Autism

[GhostGirl]

QUOTE (liquidcrystalcompass @ May 20 2008, 02:31 PM)

QUOTE (GhostGirl @ May 20 2008, 11:45 AM) QUOTE (liquidcrystalcompass @ May 20 2008, 11:16 AM) QUOTE (iluvgeddy05 @ May 20 2008, 08:52 AM) QUOTE (Cygnus The God Of Balance @ May 19 2008, 09:09 AM) Here's a story that will make your blood boil Autistic Boy Banned from Church I saw this story this morning on Fox News.  I have several thoughts on this story.  First I feel for this family.  Their son is 6', 225 pounds and 13 years old.  As many of you know, Autistic children can be a handful, whether they are Autistic or not.  Shouldn't the church be a source of comfort for this family, instead of just another barrier?  I do agree that the family has to make sure that their son understands what is 'correct' and 'incorrect' public behavior.  We are working on that with Tony.  We're trying to teach him that it's inappropriate to be loud and act up when we're at a restaurant, and that approach is working.  It sounds like the family is trying, but with such an imposing child as Adam is, it must be profoundly difficult.  From the church's standpoint, it seems, like many Americans, they have no idea what raising an Autistic child is like.  Pressure and joint compression is very soothing to Autistic children, as is evidenced in books written by Temple Grandin.  Most people shy away from uncomfortable situations.  I wonder how many times that priest has gone to the house to console and pray with that family.  It seems unfair.  What about those who suffer from Turrets Syndrome?  Other disabled people?  Are they welcome in that church? Yeah ok ....and not to be politically charged here, but leave it to a church to be against anyone not "normal". No wonder attendance is down -- who wants to be a part of any establishment, religious or otherwise, if they are going to discriminate and bar certain people from being apart of it?? The Church should work with the family, not against it. This topic is a doulbe-edged sword. No one should be discriminated by a church. Ever. But, people in church are trying to focus and tap into some things that should not be interrupted on a regular basis. If the child becomes hard to handle during service, and the family leaves the room, then good for the parents. If they don't, then the flow of the service is interrupted.   I have no idea how to raise a child with autism. I've never walked in those shoes. But I have a feeling that the frustration level is magnified when the child is entering puberty.   This story may not be as cut and dry as it seems. The problem in this case could be with the church AND the parents. This should be addressed and handled properly with open minds. If the family and the child are not allowed, then shame on the church. If the family doesn't do everything in their power not to disturb the service, then shame on them. The church should be understanding and patient with the family. And the family should do likewise. There will be times when the child becomes hard to handle. And everyone should be understanding of that FACT. The church and the family both have responsibilites in this matter.   I don't think that we have the full story. But if we do, then shame on the church. Well, see...here's the thing.   It's quite possible that the parents ARE doing all they can. It comes down to the sad fact that there may be no perfect way to resolve such a situation. Either the family is going to stop coming to church and feel isolated and rejected, or the church will expand its understanding and somehow the family will find a place there - and mass may never be quiet.   It's just a bit hard to take, as the parent of a very loud and energetic autistic child, to be told that I "shouldn't let him act like that." [And this happens to me at times.] Merely making statements like that shows that someone doesn't understand even a minute fraction of what it's like to live with such a child. "Don't let him pull books off the bookstore shelves" or "Don't let him grab french fries off another child's plate."   It's a classic case of "Easy for YOU to say..." True enough. But everyone's feelings should be taken into consideration. I have seen some things regarding autism first hand, and I know it's not all on the parents. Some things are out of their control.   You have an emotional attachment to this subject, and you should. I hope that you didn't take the bits that struck you emotionally to heart and threw the rest out. Do you see the other side of the coin on this? Yes, I did.   Did you see that I wrote that I didn't believe there was a perfect solution? Perhaps the churchgoers will continue to feel disturbed, and the family will have to leave. Is that fair? No. It's just the way it is.   Of course I'm emotionally affected by stuff like this, because my family is isolated and even shunned by certain segments of society - because my child has autism and we can't always control him. Again...is it fair? No. Does it make me angry? Yes.   But I'm quite rational and can state again that I just don't believe that some situations have a perfect resolution. Does it sound like I'm throwing the rest out?

[liquidcrystalcompass]

QUOTE (GhostGirl @ May 20 2008, 02:35 PM)

QUOTE (liquidcrystalcompass @ May 20 2008, 02:31 PM) QUOTE (GhostGirl @ May 20 2008, 11:45 AM) QUOTE (liquidcrystalcompass @ May 20 2008, 11:16 AM) QUOTE (iluvgeddy05 @ May 20 2008, 08:52 AM) QUOTE (Cygnus The God Of Balance @ May 19 2008, 09:09 AM) Here's a story that will make your blood boil Autistic Boy Banned from Church I saw this story this morning on Fox News.  I have several thoughts on this story.  First I feel for this family.  Their son is 6', 225 pounds and 13 years old.  As many of you know, Autistic children can be a handful, whether they are Autistic or not.  Shouldn't the church be a source of comfort for this family, instead of just another barrier?  I do agree that the family has to make sure that their son understands what is 'correct' and 'incorrect' public behavior.  We are working on that with Tony.  We're trying to teach him that it's inappropriate to be loud and act up when we're at a restaurant, and that approach is working.  It sounds like the family is trying, but with such an imposing child as Adam is, it must be profoundly difficult.  From the church's standpoint, it seems, like many Americans, they have no idea what raising an Autistic child is like.  Pressure and joint compression is very soothing to Autistic children, as is evidenced in books written by Temple Grandin.  Most people shy away from uncomfortable situations.  I wonder how many times that priest has gone to the house to console and pray with that family.  It seems unfair.  What about those who suffer from Turrets Syndrome?  Other disabled people?  Are they welcome in that church? Yeah ok ....and not to be politically charged here, but leave it to a church to be against anyone not "normal". No wonder attendance is down -- who wants to be a part of any establishment, religious or otherwise, if they are going to discriminate and bar certain people from being apart of it?? The Church should work with the family, not against it. This topic is a doulbe-edged sword. No one should be discriminated by a church. Ever. But, people in church are trying to focus and tap into some things that should not be interrupted on a regular basis. If the child becomes hard to handle during service, and the family leaves the room, then good for the parents. If they don't, then the flow of the service is interrupted.   I have no idea how to raise a child with autism. I've never walked in those shoes. But I have a feeling that the frustration level is magnified when the child is entering puberty.   This story may not be as cut and dry as it seems. The problem in this case could be with the church AND the parents. This should be addressed and handled properly with open minds. If the family and the child are not allowed, then shame on the church. If the family doesn't do everything in their power not to disturb the service, then shame on them. The church should be understanding and patient with the family. And the family should do likewise. There will be times when the child becomes hard to handle. And everyone should be understanding of that FACT. The church and the family both have responsibilites in this matter.   I don't think that we have the full story. But if we do, then shame on the church. Well, see...here's the thing.   It's quite possible that the parents ARE doing all they can. It comes down to the sad fact that there may be no perfect way to resolve such a situation. Either the family is going to stop coming to church and feel isolated and rejected, or the church will expand its understanding and somehow the family will find a place there - and mass may never be quiet.   It's just a bit hard to take, as the parent of a very loud and energetic autistic child, to be told that I "shouldn't let him act like that." [And this happens to me at times.] Merely making statements like that shows that someone doesn't understand even a minute fraction of what it's like to live with such a child. "Don't let him pull books off the bookstore shelves" or "Don't let him grab french fries off another child's plate."   It's a classic case of "Easy for YOU to say..." True enough. But everyone's feelings should be taken into consideration. I have seen some things regarding autism first hand, and I know it's not all on the parents. Some things are out of their control.   You have an emotional attachment to this subject, and you should. I hope that you didn't take the bits that struck you emotionally to heart and threw the rest out. Do you see the other side of the coin on this? Yes, I did.   Did you see that I wrote that I didn't believe there was a perfect solution? Perhaps the churchgoers will continue to feel disturbed, and the family will have to leave. Is that fair? No. It's just the way it is.   Of course I'm emotionally affected by stuff like this, because my family is isolated and even shunned by certain segments of society - because my child has autism and we can't always control him. Again...is it fair? No. Does it make me angry? Yes.   But I'm quite rational and can state again that I just don't believe that some situations have a perfect resolution. Does it sound like I'm throwing the rest out? Back to patience with the church. I don't know if we have the whole story. But if the story given is true, then the church lacked understanding. I never denied that. But there is always two sides to a story.   If your son was misbehaving in public, how would you handle it?

[GhostGirl]

He misbehaves in public quite frequently.

 

If you want to call it "misbehaving." I'm sure that's how it comes across...

 

I focus on Stephen, and on trying to calm him - he only melts down when he gets overwhelmed. I don't worry about how he might bother someone else - not at that moment. I try to get him to a more open space as soon as I can - but that's not always possible.

 

I have some small cards that explain what autism is - and I've been known to hand one to someone who insists on staring or making rude comments.

 

And I don't go to church. I would like to, sometimes, but right now I can't find one that will welcome him. So...that's the deal with that.

[liquidcrystalcompass]

QUOTE (GhostGirl @ May 20 2008, 02:45 PM)

He misbehaves in public quite frequently. If you want to call it "misbehaving." I'm sure that's how it comes across... I focus on Stephen, and on trying to calm him - he only melts down when he gets overwhelmed. I don't worry about how he might bother someone else - not at that moment. I try to get him to a more open space as soon as I can - but that's not always possible. I have some small cards that explain what autism is - and I've been known to hand one to someone who insists on staring or making rude comments. And I don't go to church. I would like to, sometimes, but right now I can't find one that will welcome him. So...that's the deal with that.

I use the word "misbehave" because I can't think of another word to use. Yes, I agree that people don't understand. And to the magnitude that you realize that, I have no idea. I don't truly know. Many people don't. And that's the other side of the coin.

 

I don't have any children GG. But I want to have some desperately. I feel the day will come. And I cannot lie, I am afraid that one of them may have autism because the numbers of children with autism increase every year. It's not the numbers that I'm afraid of, it's the percentage.

[owlswing]

I'm sorry in advanced that this might be a bit theological.

 

I am sickened that a Church and its pastor/minister would be that way. I was always taught that a minster/pastor/priest was there to support and understand his congregation and help lead them in understanding and acceptance not makes out casts of them because of their differences. Everyone including that family is there because of there one link their faith and acceptance of that faith yet this seems so far off the map of what is fundamentally begin spoken of during masses.

 

I guess living where we do we are a bit lucky that most of the churches around have masses for children that you expect things to happen. They also have volunteers at the religious education programs that work with those who that need additional assistance.

 

[nettiesaur]

Well here's a good mass story to offset that bad one.

My 1st grade class sits with the 8th grade for mass every Tuesday, so that the 8th grade can help the little ones with their books, and not act like idiots because, well, they are teenagers. My little guy with aspergers is my mass buddy, and he was doing o.k. at communion, but the 8th graders were not, because their teacher was up helping out with communion, and they were getting silly. So I went over to the other side of the pew that I was sitting in to settle down the gigglers, when out of the corner of my eye I see my little buddy about to start something on the other side. The 8th grade teacher was on her way back, so I went back to my spot, only to here my little buddy say "wow, you're like Sonic!" I can only assume that he meant that I was as quick as Sonic the Hedgehog! My giggle for the day.

[Fallen Catkin]

QUOTE (GhostGirl @ May 20 2008, 02:45 PM)

I have some small cards that explain what autism is - and I've been known to hand one to someone who insists on staring or making rude comments. And I don't go to church. I would like to, sometimes, but right now I can't find one that will welcome him. So...that's the deal with that.

The cards are a brilliant idea! Well done GG! I really admire you for that.

 

This thread has touched me sincerely *huggles for GG* My thoughts will be with you and your little sweetheart <3

 

Rachel

[GhostGirl]

QUOTE (Fallen Catkin @ May 21 2008, 06:23 AM)

QUOTE (GhostGirl @ May 20 2008, 02:45 PM) I have some small cards that explain what autism is - and I've been known to hand one to someone who insists on staring or making rude comments. And I don't go to church.  I would like to, sometimes, but right now I can't find one that will welcome him.  So...that's the deal with that. The cards are a brilliant idea! Well done GG! I really admire you for that.   This thread has touched me sincerely *huggles for GG* My thoughts will be with you and your little sweetheart <3   Rachel Thank you.   There are lots of us parents here at TRF dealing with autism every day - CGOB, Rolinda, Rushman, others. So, let's include all of them in that sentiment.

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ May 20 2008, 02:45 PM)

He misbehaves in public quite frequently. If you want to call it "misbehaving."  I'm sure that's how it comes across... I focus on Stephen, and on trying to calm him - he only melts down when he gets overwhelmed.  I don't worry about how he might bother someone else - not at that moment.  I try to get him to a more open space as soon as I can - but that's not always possible. I have some small cards that explain what autism is - and I've been known to hand one to someone who insists on staring or making rude comments. And I don't go to church.  I would like to, sometimes, but right now I can't find one that will welcome him.  So...that's the deal with that.

That's what I do with Tony when he melts down...focus on him. I'm a bit more defensive about people staring though. I get really pissed at them.

 

They sell a button on the Autism Speaks website for kids to wear, although I don't know if Tony would wear one.

 

http://i211.photobucket.com/albums/bb299/rock101dotnet/button_english_large.jpg

 

I think your cards are a great idea. You could incorporate this image on them too GG.

 

As far as church is concerned, I could never take Tony to a "formal" church. We did recently go to a church in Ann Arbor on the U of M campus when we were visiting Sharon's son down there. It was really informal and Tony actually enjoyed the music. There's nothing like that here though.

 

Not to get off on a tangent here, but when I was a kid we were REALLY involved in the Catholic church, but when my parents got a divorce, the priest asked us to stop coming to church because he thought the other parishoners would be uncomfortable with my recently divorced parents there.

 

It would be nice to have a more supportive group surrounding our family sometimes. That's why coming here is so helpful.

Edited May 21, 2008 by Cygnus The God Of Balance

[Lerxster]

Pennsylvania has become the first state in the nation to receive the federal government's permission to spend Medicaid dollars on services that enable autistic adults to live more independently, Gov. Ed Rendell said Thursday.

 

The federal money will help pay for a wide range of services, such as respite care for relatives who care for autistic adults and crisis intervention, Bale said.

 

Advocates for the disabled said the waiver program would allow more autistic adults who need special assistance to avoid institutionalization.

 

http://cbs3.com/local/autism.pennsylvania....d.2.731192.html

 

[GhostGirl]

I have to take Stephen to the dentist tomorrow. NOT looking forward to that.

 

[nettiesaur]

QUOTE (GhostGirl @ Jun 2 2008, 07:56 PM)

I have to take Stephen to the dentist tomorrow. NOT looking forward to that.

After the weekend you had, I totally understand(I read your blog).

[GhostGirl]

QUOTE (nettiesaur @ Jun 2 2008, 08:44 PM)

QUOTE (GhostGirl @ Jun 2 2008, 07:56 PM) I have to take Stephen to the dentist tomorrow.  NOT looking forward to that. After the weekend you had, I totally understand(I read your blog). Thank you for reading it...that's where I go when my thoughts won't stay inside my head any longer.   As for the dentist...SUCCESS!!!     They used Versed to calm him down and it worked like a charm. He wiggled a bit, but he got a VERY thorough cleaning and exam. The dentist said that Stephen's teeth and gums were in remarkably good shape - he said that he wished the typical kids he sees had teeth this healthy!   I was like   He said usually he gets autistic kids to come in 3 or 4 times a year, but that Stephen doesn't need to come back for six months, just like any other child.   He's still very woozy and stumbly - he acts like he's tossed back a few. But he's on the couch with his stuffed Jiminy Cricket and his quilt, and he's so cute and sweet right now.   What a relief!!!

[1-0-0-1-0-0-1]

QUOTE (GhostGirl @ Jun 3 2008, 11:14 AM)

QUOTE (nettiesaur @ Jun 2 2008, 08:44 PM) QUOTE (GhostGirl @ Jun 2 2008, 07:56 PM) I have to take Stephen to the dentist tomorrow.  NOT looking forward to that. After the weekend you had, I totally understand(I read your blog). Thank you for reading it...that's where I go when my thoughts won't stay inside my head any longer.   As for the dentist...SUCCESS!!!     They used Versed to calm him down and it worked like a charm. He wiggled a bit, but he got a VERY thorough cleaning and exam. The dentist said that Stephen's teeth and gums were in remarkably good shape - he said that he wished the typical kids he sees had teeth this healthy!   I was like   He said usually he gets autistic kids to come in 3 or 4 times a year, but that Stephen doesn't need to come back for six months, just like any other child.   He's still very woozy and stumbly - he acts like he's tossed back a few. But he's on the couch with his stuffed Jiminy Cricket and his quilt, and he's so cute and sweet right now.   What a relief!!! NICE! Just like the last haircut, what could have been a traumatic experience for all involved winds up being no big deal.   Oh and, don't bogart the Versed! Pass it over here!

[GhostGirl]

on the Versed...

 

I'm wearing my DSOTM Floyd shirt, and after Stephen got finished at the dentist he kept sitting in my lap and staring at the rainbow...it was like, "Far out, man..." It was so funny.

[Alsgalpal]

M, I just read part of your blog.

 

 

I had no idea how rough it could be. My heart is breaking for the experiences of your daily life. I knew it was hard on you, but to view it from your perspective sheds a whole new light. I wish I could make it better. I wish I could make everything ok. I wish there was something I could do for you and your family, especially after all those times you were there for me in my rough patch.

 

I wish I could make everything alright. If I could wave my magic wand.

 

I admire your strength. I admire your will, and your courage. I wish I was as good of a mother as you are. Sometimes I get tried, and I lose it, but, man, I need to learn how to buck up and be strong.

 

I am going to come back and read some more when I get home. You have my love and support. I am always here for you. I may not understand wholy, but I am always willing to listen.

 

What a fool I have been.

[GhostGirl]

QUOTE (Alsgalpal @ Jun 3 2008, 10:30 AM)

M, I just read part of your blog. I had no idea how rough it could be. My heart is breaking for the experiences of your daily life. I knew it was hard on you, but to view it from your perspective sheds a whole new light. I wish I could make it better. I wish I could make everything ok. I wish there was something I could do for you and your family, especially after all those times you were there for me in my rough patch. I wish I could make everything alright. If I could wave my magic wand. I admire your strength. I admire your will, and your courage. I wish I was as good of a mother as you are. Sometimes I get tried, and I lose it, but, man, I need to learn how to buck up and be strong. I am going to come back and read some more when I get home. You have my love and support. I am always here for you. I may not understand wholy, but I am always willing to listen. What a fool I have been.

Kris

 

Please, don't let my meandering thoughts make you feel bad about anything. Sometimes I hesitate to be so open, but it really does help me to write it out.

 

You're a great mom, and don't ever say anything different. You love your girls and that is the key.

 

Thank you for your support - and if you find that magic wand, give me a yell.

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ Jun 3 2008, 10:24 AM)

on the Versed... I'm wearing my DSOTM Floyd shirt, and after Stephen got finished at the dentist he kept sitting in my lap and staring at the rainbow...it was like, "Far out, man..." It was so funny.

That's funny.

 

Glad the dentist visit went well GG!

 

Tony did pretty good at his last dentist visit. He's getting some cavities that need to be taken care of.

 

Don't know how we're going to handle that, but we will.

 

One Little Victory at a time!

[Lerxist]

Please excuse the intrusion. I'm new here and was exploring the site and came across this thread. My son was diagnosed with Asperger's and ADHD at the age of 3. He's now 10.

 

I started reading this thread form the beginning but had to stop at page 8 when I was a little overcome by the photo of Stephen lying on his bed with the most innocent look on his face. Oh, by the way, Ghost Girl, with as much respect as I can possibly convey, I salute you and wish you strength and power to face each new day and each new event.

 

I know there are others on this board who are also touched by Autism. I hope to get to know you so we can share our triumphs and console our difficult times.

 

I will also fly the Autism Awareness banner in my sig. to show support and just let all of you know we're all in the same boat but now you have another rower!

[Rushman14]

QUOTE (Lerxist @ Jun 4 2008, 04:06 PM)

Please excuse the intrusion. I'm new here and was exploring the site and came across this thread. My son was diagnosed with Asperger's and ADHD at the age of 3. He's now 10. I started reading this thread form the beginning but had to stop at page 8 when I was a little overcome by the photo of Stephen lying on his bed with the most innocent look on his face. Oh, by the way, Ghost Girl, with as much respect as I can possibly convey, I salute you and wish you strength and power to face each new day and each new event. I know there are others on this board who are also touched by Autism. I hope to get to know you so we can share our triumphs and console our difficult times. I will also fly the Autism Awareness banner in my sig. to show support and just let all of you know we're all in the same boat but now you have another rower!

welcome Lerxist!

 

as the father a 4 year old year old girl with autism, this thread can sometimes be tough to read, but it's also filled with alot of positives and stories of personal triumphs. Ghost Girl is our hero here.

[Lerxist]

QUOTE (Rushman14 @ Jun 4 2008, 06:15 PM)

QUOTE (Lerxist @ Jun 4 2008, 04:06 PM) Please excuse the intrusion.  I'm new here and was exploring the site and came across this thread.  My son was diagnosed with Asperger's and ADHD at the age of 3.  He's now 10. I started reading this thread form the beginning but had to stop at page 8 when I was a little overcome by the photo of Stephen lying on his bed with the most innocent look on his face.  Oh, by the way, Ghost Girl, with as much respect as I can possibly convey, I salute you and wish you strength and power to face each new day and each new event. I know there are others on this board who are also touched by Autism.  I hope to get to know you so we can share our triumphs and console our difficult times. I will also fly the Autism Awareness banner in my sig. to show support and just let all of you know we're all in the same boat but now you have another rower! welcome Lerxist!   as the father a 4 year old year old girl with autism, this thread can sometimes be tough to read, but it's also filled with alot of positives and stories of personal triumphs. Ghost Girl is our hero here. Thanks for the welcome Rushman! Having a girl with Autism is pretty unusual. I'm sure the challenges are not.

[GhostGirl]

Welcome, Lerxist - and thanks for your support of the autism cause. I know that each family touched by autism has its own challenges. I wish you all the best, and please let me know if I can do anything to help.

 

All parents who strive to love their kids fully - especially the ones who have children with autism - are heroes.

 

[Lerxist]

QUOTE (GhostGirl @ Jun 4 2008, 08:34 PM)

Welcome, Lerxist - and thanks for your support of the autism cause.  I know that each family touched by autism has its own challenges.  I wish you all the best, and please let me know if I can do anything to help. All parents who strive to love their kids fully - especially the ones who have children with autism - are heroes.

Thanks for the welcome Ghost Girl! As far as doing something to help... you already have, now if I can just get through the remaining 45 pages...

 

to you and all you have done!

[iluvgeddy05]

Jenny McCarthy is at it again.

 

Green Our Vaccines rally is being led by her and Jim, urging to eliminate toxins from vaccines. More info here:

 

http://talkaboutcuringautism.org/jenny/dc-...cines-rally.htm

[Cygnus The God Of Balance]

QUOTE (Lerxist @ Jun 4 2008, 06:06 PM)

Please excuse the intrusion. I'm new here and was exploring the site and came across this thread. My son was diagnosed with Asperger's and ADHD at the age of 3. He's now 10. I started reading this thread form the beginning but had to stop at page 8 when I was a little overcome by the photo of Stephen lying on his bed with the most innocent look on his face. Oh, by the way, Ghost Girl, with as much respect as I can possibly convey, I salute you and wish you strength and power to face each new day and each new event. I know there are others on this board who are also touched by Autism. I hope to get to know you so we can share our triumphs and console our difficult times. I will also fly the Autism Awareness banner in my sig. to show support and just let all of you know we're all in the same boat but now you have another rower!

Welcome Lerxist.

 

I too have a 10 year old son, Tony, who has Autism. Becoming friends (although we've never met) with GG and the others here who have Autistic children here has been a great source of comfort for me. It's been nice to share our triumphs (as I refer to as "One Little Victory" at a time) and to help each other through the tough times.

 

Please feel free to share as much as you want here.