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GhostGirl
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QUOTE (GhostGirl @ Apr 6 2011, 11:21 AM)
QUOTE (barney_rebel @ Apr 6 2011, 09:05 AM)
http://www.cbc.ca/news/canada/montreal/sto...search-end.html

sad

That is the nightmare of every parent of a severely autistic child. Once, just once, Stephen got away from me at a bookstore, and the minute or so it took to find him felt like an eternity, with all kinds of horrible scenarios going through my mind - he can hear, but he can't speak functionally. Anyone could've grabbed him and walked out, and he would've never made a sound.

 

My heart breaks for this family.

This is so tragic...I worry every day of something like this happening sad.gif

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So this Sunday, Niall will be in the New Hampshire newspaper, the Union Leader smile.gif The reporter, Shawne Wickham, came in on Thursday last week during Niall's ABA therapy services, along with a photographer and did an interview with us, while the photographer took photos. The interview was on his use of his therapists iPad during his ABA therapy.

 

I'm so excited for the article, for the attention that this is going to get not only for Easter Seals, but also positive attention for the therapeutic use of the iPad - hopefully this will start the ball rolling for individual funding to be allowed for acquiring iPads for children on the spectrum!

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QUOTE (LakesideMaiden @ Apr 12 2011, 12:26 AM)
So this Sunday, Niall will be in the New Hampshire newspaper, the Union Leader smile.gif The reporter, Shawne Wickham, came in on Thursday last week during Niall's ABA therapy services, along with a photographer and did an interview with us, while the photographer took photos. The interview was on his use of his therapists iPad during his ABA therapy.

I'm so excited for the article, for the attention that this is going to get not only for Easter Seals, but also positive attention for the therapeutic use of the iPad - hopefully this will start the ball rolling for individual funding to be allowed for acquiring iPads for children on the spectrum!

Wonderful. I hope it helps!

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QUOTE (GhostGirl @ Apr 12 2011, 10:49 AM)
QUOTE (LakesideMaiden @ Apr 12 2011, 12:26 AM)
So this Sunday, Niall will be in the New Hampshire newspaper, the Union Leader smile.gif  The reporter, Shawne Wickham, came in on Thursday last week during Niall's ABA therapy services, along with a photographer and did an interview with us, while the photographer took photos.  The interview was on his use of his therapists iPad during his ABA therapy. 

I'm so excited for the article, for the attention that this is going to get not only for Easter Seals, but also positive attention for the therapeutic use of the iPad - hopefully this will start the ball rolling for individual funding to be allowed for acquiring iPads for children on the spectrum!

Wonderful. I hope it helps!

Hope so too! Easter Seals also hopes that someone will read the article and donate one to Niall smile.gif

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Big Red Safety Box

 

Autism Speaks posted this on Facebook. It's a safety box full of things for the family of a child with autism who is a wanderer or an eloper. Mine used to be!

 

Passing it along in case any of our other autism families could use such a great resource. I could have back in the day. Seems they are GIVING IT AWAY! go get it!

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QUOTE (LakesideMaiden @ Apr 12 2011, 02:22 AM)
QUOTE (GhostGirl @ Apr 6 2011, 11:21 AM)
QUOTE (barney_rebel @ Apr 6 2011, 09:05 AM)
http://www.cbc.ca/news/canada/montreal/sto...search-end.html

sad

That is the nightmare of every parent of a severely autistic child. Once, just once, Stephen got away from me at a bookstore, and the minute or so it took to find him felt like an eternity, with all kinds of horrible scenarios going through my mind - he can hear, but he can't speak functionally. Anyone could've grabbed him and walked out, and he would've never made a sound.

 

My heart breaks for this family.

This is so tragic...I worry every day of something like this happening sad.gif

Just a follow-up...not a good ending.

 

http://www.torontosun.com/2011/05/10/body-...nd-on-riverbank

 

Sad...

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QUOTE (barney_rebel @ May 10 2011, 09:15 PM)
QUOTE (LakesideMaiden @ Apr 12 2011, 02:22 AM)
QUOTE (GhostGirl @ Apr 6 2011, 11:21 AM)
QUOTE (barney_rebel @ Apr 6 2011, 09:05 AM)
http://www.cbc.ca/news/canada/montreal/sto...search-end.html

sad

That is the nightmare of every parent of a severely autistic child. Once, just once, Stephen got away from me at a bookstore, and the minute or so it took to find him felt like an eternity, with all kinds of horrible scenarios going through my mind - he can hear, but he can't speak functionally. Anyone could've grabbed him and walked out, and he would've never made a sound.

 

My heart breaks for this family.

This is so tragic...I worry every day of something like this happening sad.gif

Just a follow-up...not a good ending.

 

http://www.torontosun.com/2011/05/10/body-...nd-on-riverbank

 

Sad...

Damn!

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QUOTE (barney_rebel @ May 10 2011, 10:15 PM)
QUOTE (LakesideMaiden @ Apr 12 2011, 02:22 AM)
QUOTE (GhostGirl @ Apr 6 2011, 11:21 AM)
QUOTE (barney_rebel @ Apr 6 2011, 09:05 AM)
http://www.cbc.ca/news/canada/montreal/sto...search-end.html

sad

That is the nightmare of every parent of a severely autistic child. Once, just once, Stephen got away from me at a bookstore, and the minute or so it took to find him felt like an eternity, with all kinds of horrible scenarios going through my mind - he can hear, but he can't speak functionally. Anyone could've grabbed him and walked out, and he would've never made a sound.

 

My heart breaks for this family.

This is so tragic...I worry every day of something like this happening sad.gif

Just a follow-up...not a good ending.

 

http://www.torontosun.com/2011/05/10/body-...nd-on-riverbank

 

Sad...

sad.gif sad.gif sad.gif sad.gif sad.gif sad.gif sad.gif sad.gif sad.gif

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I know the vibe has been sad lately, but I wrote about another story with a tragic ending on my blog.

 

Paying the price

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QUOTE (GhostGirl @ May 11 2011, 01:45 PM)
I know the vibe has been sad lately, but I wrote about another story with a tragic ending on my blog.

Paying the price

Now this was a good read.

I read this an your new June blog GG. The situation with Burger King being closed was actually pretty humorous. Two autistic people I know also obsess over fast food, any idea why that is?

 

 

Though my last post was kind of flaky, I feel like giving another stab at this thread..

 

California is flooded with autism, and it's disgusting that so many harass, tease, and poke at the people. Well, while those idiots have their fun, I can proudly state that I've had (and am continuing to make) a good impact on three autistic people's lives. I'm practically a go-to guy of theirs. It makes me feel very good, and partly undeserving when the parent's (or others) thank me, because the help I offer is simply friendship. To generally explain, I offer comfort, I listen, be patient, and accept them every hour I'm around them. Don't get me wrong - I'm no expert or wizard, some autistic people I've also attempted to befriend out of interest I've failed to do. And in one instance, there was one autistic child I couldn't handle (I was babysitting him, and he ran around naked, then hugged my leg.. He was about eight year old. Later, his mom told me it was one of his habits) Some are definitely more social than others. The varying personalities and actions in each of them is amazing, and they, like everyone else, have much to offer.

 

 

I guess I could explain more about how I've helped three of these people, how they've reacted, and how it's all benefited me as well. I rarely force them to do anything - so I'm not like a mentor, and that is probably the reason they like me, I'm the "fun guy!" Anyone could do what I'm doing giving the opportunity, and willing the time.

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QUOTE (Kenneth @ Jun 17 2011, 04:52 PM)
QUOTE (GhostGirl @ May 11 2011, 01:45 PM)
I know the vibe has been sad lately, but I wrote about another story with a tragic ending on my blog.

Paying the price

Now this was a good read.

I read this an your new June blog GG. The situation with Burger King being closed was actually pretty humorous. Two autistic people I know also obsess over fast food, any idea why that is?

 

 

Though my last post was kind of flaky, I feel like giving another stab at this thread..

 

California is flooded with autism, and it's disgusting that so many harass, tease, and poke at the people. Well, while those idiots have their fun, I can proudly state that I've had (and am continuing to make) a good impact on three autistic people's lives. I'm practically a go-to guy of theirs. It makes me feel very good, and partly undeserving when the parent's (or others) thank me, because the help I offer is simply friendship. To generally explain, I offer comfort, I listen, be patient, and accept them every hour I'm around them. Don't get me wrong - I'm no expert or wizard, some autistic people I've also attempted to befriend out of interest I've failed to do. And in one instance, there was one autistic child I couldn't handle (I was babysitting him, and he ran around naked, then hugged my leg.. He was about eight year old. Later, his mom told me it was one of his habits) Some are definitely more social than others. The varying personalities and actions in each of them is amazing, and they, like everyone else, have much to offer.

 

 

I guess I could explain more about how I've helped three of these people, how they've reacted, and how it's all benefited me as well. I rarely force them to do anything - so I'm not like a mentor, and that is probably the reason they like me, I'm the "fun guy!" Anyone could do what I'm doing giving the opportunity, and willing the time.

I can see why the BK thing might seem humorous...but in reality it was awful. Being trapped in a vehicle with a child who's screaming like he's being stabbed isn't funny by any means. My nerves were in tatters by the end.

 

But, I appreciate your comments and appreciate you reading my blog. Sometimes it feels like I'm writing to no one.

 

As far as the obsessing over fast food (or any number of other things)? That's just autism. It's a classic symptom.

 

Kudos to you for trying to help people with this godawful disease/syndrome/whatever it is.

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QUOTE (Kenneth @ Jun 17 2011, 04:52 PM)
QUOTE (GhostGirl @ May 11 2011, 01:45 PM)
I know the vibe has been sad lately, but I wrote about another story with a tragic ending on my blog.

Paying the price

Now this was a good read.

I read this an your new June blog GG. The situation with Burger King being closed was actually pretty humorous. Two autistic people I know also obsess over fast food, any idea why that is?

 

 

Though my last post was kind of flaky, I feel like giving another stab at this thread..

 

California is flooded with autism, and it's disgusting that so many harass, tease, and poke at the people. Well, while those idiots have their fun, I can proudly state that I've had (and am continuing to make) a good impact on three autistic people's lives. I'm practically a go-to guy of theirs. It makes me feel very good, and partly undeserving when the parent's (or others) thank me, because the help I offer is simply friendship. To generally explain, I offer comfort, I listen, be patient, and accept them every hour I'm around them. Don't get me wrong - I'm no expert or wizard, some autistic people I've also attempted to befriend out of interest I've failed to do. And in one instance, there was one autistic child I couldn't handle (I was babysitting him, and he ran around naked, then hugged my leg.. He was about eight year old. Later, his mom told me it was one of his habits) Some are definitely more social than others. The varying personalities and actions in each of them is amazing, and they, like everyone else, have much to offer.

 

 

I guess I could explain more about how I've helped three of these people, how they've reacted, and how it's all benefited me as well. I rarely force them to do anything - so I'm not like a mentor, and that is probably the reason they like me, I'm the "fun guy!" Anyone could do what I'm doing giving the opportunity, and willing the time.

Kudos! Kudos! Kudos! Way to go...it's an awesome thing you're doing! I've got my own son who's an Aspie and he's enough of a challenge (though worth every minute), so I can't really imagine what it's like for those whose offspring are further along the spectrum...only empathize...

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I was watching a NOVA episode on music and it featured a blind musical savant. It made me think of my friend, Teddy. Teddy has autism and is a musical savant. He is an older man now and can be quite a handful, especially if the weather is dry or if he gets kicked out of an all-you-can-eat buffet for eating nothing but shrimp. Still, he is very enjoyable company.

 

Teddy can play the piano perfectly and makes a little extra cash tuning pianos. All he needs to do is hear a musical piece one time, and he can play it in it's entirety - which is awesome, except that once he starts playing a piece, he refuses to stop until the entire piece is played (so, don't ask him to play Phantom of the Opera unless you're in it for the long haul). Teddy's favorite band has been Rush (ever since I played "The Camera Eye" for him so many years ago - he really enjoyed it's complexity).

 

I remember him getting on the piano and playing this piece that was difficult to make out. It sounded almost like noise...until you really started to listen. I finally realized he was playing "The Camera Eye". But he wasn't playing the melody, he was playing the whole song: the guitars, bass, keyboard and, yes, even the drums. He was playing everything...on the piano. If you want to know what that sounds like, try playing a midi file of The Camera Eye with all the instruments set to "piano" - although I suspect Teddy still made it sound better.

 

Anyway, no real point here. Just a story about my friend I thought I'd share.

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QUOTE (ioc @ Jun 18 2011, 03:21 PM)
I was watching a NOVA episode on music and it featured a blind musical savant. It made me think of my friend, Teddy. Teddy has autism and is a musical savant. He is an older man now and can be quite a handful, especially if the weather is dry or if he gets kicked out of an all-you-can-eat buffet for eating nothing but shrimp. Still, he is very enjoyable company.

Teddy can play the piano perfectly and makes a little extra cash tuning pianos. All he needs to do is hear a musical piece one time, and he can play it in it's entirety - which is awesome, except that once he starts playing a piece, he refuses to stop until the entire piece is played (so, don't ask him to play Phantom of the Opera unless you're in it for the long haul). Teddy's favorite band has been Rush (ever since I played "The Camera Eye" for him so many years ago - he really enjoyed it's complexity).

I remember him getting on the piano and playing this piece that was difficult to make out. It sounded almost like noise...until you really started to listen. I finally realized he was playing "The Camera Eye". But he wasn't playing the melody, he was playing the whole song: the guitars, bass, keyboard and, yes, even the drums. He was playing everything...on the piano. If you want to know what that sounds like, try playing a midi file of The Camera Eye with all the instruments set to "piano" - although I suspect Teddy still made it sound better.

Anyway, no real point here. Just a story about my friend I thought I'd share.

Thanks for sharing! Awesome story...

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This probably gets old but I've got to vent someplace and I don't have the energy for a blog entry.

 

I am so f***ing sick of autism.

 

I'm so tired of not being able to explain really basic things to Stephen, like:

 

*We can't swim when it's raining. We just can't.

*The DVD/VHS tape you have is the SAME THING, the cover just looks different than the one on Amazon.

*School is on Tuesday. Tuesday is a DAY of the WEEK.

*Please, please stop screeching. You are making everyone nervous and on edge.

 

This weekend has been hellish. I can't stand one more thing! It's raining and there's nowhere "safe" to go that Stephen will go along with... My heart is on permanent racing speed, and I get a jolt every time his voice goes up in volume, because I know he's likely to be gearing up for another tantrum.

 

And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home. These phases are hard, but they don't last and don't warrant putting him in a home.

 

I just don't know how to keep going sometimes. I have lots of worries and very little positive stuff going on. There are other issues in the family that make Stephen's problems seem amplified, because of the effect he can have on the rest of the household.

 

<sigh>

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QUOTE (GhostGirl @ Sep 5 2011, 12:04 PM)
This probably gets old but I've got to vent someplace and I don't have the energy for a blog entry.

I am so f***ing sick of autism.

I'm so tired of not being able to explain really basic things to Stephen, like:

*We can't swim when it's raining. We just can't.
*The DVD/VHS tape you have is the SAME THING, the cover just looks different than the one on Amazon.
*School is on Tuesday. Tuesday is a DAY of the WEEK.
*Please, please stop screeching. You are making everyone nervous and on edge.

This weekend has been hellish. I can't stand one more thing! It's raining and there's nowhere "safe" to go that Stephen will go along with... My heart is on permanent racing speed, and I get a jolt every time his voice goes up in volume, because I know he's likely to be gearing up for another tantrum.

And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home. These phases are hard, but they don't last and don't warrant putting him in a home.

I just don't know how to keep going sometimes. I have lots of worries and very little positive stuff going on. There are other issues in the family that make Stephen's problems seem amplified, because of the effect he can have on the rest of the household.

<sigh>

hug2.gif

 

Hang in there, GG.

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QUOTE (GhostGirl @ Sep 5 2011, 09:04 AM)
This probably gets old but I've got to vent someplace and I don't have the energy for a blog entry.

I am so f***ing sick of autism.

I'm so tired of not being able to explain really basic things to Stephen, like:

*We can't swim when it's raining. We just can't.
*The DVD/VHS tape you have is the SAME THING, the cover just looks different than the one on Amazon.
*School is on Tuesday. Tuesday is a DAY of the WEEK.
*Please, please stop screeching. You are making everyone nervous and on edge.

This weekend has been hellish. I can't stand one more thing! It's raining and there's nowhere "safe" to go that Stephen will go along with... My heart is on permanent racing speed, and I get a jolt every time his voice goes up in volume, because I know he's likely to be gearing up for another tantrum.

And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home. These phases are hard, but they don't last and don't warrant putting him in a home.

I just don't know how to keep going sometimes. I have lots of worries and very little positive stuff going on. There are other issues in the family that make Stephen's problems seem amplified, because of the effect he can have on the rest of the household.

<sigh>

If it helps at all, GG, I'm right there with you but with a twist. Mine has Aspergers and is socially, I'm just going to be honest here, is that "weird kid." I have to explain to friends and complete strangers what in the world my child is doing/saying/meaning. Example... This afternoon I took him to a playground. He was running all over the place with this adorable other child following him trying desperately to get his attention but to no avail. Finally I approached and helped out (I've been trying not to get involved all the time with every single little case because my son *needs* to learn how to deal with social situations) anyway, I got my son to introduce himself and when the other kid started talking to him, mine was rambling about stuff that you just don't ramble on about and this kid was like WTH?. Plus, he cannot make eye contact so that's another thing kids and adults find odd. I try to quickly explain his situation in the fewest words possible and once they find out his situation, they're understanding BUT mom cannot be there at all points in time.

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QUOTE (GhostGirl @ Sep 5 2011, 09:04 AM)
And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home. These phases are hard, but they don't last and don't warrant putting him in a home.

I just don't know how to keep going sometimes.

<sigh>

You know how you keep going? If I had thoughtless remarks like this, I would have to pull the b*tch card which I reserve for special occasions.

 

"He needs to be in a home."

He IS in a home. Thank you for your concern. Do I know you?

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QUOTE (Janie @ Sep 5 2011, 10:38 PM)
QUOTE (GhostGirl @ Sep 5 2011, 09:04 AM)
This probably gets old but I've got to vent someplace and I don't have the energy for a blog entry.

I am so f***ing sick of autism.

I'm so tired of not being able to explain really basic things to Stephen, like:

*We can't swim when it's raining.  We just can't.
*The DVD/VHS tape you have is the SAME THING, the cover just looks different than the one on Amazon.
*School is on Tuesday.  Tuesday is a DAY of the WEEK.
*Please, please stop screeching.  You are making everyone nervous and on edge. 

This weekend has been hellish.  I can't stand one more thing!  It's raining and there's nowhere "safe" to go that Stephen will go along with...  My heart is on permanent racing speed, and I get a jolt every time his voice goes up in volume, because I know he's likely to be gearing up for another tantrum.

And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home.  These phases are hard, but they don't last and don't warrant putting him in a home. 

I just don't know how to keep going sometimes.  I have lots of worries and very little positive stuff going on.  There are other issues in the family that make Stephen's problems seem amplified, because of the effect he can have on the rest of the household.

<sigh>

If it helps at all, GG, I'm right there with you but with a twist. Mine has Aspergers and is socially, I'm just going to be honest here, is that "weird kid." I have to explain to friends and complete strangers what in the world my child is doing/saying/meaning. Example... This afternoon I took him to a playground. He was running all over the place with this adorable other child following him trying desperately to get his attention but to no avail. Finally I approached and helped out (I've been trying not to get involved all the time with every single little case because my son *needs* to learn how to deal with social situations) anyway, I got my son to introduce himself and when the other kid started talking to him, mine was rambling about stuff that you just don't ramble on about and this kid was like WTH?. Plus, he cannot make eye contact so that's another thing kids and adults find odd. I try to quickly explain his situation in the fewest words possible and once they find out his situation, they're understanding BUT mom cannot be there at all points in time.

Well, you're doing the right thing in trying to let him start learning to deal with stuff...

 

I know you do understand, to a point...but honestly, in the world of autism and all its delights? Most parents with low-functioning kids look at Aspergers as something to aspire to... sad.gif

 

Each has its own problems, that's for sure.

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You guys are the best moms.

 

People say stupid things. Sometimes because they simply dont think, sometimes because theyre as-holes.

 

"I know how you feel" - yeah, perhaps not so much

 

"I can imagine.." - yeah, perhaps not really

 

Life is messy and annoying and full of heart wrenching stressful crap even when you don't have a special needs child to consume your life and your emotions.

 

I often come across special needs children and adults - and always try to feel out the situation, help where I think I can back off and leave them alone if I see thats whats necessary. But I always treat special needs kids like ANY OTHER KID and smile and joke with them, and also shoot their parents a friendly admiring smile.

 

The act of coping, moving on, staying the course and caring for your little loved children is one of the most admirable things in all of human kind. Love counts 10X when it involves that much effort.

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QUOTE (lerxt1990 @ Sep 6 2011, 10:23 AM)
You guys are the best moms.

People say stupid things. Sometimes because they simply dont think, sometimes because theyre as-holes.

"I know how you feel" - yeah, perhaps not so much

"I can imagine.." - yeah, perhaps not really

Life is messy and annoying and full of heart wrenching stressful crap even when you don't have a special needs child to consume your life and your emotions.

I often come across special needs children and adults - and always try to feel out the situation, help where I think I can back off and leave them alone if I see thats whats necessary. But I always treat special needs kids like ANY OTHER KID and smile and joke with them, and also shoot their parents a friendly admiring smile.

The act of coping, moving on, staying the course and caring for your little loved children is one of the most admirable things in all of human kind. Love counts 10X when it involves that much effort.

goodpost.gif

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QUOTE (1-0-0-1-0-0-1 @ Sep 6 2011, 03:14 PM)
QUOTE (lerxt1990 @ Sep 6 2011, 10:23 AM)
You guys are the best moms.

People say stupid things.  Sometimes because they simply dont think, sometimes because theyre as-holes.

"I know how you feel" - yeah, perhaps not so much

"I can imagine.." - yeah, perhaps not really

Life is messy and annoying and full of heart wrenching stressful crap even when you don't have a special needs child to consume your life and your emotions.

I often come across special needs children and adults - and always try to feel out the situation, help where I think I can back off and leave them alone if I see thats whats necessary.  But I always treat special needs kids like ANY OTHER KID and smile and joke with them, and also shoot their parents a friendly admiring smile.

The act of coping, moving on, staying the course and caring for your little loved children is one of the most admirable things in all of human kind.  Love counts 10X when it involves that much effort.

goodpost.gif

goodpost.gif goodpost.gif

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QUOTE (GhostGirl @ Sep 5 2011, 11:04 AM)
This probably gets old but I've got to vent someplace and I don't have the energy for a blog entry.

I am so f***ing sick of autism.

I'm so tired of not being able to explain really basic things to Stephen, like:

*We can't swim when it's raining. We just can't.
*The DVD/VHS tape you have is the SAME THING, the cover just looks different than the one on Amazon.
*School is on Tuesday. Tuesday is a DAY of the WEEK.
*Please, please stop screeching. You are making everyone nervous and on edge.

This weekend has been hellish. I can't stand one more thing! It's raining and there's nowhere "safe" to go that Stephen will go along with... My heart is on permanent racing speed, and I get a jolt every time his voice goes up in volume, because I know he's likely to be gearing up for another tantrum.

And it helps not a bit for someone to tell me that I have to face that maybe he needs to live in a home. These phases are hard, but they don't last and don't warrant putting him in a home.

I just don't know how to keep going sometimes. I have lots of worries and very little positive stuff going on. There are other issues in the family that make Stephen's problems seem amplified, because of the effect he can have on the rest of the household.

<sigh>

I'll keep good thoughts that things get better! Or that at least you can find half hour of peace and quiet. smile.gif

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