Autism

[rushgoober]

God bless you and Stephen and your family Michelle.

 

I'll watch the video as soon as I can...

[priest_of_syrinx]

My sister is going into special education and is a junior this year, so she might be working with kids with autism. I watched the video and it really does help you understand.

[GhostGirl]

QUOTE (rushgoober @ Aug 15 2007, 10:23 AM)

God bless you and Stephen and your family Michelle. I'll watch the video as soon as I can...

Thank you, Gary.

[GhostGirl]

QUOTE (priest_of_syrinx @ Aug 15 2007, 10:36 AM)

My sister is going into special education and is a junior this year, so she might be working with kids with autism. I watched the video and it really does help you understand.

You might show it to your sister...if she could share it with other students I think that would be awesome.

 

Thanks for watching it.

[Ya_Big_Tree]

QUOTE (GhostGirl @ Aug 15 2007, 09:47 AM)

QUOTE (Ya_Big_Tree @ Aug 14 2007, 02:36 PM) I used to date someone with Asperger's Syndrome which is a type of autism. It was quite a struggle at times, but I think his relationship with me helped him to become more socialable in a lot of ways. I definitely was able to help his rage problems and was kinda the medium for him and his parents. While he has amazingly understanding parents they at one point did feel like giving up on him because he was being so stubborn.  So I did have to step in and plead his case for him on a number of occasions.  It's just unfortunate that we had to break up because he was feeling overwhelmed by everything in his life.  But maybe things might work out in the end. I'll always have feelings for him and he'll always have a soft spot in my heart.  Sorry if this was a lil bit sappy, but this topic is very close to me, since I love this person a lot.  Ya...I'm sorry, I didn't mean to let your post slip by...   Thank you for sharing this story, and for standing by this guy when he needed someone. Advocacy is SO important, and I admire you for being there for him. No I admire you for being such a supportive mother to your child. It's because of people like you and my friend's parents who spent such a large amount of extra time and energy to understanding their children that they grow up to become self reliant and have their own independence as adults. My heart goes out to you and I know he's gonna be just fine.

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

[GhostGirl]

[sundog]

[GhostGirl]

Moral support is SO important...I couldn't make it without it.

 

Nice addition to your sig, 1001. Thanks from Stephen.

 

I used to have this in my sig...it still applies.

http://img.photobucket.com/albums/v297/RushBabe/Board%20Pics/Newsig.jpg

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

QUOTE (GhostGirl @ Aug 16 2007, 09:56 AM)

Moral support is SO important...I couldn't make it without it. Nice addition to your sig, 1001. Thanks from Stephen. I used to have this in my sig...it still applies. http://img.photobucket.com/albums/v297/RushBabe/Board%20Pics/Newsig.jpg

Funny, I was thinking about that video (and Stephen) yesterday and that song popped into my head, and there it is.

[Cygnus The God Of Balance]

I hadn't seen this thread before. I knew that GG has a son with Autism. So do I. Tony is 9 now. And what GG has in her signature is true. I've always said I would love to be in Tony's head for 5 minutes, to see how he sees the world and what everything means to him.

 

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_0135.jpg

Tony & Papa on Christmas 2005

 

The movie Autism Everyday is powerful and very true. Not all Autistic kids are exactly the same, but there are many similarities. People can't even imagine the stress and anxiety a parent of an Autistic child feels. I worry everyday about Tony, and what his life will be like in 10, 20, 30 years, when I'm dead and gone.

 

GG, if you have not, you should set up a "Special Needs Trust" for your son. It gives me great peace of mind that he'll be taken care of financially after I'm gone, without adversely affecting his Medicare/Medicaid and SSI. If you need info on it, let me know.

 

I get sickened by parents who seem to take for granted their "regular" children. I'd give anything, and I mean anything, to have my son not be Autistic.

 

Please, pray for a miracle, not for me, not for GG, but for the millions of little minds that are caged by Autism.

[GhostGirl]

Cygnus....he is adorable.

 

Please send me some info about the trust...I don't know enough about them. You can PM me, if you have time.

 

It's SO awful that so many kids are affected, but it gives me peace to know that as parents we're not alone.

 

Big hugs to Tony.

[Milton Bridge]

QUOTE (GhostGirl @ Aug 16 2007, 03:52 PM)

Cygnus....he is adorable. Please send me some info about the trust...I don't know enough about them. You can PM me, if you have time. It's SO awful that so many kids are affected, but it gives me peace to know that as parents we're not alone. Big hugs to Tony.

GG

 

I suspect he means a trust in terms of your will ( a very cheery thought).

 

My best friends child has special needs and I am a Trustee which means me and his aunt will administer any funds that come to him in the future.

 

I think what you are doing in spreading knowledge and improving perception of autism and its related conditions is great and from the outside you do appear to have a great family.

[GhostGirl]

QUOTE (Milton Bridge @ Aug 16 2007, 10:00 AM)

QUOTE (GhostGirl @ Aug 16 2007, 03:52 PM) Cygnus....he is adorable. Please send me some info about the trust...I don't know enough about them.  You can PM me, if you have time. It's SO awful that so many kids are affected, but it gives me peace to know that as parents we're not alone. Big hugs to Tony. GG   I suspect he means a trust in terms of your will ( a very cheery thought).   My best friends child has special needs and I am a Trustee which means me and his aunt will administer any funds that come to him in the future.   I think what you are doing in spreading knowledge and improving perception of autism and its related conditions is great and from the outside you do appear to have a great family. Yes, that's right MB...there are special ones for kids with special needs, and I keep meaning to look into that. This will spur me on to action.   Thanks for your kind words.

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ Aug 16 2007, 09:52 AM)

Cygnus....he is adorable. Please send me some info about the trust...I don't know enough about them. You can PM me, if you have time. It's SO awful that so many kids are affected, but it gives me peace to know that as parents we're not alone. Big hugs to Tony.

GG, I think he's a cutie too. Thanks.

 

I will definately get some stuff together for you. It's a pretty easy process, and we had to hire a special lawyer who does these kinds of trusts. The worse part is trying to plan for your death, but you never know when it's going to happen.

 

I'll PM you when I pull the stuff together.

[GhostGirl]

QUOTE (Cygnus The God Of Balance @ Aug 16 2007, 10:09 AM)

QUOTE (GhostGirl @ Aug 16 2007, 09:52 AM) Cygnus....he is adorable. Please send me some info about the trust...I don't know enough about them.  You can PM me, if you have time. It's SO awful that so many kids are affected, but it gives me peace to know that as parents we're not alone. Big hugs to Tony. GG, I think he's a cutie too. Thanks.   I will definately get some stuff together for you. It's a pretty easy process, and we had to hire a special lawyer who does these kinds of trusts. The worse part is trying to plan for your death, but you never know when it's going to happen.   I'll PM you when I pull the stuff together. Wonderful. Thank you. Nice additions to your sig, BTW.

[Prime Mover and Shaker]

I just made it through all of this.... I had no idea that autism was linked to mercury (and in vaccines - horrible).

 

My wife and I talked about this for a while this evening. Our boy had many of his vaccines in 2000 & 2001. The risk level is alarming. You're right, GG - where is the general outcry?

 

I wish I had something constructive to say other than "this has really affected me".

 

It was really something to read 2+ years worth of posts and progress. I jut can't imagine the emotional roller coaster as a parent.

 

Good for you for staying so informed and dedicated!

 

My thoughts & prayers are with you guys.

 

[GhostGirl]

QUOTE (Prime Mover and Shaker @ Aug 23 2007, 04:58 AM)

I just made it through all of this.... I had no idea that autism was linked to mercury (and in vaccines - horrible). My wife and I talked about this for a while this evening. Our boy had many of his vaccines in 2000 & 2001. The risk level is alarming. You're right, GG - where is the general outcry? I wish I had something constructive to say other than "this has really affected me". It was really something to read 2+ years worth of posts and progress. I jut can't imagine the emotional roller coaster as a parent. Good for you for staying so informed and dedicated! My thoughts & prayers are with you guys.

Thank you so much for reading the thread. Pass on any information you can to people around you who have kids...it may not seem like much, but believe me, it is.

 

I'm still waiting for the day when I don't have to deal with situations like this:

 

I take Stephen with me to Publix to get groceries. He knows that he gets to buy one small bag of Lays potato chips in the checkout aisle. I always grab a few more bags to take home for "treats" for him, but I tell the cashier to quickly bag them up so he doesn't see them, or else he'll want to eat them all at once. Meanwhile Stephen sits in the grocery cart, clutching his chips and usually flapping his hands. When she looks baffled I say, with a smile, "He has autism, so we have to do some special things with him."

 

And then...here it comes...

 

"Oh....yeah....umm...what IS autism, exactly?"

 

 

So she gets the 20 second mini-explanation and we move on. One day I hope people will understand.

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ Aug 23 2007, 08:54 AM)

QUOTE (Prime Mover and Shaker @ Aug 23 2007, 04:58 AM) I just made it through all of this.... I had no idea that autism was linked to mercury (and in vaccines - horrible).  My wife and I talked about this for a while this evening.  Our boy had many of his vaccines in 2000 & 2001.  The risk level is alarming.  You're right, GG - where is the general outcry? I wish I had something constructive to say other than "this has really affected me". It was really something to read 2+ years worth of posts and progress.  I jut can't imagine the emotional roller coaster as a parent. Good for you for staying so informed and dedicated! My thoughts & prayers are with you guys. Thank you so much for reading the thread. Pass on any information you can to people around you who have kids...it may not seem like much, but believe me, it is.   I'm still waiting for the day when I don't have to deal with situations like this:   I take Stephen with me to Publix to get groceries. He knows that he gets to buy one small bag of Lays potato chips in the checkout aisle. I always grab a few more bags to take home for "treats" for him, but I tell the cashier to quickly bag them up so he doesn't see them, or else he'll want to eat them all at once. Meanwhile Stephen sits in the grocery cart, clutching his chips and usually flapping his hands. When she looks baffled I say, with a smile, "He has autism, so we have to do some special things with him."   And then...here it comes...   "Oh....yeah....umm...what IS autism, exactly?"     So she gets the 20 second mini-explanation and we move on. One day I hope people will understand. With Tony it's Little Debbie snacks. He always has to get them. Either the individual ones or a box. It also used to include a box (usually the big one) of Crayola Crayons. Not that he colors so much, as he likes to take the wrappers off each and every one, and then never use them. We would have BOXES of what I called "naked crayons" around the house. I've FINALLY got him off that kick. Except he'll still strip the crayons the kids get at a restaurant.

[GhostGirl]

We have other stuff like that too...sometimes it can be funny, sometimes it's just frustrating and heartbreaking, isn't it Cygnus?

 

We used to buy the bigger bags of chips (the family size) and Stephen would eat the ENTIRE bag. We had to stop buying them and even now I have to avoid that part of the store. I should have the "Mission: Impossible" music going as my grocery shopping theme song. Avoid the big bags of chips...try not to go past the doughnuts... ARGH...a surprise display of powdered sugar mini-doughnuts and Stephen has already opened a bag of them...

 

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ Aug 23 2007, 11:15 AM)

We have other stuff like that too...sometimes it can be funny, sometimes it's just frustrating and heartbreaking, isn't it Cygnus? We used to buy the bigger bags of chips (the family size) and Stephen would eat the ENTIRE bag.  We had to stop buying them and even now I have to avoid that part of the store.  I should have the "Mission: Impossible" music going as my grocery shopping theme song.  Avoid the big bags of chips...try not to go past the doughnuts...  ARGH...a surprise display of powdered sugar mini-doughnuts and Stephen has already opened a bag of them...

That's funny. It's comforting knowing that I'm not the only one who has these problems. Next time I'm in the store with Tony, I'm going to think about the Mission Impossible theme.

 

But you're right, it can be funny and many times heartbreaking.

Edited August 23, 2007 by Cygnus The God Of Balance

[Rush!]

Wow...never saw this thread.

 

My brother Matthew, 11, turning 12 in October, is autistic. He is diagnosed with a mild case of PDD.

 

He's very difficult to deal with at times, and other times he's not. He has a very hard time making eye contact with strangers, and he usually hides behind my Mom whenever we meet with someone new. He's fine with our close family and relatives, though. He has no friends, nor does he want to make any friends. He mostly enjoys eating, watching TV, and playing video games. His obsession is fans... he loves all electrical appliances as well as garage doors.

 

I don't want to think about what it will be like for him as he gets older... when puberty comes along... and he has to go out and get a job. I fear for him.

[GhostGirl]

QUOTE (Rush! @ Aug 23 2007, 01:03 PM)

Wow...never saw this thread. My brother Matthew, 11, turning 12 in October, is autistic. He is diagnosed with a mild case of PDD. He's very difficult to deal with at times, and other times he's not. He has a very hard time making eye contact with strangers, and he usually hides behind my Mom whenever we meet with someone new. He's fine with our close family and relatives, though. He has no friends, nor does he want to make any friends. He mostly enjoys eating, watching TV, and playing video games. His obsession is fans... he loves all electrical appliances as well as garage doors. I don't want to think about what it will be like for him as he gets older... when puberty comes along... and he has to go out and get a job. I fear for him.

If he's mildly PDD, he'll do okay with a job. Your parents will make sure he has the right kind of vocational services, and he can get set up with a career that focuses on his strengths.

 

Everything's relative, you know? I'd give anything if Stephen was mildly PDD instead of moderately autistic.

 

I wish your family all the best, Rush!

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ Aug 23 2007, 02:43 PM)

QUOTE (Rush! @ Aug 23 2007, 01:03 PM) Wow...never saw this thread. My brother Matthew, 11, turning 12 in October, is autistic. He is diagnosed with a mild case of PDD. He's very difficult to deal with at times, and other times he's not. He has a very hard time making eye contact with strangers, and he usually hides behind my Mom whenever we meet with someone new. He's fine with our close family and relatives, though. He has no friends, nor does he want to make any friends. He mostly enjoys eating, watching TV, and playing video games. His obsession is fans... he loves all electrical appliances as well as garage doors. I don't want to think about what it will be like for him as he gets older... when puberty comes along... and he has to go out and get a job. I fear for him. If he's mildly PDD, he'll do okay with a job. Your parents will make sure he has the right kind of vocational services, and he can get set up with a career that focuses on his strengths.   Everything's relative, you know? I'd give anything if Stephen was mildly PDD instead of moderately autistic.   I wish your family all the best, Rush! I don't know how many times I've said "I'd give anything if Tony were...."   So GG, how severe is Stephen? Is he verbal at all? Tony is verbal, but a lot of his is echolalia. We've worked hard on "I want..." And he knows his colors, animals, and can do eyes, ears, nose, etc.   It's a constant struggle. I never would have dreamed two, three years ago that Tony would be where he is today. He's made some great strides, so we keep pushing him further to try to do more. He really gets pissed when we push, but I've learned that he just automatically gets mad so I'll back off. So I try to push him a little further each time, before he completely melts down.   I firmly believe with all my heart & soul that there will be a cure for Autism. I think the key is stem cell research. I think that's where the answer will come.   They've cured so many other things, that I just know this is coming. I know it.

[GhostGirl]

QUOTE (Cygnus The God Of Balance @ Aug 23 2007, 03:01 PM)

QUOTE (GhostGirl @ Aug 23 2007, 02:43 PM) QUOTE (Rush! @ Aug 23 2007, 01:03 PM) Wow...never saw this thread. My brother Matthew, 11, turning 12 in October, is autistic. He is diagnosed with a mild case of PDD. He's very difficult to deal with at times, and other times he's not. He has a very hard time making eye contact with strangers, and he usually hides behind my Mom whenever we meet with someone new. He's fine with our close family and relatives, though. He has no friends, nor does he want to make any friends. He mostly enjoys eating, watching TV, and playing video games. His obsession is fans... he loves all electrical appliances as well as garage doors. I don't want to think about what it will be like for him as he gets older... when puberty comes along... and he has to go out and get a job. I fear for him. If he's mildly PDD, he'll do okay with a job. Your parents will make sure he has the right kind of vocational services, and he can get set up with a career that focuses on his strengths.   Everything's relative, you know? I'd give anything if Stephen was mildly PDD instead of moderately autistic.   I wish your family all the best, Rush! I don't know how many times I've said "I'd give anything if Tony were...."   So GG, how severe is Stephen? Is he verbal at all? Tony is verbal, but a lot of his is echolalia. We've worked hard on "I want..." And he knows his colors, animals, and can do eyes, ears, nose, etc.   It's a constant struggle. I never would have dreamed two, three years ago that Tony would be where he is today. He's made some great strides, so we keep pushing him further to try to do more. He really gets pissed when we push, but I've learned that he just automatically gets mad so I'll back off. So I try to push him a little further each time, before he completely melts down.   I firmly believe with all my heart & soul that there will be a cure for Autism. I think the key is stem cell research. I think that's where the answer will come.   They've cured so many other things, that I just know this is coming. I know it. Stephen is becoming verbal...but yes, a LOT of echolalia and what we call "Stephenese." He knows his colors, and can count up to 20, knows the alphabet (upper and lowercase), etc. Still working on writing his name, but we're starting to move him to the computer...maybe typing will be his strength, we're not sure.   He loves Thomas the Tank Engine, so a lot of the vocalizations we hear are verbatim quotes from books or videos...and you have to KNOW Stephen well to be able to understand what he's saying, because his pronunciation isn't good. The communication center of his brain stopped developing at around 15 months, so his speech is very much like a toddler. He doesn't stay "Stev-un," for his name...he says, "Steeee-yun." Stuff like that.   Some of his favorite foods he says pretty clearly, "Cheese puffs," "Pingles,"(Pringles chips) and "affles" (waffles). At the end of the day sometimes he wants to put his shoes on and go somewhere, and when I say, "No, we're all done with shoes today," he'll walk around for five minutes singing, "Shoes? All done...shoes...all done..."