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You can start by telling these people that after they are cured, they

will realize the errors in their thinking. Then you can explain to

them that there is no comparison to their level of functioning and

the level of kids who can't talk, read or write and who smear feces

all over the house.

> How do we respond to the following?

> http://psychcentral.com/psypsych/Autism_rights_movement

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You can start by telling these people that after they are cured, they

will realize the errors in their thinking. Then you can explain to

them that there is no comparison to their level of functioning and

the level of kids who can't talk, read or write and who smear feces

all over the house.

> How do we respond to the following?

> http://psychcentral.com/psypsych/Autism_rights_movement

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That's pretty blunt, , but I have to agree. I have considerable difficulty

accepting the

opinion of parents who believe the same thing: that their children ARE autistic,

but do not

HAVE autism. They say that autism is merely an alternative form of brain wiring

that

they've been born with.

And BOY do they attack the biomedical stuff. It's a little disheartening. I feel

bad for those

kids who might otherwise have a shot if it weren't for their parents. But then,

many of the

parents who feel this way are mirroring what their OLDER autistic kids are

conveying to

them. We may never be able to persuade them.

However, I'm more interested in swaying those who are a little more open

minded...people

who want to view what science is now learning.

http://www.autismmedia.org/

> > How do we respond to the following?

> > http://psychcentral.com/psypsych/Autism_rights_movement

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I think an ounce of diplomacy on this subject is needed, especially as

we gain greater visibility. I would say to an adult with ASD and a

level of functioning that allows them to make informed medical

decisions: " I will never challenge your right to informed consent to

any medical procedure. You have the right to decline any medical

procedure, even if it would improve your quality of health and

living. In the meantime, I will stand shoulder to shoulder with you

in the broader civil rights movement for your maximum inclusion,

understanding, and acceptance by society. " In return, however, I'd

ask them to respect my right to make informed medical decisions on

behalf of my dependants, one of whom has dual diagnoses of ASD and

heavy metal toxicity.

> > How do we respond to the following?

> > http://psychcentral.com/psypsych/Autism_rights_movement

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I think an ounce of diplomacy on this subject is needed, especially as

we gain greater visibility. I would say to an adult with ASD and a

level of functioning that allows them to make informed medical

decisions: " I will never challenge your right to informed consent to

any medical procedure. You have the right to decline any medical

procedure, even if it would improve your quality of health and

living. In the meantime, I will stand shoulder to shoulder with you

in the broader civil rights movement for your maximum inclusion,

understanding, and acceptance by society. " In return, however, I'd

ask them to respect my right to make informed medical decisions on

behalf of my dependants, one of whom has dual diagnoses of ASD and

heavy metal toxicity.

> > How do we respond to the following?

> > http://psychcentral.com/psypsych/Autism_rights_movement

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You know as I read a bit deeper (see article below) and I agree with these guys more than I disagree with them. They could be a great help to us if we reached out to them.

People like Binstock and Shore are a great example of why these folks need to not be drugged or put away. They are fighting for their potential. They need to know we want the very same thing for our kids. I think our kids are in worse shape in that they have recieved more vaccines than people 20 years ago.

How can we reach out to them on what we agree on? This was the generation of kids that lived through holding therapy and ABA with adversives. I think I would be a little ticked too.

Controversy about ABA among anti-cure advocates

There is some controversy over ABA among critics of ABA who hold the anti-cure perspective in autism. There are some with this perspective who see any ABA in any form a violation of an autistic person's uniqueness and individuality and potentially damaging to the autistic person's mental health. There are others who feel some forms of ABA can be helpful as long as there are no aversives and that it is done to teach skills instead of attempting to make autistics behave like neurotypicals.

[edit]

Drug therepy

Many autistic people are against the overprescription of neuroleptic drugs in autistic people to control behavior. They have formed an organization called Autistic People Against Neuroleptic Abuse (http://www.dinahm.pwp.blueyonder.co.uk/) to counter this phenomenon.

[edit]

Institutional damage

Autism rights activists oppose the damage done to autistics in psychiatric hospitals.

[edit]

Historic prognosis for permanently institutionalized autistic children

These facts have been claimed about historical autism institutions:

It is well known that institutions are not parent substitutes at all; early and/or permanent institutionalisation will harm social and emotional development of any human being. Autistics are not immune to this effect.

The routine-seeking traits of autism lend themselves to Institutional Damage, as many autistics would find living thousands of completely identical days quite easy.

Historically, almost all autistics, particularly those severely affected, were permanently institutionalized from an early age because no one knew what was wrong with them or what to do about them. Having such a child was an embarrassment and, in former times, a possible sign of demonic involvement.

After decades of institutional damage (with or without the treatments of that era, usually without), it is unlikely for an autistic to learn to speak, to become socialized or to engage in useful work. This fact has given rise to some statistics saying autistics in institutions never improve.

The statistics were used to predict institutionalized autistics were doomed never to learn or grow; however the importance of institutional damage was entirely forgotten and led to the statistics-backed over-mediatized belief autistics never learn speech or socialization at all. Many doctors (including a few older autism experts) firmly believe autistics can't learn these things by themselves, or with just parental assistance (e.g., Park). These men tend to disregard the fact that many autistics can and have done so; they may claim such people were misdiagnosed and were never actually autistic.

It is the opinion of autism rights activists that long-term institutionalisation of autistics denies them the right to potentially lead a normal life on their own. They don't believe there is a way to know who will/won't improve or by how much.

There are now a great many well-documented cases of autistics - living in a family, a group home, or independently - who actually taught themselves the verbal and social skills needed to survive. The argument that such people are rare or misdiagnosed is no longer mainstream in either the scientific literature or the media.

IQ tests are usually performed to predict or confirm permanent institutionalisation of patients who seem to have poor intellect. These IQ tests may gravely underestimate the potential/intelligence of an autistic. For example, if sensory oversensitivity causes distraction during the test (such as the noise of a watch timing the test, the aftershave/perfume of the examiner) or acute neurological discomfort caused by the moment where routine is broken (such as taking the test in the first place, having to walk into an unknown place, etc).

There is no way to know which autistic will not be able to acquire verbal and social skills, regardless of the age of the autistic, so autism rights activists do not reccomend permanent institutionalisation because they believe it prevents improvement and more often than not causes regression. Autism rights activists believe prognosis is much better in a family than in an institution even at the "lowest" level of functioning. Greg <gregoryjphillips@...> wrote:

I think an ounce of diplomacy on this subject is needed, especially as we gain greater visibility. I would say to an adult with ASD and a level of functioning that allows them to make informed medical decisions: "I will never challenge your right to informed consent to any medical procedure. You have the right to decline any medical procedure, even if it would improve your quality of health and living. In the meantime, I will stand shoulder to shoulder with you in the broader civil rights movement for your maximum inclusion, understanding, and acceptance by society." In return, however, I'd ask them to respect my right to make informed medical decisions on behalf of my dependants, one of whom has dual diagnoses of ASD and heavy metal toxicity.> > How do we respond to the following?> > http://psychcentral.com/psypsych/Autism_rights_movement__________________________________________________

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You know as I read a bit deeper (see article below) and I agree with these guys more than I disagree with them. They could be a great help to us if we reached out to them.

People like Binstock and Shore are a great example of why these folks need to not be drugged or put away. They are fighting for their potential. They need to know we want the very same thing for our kids. I think our kids are in worse shape in that they have recieved more vaccines than people 20 years ago.

How can we reach out to them on what we agree on? This was the generation of kids that lived through holding therapy and ABA with adversives. I think I would be a little ticked too.

Controversy about ABA among anti-cure advocates

There is some controversy over ABA among critics of ABA who hold the anti-cure perspective in autism. There are some with this perspective who see any ABA in any form a violation of an autistic person's uniqueness and individuality and potentially damaging to the autistic person's mental health. There are others who feel some forms of ABA can be helpful as long as there are no aversives and that it is done to teach skills instead of attempting to make autistics behave like neurotypicals.

[edit]

Drug therepy

Many autistic people are against the overprescription of neuroleptic drugs in autistic people to control behavior. They have formed an organization called Autistic People Against Neuroleptic Abuse (http://www.dinahm.pwp.blueyonder.co.uk/) to counter this phenomenon.

[edit]

Institutional damage

Autism rights activists oppose the damage done to autistics in psychiatric hospitals.

[edit]

Historic prognosis for permanently institutionalized autistic children

These facts have been claimed about historical autism institutions:

It is well known that institutions are not parent substitutes at all; early and/or permanent institutionalisation will harm social and emotional development of any human being. Autistics are not immune to this effect.

The routine-seeking traits of autism lend themselves to Institutional Damage, as many autistics would find living thousands of completely identical days quite easy.

Historically, almost all autistics, particularly those severely affected, were permanently institutionalized from an early age because no one knew what was wrong with them or what to do about them. Having such a child was an embarrassment and, in former times, a possible sign of demonic involvement.

After decades of institutional damage (with or without the treatments of that era, usually without), it is unlikely for an autistic to learn to speak, to become socialized or to engage in useful work. This fact has given rise to some statistics saying autistics in institutions never improve.

The statistics were used to predict institutionalized autistics were doomed never to learn or grow; however the importance of institutional damage was entirely forgotten and led to the statistics-backed over-mediatized belief autistics never learn speech or socialization at all. Many doctors (including a few older autism experts) firmly believe autistics can't learn these things by themselves, or with just parental assistance (e.g., Park). These men tend to disregard the fact that many autistics can and have done so; they may claim such people were misdiagnosed and were never actually autistic.

It is the opinion of autism rights activists that long-term institutionalisation of autistics denies them the right to potentially lead a normal life on their own. They don't believe there is a way to know who will/won't improve or by how much.

There are now a great many well-documented cases of autistics - living in a family, a group home, or independently - who actually taught themselves the verbal and social skills needed to survive. The argument that such people are rare or misdiagnosed is no longer mainstream in either the scientific literature or the media.

IQ tests are usually performed to predict or confirm permanent institutionalisation of patients who seem to have poor intellect. These IQ tests may gravely underestimate the potential/intelligence of an autistic. For example, if sensory oversensitivity causes distraction during the test (such as the noise of a watch timing the test, the aftershave/perfume of the examiner) or acute neurological discomfort caused by the moment where routine is broken (such as taking the test in the first place, having to walk into an unknown place, etc).

There is no way to know which autistic will not be able to acquire verbal and social skills, regardless of the age of the autistic, so autism rights activists do not reccomend permanent institutionalisation because they believe it prevents improvement and more often than not causes regression. Autism rights activists believe prognosis is much better in a family than in an institution even at the "lowest" level of functioning. Greg <gregoryjphillips@...> wrote:

I think an ounce of diplomacy on this subject is needed, especially as we gain greater visibility. I would say to an adult with ASD and a level of functioning that allows them to make informed medical decisions: "I will never challenge your right to informed consent to any medical procedure. You have the right to decline any medical procedure, even if it would improve your quality of health and living. In the meantime, I will stand shoulder to shoulder with you in the broader civil rights movement for your maximum inclusion, understanding, and acceptance by society." In return, however, I'd ask them to respect my right to make informed medical decisions on behalf of my dependants, one of whom has dual diagnoses of ASD and heavy metal toxicity.> > How do we respond to the following?> > http://psychcentral.com/psypsych/Autism_rights_movement__________________________________________________

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PERFECT!

> I think an ounce of diplomacy on this subject is needed, especially as

> we gain greater visibility. I would say to an adult with ASD and a

> level of functioning that allows them to make informed medical

> decisions: " I will never challenge your right to informed consent to

> any medical procedure. You have the right to decline any medical

> procedure, even if it would improve your quality of health and

> living. In the meantime, I will stand shoulder to shoulder with you

> in the broader civil rights movement for your maximum inclusion,

> understanding, and acceptance by society. " In return, however, I'd

> ask them to respect my right to make informed medical decisions on

> behalf of my dependants, one of whom has dual diagnoses of ASD and

> heavy metal toxicity.

>

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Bingo ,

I was recently expelled from a " non controversial " autism message

board because I tried to dispell some myths that were being

perpetuated by some members. One person claimed that there was not

an epidemic and that these people used to be diagnosed mentally

retarded. I pointed out the error and attached the Mark Baxill

study relating to time trends and prevalance of autism. The

moderator of this group e-mailed me and told me that I had no right

to tell anyone on that board that they were wrong.

It amazes me how misinformed some people are. They do not want to

discuss any scientific literature that points toward a known

neurotoxin. These parents would much rather wax poetically about

their " unique " child and how wonderful it must be for that child to

see the world in a different way. Utter rubbish!! Many of our kids

are sick and need medical treatment to relieve heavy metal toxicity

and autistic entercolitis. Try to metion Mady Hornig's mouse study

or the Burbacher primate study in these types of groups and be awed

by the collective bashing you will receive.

> > > How do we respond to the following?

> > > http://psychcentral.com/psypsych/Autism_rights_movement

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Hi ,

It would appear you and I are completely on the same page. By the way, it was

great finally

meeting you at AutismOne, and I think you gave us a great interview. It will be

sometime

before yours makes it up on the site...because I'm giving priority to the

doctors we

interviewed. But it'll ALL go up as soon as possible.

By this weekend I expect to have Kirby's keynote posted. Possibly by

Sunday night.

Maybe before. It's about 45 minutes long...so it will have to be split up into

parts...and

possibly saved at a smaller resolution/size. Heeren and I teamed up

with 2

cameras, so it won't be as boring as having a straight on head shot the entire

time. It

switches perspectives throughout...and shows a little of the audience reaction

whenever

says something exciting or funny...

I'll let everyone know when it's up...

@ FAIR Autism Media

http://www.autismmedia.org/

erik@...

> Bingo ,

>

> I was recently expelled from a " non controversial " autism message

> board because I tried to dispell some myths that were being

> perpetuated by some members. One person claimed that there was not

> an epidemic and that these people used to be diagnosed mentally

> retarded. I pointed out the error and attached the Mark Baxill

> study relating to time trends and prevalance of autism. The

> moderator of this group e-mailed me and told me that I had no right

> to tell anyone on that board that they were wrong.

>

> It amazes me how misinformed some people are. They do not want to

> discuss any scientific literature that points toward a known

> neurotoxin. These parents would much rather wax poetically about

> their " unique " child and how wonderful it must be for that child to

> see the world in a different way. Utter rubbish!! Many of our kids

> are sick and need medical treatment to relieve heavy metal toxicity

> and autistic entercolitis. Try to metion Mady Hornig's mouse study

> or the Burbacher primate study in these types of groups and be awed

> by the collective bashing you will receive.

>

>

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Hi. I'm new to the group and have been reading through the many emails in the last few days. I understand what these people are trying to say. They don't want to be "fixed". Now, for some people, they are fine just the way they are. But for our children who have serious pain, motor function problems, communication problems, etc, it is important to get them any help you can. I look at my son's autism as a gift because until we found out about this, I did not understand my husband's social phobia and his extremely sensitive stomach. Now we are gaining much insight to why he is the way he is. But again, that doesn't make it wrong!

Thanks for this group and the support you offer to each other!barb beaudot <mnkygrl9@...> wrote:

just don't want to be lablelled insensitive.

AutismHelp4WA <autismhelp4wa@...> wrote:

you don't. Autism Rights Movement> How do we respond to the following?> http://psychcentral.com/psypsych/Autism_rights_movement> > > > > > > >

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Hi. I'm new to the group and have been reading through the many emails in the last few days. I understand what these people are trying to say. They don't want to be "fixed". Now, for some people, they are fine just the way they are. But for our children who have serious pain, motor function problems, communication problems, etc, it is important to get them any help you can. I look at my son's autism as a gift because until we found out about this, I did not understand my husband's social phobia and his extremely sensitive stomach. Now we are gaining much insight to why he is the way he is. But again, that doesn't make it wrong!

Thanks for this group and the support you offer to each other! barb beaudot <mnkygrl9@...> wrote:

just don't want to be lablelled insensitive.

AutismHelp4WA <autismhelp4wa@...> wrote:

you don't. Autism Rights Movement> How do we respond to the following?> http://psychcentral.com/psypsych/Autism_rights_movement> > > > > > > >

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Thanks for the heads-up. It was a pleasure meeting the whole team

over at FAIR. You are, in my opinion, offering one of the top 2-3

autism websites out there. It is an incredible resource that I

refer to often. It is also a wonderful place to refer others who

are just beginning this journey.

Tim

> > Bingo ,

> >

> > I was recently expelled from a " non controversial " autism

message

> > board because I tried to dispell some myths that were being

> > perpetuated by some members. One person claimed that there was

not

> > an epidemic and that these people used to be diagnosed mentally

> > retarded. I pointed out the error and attached the Mark Baxill

> > study relating to time trends and prevalance of autism. The

> > moderator of this group e-mailed me and told me that I had no

right

> > to tell anyone on that board that they were wrong.

> >

> > It amazes me how misinformed some people are. They do not want

to

> > discuss any scientific literature that points toward a known

> > neurotoxin. These parents would much rather wax poetically

about

> > their " unique " child and how wonderful it must be for that child

to

> > see the world in a different way. Utter rubbish!! Many of our

kids

> > are sick and need medical treatment to relieve heavy metal

toxicity

> > and autistic entercolitis. Try to metion Mady Hornig's mouse

study

> > or the Burbacher primate study in these types of groups and be

awed

> > by the collective bashing you will receive.

> >

> >

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This reminds me of the cochlear implant issues that are brought up

by the deaf community. Many parents have had them implanted into

their children and some in the deaf community are outraged.

The same explanations/excuses and accusations are directed towards

the parents of these children. Fortunately now, there are many

deaf " children " that this procedure was performed on that are NOW

adults and very greatful for their parents' courage in the face of

adversity.

What is suprising is the hostility. I often wonder if it is because

in some deep place these people wished their parents knew then what

we know now.

FWIW

> > I think an ounce of diplomacy on this subject is needed,

especially as

> > we gain greater visibility. I would say to an adult with ASD

and a

> > level of functioning that allows them to make informed medical

> > decisions: " I will never challenge your right to informed

consent to

> > any medical procedure. You have the right to decline any

medical

> > procedure, even if it would improve your quality of health and

> > living. In the meantime, I will stand shoulder to shoulder with

you

> > in the broader civil rights movement for your maximum inclusion,

> > understanding, and acceptance by society. " In return, however,

I'd

> > ask them to respect my right to make informed medical decisions

on

> > behalf of my dependants, one of whom has dual diagnoses of ASD

and

> > heavy metal toxicity.

> >

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I'd agree with your use of diplomacy if these people weren't

conveying the wrong message to the rest of the world about autism.

They can talk and take care of themselves and they give the general

public the impression that autism is not such a horrible condition.

They are doing our kids a huge disservice by including themselves

with our children who can't function at all. Some of them try to

tell us not to try to cure our kids and that is where they are way

out of line. If they want to come to my house and clean the feces

off the walls, I'll have an ounce of respect for them. Otherwise,

they can go to hell.

> > > How do we respond to the following?

> > > http://psychcentral.com/psypsych/Autism_rights_movement

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Well, I won't go as far as to send them down THERE... but if we can't convince

them, I'd be

happy if they stayed clear of our efforts. If you ask me...they're not nearly as

high profile

as the parent groups.

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Hi :

I don't know how high profile these neurodiversity folks are but as far as I can see, they are making efforts to become more visible. Ettina, who made a guest reply to your F.A.I.R. site (the first one, unfortunately), also brags on the Internet about google-bombing, or something to that effect...which would get her favoured sites listed before others. I have had my own run-ins with Kathleen Seidel on another list group. On that site, she decided to tear a strip off Dr. Boyd Haley for some comments he made likening ASD to "mad child disease". I have kids diagnosed with ASD and was not at all offended by Dr. Haley's comments. Yet, this woman was prepared to lambaste Dr. Boyd Haley for his comments in this regard. I don't have any problems at all with how Dr. Haley phrased his comments, yet Kathleen Seidel will find a way to make a mountain out of nothing!! The unfortunate part is, that she shares her twisted side of things with others and is finding others who buy into her

line of thinking. After dealing with the neurodiversity folks on other sites, I am not too happy but neither am I surprised to find discussion of them here. Aasaquantumerik <erik@...> wrote:

Well, I won't go as far as to send them down THERE... but if we can't convince them, I'd be happy if they stayed clear of our efforts. If you ask me...they're not nearly as high profile as the parent groups.

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I don't want to make blanket statements about ANY group...but I'm finding that

these

" neurodiversity groups " generally seem to misinterpret intended meaning by

jumping on

word choices and mistaken semantics. Ettina was not the only one to post on

FAIR's

guestbook. I had a few of those autistics and aspies (teenagers, mostly) posting

replies to

my replies and were treating the guestbook like a web forum. I had to intervene

and clear

out some of their messages. Which I hate to do, but they like to argue over

minutia and

seem really MEAN in some their replies. Others are more respectful, but still

missed the

POINT about the ONE sentence on our entire website that they've latched onto.

I think perhaps they're not even viewing our videos to gain clearer context on

the intro

paragraphs to that particular page.

It's bad enough that we have to try to convince the medical community that our

kids are

SICK and need treatment...but to convince these other groups that we're doing

the right

thing seems a little daunting. I'm tired of getting into those arguments. I'm

going to

continue doing what I do and let those we interview for our site speak for

themselves. If

these neurodiversity folks want to argue...they can contact the EXPERTS

directly.

@ FAIR Autism Media

http://www.autismmedia.org/

>

>

>

>

>

> ---------------------------------

>

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on 6/2/05 11:34 PM, TONY PENA at penas7ar@... wrote:

I have kids diagnosed with ASD and was not at all offended by Dr. Haley's comments. Yet, this woman was prepared to lambaste Dr. Boyd Haley for his comments in this regard. I don't have any problems at all with how Dr. Haley phrased his comments, yet Kathleen Seidel will find a way to make a mountain out of nothing!!

tony,

I've had similar run-ins.

check out this website:

http://www.wesupportdrhaley.info/

I felt after reading the petition against dr. haley that we should have a place to support him. At first it was on petition.com and an aspie got on and attacked dr. haley, me personally and all the other parents. I had to take it down- but cut and pasted the legitimate responses and put them on this separate site.

-

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I visited her site today to take a peek and ran across this "book review" (seemed like and EoH site review to me). Unbelievable...

http://www.neurodiversity.com/evidence_of_venom.html"christine@..." <christine@...> wrote:

on 6/2/05 11:34 PM, TONY PENA at penas7ar@... wrote:

I have kids diagnosed with ASD and was not at all offended by Dr. Haley's comments. Yet, this woman was prepared to lambaste Dr. Boyd Haley for his comments in this regard. I don't have any problems at all with how Dr. Haley phrased his comments, yet Kathleen Seidel will find a way to make a mountain out of nothing!! tony,I've had similar run-ins.check out this website:http://www.wesupportdrhaley.info/I felt after reading the petition against dr. haley that we should have a place to support him. At first it was on petition.com and an aspie got on and attacked dr. haley, me personally and all the other parents. I had to take it down- but cut and pasted the legitimate responses and put them on this separate site.-__________________________________________________

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Kathleen Seidel is nuts.

>

> I have kids diagnosed with ASD and was not at all offended by Dr. Haley's

comments.

Yet, this woman was prepared to lambaste Dr. Boyd Haley for his comments in this

regard.

I don't have any problems at all with how Dr. Haley phrased his comments, yet

Kathleen

Seidel will find a way to make a mountain out of nothing!!

>

> tony,

>

> I've had similar run-ins.

>

> check out this website:

>

> http://www.wesupportdrhaley.info/

>

> I felt after reading the petition against dr. haley that we should have a

place to support

him. At first it was on petition.com and an aspie got on and attacked dr.

haley, me

personally and all the other parents. I had to take it down- but cut and pasted

the

legitimate responses and put them on this separate site.

>

> -

>

> ---------------------------------

>

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