JGF And GND Universal Caretakers Network.

Blog

www.carersfordisablepeople.webs.com

view:  full / summary

Thoughts of A Dad and His Re-Union With His Son

Posted by Simon Lee Briggs on October 26, 2013 at 4:10 PM Comments comments (0)

A SENTIMENTAL REUNION, HOLD THE PEANUTE PAVE.

So I haven’t seen my oldest son Adam in nearly six years, for a variety of reasons – but mostly because I have lived in Thailand for the past five years teaching English. Now that I’m back in Provo, he and I planned to get together for lunch. He would buy. Teaching English on a modest salary for the past several years, I can state with certainty that two of the sweetest words in the English language are “my treat.” As an aging tightwad I just don’t hear that phrase often enough!

 

Since he was ponying up the dough, I graciously allowed him to choose the spot. He wanted to try out a new place up in South Jordan, called Tushar.

Indian food, right? Nope, he said, it’s Brazilian.

 

Brazilian?

 

Now, I’ve noshed at delicatessens, stampeded through steak houses, fumbled with chopsticks at Chinese buffets, dunked chips in flaming salsa at Tex Mex joints, gorged on green papaya salad in Thailand, and even tried to dissect part of a goat at an Ethiopian restaurant, but, world-traveler and bon vivant that I am, I have never had a Brazilian meal. Would the waitresses be dressed like Carmen Miranda? Could I endure the inevitable Villa-Lobos melodies in the background? In my mind I saw the walls festooned with ghastly amateur paintings of Sugar Loaf Mountain. This did not sound promising.

 

The drive up to South Jordan was punctuated with the sort of uneasy stop-and-start conversations one has with people not seen in a while. My son nearly wrecked the car while trying to show me pictures of the grandkids from his wallet; I nearly put him to sleep with my long accounts of Thai pedagogical theory. And the weather was not helping things any. What’s with all this icy rain? I thought I had moved back to desert country; if I wanted monsoons I would’ve stayed in Thailand.

 

So when we reached Glover Plaza on the South Jordan Parkway and turned in to Tushar I was not in a good mood. I was prepared to dislike everything that was set before me. But since I wasn’t paying for any of it, I ordered A LOT.

 

First came the Pao de Queijo, or cheese buns. You know those greasy fried mozzarella sticks some places have? Well, these little cheese buns were a hundred times better. Light and crispy on the outside and chewy on the inside without turning into stringy stuff like Elmer’s Glue. Next came the coxinha and risolis (and, no, I don’t know how to speak Portuguese – I stuffed the menu in my pocket when the waitress wasn’t looking.) Loaded with chicken and with cheese, these fried dough items were not as stellar as the cheese buns, but I saw them being made by hand in the back of the kitchen – and anything made by hand in today’s world deserves a pat on the back. I had to fight Adam for the last one.

 

The grilled cheese on a skewer reminded me very much of the toasted cheese I could never get to come out right when I made it at home – except theirs came out just right – not too hot, not too cold, but warm and pliant like Ingrid Bergman in that recurrent daydream I have . . .

 

I was starting to warm up to this place. No Carmen Miranda imitations, and the décor is low-key and tasteful. The menu said they had Brazilian soda pop, so I told Adam to get me some. It’s called Guarana Antarctica, and it tastes like Dr. Brown’s Celery Tonic. It would go good with a pastrami sandwich. Then I had him order me the house drink – the Tushar. It’s a fruit smoothie combining cashew fruit with mango. As Nero Wolfe would say when his factotum Archie delivered the goods, “Satisfactory.”

 

You know how some people start looking at their watches when they think they’re out of time? Well, my son started looking inside his wallet as I ordered a small steak. Just four ounces, with onions. That’s the first steak I ever ate without adding any salt or steak sauce. It came with a side of fried bananas, which were to die for. They had a touch of cinnamon to them; just a soupcon, as I told my son, who by now was biting his nails down to the hyponychium. Silly boy, was he still worried I was going to act the curmudgeon? Not with good eats like these, I wasn’t!

 

It was still early in the afternoon, and since Adam had not indicated any hurry to go back to his office, I bade the waitress bring on some glazed pork on a skewer. It came with a side of soupy black beans. I like my beans soupy, don’t you? Makes a nice dip. And there was bacon in the beans, too.

 

Finishing the skewer, I patted my stomach contentedly. This was turning out to be a very happy reunion. I had discovered Brazilian comfort food. Adam seemed relieved. He got up from the table and began to mouth some platitudes about how good it was to see me again. I told him firmly to sit down so we could order dessert.

 

We had peanut pave and flan. You all know what flan is. They give you a mighty big serving of it at Tushar. I could barely finish it. For some strange reason Adam claimed not to be able to eat anything else, and kept mumbling something about an old fart with a hollow leg. I told him to speak up, but instead he sunk into a sullen silence. Peanut pave is a sort of peanut butter pudding, but on a celestial level. I convinced Adam to try some of it before I engulfed the rest – it brought a wan smile to his peaked face.

 

Yes, indeed, a reunion with a family member is a truly filling experience, er, I mean fulfilling experience. I suppose if I give the address of the place it’ll get so crowded that Adam will use that as an excuse to never take me there again. A father and son should dine together often, especially when the son foots the bill. I suppose next time he’ll take me to the Holiday station for a hotdog, the little fink.

 

Author biography: Tim Torkildson is a former ESL teacher in Thailand, who now lives in Provo, Utah, to be nearer his children. He writes web content for sites such as http://www.scripturepoetry.com/

 

 

 

This piece appears on this BlogSpot courtesy of the guest author, Tim Torkildson, with his permission.
http://ldesherl.blogspot.co.uk/2013/10/thoughts-of-dad-and-his-re-union-with.html?spref=fb

What Is The #1 Killer Of Women? Not What You Might Think!

Posted by Simon Lee Briggs on October 26, 2013 at 4:00 PM Comments comments (0)

Breast cancer. This word inspires much fear in most of us and so there is more awareness of this cancer than just about any other cancer, and breast cancer causes, events, literature, and resources are very popular and high-profile. Indeed, over the years, a tremendous amount of time and money have been poured breast cancer awareness; many women (and a handful of men, as men can get breast cancer too) have come forward with survival stories and have deservedly heralded for theiir courage and strength. I know that lots of time and money are also poured into other cancers but I don't see that happening to near the degree that I see it with breast cancer. When any cause is personal to us, we are natually more passionate about it than any other cause because we can relate to it. And so when people survive a known killer or lose others to it, it naturally moves them to advocacy and action. I have seen more causes and posts, especially on Facebook, on breast cancer than on any other cancer. I have recently gone to a Wal Mart and I have even seen a Breast Cancer Awareness Bible in the Inspirational Books section! And that is the first Bible of this kind that I have ever seen. There is even a click-to-give site devoted to breast cancer alone. many businesses will sponsor fund-raising campaigns, not to mention numerous nonprofits. And we all know about the famous "Susan G. Koman Race for the Cure" and the Susan G. Koman Foundation. Even Christian bookstores have become aware of this form of cancer, as shown by a few books, such as one titled, "When God and Breast Cancer Meet."

 

Believe me, if breast cancer were the only killer of women, I would not begrudge it all the resources, time and tireless advocacy efforts that have and continue to be poured into it. But sadly, breast cancer is, by far, not the biggest killer of women! When I write this, I know that, when you experience a trauma or an illness, no matter what it is and how much awareness it ends up getting, it is never enough.

 

What is this #1 killer of all women, especially of women past menopause? It is heart disease! Yes, it's true and at the end of this blog I will provide sources where you can verify this grim and unsettling fact for yourself. Now, we are all well aware of heart disease in men because, traditionally, doctors and other health experts have always taken heart disease in men seriously. Men have been taught to fear heart disease and cancer. I have heard it suggested that a reason that women have been led to fear breast cancer much more than heart disease is not only because it is life-threatening, but because of the cultural idea that the breast is the symbol of female physical beauty and so when that is threatened or gone, many women are devastated. And the fear is not only loss of physical beauty but also the fear of losing attactiveness to spouses or partners as represented by the loss of the perceived symbol of this beauty. A threat of the loss of physical beauty is seen as somehow, in my opinion, as more immediate and more real than the loss of life itself. Also, we typically fear the treatments for breast cancer or other cancers, such as chemotherapy or radiation. Heart disease in women does not seem as threatening because no threat to female beauty is seen as associated with it. Heart disease just seems more mundane, no doubt because, in the free world, it is so commonplace as a cause of death. I have seen far fewer resources and much less awareness about heart disease in women than I have seen about breast cancer. By far! There are very few fundraising efforts about it, few businesses sponsoring any such and few causes devoted just to women's heart health. This is so unfortunate, for no doubt it is undiagnosed heart disease that kills more women than any of us know of. I'm not aware of how much training docors receive in medical school or during their residencies, concerning how to prevent, diagnose and treat heart disease in women (Remember, the female body is not the same as the male body and doesn't this also apply to the female heart?). And so doctors tend not to take symptoms of heart disease in women as seriously or dismiss any female concerns as being "stress," "nerves, or even "PMS"! I think part of all this is because womenhood, itself (pregnancy, menstruation, premenstrual syndrome, menopause) as almost become a disease itself and has been medicalized.

 

Health experts tell us that when women get heart attacks, symptoms might show themselves differently from those seen in men. And they also tell us that women are more likely to die of heart attacks than men are. So it seems to me that all women and those who care about them, need to be every bit as concerned, maybe more so, about heart disease than about cancer. However, a few years ago, I did see an Oprah Winfey talk show about women's heart health and so I give her credit for awareness, as one of the few high-profile people who have addressed this issue. Many more resources and much more advocacy and awareness need to go into women's heart health, diagnosis, treatment, and especially prevention. The government have done precious little in this area, including legislation or funding concerning women's heart health awareness, no doubt because because of the lack of of advocacy and awareness of citizens, including women. And health experts tell us that older women, at menopause, are every bit as vulnerable to getting heart disease as are men. During the childbearing years, we women have estrogen, a female hormone, to give us some protection against heart disease. At menopause, we lose this estrogen, a source of heart disease protection and so the heart disease risk climbs.

 

I think that we all know that prevention is the key, as it is in most things, in fighting heart disease in both genders. And the methods of prevention for women as pretty much the same as for men: Eat a well-balanced, sensible diet that is low in fat, especially saturated and trans fats, exercise regularly, avoid smoking, control weight, cholesterol levels and blood pressure, try to keep stress at manageable levels, and more. So I won't go into any more prevention talk here, because so much has been said already. But far more needs to be done about the diagnosis and treatment of heart disease in women. If we women would fear undiagnosed heart disease and its likely consequence, death or serious disability, as much as we would breast cancer or other cancers, we may be more motivated to action to beat this #1 killer of women as well as men.Research tells us that young people of both genders need to be concerned about heart disease and things related to it, such as diabetes and stroke. These are striking people at younger and younger ages, just as cancer is. Yes, older people need to be more concerned about things like cancer and heart disease than the young, but younger people should not be complacent and should live "heart-healthy" lives.

 

In my family, heart disease, much more than cancer, has been the biggest killer. The women in my family, like no doubt so many other women, have never been diagnosed with heart diease though such a diagnosis and proper treatment may have saved many lives. I wonder how many more of us, like me, have a family history of heart disease rather than a family history of cancer. And a family history of heart disease should concern women every bit as much as men and we women should work as hard, as men, to reduce the risk factors for heart disease and heart attacks, that we do have control over. Through the media and literature, I have heard much earlier and much more frequently about breast cancer and the need for its prevention through doing breast self-exams and getting mammograms, than I have heard about heart disease in women and its prevention. This needs to change so undiagnosed heart disease will stop killing women.

 

February is "Go Red For Women" month, for the purpose of heart disease awareness as it pertains to women. Yes, cancer, especially breast cancer, as words, seem to strike more fear in the hearts and minds of women than the word heart disease does. And it is with good cause that we women fear cancer. It is scary. Heart disease tends to be seen as almost mundane by comparison. If there is a family history of it, as there is in my family on both sides, it may not motivate many of us to take steps to prevent it as much as a family history of cancer would. To illustrate, there are women who, aware of their breast cancer risks, have elected to get double mastectomies and I can understand and sympathize with the drive to take every precaution to avoid something that you are at high risk of experiencing if you do not take preventable steps to do something about it! We have no control over any family history of heart disease, but we have control over and can take action concerning our lifestyles, including eating right, exercising, and avoiding unhealthy substances and having regular doctor check-ups. If we would educate ourselves about heart disease in women (heart disease in men has far more awareness), and try to bring awareness to others, heart disease many not claim so many lives and shorten them. I'm glad that, at least in my local school district, schools make it a point to involve students in heart disease awareness through fundraisers. We need much more community efforts like this in every community and save many lives!

 

Because of this insufficient awareness and lack of resources, there seem to be not many websites devoted exclusively to women's heart health, the rest of the resources being more a part of general sites. I hope that this one website will get many more views, as well as many shares. This is another part of lifesaving work.

 

Women and Heart Disease Website

http://womenheart.org/

 

Comprehensive fact sheet page that answers many women's heart health questions

http://www.womenshealth.gov/publications/our-publications/fact-sheet/heart-disease.cfm

 

Face sheet page with many links to resources

http://www.nlm.nih.gov/medlineplus/heartdiseaseinwomen.html
http://networkedblogs.com/QoMKI

April is Also Autism Awareness Month

Posted by Simon Lee Briggs on October 26, 2013 at 4:00 PM Comments comments (0)

Answers. Resolution. Closure. Validation. Vindication. Justice. We all yearn for these things to be real in our lives. It hurts terribly when these things elude us. A resolved past empowers us to deal with the present with confidence; it motivates us to deal with the difficult, sad, bad and even tragic things that may befall us. The agony of being without resolution is fighting shadows and unseen enemies that we are aware of and experience but that remain a puzzling mystery. Life is full of pain but when this pain does not result in resolution and mysperies continue, the agony intensifies.

For example, in the years I've spent socially networking with families with missing loved ones, the basis of their nightmares lies not in losing a loved one but in not knowing where that loved one is or what has happened to that loved one. It's the gnawing pain of wondering, wondering, wondering. You don't know, for certain, that your loved one is alive though you desperately hope that is true. You wonder, if they are alive, if they are suffering, are being starved, tortured or enslaved. If your loved one's disappearance is an unexplained one, you wonder how it happened and who is responsible. And if you have an idea what happened but can't confirm it, the craving for justice won't go away. I make no pretense of claiming to identify with this nightmare nor would I wish it to happen to any one. I write these things out of observation of those living this reality and out of empathy.

However, I know very well the agony of having no answers or resolution to an unexplained past that continues, to this day, to haunt my present but in an entirely different way from families with missing loved ones. I'm talking about the anguish of living with an undiagnosed condition that alters the way I think, see and relate to the world, others and myself and the way the world sees me. I grew up thinking differently, acting differently and and learning differently. Adults, frustrated with me and seeing me merely as a "problem child" in need of a "good whipping," often reacted unkindly to me. When I was a young child, one babysitter would lock me in closets and put soap in my mouth. When my mom took me to kindergarten, at the end of the day the teacher said to her, "You have the worst-behaved child I have ever seen." My mother's ex-husband would spank me and tell her, "What an animal you have raised." Adults would tell me things like, "You're spoiled rotten," "You're bad," "You're lazy," "You are selfish and self-centered," "You don't want to learn," "You won't amount to anything." My peers often bullied me, calling me names and taunting me. One year, their bullying got so vicious and relentless that I was removed from the school in question. As I was for much of my childhood, I was once again placed in special classes and other settings where the curriculum was always watered-down and I remained there for the rest of my school years. I felt deprived of both an education and a childhood and entered adulthood with a shame-based identity and no vision for the future and spells of depression.

In the course of time, my beautiful, precious daughter was born. As a baby and toddler, she showed the same distance in human relationships and some of my other behaviors. She was offically diagnosed with a sub-type of autism. It was not until then that we knew anything about autism spectrum disorders (ASDs). Prior to this, all our family knew about autism was media coverage of and my encounters with children or adults, without speech or other basic life skills, who had classic, severe autism. This type of autism has been recognized for years, if not understood. The autism spectrum has been around for not much longer than a decade and the American Psychiatric Association (APA), as I already blogged in an earlier post, are planning changes in the autism spectrum criteria that may hurt many in the autism community. From what I understand, those who already are offically diagnosed on the spectrum can keep their diagnoses; the ones who will most likely be affected by this new DSM-5 will be those seeking future autism screenings. My daughter, because of her diagnosis, is experiencing success that I doubt she would have experienced without it. She is high-functioning and is doing well in school and in her studies, especially in math (so unlike me, her mom). She is happy, loved, fun and has much love to give. As for me, it took several years before I figured out that I grew up with an undiagnosed ASD. I hate a mere self-diagnosis but it may be my only tool to get any closure for myself, as I have not been able to find someone to grant me an autism screening.

And so, as an adult, and not only offline and in-person but online, I continue to experience lots of misunderstandings in my relationships and failed relationships. People continue to react unkindly to me. All this would be easier to take and deal with if I had the benefit of an official diagnosis that could confirm my suspicians and empower me to move forward with peace of mind and confidence. Online, where I have been spending much time supporting other people's causes, I have experienced failed relationships and misunderstandings. I have gone through another such incident this very past week. All this screams for answers, resolution and closure.

April is commonly know as Child Abuse prevention Month. But did you also know that April is also Autism Awareness Month? For autism, wherever a person falls along the spectrum, is a neurological condition unlike most others. Diagnosed or undiagnosed, it affects the way that we see and relate to the world, ourselves and other people. Autism also affects the way people see us and relate to us. This is the daily reality that my daughter and I, and many others, live with on a daily basis. There are many conditions and diabilities that profoundly affect people emotionally and their circumstances but not in the way that autism and other neurological conditions do. Just recently, a former Facebook friend cut all ties with me, citing my "passive-aggressive ways," my "insistence on my own way in all things" and that "my personality quirks" "turn everyone off."

If you have few ties to autism, whether through having a loved one on the spectrum, being on the spectrum yourself or through working in the field of autism, you may not see the need to worry about the threat to the autism spectrum diagnosis or why I'm making a big deal of the need for a proper diagnosis for this condition. This matter troubles many of us in the autism community because this can take us back to the days when a lack of a diagnosis meant inappropriate interventions or no support, understanding or services. It can take us back to the time when our differences were seen purely as moral and personality defects and we were ostracized and dismissed. This is unacceptable. And society does not benefit from this either. Undiagnosed people are people with unmet needs. When deep needs are not met, people often tend to be filled with anger and frustration, even rage, and take this out on society. Such people may visit you and your family in forms you may not want. Striking out at a society that does not understand them or welcome them, they may commit heinous or violent cimes that result in missing people or school or workplace shootings. Aside from the moral obligation to care for these individuals, we should worry about this matter because it may fight crime. Even more, it will result in people being empowered to contribute to society and pay taxes.

 

http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5

This is the petition, started by Global Regional Asperger's Syndrome Partnership (GRASP) which is addressed to the American Psychiatric Association, appealing to them to preserve the current criteria for getting an autism spectrum diagnosis. I urge all of you to sign, even if to simply support autism awareness. Every signature counts!

Autism: What Is In A Word

Posted by Simon Lee Briggs on October 26, 2013 at 3:55 PM Comments comments (0)

Many years ago, children and adults who would have been diagnosed with "emotional disturbances," "mental illnesses," "mental retardation," "personality disorders," or some other unsavory label, or who were just written off as plain weird, are now being diagnosed with "Asperger's Syndrome," (ASD), "Pervasive Development Disorder-Not Otherwise Specified" (PDD-NOS), or "High-Functioning Autism" (HFA). This chance in diagnosis (dx) has meant the difference between success and failure for so many children, teens and young adults, who, like my own daughter, have been able, because of such an autism dx, able to succeed with supports that were unavailable to those of my own (and earlier generations) who often experienced failure and all the baggage that comes with it. A whole new generation have come to see their differences as a result of different wiring and that while they have very real challenges, that they also have very real potential. Where the earlier model of special education was one of focusing on deficits and defining students by their disabilities, the current model is one of teaching based on students' stengths and helping them to overcome their weaknesses without defining students by these weaknesses.

But currently, the American Psychiatric Association (APA) want to change that; for years they have been working on a new DSM-V that would revise the criteria for obtaining an autism dx. Only recently has the APA made their proposed changes public. Therefore, those in the autism community are now up in arms because many of us are very much concerned about the possible fallout of this revised DSM-V. Why does this matter so much to so many of us? many of you may wonder. What is the fuss all about? Let me tell you what is behind our deep concern.

The official autism spectrum dx of a high-functioning sub-type of autism matters because many children, teens and young adults who are dxed with a high-functioning autism sub-type, would likely lose funded services and supports as well as legal protections, especially those under the Americans with Disabilities Act (ADA). Many of those in the generation since after 1990, when the autism spectrum began to be used as an official dx, have experienced access to support services, opportunities, legal protections under the ADA and success. My daughter is among those in this generation, being on her school honor roll this past semester. And in addition, many children, teens and young adults whose supports, benefits and legal protects are based on their dx, would suffer substantial loss. Talk about sliding backwards in time! Future generations would, again, have to grow up as I did and as so many others have had to grow up, being misunderstood, bullied, shamed and belittled into believing their challenges are due to stupidity, badness, or being damaged and broken, rather than because of different wiring. Finally, the proposed revisions in the criteria for the autism dx would be a slap in the face of many of us adults who were "born too early" to grow up with an official dx or to even have a concept of it; because of the loss of the dx we would lose our explanation and answers about our often puzzling, painful pasts.

Now I'm aware that many people do not even believe in the concept of the autism spectrum, ASD, HFA or PDD-NOS. Some believe that that the autism epidemic is actually a dx epidemic or the latest fad in "pop psychology" that will die out and be forgotten. I know that many people, whose thinking runs along the lines of "pulling yourself up by your own bootstraps" or who are part of the "cowboy culture" may welcome the tightening in the eligibility to get an autism dx. "You are looking for an autism dx to hide behind to find excuses for the way you are," many adults who are fortunate enough to have access to an autism dx screening, may be told. "You are looking for an autism dx for your child so you can excuse your bad parenting," many parents who fight for an autism dx for their child, may often be told. And indeed, there are those successful adults on the spectrum who enjoy success and fulfillment in their personal lives and careers and for them, seeking a dx of autism may not be in their best interests because of the social stigma of the dx. But for my purposes for this blog, let me share my own story to show you that,m whether diagnosed or not, the challenges of ASD/HFA are real and can be painful or intense.

I grew up in the 1960's and the 1970's, well before the autism spectrum was conceived. From the beginning, it was clear that I was different. I behaved differently, moved differently and learned differently. I had tantrums, cried nonstop, fixated on certain objects, and didn't relate to people. And I began to have seizures; as a child, I was diagnosed with epilepsy. According to my records, I had "behaved so badly" that my mom, stressed-out, took me to a professional, who pinned on me the dx of "obsessive-compulsive neurosis" and "emotional disturbances" and I carried those labels, among others, for many years. None of such labels provided me any legal protections or support services beyond inappropriate psychiatric services and equally inappropriate special education placements. My childhood is a blur of memories of adults spanking me, slapping me, yelling at me, even at times putting soap in my mouth or locking me in closets to "teach" me to "stop being bad and spoiled." As a younger child, I was placed with "the real disabled children" and was told that I was among them only because I did not "act like other kids" and "we don't know what to do with you." Also, an official dx would have much reduced stress for my parents, especially my mom, who really loved me but who did not know how to help me become successful, happy or confident. In later childhood and especially in my teens, I suffered vicious bullying for being "different." My peers called me "crippled," "klutz," "retard," "ugly," "stupid," and things that are not fit to be printed. Also, I often suffered physicial bullying. Though adults were clueless about the nature of my challenges, my peers did not need an official dx to identify me as different and to respond to this knowledge by theire bullying. I found myself in and out of special education; after a year of vicious bullying, I found myself in special education for the remainder of my school career. Today, I carry the scars from these years and though my challenges are modified and controlled, they are still there; they affect how I relate to people and how they see me. None of this is a figment of my imagination. It is real. I owe my current self-understanding and hope for the future to my daughter and to her official autism dx, as it applies to my own life.

The American Psychiatric Association wants to revise the DSM-5 criteria for the autism diagnosis, admittedly, to cut costs. Fot to provide services, benefits and legal protects costs money; but no school district or government is going to want to spend anything on a child or adult without any official dx. Folks, even if you are not in the autism community because you aren't aware of people that you know who are autistic, think again. Most of you will likely know people, personally and/or professionally who are on the spectrum, whether dxed or not, but who will not disclose their dx to you. Why? Because of the social stigma of autism, they fear misunderstanding, rejection or discrimination. And this proposed revision in the DSM-5 would only make things worse. And then there are those of you who may wonder if your loved one is on the spectrum or want to obtain autism screening for him or her; a few of you may want such an autism screening for yourself because of your own pasts; do you want things to be made harder because of tightened criteria for autism? The dx of autism is stigmatizing, but not as stigmatizing as many other labels that were used in the past. This autism dx empowers many parents to effectively help their ASD/HFA children grow up to become effective, confident, responsible, successful people with many support services, legal protections and guidance. The autism dx empowers adults fortunate enough to obtain it, to to understand themselves and to deal with their challenges and to gain the motivation and incentive to better their lives and to reach out to other people who share the same dx. The APA's concern to cut costs is understandable; they have expressed regret for "unfortunate consequences" of their decisions and that much of our concerns are unfounded. But should $$$ come before the lives, happiness and well-being of people and their futures?

I will provide for you links to a few petitions where you can read the petition letters to the APA to educate yourselves about this if you need to and then to sign the petitions and to share them; I'll also provide links to autism resources.

No, autism is not just a word and in this case, talk is not cheap.

 

http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5

This petition has been put together by GRASP, an official nonprofit for teens and adults on the autism spectrum; please read the petition letter to the APA. Then sign this petition; you can increase your impact by adding your thoughts and feelings about autism and any experiences you have had with it. Then sign it and share it!

 

http://www.change.org/petitions/stop-the-change-in-definition-of-autism-for-those-on-the-spectrum

This is another petition that aims to collect 1,000,000 signatures. Please read the petition letter, sign the petition and feel free to increase your impact by sharing your own thoughts and feelings and, if applicable, your experience with autism.

 

http://www.grasp.org/ This is the official nonprofit for teens and adults on the spectrum of autism.

 

http://autismabout.com/od/whatisautism/tp/topten.htm

This is a comprehensive resource containing links that educate the public about all matters in the field of autism. It contains tabs leading to other pages.

Advocates and Self--Advocates

Posted by Simon Lee Briggs on October 26, 2013 at 3:55 PM Comments comments (0)

 

I'm sure that all of us are familiar with the term "advocate," which many people in my social network use as titles for themselves and which appears on their social networking profiles. A number even include this title in their screennames. But many of you reading this may not be as familiar with the term and title of "self-advocate." What is that? I have been aware of this term and title for many years and its is usually used in the general disability community. This term was coined because, by its very nature, have a disability (s) means that one will find oneself in situations where one will need to advocate for one's needs and seek accommodations and understanding for them in order to live in society and with one's family. So, an advocate is one who speaks on behalf of others who do not have a voice to speak up for themselves, and a self-advocate is one who has special needs or disabilities that may need accommodation or understanding and who needs to speak up in his or her own behalf, to make this happen. Self-advocacy as a concept or title did not exist decades ago, when many people with disabilities were insitutionalized or where many with special needs were segregated in special education classes and then sent to live at home with their families, or worse. Out of sight, out of mind. But the concept of self-advocacy has changed that.

 

Currently, many in the autism community are stirred up because of scheduled hearings this upcoming Thursday that are to focus on autism. I learned about thse pending hearings last Thursday, on Thanksgiving Day when I was scrolling on Facebook. Since then, I found the webpage for how people can find their US Representatives and contact them. Initially, no autistic persons were invited and there was much uproar over this. The disability community has a slogan, "Nothing About Us Without Us." This means that no one should be making any decisions for a self-advocate that does not take into consideration what the person thinks or wants. I have been spending much time sharing the link to the House of Representatives webpage that links to their websites and their information, including their contact information. I have been sharing with people the link to my Change.org petition and asking people to share with their Representatives this petition and its mission, to obtain funds for underserved low-income children and all adults with suspected or diagnosed Autism Spectrum Disorders (ASDs). I have granted that research has it role, in learning better ways to diagnose autism than we have at present, and to improve the quality of services. But I have been stressing that people ask their Representatives to examine my petition and its mission and to consider mentioning my petition and its mission at the hearing.

 

I do have fear about the outcome of these pending autism hearings this Thursday. I was delighted to learn from a Facebook post from a ASD self-advocacy group, that the CEO of that nonprofit in question, had been invited to the hearing. Also, the President of another ASD self-advocacy nonprofit also has been invited to the pending Thursday autism hearings. Since then, I have been scrambling to get the attention of the "big voices" in the autism community to examine my petition and to consider mentioning it at the hearings this upcoming Thursday. This unfortunately has not happened and my petition is unlikely to be mentioned at all by the "big voices" in the autism community who have been invited to the pending autism hearing. I know that other nonprofits, which favor research and "finding cures" for autism, are also being invited and have an equal right to their say at these pending hearings. My fear is that whatever happens this upcoming Thursday, at 2:00 PM, that the funds that are written in my petition letter may be allocated to things other than the badly needed services for those children of low-income families, and all adults with ASDs, that are not available now to these underserved persons. I fear that my petition's mission and goal may be hindered and that too many funds will go to research.

 

As far as my petition goes, yesterday several people in the autism community have taken it upon themselves to try to convince me what is wrong with my petition. One person has told me that it is "poorly written." When I challenged him to tell me what he meant by ths statement, he declared that my petition calls for people with "suspected ASDs" to have access to services and that this provision would open wide the door to many to "abuse the system." In vain, I sought to share with this person how the very process of seeking an ASD diagnosis is tedious, requiring much paperwork and "jumping through hoops" that should discourage most persons who would "abuse the system." I apparently wasted my time as others joined this person in ranting about scammers "abusing the system" and that "petitions are useless." I agreed that there is potential for abuse in making services available to those awaiting a diagnosis of ASD, just as there is with any good thing. I declared: "Every person with a diagnosed ASD at one time had a suspected ASD." All to no avail. At this time, I an unable to have any illusions that most peope in thi community appreciate, much less enthusiastically support, my efforts to try to obtain funds for the many underserved low-income children and all adults, with suspected or diagnosed ASDs. After this Thursday, I may be forced to re-think my entire petition and may need to make more painful revisions and do more research. As a Christian, I realize that whatever happens is in God's hands and that I have no control over the response of others whom I have been trying to appeal to.

 

This brings me to my point of why people with "suspected ASDs" even though there is a chance of abuse of such a provision, should be covered in services for those with ASDs. For if one has challenges in relating to other people and in thinking as they do but has no diagnosis to "label" these challenges, how can he or she speak up effectively? How can one with a condition that is there but is not confirmed with an official diagnosis, have the confidence to tell people what he or she needs if there is no system by which to identify it? In the free world, we live in cultures where documentation is respected and which bolsters credibility. And as I pointed out to the people in the autism group who were trying to discredit my petition, all of those who have an officially disagnosed ASD, at one point had a "suspected ASD." This obviously holds true of every person, whatever his or her age. So withholding services from those who "just have suspected ASDs" does not make sense. If those who are lucky enough to have a correct diagnosis were treated in this way when their conditions were "just suspected," they would never have been diagnosed. This has always been my problem and challenge. I cannot tell you of the countless times and situations where a correct diagnosis would have probably gotten me understanding and opportunties and accommodations! This holds true not only in my childhood but also in my adulthood, and in my family and my community. But so far, when questions have been asked of my family about me or to me, there was no good explanation for my challenges. "Oh that is just the way she is," has always been a typical "apology" for me. At times, I cannot help but feel a pang of jealousy for those in the autism community who have the validation and understanding of an official diagnosis.

 

I would like to make an appeal to those of you who are reading this. I realize that a number of you may already be familiar with what I am about to ask and forgive me for what will be to you a repeat appeal. I would like my readers who live in the US to contact your Representatives, if at all able and this is very urgent as the autism hearings are this upcoming Thursday at 2:00 PM. I appeal to you to share with your Representative the importance of these hearings and to consider attending. I'm asking you to share with your Representative my petition with the link http://tiny.cc/mrsahw, and ask your Representative to examine this petition and to consider mentioning the petition and its mission at the hearing. Your letter need not be long and should be respectful, concise and to the point. You can find your Representative here: http://www.house.gov/representatives/find. You letter can be composed much like this sample letter:

 

Dear-----------------------------,

 

I am a concerned citizen and (you can fill in about your situation in relation to autism or your desire to show your support). I have learned about the pending autism hearings this Thursday at 2:00 PM. I understand that among the topics to be discussed, what will be covered is where autism funds should be allocated. Research has its role and some funds should go for it. But my primary concern is that most funds be allocated to services for underserved persons. These include those with suspected or diagnosed ASDs who come from low income families who cannot pay for services, or who are adults. There is a Change.org petition at http://tiny.cc/mrsahw and I invite you to examine it and its mission and goal. I ask you that, if you are able to, to attend the autism House hearings this Thursday, and to mention this Change.org petition, its mission and its goal at the hearings. If you are unable to attend the hearings, please examine the petition and send it to other House Members who may be able to attend the hearings. Your service and support mean very much to me and to all persons with ASDs.

 

Thank you very much for your service to our country

Most Respectfully,

(Your Name)

 

 

You can search for your Representative by zip code. Like me, you may get more than one Representative and you will be asked to either search by using a map of your area or by supplying the last four digits of your zip code. I did not have the option of emailing my Representative but my letter to him had to be faxed. In that case, I do not know what to tell you. But most of you should be able to find the option to email your Representatives. If you truly do not have time or do not feel that you are able to compose a concise, to-the-point letter to your Representative, I hope that you will share this with others or show your support in other ways. This is a very urgent matter which can affect the futures of many people, including future generations.


http://networkedblogs.com/QoMKI

Existing Autism Funds That Are Not Being Used: Please Sign & Share The Petition

Posted by Simon Lee Briggs on October 26, 2013 at 3:50 PM Comments comments (0)

We all know that regularly updating your materials, whether you are talking about a website, a Facebook page, a talk show, a crime or a missing persons case, or anything you work on, is crucial and adds greatly to one's credibility. One cannot expect a loyal following if one does not work to keep these supporters "in the loop" about what one does. And so I have applied this not only to my Facebook materials but also to my Change.org petition for autism, to be more inclusive and to spell out to supporters, would-be supporters and to our government, exactly what I would like this petition to do and the sources of the funds which I am requesting. For, when I created it, I was aware that many people would, rightfully, be wondering, "Where are the funds going to come from? Do they even exist? And if so, how would such programs be implemented? And what about services for children and teens that are in danger of being cut in the name of "balancing the budget"? My hope is to go a long way toward answering these questions in this blog. I believe that you will be more motivated to support the petition.

First of all, where will all the funds I call for come from? They must come from somewhere. First of all, it has been brought to my attention that fund had been set aside for services for autism, and, to this day, this legislation for autism has not yet been fully funded. Let me provide some history, according to Wikipedia. On December 19, 2006, President George W. Bush signed into law the Combating Autism Act of 2006. This bill was meant to provide a package of research services and diagnostic services for children and to detect autism in toddlers, among other services. The funds for thse services were never appropriated, though. On September 30, 2011, President Obama added his signature to the Combating Autism Re-Authorization Act of 2011 (H. R. 2005). You can read the text for this, in pdf format, here: http://www.gpo.gov/fdsys/pkg/BILLS-112hr2005ih/pdf/BILLS-112hr2005ih.pdf. There were $231 million that were supposed to be appropriated for different autism efforts. However, even though the Combating Autism Act was re-authorized, to this day, it has not been fully funded, according to Politifact, a website full of "fact-checking" information about politicians and legislation (http://politifact.com/truth-o-meter/promises/obameter/promise/82/fully-fund-the-combating-autism-act-and-federal-au/. Therefore, my petition calls for these $231 million. already set aside for autism, to fully fund, and appropriate, the services that they were meant to fund in the first place. For this reason, my petition has become more inclusive and, because of the unfunded autism legislation, my petition calls for the protection of those services that are meant to serve autistic people age 21 and under, also. This makes my petition more inclusive and should attract support from many people, including those who young children who are diagnosed with autism and are NOT thinking in terms of them becoming adults. It should also attract more support from many outside the autism community, who still think only of children when they hear the word "autism." For this reason, I have slightly tweaked my petition title from "1,000,000 People for Better lives For Adults With Autism" to "1,000,000 People For Better Lives For All Persons With Autism." This gives all of you who are reading this, even if you have signed this petition (and I thank you for that!) all the more reason and "ammo" to freely circulate this petition, whether by email, Facebook, Twitter, online chat, other social networks and yes, word-of-mouth, through my shortened URL: http://tiny.cc/mrsahw.

The mission of my mission has not changed one bit and I still call for all those services for adults with autism, 21 and over, who have little or no access to these services. These services simply do not exist or, if they do, they are typically available through private nonprofits and are unaffordable to most adults. Yes, I'm sure there are exceptions. In my petition, I call for funds to be offered to EXISTING services for those with developmental disabilities who serve those with autism. Typically, such services are directed to children, teens and maybe young adults, to age 21. Sadly, it is like there is no life for any adult with autism who passes the age of 21. Want a diagnosis, if only to find answers about your unusual past? Too bad, because, unless you are fortunate to live in an area where a qualified professional diagnoses adults or have the time and money to go to such a professional, you are basically doomed. You will not know the relief of a diagnosis, a community and possible services. This sad fact also extends to poor and many minority people, children AND adults and I hope that the exclusion of many less-fortunate children can be addressed through the funding of the Combating Autism Re-Authorization Act of 2011. And where would the funds for all the services that I outline would come? Good question! According to an article on the website for the nonprofit, Autism Speaks, there are cuts that are scheduled in January of 2013, and these cuts include services for autism. And, according to the last paragraph of this recent article, $238 million were set aside for autism initiatives. It is unclear what these autism projects were meant to do, and they expired in September 30, 2012, probably because of the Election. In this petition, I call for the re-newal of these expired funds and then I call for these same $238 million to be re-allocated to the services and programs for adults with autism that have been calling from the creation of my petition (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). The point of the article was deep concern about upcoming cuts, but I discovered that there are $238 million that, taken together with the $231 million called for in the Combating Autism Re-Authorization Act, means that $469 million do ALREADY EXIST for autism! My petition calls for these existing funds to be re-newed, appropriated and then re-allocated to include the services for adults with autism which I have called for from the beginning.

Yes, I know that, as I write this, our Election in the USA is little over two weeks away. We do not know, at this point, who will occupy the White House for the next four years and we do not know what the new Congress will look like or who will be filling many sets which are now "up for grabs." My signature goal will not be reached by the Election and I know that a new President and a new Congress will be the ones who will need to re-new, appropriate and then re-allocate the EXISTING funds mentioned in my petition text, to improve life for ALL people with autism, of all ages, at all levels of function, diagnosed and undiagnosed. Yes, now there are many in Washington and those who aspire to be in power, who want to make hurtful cuts to EXISTING programs and services across-the-board and autism is only one target of these proposed cuts. And I know that there are controversies over proposed changes in the DSM-5 and this includes the autism diagnosis. However, even with these realities and challenges, we owe it all people with autism and to ourselves, as a society, to try. Autism affects all of us and when a people group remains unwelcome, misunderstood, and underserved, this affects us all.

 

My petition can be found at the Change.org site: http://tiny.cc/mrsahw. I shortened this link to make it much easier to remember and to share than the original Change.org URL link is. My hope is that, once you have signed this petition, you will share it in email messages, send it or post it on Facebook, tweet it, share it through real-time online chats, and through any other social network at your disposal. And do not leave out the tradional word-of-mouth.

 

http://caringenoughtomakeadifference.com. You can find my petition on a widget at this site, which is under construction, and it can be signed there. There are also share options for this widget and my hope is that you will share this site, especially with those in your life who do not use social networks.

 

https://www.facebook.com/AutismAffectsUsAllPleaseSignKeepSharingThePetition

If you are a Facebook user, I recommend that you visit this page, "like" it (so its contents will stream into your Newsfeed), and you will find that my petition should be easily found and shared through this page.
http://networkedblogs.com/QoMKI

What Is In A Word?

Posted by Simon Lee Briggs on October 26, 2013 at 3:35 PM Comments comments (0)

Beauty. They say that it is in the eye of the beholder. But is beauty subjective, something that is present or absent depending on our opinion of the subject of our evaluation for this trait? I know that there are different forms of beauty, including physical beauty, the beauty of how things or people look on the outside. And these can be subjective as we all have different ideas of what any form of beauty is. I know that there are the "top ten" of the "most beautiful" people, yearly in a celebrity magazine or two. But this type of beauty that is being referred to is physical beauty, how these individuals look. Frankly, when I have seen some of the "winners," I have wondered what judges saw in them. But this just proves that beauty IS subjective and that what is beauty to some people is not beauty to others. And then there are other forms of beaurty that have nothing to do with outward appearance, that is, what we call inner beauty of the heart and soul ot the beauty of how things are used. The Bible talks about the "beautiful feet" of those who bring the Gospel of God to others. Now we know that feet are normally NOT pretty to look at; often they can be downright ugly. But the beauty here is how these feet are used: to introduce something into the lives of others that will change their lives forever. As for inner beauty of the heart and soul, I was stuck, months ago, with an article about the woman who is titled "the ugliest woman in the world" but whose choices and attitude scream her inner beauty of heart and soul. This very moving article and the many comments to it, can be found here: http://shine.yahoo.com/beauty/lessons-worlds-ugliest-woman-stop-staring-start-learning-184400606.html.

 

Hero. We use this word very often. We use the word to refer to people who mean much to us, as in "He is my hero." This is in the sense of someone meeting the needs of another in the right place and at a critical time. For example, we often appeal to people's sense of compassion and humanity by saying, "Will you be a hero to this person?" when raising funds for children in need or appealing to the public for information to solve crimes or to bring a missing/unidentified person home. And it is used to simply refer to people we look up to, for good or not. Celebrities and athletes are frequently called "heroes" so often when people express "hero worship" for them; I have often felt that such persons are not the best people to ascribe this lofty title of hero to. And that holds true especially when they adopt, as so many do, lifestyles of drug addiction, self-indulgence or self-seeking. And then we use this word to refer to those who place themselves in harm's way on behalf of others, especially in reference to law enforcement, the military, paramedics, emergency medical technicians, firefighters, and those who serve in many other dangerous positions. And this use of the word is most appropriate. As I have heard it, a hero is one who 1) goes above and beyond the call of duty, 2) risks himself/herself to serve the higher good of others and 3) does things that he or she would NOT be criticized for if he or she chose not to do these things. A number of years ago, for example, Headline News Network (HLN) was doing a "Heroes" segment. The featured couple were employees who worked at a local McDonalds; they had both, WITHOUT training or protective gear, had run into a burning building to save the lives of a family. They are heroes by anyone's defintion! However, is this trait something that is within reach of each of us? The way that I have heard it, the choices we make in the small things will determine how we would react in a situaton where we would be called on to show the trait of heroism.

 

Survivor. We use that word more and more today. People who have battled cancer call themselves cancer survivors. People who have had heart attacks or strokes call themselves heart attack or stroke survivors. People who have experienced crimes of any kind call themselves crime survivors. People who have experienced abuse of any kind call themselves abuse survivors. We can go on and on. When this word is used, of course, what comes to mind are people who have experienced situations of life and death and have lived through them. But this word is also frequently used by so many people to give validation and closure to lives of adversity and hardship. It is an empowering word that gives meaning to things that would otherwise have no meaning and give one motivation and courage to face life and people than if you see what has happened to you as merely a random set of events without rhyme or reason. Survivor is a title that many people in my online networks give themselves and if their identity. When I was growing up or even in early adulthood, I do not remember so many people calling themselves survivors. But in this age of information and awareness about all different forms of crime, abuse, illnesses and disabilities, this word is being more widely used by many of of us to describe our pasts. This is in contrast to the past when many things were shrouded in shame, stigma and a code of silence. Of course, in an ideal world we would not have to call ourselves survivors of anything. But we do not live in that kind of world and most of us need the validation that will empower us to face life and people with confidence.

 

Friend. Oh how often we use this word! We often use it to refer to people whom we know or don't know well, just because they may happen to go to the same congregation, go to the same school we do, work at the same job or live in our neighborhood and greet us when they see us on the street. And in this age of social networking, we use this word to refer to people whom we have added to our social networks. Friends in social network circles have access to each others' profiles. And in these social networks, the more friends we have the more people we have who are friends in name only. These are people whom we may not give a passing thought to, be able to recognize if we saw them walking down the street and may not even like them. And then we use the word friend in the Biblical sense of the word, to describe someone who loves unconditionally, protects us, stands by us, believes in us, tells us the truth and who can be trusted. Many times we use the word friend when we really mean acquaintance.All of us have far more acquaintances than friends and can probably count on one hand the number of friends we actually have. And it works both ways, to build a true friendship we need to give trust, unconditional love, truth, loyalty and understanding, all the qualities of friendship. In thse days this word friend has become very cheap and its meaning meeds to be reclaimed. That can happen if we give and receive real friendship. Years ago, I would have said that it is impossible to build a real friendship online. Now I have changed my mind though I still maintain that it is very hard to do. Yes, I know that we live in a society of "lonely strangers" and that building friendships is much easier said than done.

 

Advocate. That word is often used. Growing up, I thought that the word referred only to people who go before politicians or others in power on behalf of others, like lobbyists. I know that such people are indeed advocates. In the Bible, Jesus calls Himself our Advocate before His Father not because He has to defend us to the Father but to defend us from Satan (yes I believe in a personal devil) who is no friend of ours. But today, now that I have entered the world of social networks and have taken up a number of causes that have bearing on my life and that of my family, I hear the word often and many in my network call themselves by this title. But recently, in a discussion thread to a blog directed to families with missing loved ones, a person said something like this: "Many people call themselves advocates when they are actually concerned citizens. This is not accurate. Anyone who calls himself or herself an advocate ought to get proper training and ought to get background checks to prove that he or she can be trusted." Yes, when it comes to many fields and needs I agree that such training and due diligence must be done. But, in scripture, an advocate is anyone who speaks up for the powerless and to see that their needs are met. Parents, especially when our children have special needs, call ourselves advocates for our children. Lawyers call themselves advocates for their clients. This week, though, I was speaking with a dear friend who mentioned that looking out for one person and giving ourselves to saving or helping one person, is also advocacy. Put this way, being and acting as advocates is well within the reach of each and every one of us. We just have to keep our eyes and ears open to the needs around us.

 

Abuse. In light of the current Jodie Arias trial, those of us who have even casually been following it can see how the defendant has used the "abuse" defense to try to reduce her consequences or get out of them completely. We can also use the words domestic violence or intimate partner violence. Yes, over the years I have heard the words abuse and domestic violence being tossed around, in everything from survival stories and memoirs to criminal cases in the defense of offenders. For years now, it seems that the disclosure of some kind of abuse has become very common, I daresay almost fashionable. Traditionally, abuse and domestic or intimate partner violence have been taken to mean physical abuse. Only in recent decades has abuse been recognized as a broad umbrella, including emotional, verbal, spiritual, sexual and financial abuse. Today in out high-tech age abuse has become electronic and can be called cyber-abuse. Now it is widely recognized that emotional abuse is at the foundation of all other forms of abuse or it can stand alone. Abuse is a sustained pattern of behavior. Currently, only physical and sexual abuse are legally recognized as abuse and can be prosecuted. The bad thing about abuse being recognized as a broad umbrella and on a spectrum is that the word is often used irresponsibly to refer to normal but unwelcome actions or words. But the good thing about abuse being recognized as a spectrum and a wide umbrella is that there is so much more awareness and support for victims and survivors. This is life, however; we must take the bad with the good. Personally, I much prefer that abuse is recognized as a broad spectrum. As I write this and the jury in the Jodie Arias trial has begun deliberations about her guilt/innocence, I know that the way the words domestic violence and abuse were tossed around throughout this entire trial will influence the verdict that this jury comes back with.

 

There are so many other words that have many different meanings but I picked these six words because they are commonly used in my world. Words carry much power when they are used responsibly, honestly and in the proper context. When they are misused they can cause much damage, even life-threatening harm.

We Are Missing: Help Bring Us Home

Posted by Simon Lee Briggs on October 26, 2013 at 3:35 PM Comments comments (0)

Missing. Vanished. Disappeared. Lost. Gone. These are scary, ugly words that describe people who, for various reasons, find themselves unfortunate enough to become unaccounted for and are not able to be found without help. It seems that, if we follow the news, especially online, that we see one case after another, of men, women, and children who vanish. Those of us who operate in the "world of the missing," whether as family members, professionals, volunteers or advocates, see literally one person after another, be reported as missing. And this does not take into consideration all of those who are not even reported as missing! People of all ages, and from all walks of life, of all races and ethnicities, go missing. Boys are as likely to vanish as girls; men are as likely to disappear as women. Having a missing loved one can happen to anyone at any time.

The epidemic of missing persons is so HUGE that I currently have three Facebook pages, including one just for missing children and one just for missing adults. Every time I log into Facebook and scroll through my Newsfeed or Facebook pages feed, I see one missing person case after another! Along with all those missing children and missing adults that do not get solved, are the many, many new cases that emerge. This does not even count all those missing children or adults who are never reported to authorities as such!

I have "friended" many profiles on Facebook, that have been set up for missing people and they make up roughly half of my social network; these profiles are set up by family members and advocates, so missing persons posts show up on my homepage with alarming and heartbreaking frequency. It is the case of Lindsey Baum, who is pretty close in age to my own daughter, who got me fired up about this issue. Lindsey, who vanished on June 26, 2009, was almost 11 at the time and is still missing! Missing people are likely to never go away, nor the need for awareness. And for the sake of those who are not familiar with missing people, let me explain the issues surrounding them and how they apply to all of us and why this concerns us all.

The first, and most simple reason people go missing is miscommunication about whereabouts. When, in any situation, one of us fails to let others know where we are going and where we can be reached, whether we are going for a few blocks, a few milies, out of our country, or even our state or country, it is possible for others to "lose us." For example, over four years ago, the media covered a heartbreaking story of couple in an affluent neighborhood who "lost" their baby because each parent assumed their child was with the other parent (and so was safe). Tragically, the child had vanished and his poor little body was found. This was all because of a misunderstanding, and don't we all have those? I know I do! But this couple was unfortunate enough to pay for theirs by the loss of a child. And this sort of missing person scenario is probably more common that we will ever know; isn't this one more incentive for communicating, especially concerning whereabouts, ours or others' in our care?

A second reason people, both children and even adults, go missing is because they run away, that is they vanish by choice. Most missing people, especially minors, we are told, are runaways. Though most are found safe, many other runaways encounter foul play as they go on the run; they may end up raped or even murdered; most who run into foul play become victims of human trafficking, especially in the teen years. Thrownaways, those who are not reported as missing, also are just as much at-risk as runaways, of running into foul play. Human trafficking is a big issue surrounding missing people, as many of them are believed to be in the sex slavery trade (not the only form of human trafficking, which includes adoption trafficking or domestic servitude). Since many of us are parents of children ages 10-25 (considered to be most at-risk of becoming victims of human trafficking), we ought to be very concerned about this matter. This is a depraved, sick industry and it is a powerful incentive to drill into children that running away is NOT the solution to problems at home; it is also a big incentive to create a home balanced with the right mix of love and discipline so they the young will not even want to run away! For runaways cannot be assumed to be safe, though most missing children who are found safe, are runaways. And running away is not confined to children. Adults have also been known to vanish willingly. I understand that an average runaway, within the first 24 hours, is likely to be approached by a pimp. A few years ago, in regards to one adult voluntary disappearance, I read a book called EXIT THE RAINMAKER, written by a woman whose husband ran away, and began a "new life" in Europe, moving from country to country. There is the high-profile case of a boyfriend of the singer Olivia Newton-John, who vanished for many years and was found safe, though it was revealed that he ran off, starting his "new life" abroad also. Tiffany Tehan is the most recent cases; an active parishioner and a mother, she ran off and was found with a man. We adults also need to lead by example, showing the young that running away from problems is not the way to solve anything. By facing our adult responsibilities, including caring for these children, jobs, homemaking, bills, or whatever we are called to do, we show them that running away is "uncool." And we spare loved ones and our communities unneeded anxiety, anguish as well as expenses of looking for us. We may even be saving our own lives!

Many children vanish because of family abductions where the non-custodial parent (who does not have child custody) kidnaps them and harbors them unlawfully, often out of vindictiveness toward the other parent and as a way to "get back at" them. This kidnapped child is normally found safe but cannot be assumed to be so, especially when the non-custodial parent is known to be abusive, as in the high-profile, sad case, over a year ago, of little 8-year-old Aja (pronounced Asia) Johnson, who was taken by her stepfather and was found dead (He had killed his ex-wife, Aja's mother beforehand). Years ago, I saw the tear-jerker, "When Andrew Came Home," about a 6-year-old boy who was kidnapped by his non-custodial father, and was found 5 years later. However, as often happens in the case of parental abductions, his father had turned Andrew against his mother, so he came home with deep fear and hate toward her. Fortunately, that story has a happy ending. Sadly, not only do such children come home, brainwashed, but sometimes the custodial parent never sees them again. I read that rage-filled parents use parental kidnapping as a weapon to hurt the other parent, and are getting more blatant about actually hurting the children they kidnap. So children who are kidnapped by a family member should not be assumed to be safe! We parents need to realize that, even if our partner hurts us, using a child to "even the score" solves nothing!

And then people, especially children, teens and young adults, vanish because they are abducted by acquaintances or by strangers. In this case, the missing person is more likely to be found dead and what happens to them normally happens within the first three hours. Abductors may take their victims to hold them captive, whether for a few minutes, a few hours, a few days, for months or even years, and this is when they are likely to be found alive. Long-term kidnapping survivors, like Elizabeth Smart, found alive after 9 months, or Jaycee Dugard, who was found alive after 18 years, are notable exceptions. People who vanish because of abductions are in the minority of the total number of missing people. We have many resources today to protect our children from such abductions, though there are never any 100 percent guarantees. We can be thankful for the AMBER ALERT program, limited as it is, as it covers only children whose abductions are witnessed, who are officially believed by law enforcement to be in bodily danger, and who are 17 or under (in my home state, age 16 is the cut-off age). Most recently, three girls, Amanda Berry, Gina DeJesus and Michelle Knight, were located in Cleveland, Ohio. They had been held captive in Castro's house for ten years, more (eleven for Michelle). If you follow the news, you probably are aware of the horrible conditions these girls were forced to live under, as their captor "hid in plain sight." He was respected in the community, attended worship services every Sunday and otherwise moved about in the community, and at the same time brutalized these three girls. He fathered a child with one of them! Many of us may have seen his sentencing, where Michelle Knight gave a powerful victim impact statement. As more and more cases like this surface it makes me wonder how many others are being held that we have no idea of and by people that we may not dream would commit atrocities against anyone!

Domestic violence is another big reason for missing people. A common scenario, which we hear about too often in the news, is when a parent, partner, or spouse abuses a family member to death and then makes the murder look like something else, like suicide or a mysterious disappearance. The only way we can deal with this one is to manage our anger (often easier said than done) and to find ways to prevent and end all forms of abuse in our communities. So much has been said about child abuse and spousal abuse that I need not go into it here. The sad stories about missing children or adults vanishing, and then being found dead (or not at all) and where spouses or parents are implicated, are far too numerous to list! Domestic violence by wives or girlfriends has become almost as common as that by husbands or boyfriends. On Investigation Discovery (ID), the sheer volume of solved cases covered there show how HUGE domestic violence missing persons/murder cases are! It seems to be getting worse, too! ID series like "Southern-Friend Homicide" and "Deadly Women" and the Oxygen series "Snapped" are just a sample of how epidemic murders are! A new ID series called "Deadly Men" is supposed to begin this upcoming Fall. Will it ever end?

A final reason that people of all ages vanish is because they have special needs, especially cognitive differences, like amnesia, strokes, dementias, mental illness, autism, suicidal urges,or other such issues, that causes them to "wander off" or to "elope" where they are at-risk of bodily harm or foul play. Disabilities are often a big issue that surround missing people, but I fear that it is seen as a separate issue, for some reason. AMBER ALERT, the national program that has saved so many children's lives, does not cover anyone but minor children who have not only been abducted but whose abductions have been witnessed. The program does not cover children (and certainly not adults) with special needs who wander. There have been many recent cases of autistic children who have wandered off and whose bodies have been tragically found in bodies of water. The only answer I see for this is to seek to protect such people in such a way that takes into consideration their special situations while giving them some measure of independence. Yes, this is easier said than done!

The point? We should ALL be concerned about missing people. Those of us who are blessed not to have missing loved ones MUST realize that this can happen to anyone at any time; any person with a missing loved one will likely tell you that they, at one time, didn't think it would happen to them, either.

Below I provide links to helpful resources and I hope you will check them out. And if you have a missing loved one, please know that you are not alone and that there are many resources for you and people who care. If you are simply seeking to educate yourself about this, these resources will educate you to toward prevention and reducing your risks of having a loved one vanish. And if you want to help, there are options for that, too.

We all can help bring missing people home!

 

I now have three Facebook pages because of the enormity of this epidemic. Please visit each of the links and "like" each page if you are a Facebook user.

 http://ldesherl.blogspot.co.uk/search/label/Abductions%209Family

https://www.facebook.com/KidzMissing Missing Kids

 

https://www.facebook.com/AdultzMissing Missing Adults

 

https://www.facebook.com/AwarenessForMissingUnidentifiedCrimeVictims

Awareness For Missing or Unidentified People and Crime Victims

 

National Domestic Violence Hotline, 24 hours a day and 7 days a week, translatable in 170 languages

1-800-799-SAFE (1-800-799-7233), 1-800-787-3224 (TTY)

 

National Child Abuse Hotline, 24 hours a day and 7 days a week, translatable in 170 languages

1-800-4-A-CHILD (1-800-422-4453)

 

National Runaway Safeline (formerly Switchboard)

1-800-RUNAWAY (1-800-786-2929)

 

National Human Trafficking Hotline

888-3787-888

 

http://www.lostnmissing.com/ Lostnmissing, Inc.

This is the website for a nonprofit which provides comprehensive services for familes with missing loved ones and also educates about prevention of seeing a loved one going missing.

 

http://www.missingkids.com/ National Center for Missing and Exploited Children

This is the website for a nonprofit which provides comprehensive services for families with missing children with a database for all children in the US who are reported as missing, and provides lots of information, including how to prevent children from going missing.

 

http://namus.gov/ NAMUS database

This is the US database for ALL missing and unidentified people whose cases have been entered into it. It can be used by law enforcement or by the public; it is considered to be much-underused because people don't know how to use it or don't know about it in the first place.

 

http://www.lbth.org/ncma/index.php/ Let's Bring Them Home

This is the website for a nonprofit which serves families with missing adult loved ones. It provides a comprehensive database for all adults in the US who are reported as missing.

 

http://peace4missing.ning.com/ PEACE4 THEMISSING

This is a social networking site which serves people all over the world, and focus their services on families with missing loved ones; it is full of resources, guidance and support if you have a missing loved one. Many victims or survivors of crime or abuse use this site as a platform to seek justice or to connect with others. And then those of us who simply want to help can use the site as a way to make a difference and to care for people without leaving our homes!

 

http://www,childhelp.org/ Childhelp

This is a website for a nonprofit which provides comprehensive services to prevent and end child abuse in our communities; this site also includes a hotline to reporte child abuse.

 

http://peasintheirpods.com/ Peasintheirpods Children

This is a website for a nonprofit which serves families of missing minority children, children when usually are underserved.

 

There are other resources which I'm sure you can add!

 

Making Your New Home Kid-Friendly

Posted by Simon Lee Briggs on October 26, 2013 at 3:35 PM Comments comments (0)

 

Once upon a time, house decoration consisted of picking an antique dresser and selecting paint samples: now it involves baby gates and outlet protectors. There is no way around it: kids change everything, including your home.

 

Making your house safe for kids is an essential part of parenthood. Luckily, kid-proofing your home doesn't have to be an expensive task. It is a simple process that can be done with just a little bit of well-placed effort.Home is a place of both safety and danger. This is particularly true for children. In fact, per the National Institutes of Health, 37.9 percent of children aged 0-6 have had an accident in the home. By far, the most prevalent accidents were falls, as these consisted of 75.4 percent of total incidents.

 

Steps for Kid-Proofing the Home

 

A home should be kid-proofed whenever kids live in it or are visiting for any significant period of time. To kid-proof your home, consider taking the following steps:

 

Install a baby gate: Baby gates are important in a home with stairs. Not only should gates be installed at the top of any staircases, but a gate should also be placed in front of the bottom stair to prevent kids from climbing up. Baby gates can also be used to keep children out of rooms where they aren't allowed, such as a home office or a china closet.

 

Use outlet protectors: Kids enjoy sticking things into outlets and it's important that the outlets be blocked to prevent them from electrically shocking themselves. Outlets well above ground ought to be safe, but any outlet that is kid-level should be protected.

 

Reduce the urge to climb: Kids love to climb, particularly near things they shouldn't be clambering around on. To help reduce the urge for a child to climb, be sure to keep chairs away from areas that may be of interest to them, such as near windows. You may also consider not placing anything enticing at the top of bookcases or pianos. If there is a bookcase that your child has tried to climb up before, consider using brackets to hinge it to the wall for extra safety.

 

Store chemicals up high: Most of us are used to storing dishwashing soap and cleaning supplies under our kitchen sink. However, this area is a favorite spot for toddlers to explore. Rather than leaving chemicals in an area accessible to children, consider storing them in a higher cabinet, such as the one above the refrigerator or the stove. Other household items -- such as knives and matches -- should also be stored out of reach.

 

Don't overlook the backyard: The backyard can be a place to make wonderful childhood memories. Unfortunately, it can also be a place for less-than-wonderful childhood injuries. To help keep you backyard as safe as possible, consider removing any poisonous plants or bushes; using pesticides and herbicides with care (per Medicine Net, you should wait 48 hours before letting children play in areas where chemicals have been sprayed); never mowing the lawn with children nearby; and keeping children far from the grill or fire pit. Additionally, you may want to teach your children to wear shoes when playing on jungle gyms or walking on rocks, to never eat anything they find on a bush or plant, and to refrain from climbing trees without adult supervision.


http://ldesherl.blogspot.co.uk/2013/10/making-your-new-home-kid-friendly.html?spref=fb

1,000,000 People for Better Lives for All Autistic Persons!

Posted by Simon Lee Briggs on October 26, 2013 at 3:20 PM Comments comments (0)

 

I'm a mother of a daughter, diagnosed with an autism spectrum disorder and a person myself with what I am convinced is an undiagnosed autism spectrum disorder, who is still in search of answers for my life. I am passionate to see funds be released to provide more services of different kinds for adults with autism as well as to see covered services for all families of children with autism, including low-income families and minority families. Currently, the diagnostic and support services that do exist are for those 21 and under, and those are available usually to families able to pay or who have quality, private insurance. Sometimes states may provide limited coverage for these families. As for adults with autism, virtually no diagnostic or support services that families can access or afford. In my state, adults like myself who yearn for an autism evaluation must wait a year in advance if we must depend on insurance; if you are 21 or over, support services are almost nonexistent. In a nutshell, this petition calls for a comprehensive package of covered services for all persons with autism in the US.

 

Goal of Petition: The goal is to obtain funding for mostly support services but also for research, for persons of all ages, races, incomes and walks of life who have suspected or diagnosed Autism Spectrum Disorders (ASDs). Currently, most autism services are available only to autistic persons under age 21 whose families are able to pay for these services. Services for autistic adults are very limited or available only in certain areas in the US. Because of this, far too many people of all ages even in this age of awareness, continue to "fall between the cracks." This petition calls for comprehensive coverage for all autistic persons.

 

Currently, there are $931 million available for autism funding; this includes $693 million in the Combating Autism Re-Authorization Act (CARA), signed into law by President Obama in September 20, 2011 but never appropriated (http://www.autismspeaks.org/advocacy/federal). This also includes $238 million in autism projects that expired at the end of September 2012 (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research, Sept. 19, 2012). What is needed is for these funds to be re-newed, appropriated and then re-allocated to include adults with autism.

 

Thank you for considering this petition. If you wish to find out more feel free to look at my letter to the US President and the US Congress below. Your support means very much to every person who is touched by autism!


http://www.change.org/petitions/1-000-000-people-for-better-lives-for-all-autistic-persons#share


Rss_feed