Help support the Mason Alert

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I don't normally post links to other threads I've started, but this one is different because it is for a VERY good cause. Please take a look:

Mason Alert Thread

Thanks.

I signed the petition, but I must say, the number of people who have signed so far is discouraging. They need 100,000 signatures and thus far have received only 94.


I'm wondering if this has anything to do with the value (or lack thereof more accurately) our society places on the lives of Autistic people and those with other developmental disorders. For example...I have a very "liberal" friend who always says some very ugly things about people with developmmental disorders. This person is very passionate and active in the abortion rights, gay rights and women's rights movements.

At that same time....this person's attitude towards people with developmental disorders is quite callous and IMO, downright socially darwinian. I once told them about a young man with Down Syndrome who has some impressive musical gifts (far more than most NT's have.) He also obtained a black belt in Tae Kwon Do and has achieved things in general that many believe are off-limits to people with DS.

This person's response?....."I would've aborted his a** anyway."

I also told this person about my NLD/AS and again their response was quite cruel I think:


"Oh well...at least you're not some ret*d f**k who should've never been born".


Perhaps the most disturbing thing of all is that this person is in nursing school.


I'm a bit troubled by the idea of this person caring for patients with developmental disorders. This person has also said equally disparaging things about African-Americans. My point being, even many supposedly "inclusive" and diversity-loving Americans draw the line at people with developmental disorders. They may not come right out and admit their negative feelings about DD folks, but to their attitudes towards us still aren't light years better than those of the nazis who considered us "lives who are unworthy of life".


Developmentally Disabled people just don't have the same value in the eyes of millions of Americans. Even those who claim to be so passionate about social justice. Gays, women, blacks and blond Aryan NT children get the lion's share of advocacy from the "social justice" crowd and/or media attention.

Thanks Horus. IMHO, your "friend" is in the wrong profession with attitudes like that. If I were receiving medical care, and that person were on the team, and I knew about the attitudes, I would refuse to allow him/her to have anything to do with my case.

Yes, the number of sigs may seem discouraging. That's why I'm also asking anyone in support of the idea (even if they think there are better ways to go about facilitation effective change), to sign the petition anyway, and spread the word on any social sites they are on (FB, MySpace, etc.). The petition, even if enough people sign it, doesn't guarantee a new alert will be set up. It will only force politicians to pay attention to it and address the concerns. That's all I'm hoping for.

I'm not much on the side of one way or the other of making changes happen, only that the status quo obviously isn't working, and something needs to be done.

Mr. Xxx wrote:

I agree and not just for the reasons I mentioned. This person makes alot of claims about themselves which may or may not be true. For reasons I don't care to get into, i've developed a fairly close relationship with this person over time and we have shared alot of our"darkest secrets", so to speak. This person claims they were dx-ed with a borderline personality disorder at 13. While the DSM-IV doesn't say anything specific about diagnosing people that age with this particular personality disorder, i'm not sure if such a DX would be legitimate for a 13y/o.

Furthermore...this person claims to "suffer" from bipolar disorder II, ADD, anxiety and panic disorder. They also claim they were sexually abused by an uncle for a number of years as a child. Not that any of this should be cause to exclude someone from the nursing profession ofcourse, but i'm just not sure if any of it's true based upon some other things this person has said. They have told me they found it very easy to lie to and manipulate anyone. They also once told me they believe they could kill an innocent person simply to "relieve stress" and "think nothing of it" afterwards. This person has told me they think they might be a sociopath Maybe this person just tells me all these things because they know I have AS/NLD and thinks i'm naive enough to swallow them hook, line and sinker.

I sometimes think they say all these things in an attempt to shock me or just get my attention. In general....this person exhibits some very troubling thoughts and behaviors which are quite inconsistent with the image they'd like to portray to others who don't know them as well as I do. Still....they have never been convicted of a crime (I checked) and they SEEM pretty harmless overall. Nevertheless...I have a great deal of concern as to whether this person should be in the nursing profession. They certainly have the aptitude, but god knows, they might be one of those nurses who winds up poisoning people with Succinylcholine or something True sociopaths don't seem overly-inclined to reveal their "true colors" even to those closest to them though.


Anyway...I don't use any of those social networking sites like Facebook, so I couldn't be of much assistance there.

I've signed the petition.

Whoo boy! I've known a few people like that, and all I can think to say is, "Walk softy and carry a big stick." Be very careful what you share with someone like that. Especially if you aren't even sure the person is being honest. There's some people out there that "share" all kinds of horror stories, and "dark secrets" about themselves, and their real goal is to get dirt on you, then use it to manipulate you. Ask me how I know. Go on. Ask. Never mind. I think you can figure it out. People like that make up stuff about themselves just to get you to put yourself in a position they can take advantage of. Then, when you try to turn it around by using whatever fake dirt they fed you about themselves, none of it's real, and you have nothing to use, and they just deny everything they told you.

I'm not saying I think your friend is like that. I have no idea. I will only say that whenever anyone suddenly starts sharing a lot of very personal information with me, I immediately wonder why. Maybe I'm just jaded by some of my own experiences, but I don't think so. I think I'm just more prudent today than I used to be.

Just be really careful.

None of my "dark secrets" could really come back and bite me if they were revealed though. They are just things which are somewhat embarassing that I won't admit to just anyone. This person DOES lie to others on a regular basis. They regularly cheat on their spouse who has been very good to them and who expects monogamy from them. They routinely lie to others who don't know them very well about their qualifications and educational attainments. This person tells many people they have a Master's degree in nursing.

In reality....this person is JUST STARTING nursing school this month and only obtained their GED two years ago at the age of 26. They even exagerrated their educational attaiments to me for awhile and finally decided to admit the truth about them. They just told me they were ashamed that they hadn't achieved more by their age and didn't want to admit they didn't even have a GED when I met them. Nonetheless...it is very easy to believe this person is actually a registered nurse or something, because they know quite a bit about medical science in general. In fact...they probably know more about MS than alot of actual nurses and even, some doctors, do.


This is because this person seems quite intelligent to begin with for one thing. For another...this person claims they had no friends growing up and that all they did was read their mother's nursing/medical (mother is an actual RN) textbooks and therefore, developed both a great passion and knowledge for medical science.


Another unusual thing about this person is that they claim to have more physical conditions/ailments than any other 20-something person i've ever met. I was immediately skeptical about all this and openly admitted my skepticism to them. They swear to this day that all their medical conditions are valid and not just the result of some factitious or somatoform disorder (which I initially speculated about.) They have gone so far as to say they'd be willing to send me copies (which can be forged) of their medical records, hospital bills, etc.....

As if this would qualify as proof of anything since many medical conditions can be fabricated or induced and even professionals can be fooled by those with the aforementioned disorders. Thus....it hardly even matters if any of the documents they were willing to send were forged or not. It also noteworthy that the DSM-IV claims employment in the medical professional as one of the pre-disposing factors in factitious disorder. While this person isn't actually employed in the medical professional yet, they have had a life-long fascination with it and extensive knowledge of it.

The long and short of this whole rigamarole is....I learned a long time ago to take everything this person says with a major grain of salt. Thus far....they have done me no harm whatsoever and would have no motivation to do so. I basically just think this person is a pathological liar to a large extent with their own unresolved mental problems and "demons". Still....pathological liars aren't necessarily defacto sociopaths let alone dangerous sociopaths. Considering the profession they are trying to get into, I can only hope their "bark is louder than their bite".

Not to criticise a somewhat seemingly good cause, but I couldn't help but read the original link and have every single criticism I have of Autism Charities enter my head - most notably, statistics they pull out of seemingly nowhere (which begs the question: How can someone gather a statistic based on how many children "wander"? Saying 92% wander is fine, but how can he prove that with solid evidence...?), creating a public image of weakness (admittedly, this may be the case for some Autistic children, but not all as the website claims ("Due to their condition, all autistic children to one degree or another lack the ability to recognize danger signals." ).) and relying fully on sympathy to gain signatures (also known as "argumentum ad misericordiam", if I remember correctly)...

Other than the following, it seems like a fully eligible charity, and may appeal to some people. sadly, it does not appeal to me because, although I could sympathise slightly with the story, the statistics on "wandering" and "Drowning is the most common form of Autistic Death" seem rather untrustworthy to me; and I also dislike his attempts to (in my eyes) suggest all Autistic Children share similar traits and/or are completely helpless.

If I be condemned by the community for this honest view, so be it.

NP. I don't expect it to appeal to everyone, and i had the same concerns, which is why i looked it up on Snopes, and located the other articles pertaining to it. I was initially somewhat suspicious of it, but now I'm satisfied at least the motivation behind it is genuine, even though I may not agree a completely new alert is needed. Hadn't really thought about the drowning thing, as I feel the overall motivations and reasoning behind doing something different from what is or isn't being done, is really the point. That said, I did look into it, and though so far, the only TOTALLY reliable source I can find cost $34 to download. Other than that, I did find this:

http://www.papremisealert.com/id70.html

Check the home page for info on the originators of the site. Yes, there is some seemingly bogus information on it, but should we really just dismiss an idea that could save lives based only on some information we might doubt, but haven't proved to be false?

To me, it's the motivation and spirit behind the thought that matters. Most of the details aren't that important, because they are just one woman's thoughts. Rarely do things like this end up as they are first envisioned. The details almost always change before the idea comes to fruition.

I'm not sure if the question on the drowning statistic was brought up here. I purchased a study done on it. The results are in the other thread.

It's a real problem.

An amber alert is only issued when a child has been exploited (i.e. kidnapped). Most people think that the second a child goes missing, an Amber alert is issued. This is not true. Not true at all.

And for those of you that don't understand the Mason alert (Zach), it is a program that would provide police with immediate information for the autistic child or adult that wanders. Why is that important? Because of several reasons, and I feel compelled to list them all so that maybe you will understand.

1. Someone with autism has absolutely no ability to recognize danger. They are fearless and most often have serious obsessions with dangerous things. I.e water (which was what my son was attracted to), vehicles, moving traffic, small, enclosed spaces, trains.... Get the picture. To them, nothing can hurt them. A pond is just a huge bathtub, the train rushing at them unable to stop is just a big version of their favorite toy, the moving cars are just like the pictures on TV.

2. The majority of autistic people are not verbal, or have an inability to communicate or follow directions. When a typical child wanders, people walk around yelling out the child's name. The child responds, moves closer to the voice, yells back... An autistic child would not do any of these things.

3. The number one occupation of an autistic child seems to be defeating all of your safety precautions, one by one. Ask any parent of an autistic child and they will be able to go through a list of different locks and devices they have used.

4. In stressful situations, autistic children often retreat into themselves and hide. A small hole, a refrigerator, a car trunk, a swimming pool, high weeds...a pond.

This alert would be an immediate source of information to authorities. It is essential for authorities to know how to look, where to look, and how to respond.

I never regretted having Mason. I thought I would when he was first diagnosed, but he was absolute joy in one tiny body and he filled me with happiness. I would thank God every day that he had given me a son I would have with me forever. I was so wrong. I only got him for five years and twelve days. That wasn't long enough.

This is a copy of the post I wrote in the companion thread, located at http://www.wrongplanet.net/postp3024404.html#3024404:

Sheliamedlam, I took the all caps off your post because forum readers tend to react harshly to that method of posting. I want people to read your content, not get upset by your posting style. If you want to make something jump out, "bold" is an option.

I am very, very sorry for you loss. That is the nightmare of any parent; that everything you've done and can do still won't prevent tragedy. I wish you the best of luck in turning your personal tragedy into initiatives that will give the next child a better chance at a longer life.

You do have to understand a little about the members on this forum, however, if they are going to support your efforts to develop a better system when young autistics run off. You want the best initiate and program possible, so please accept that the notes are not criticisms as much as areas that could be improved.

Note, first, that even though most of our members do communicate and function in society, they still identify as Autistic.

Many will disagree with your broad descriptions of autistics having no ability to recognize danger. I don't think they would be comfortable with that as a generalization; the spectrum is quite wide, remember. I think the concept of danger is more relative; perhaps not having the sense of danger a rescuer would assume based on age and intelligence, and an appropriate association between fear and actual danger (many AS kids fear flushing toilets but not busy streets; go figure).

Many will also disagree with your statement that most Autistics are not verbal, and that most have the number 1 occupation of defeating safety measures. How that applies will depend on which parts of the spectrum you limit the term "autistic," to. While your mission is to put listeners on heightened awareness, the mission of most of our members is to abolish inaccurate stereotypes. Perhaps wording can be better chosen to meat objective A without forcing a step back on objective B?

Some of those raising conflict in this thread are no longer members here because of their tendency to be disruptive in general, but that does not mean all the concerns raised in this thread were invalid. Some are worth looking into if you want to make your project as successful as possible - which, I am sure, you do.

No parent should ever have to go through what you did. I am very, very sorry.

There are many variations of "autism", but there is a common thread to every autistic child I have met. They live in their own world, communicate differently and see the world in a way that we just don't. My son was non verbal. My nephew is verbal, but only communicates with words from tv shows and commercials. Your son or daughter might communicate without any difficulties at all, but still, the autism is there. I don't really know how to get my point across on your forum, but I have received thousands of sign-ups in just these few weeks since I lost Mason.

Most of those emails have come from parents of Autistic children, and the common thread in each story told to me is that their child is fearless. Their child doesn't understand danger the same way a child without autism does, and their child is a brilliant escape artist who will run into the worst possible situation given one second of inattention.

I know that not every Autistic child is the same. I don't expect every parent to have to rely on something like the Mason Alert. Some Autistic children are nearly "normal" if there is such a thing, but then there are children like Mason, and there are more and more of them born every day. They are fearless, they don't communicate and they wander. Those are the children and adults that the Mason Alert would help to protect.

When I read the emails from parents who have lost their children because of wandering, I break down and cry. I understand the guilt, remorse and overwhelming loss that they feel. I am so overcome with guilt because I couldn't keep my baby alive. I am so angry at the way the police searched for him. I just want to do something, because if I don't, there won't be any reason for me to go on living. Mason was my life and now he is without a life and I feel this desire to give him a legacy that will give meaning to this absolute disaster.

I have had one month to deal with my son's death. I can tell you now, I will never recover. I will cry every day. I will mourn with every breath until the day I die and I just don't want anyone else to ever have to feel this way. My chest is empty. He took my heart and part of my soul with him.

I am sure, with more time, and the help from all the parents of wandering, autistic children, the rough version of the Mason Alert will be smoothed into a diamond of a legacy that will help save lives. I am just a mother who lost someone that was a shining star. I have never been a law maker or a planner of alerts, but I do know what would have helped saved my son's life, and that would have been informed emergency first responders. They had no idea how to look for my son. They had no idea where to look for my son, and I can tell you that I have personally spoken to several of the officers who where on the scene of my son's drowning, and none of them will ever forget my screams when I saw my little boy floating in the pond, and all of them signed the petition for the Mason Alert.

Thank you so much.

Sheila Medlam

I can tell you my own kids were just like this as far as being fearless. As young children they had no sense of danger at all. They are all very high functioning and can speak very well for themselves, do fairly well in school, with a lot of help trough IEP allowances and personal assistance. In spite of it all, we could never bring them anywhere unless they were under constant watch. Lucky for us, none of the three ever tried to escape the home, but when they were out, would walk or run right in front of fast moving vehicles, and all of them love water. For a time, we used harnesses for them, because they would take off in parking lots and stores. They are all now between eleven and fourteen, and though their awareness of danger is a lot better than it used to be, the younger two still have a marked lack of awareness of what's going on around them.

During first grade, my oldest son was picked up every day by us. He was told by a substitute one day that he was not a "picker-upper" but a "walker." Though he tried to tell her he did not walk home, she insisted he go with the walkers. He had never walked home before. He didn't know the way, nor did any other kids walking have any idea where he lived. My wife went to pick him up and he was already gone. Five years old, and no idea how to navigate the streets, and almost no sense of traffic dangers. Police were called immediately, and responded very quickly. He was found about 50 feet from the busiest intersection in our part of town. An intersection where adult pedestrians are struck by cars more often than any other intersection in the area. They found him because our schools have a child location system in place. It's not much, but it worked for us. Every child in school has their picture taken, and parents are issued an ID card with the picture, and physical characteristics. We told the police about his lack of danger-sense. They took it very seriously, and had three cruisers combing the streets within minutes. They had his ID card on their computers, and that is what enabled them to recognize, and stop him.

My wife's brother, on the other hand, is also incredibly intelligent, has always been able to speak for himself, but had the same marked lack of awareness of danger. He did escape from the home several times, requiring the local police to hunt for him. The police were never able to find him when he did this, because he hid from them. Later he would tell us where he'd been. Sometimes he never went far. Other times though, he told us of watching the police looking for him from the rooftops of local shopping centers. Our town is small though, so the police, by the time he had done this a couple of times, were very familiar with what he had done in the past. Still, he always managed to elude them.

A Mason alert probably would not have helped with my wife's brother. If my own kids had ever gotten out though, it most certainly would have. We do already have a program in place here for all kids, but not all towns and cities do.

It is possible some mix of the Mason alert and existing systems might work. The point is, Mason is just one child. There are many others. One is too many. Something more clearly needs to be done.

Thank you for helping me express myself. I am not very eloquent and sometimes it is difficult for me to explain to anyone what I am hoping to accomplish, but I think your response was perfect and gave examples of both sides of the spectrum. Thank you so much.