have a lot of care and concern about others, and asking for advice in dealing with your neighbor shows this. And, I also applaud you for taking steps to be polite to your neighbor while at the same time, protecting yourself so that you don't get emotionally drained...
Sincerely,
Robin Kirton
(Mom)
Saturday, February 7, 2009
Be an Autism Advocate
Making calls and emails are good starts. Do a search on the web page of your closest major newspaper and see what kind of Autism stories they've done. If they haven't done anything in the last six months... call them.
How we got started: We found out all 6 were Autistic in fall of 2006. While watching "Extreme Home Makeover" in Feb 2007 they said the family had the most documented Autistic children in one family... five. Robin and I looked at each other, "Guess we have the most". I emailed the local ABC station the next morning that we have 6 ASD kids and got an email from a reporter back right away. They were doing a story that night and wanted some footage on our family. We were on the news that night.
A month or so later I called our two major newspapers. One was more excited then the other to do our story. An interview and photos later and we were on the front page of the Sunday paper. (Check it out and add a comment to their website, that can insure that it stays available) That was June 2007.
Because of that newspaper article we were contacted by Readers Digest, People Magazine and Figure 8 Films (fro Discovery Health). People came in July for the interview, the photographer came in December. (long story). The film crew first came in Dec 2007 for the next 6 months. Each visit was 2-4 days.
The People magazine article came out in Feb 2008 and the interviews with Good Morning America, Inside Edition and Larry King soon followed. We had also been contacted by the Helen DeGeneres show and Oprah. Nothing has come of those as of yet. "Home Makeover" did contact us and wanted us to apply, but you need to own your home or have property they can build on. We rent and have no land.
Between the beginning and now I've made calls (lots) and emails to many politicians and various groups and individuals (the rich and famous). You wouldn't believe how many people who SAY they support Autism have never responded. I even sent Jenny McCarthy one of our t-shirts and never heard back.
Yes, the hours are long and there are many disappointments in trying to increase Autism awareness. But, as I tell many people, Autism IS my life. I figure it's my job and "calling" in life to do all I can. I've felt dumb standing around an event where I know nobody and try to start conversations. Then try to bring the conversation around to Autism. I've actually created a Autism business card for myself and Robin.
But, to do nothing... I feel is just not acceptable. Do something, anything... it will make a difference. If every parent will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.
Dad
How we got started: We found out all 6 were Autistic in fall of 2006. While watching "Extreme Home Makeover" in Feb 2007 they said the family had the most documented Autistic children in one family... five. Robin and I looked at each other, "Guess we have the most". I emailed the local ABC station the next morning that we have 6 ASD kids and got an email from a reporter back right away. They were doing a story that night and wanted some footage on our family. We were on the news that night.
A month or so later I called our two major newspapers. One was more excited then the other to do our story. An interview and photos later and we were on the front page of the Sunday paper. (Check it out and add a comment to their website, that can insure that it stays available) That was June 2007.
Because of that newspaper article we were contacted by Readers Digest, People Magazine and Figure 8 Films (fro Discovery Health). People came in July for the interview, the photographer came in December. (long story). The film crew first came in Dec 2007 for the next 6 months. Each visit was 2-4 days.
The People magazine article came out in Feb 2008 and the interviews with Good Morning America, Inside Edition and Larry King soon followed. We had also been contacted by the Helen DeGeneres show and Oprah. Nothing has come of those as of yet. "Home Makeover" did contact us and wanted us to apply, but you need to own your home or have property they can build on. We rent and have no land.
Between the beginning and now I've made calls (lots) and emails to many politicians and various groups and individuals (the rich and famous). You wouldn't believe how many people who SAY they support Autism have never responded. I even sent Jenny McCarthy one of our t-shirts and never heard back.
Yes, the hours are long and there are many disappointments in trying to increase Autism awareness. But, as I tell many people, Autism IS my life. I figure it's my job and "calling" in life to do all I can. I've felt dumb standing around an event where I know nobody and try to start conversations. Then try to bring the conversation around to Autism. I've actually created a Autism business card for myself and Robin.
But, to do nothing... I feel is just not acceptable. Do something, anything... it will make a difference. If every parent will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.
Dad
Tuesday, February 3, 2009
Help Me Get a Meeting with President Obama
President Obama ran on a campaign of change. Recently I did a lot of soul searching as to what I need to do to help the Autism community this year. What came to me is that I need to bring some MAJOR recognition to Autism. To do that I felt a meeting with our new President between now and Autism awareness month (April) is needed.
We need changes to the direction of the funding Autism is currently receiving. What I'm hoping that you can help me with is this:
1) Sent me all the stats you have, local especially and nationally too is fine. I need major talking points. I will be posting to our blog to kick this off.
2) If you known someone who knows someone who knows someone, that can get me an appointment... help.
3) If YOU could talk to the President about Autism what would you say?
4) Anything else you think this meeting needs to be or how to make it happen.
Thanks,
Dad
We need changes to the direction of the funding Autism is currently receiving. What I'm hoping that you can help me with is this:
1) Sent me all the stats you have, local especially and nationally too is fine. I need major talking points. I will be posting to our blog to kick this off.
2) If you known someone who knows someone who knows someone, that can get me an appointment... help.
3) If YOU could talk to the President about Autism what would you say?
4) Anything else you think this meeting needs to be or how to make it happen.
Thanks,
Dad
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