Autism

[sundog]

QUOTE (Angua @ Apr 28 2008, 04:16 PM)

my 15 year old daughter sustained brain damage as a baby (the result of her metabolic disorder not being diagnosed at that point) and has some autistic spectrum behaviour.  She never refers to herself as I or me, always by her first name.  Her speech is very stilted and difficult to understand if  you aren't tuned into her (and even then it can be tricky).  She was very delayed in all her milestones (but we were told that was to be expected because of her rough start), even a congenital dislocated hip was misdiagnosed and untreated until she was 2.  The metabolic disorder was diagnosed at 5 and there were a lot of quick and spectacular improvements when this was treated.  She has epilepsy that is not fully controlled at present and moderate to severe learning disabilities, mobility issues, partial sight, growth disorder and high blood pressure.  The neuro's agree that she has autistic spectrum behaviour but think this is not necessary to add to her list of "formal" diagnosis!  Thy said she can't be autistic because we know what the cause of the damage is! She is a happy child, loves music, but is nothing like a 15 year old.  This board has been one of the things that has kept me going.  thanks for letting me ramble

 

Edit to add: No thanks necessary. Rant away, sometimes it helps to release it.

Edited April 28, 2008 by sundog

[sundog]

QUOTE (Cygnus The God Of Balance @ Apr 28 2008, 01:43 PM)

That's an amazing picture. Tony is very visual too. He tries to draw, but he's really likes my digital camera. He's very careful of it, and although many of his pictures are of nothing, he does look like he's actually trying to frame his shots. I keep all of them, and at one point thought of putting them together in a kind of "here's how Tony sees his world" book.

I would love to look at that book!

[owlswing]

QUOTE (sundog @ Apr 28 2008, 03:42 PM)

QUOTE (Cygnus The God Of Balance @ Apr 28 2008, 01:43 PM) That's an amazing picture.  Tony is very visual too.  He tries to draw, but he's really likes my digital camera.  He's very careful of it, and although many of his pictures are of nothing, he does look like he's actually trying to frame his shots.  I keep all of them, and at one point thought of putting them together in a kind of "here's how Tony sees his world" book. I would love to look at that book! Those picture he takes must be amazing. Although to our eyes it may seem like nothing to him it is his world. As you said from what you call the book. What a treasure to have.

[owlswing]

QUOTE (sundog @ Apr 28 2008, 03:40 PM)

QUOTE (Angua @ Apr 28 2008, 04:16 PM) my 15 year old daughter sustained brain damage as a baby (the result of her metabolic disorder not being diagnosed at that point) and has some autistic spectrum behaviour.  She never refers to herself as I or me, always by her first name.  Her speech is very stilted and difficult to understand if  you aren't tuned into her (and even then it can be tricky).  She was very delayed in all her milestones (but we were told that was to be expected because of her rough start), even a congenital dislocated hip was misdiagnosed and untreated until she was 2.  The metabolic disorder was diagnosed at 5 and there were a lot of quick and spectacular improvements when this was treated.  She has epilepsy that is not fully controlled at present and moderate to severe learning disabilities, mobility issues, partial sight, growth disorder and high blood pressure.  The neuro's agree that she has autistic spectrum behaviour but think this is not necessary to add to her list of "formal" diagnosis!  Thy said she can't be autistic because we know what the cause of the damage is! She is a happy child, loves music, but is nothing like a 15 year old.  This board has been one of the things that has kept me going.  thanks for letting me ramble   Edit to add: No thanks necessary. Rant away, sometimes it helps to release it. I truly want to THANK YOU for your "ramble" You have hit on something so core in all of this...those "formal" diagnosis are the key to getting kids ALL the help they truly need.

[Angua]

QUOTE (owlswing @ Apr 28 2008, 09:19 PM)

I truly want to THANK YOU for your "ramble"  You have hit on something so core in all of this...those "formal" diagnosis are the key to getting kids ALL the help they truly need.

Sometimes the medical profession think that they are protecting you from something if they don't give it a name. When we got the diagnosis for the metabolic disorder (pseudohypoparathyroidism - phew try typing that), it was a huge relief. As was the epilepsy diagnosis, at least we can say what is wrong with her, rather than general developmental delay which was a catch-all diagnosis. It is difficult to explain to some people why she behaves/talks/makes odd noises.

It really struck a chord how GhostGirl describes Stephens' speech and language skills. Em has difficulty with pronouncing a lot of words and doesn't speak in sentences still - despite speech therapy input for 13 years. She pays little attention to TV or video games, but does like to go to the cinema.She has always loved music (although the Spice Girls phase was a bit hard to bear, especially 4 hours in the car on a constant loop) and her dad was very proud of her when she could hum "Smoke on the Water" at 18 months (she couldn't make any speech sounds).

 

Look I'm rambling again

 

 

 

thanks

[GhostGirl]

Angua, your thoughts are ALWAYS welcome here.

 

[Cygnus The God Of Balance]

I have tons of pictures that Tony has taken. Here are a few observations of how he sees his world.

This is a window in our kitchen

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_3016.jpg

This is a table we sat at when we went out to dinner

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_3240.jpg

This is Tony's "Blue Box"; a box of items he likes to manipulate. Can't go anywhere without "Blue Box" (we have a travel "Green Box")

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_2186.jpg

Thank God for digital cameras. I couldn't afford to develop all the pictures he's taken. I store all his pictures on my laptop. It's truly interesting to see how he frames the picture in the little LCD screen.

Edited April 29, 2008 by Cygnus The God Of Balance

[sundog]

This looks like dinner out with a TRF group!

 

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_3240.jpg

 

 

Thanks for sharing M, these are great!

[Cygnus The God Of Balance]

QUOTE (sundog @ Apr 29 2008, 11:26 AM)

This looks like dinner out with a TRF group! http://i211.photobucket.com/albums/bb299/rock101dotnet/100_3240.jpg Thanks for sharing M, these are great!

Thanks Jen....we'll start working on the book

[Sword and Armor]

Great pictures! I love the perspective in the resturant shot. It's very much like being able to see the world through their eyes.

[Angua]

QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM)

Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen.

We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.

 

She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour?

[Cygnus The God Of Balance]

QUOTE (Angua @ Apr 29 2008, 05:26 PM)

QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps.

[GhostGirl]

QUOTE (Cygnus The God Of Balance @ May 1 2008, 09:05 AM)

QUOTE (Angua @ Apr 29 2008, 05:26 PM) QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps. I couldn't agree more.   While there are undoubtedly things that Stephen cannot change about himself, I've found (with CGOB's encouragement) that treating him more like a "regular" kid, in certain situations, actually brings about more "normal" behavior.   One example:   Stephen doesn't eat at specific times (and this is something we're going to work on) so he will often interrupt my dinner to ask for a video or for a book to be read to him. I used to just drop everything and do what he asked, to avoid a tantrum. But now I say, "No, Mommy's eating. First I'll eat, then we'll read." And after a few minutes of whining, he'll go find something else to do.   It's like he really did just need an explanation.   Good luck, Angua.

[Angua]

QUOTE (Cygnus The God Of Balance @ May 1 2008, 02:05 PM)

QUOTE (Angua @ Apr 29 2008, 05:26 PM) QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps. Thanks. We had a similar experience with hair cutting for a long time. She manages now and almost enjoys it, but still hates having it washed. She did let her younger brother cut her hair last summer. It was an interesting haircut that still hasn't grown out totally.   I know what you mean, although we take Em's problems into account, we do challenge her to achieve new things. I never thought she would walk or talk at all at on time. She does love the computer, but to write lists in word and such. Her younger brother just expects her to do things and for him she generally does them!

[Sword and Armor]

QUOTE (Angua @ May 1 2008, 10:18 AM)

QUOTE (Cygnus The God Of Balance @ May 1 2008, 02:05 PM) QUOTE (Angua @ Apr 29 2008, 05:26 PM) QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps. Thanks. We had a similar experience with hair cutting for a long time. She manages now and almost enjoys it, but still hates having it washed. She did let her younger brother cut her hair last summer. It was an interesting haircut that still hasn't grown out totally.   I know what you mean, although we take Em's problems into account, we do challenge her to achieve new things. I never thought she would walk or talk at all at on time. She does love the computer, but to write lists in word and such. Her younger brother just expects her to do things and for him she generally does them! We've come to find that you have to pick and choose your "battles". For the longest time, Matthew would not under any circumstances sit through a hair cut, he was very sensitive to having his hair touched. We couldn't get near him with clippers and scissors was completely out of the question. He thought that the scissors would hurt. I even shaved my head to show him that the clippers don't hurt.   I happened to stumble upon a place that had a VCR with Thomas the Tank Engine tapes, what a godsend! He sat there watching Thomas and had no idea that his hair was being cut, after a while as he started to lose interest in Thomas, we tried getting him a haircut without the VCR on, it didn't work at first but as long as he heard the video he picked out, he was fine. We've gotten him to the point where he no longer minds the haircut at all, and can go anywhere.   Everyday he presents a new challenge in some way, some small - some not so small, we just take it one day at a time.

[Cygnus The God Of Balance]

QUOTE (Sword and Armor @ May 1 2008, 10:12 AM)

QUOTE (Angua @ May 1 2008, 10:18 AM) QUOTE (Cygnus The God Of Balance @ May 1 2008, 02:05 PM) QUOTE (Angua @ Apr 29 2008, 05:26 PM) QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps. Thanks. We had a similar experience with hair cutting for a long time. She manages now and almost enjoys it, but still hates having it washed. She did let her younger brother cut her hair last summer. It was an interesting haircut that still hasn't grown out totally.   I know what you mean, although we take Em's problems into account, we do challenge her to achieve new things. I never thought she would walk or talk at all at on time. She does love the computer, but to write lists in word and such. Her younger brother just expects her to do things and for him she generally does them! We've come to find that you have to pick and choose your "battles". For the longest time, Matthew would not under any circumstances sit through a hair cut, he was very sensitive to having his hair touched. We couldn't get near him with clippers and scissors was completely out of the question. He thought that the scissors would hurt. I even shaved my head to show him that the clippers don't hurt.   I happened to stumble upon a place that had a VCR with Thomas the Tank Engine tapes, what a godsend! He sat there watching Thomas and had no idea that his hair was being cut, after a while as he started to lose interest in Thomas, we tried getting him a haircut without the VCR on, it didn't work at first but as long as he heard the video he picked out, he was fine. We've gotten him to the point where he no longer minds the haircut at all, and can go anywhere.   Everyday he presents a new challenge in some way, some small - some not so small, we just take it one day at a time. We tried having him watch a video as a distraction too, but to no avail. He just finally (I think) gave in and realized it wasn't that bad. He had been watching our son get his haircut then just crawled up in the chair and said 'haircut'.   I'm a firm believer of "whatever it takes". What works for Tony might not work for your kid. I agree that you have to pick your battles, but once you've won one of those battles, you have to take on another one. I'd never try to take on all of Tony's battles. I know he could outlast me. One at a time is better for both of us.

[Sword and Armor]

QUOTE (Cygnus The God Of Balance @ May 1 2008, 12:31 PM)

QUOTE (Sword and Armor @ May 1 2008, 10:12 AM) QUOTE (Angua @ May 1 2008, 10:18 AM) QUOTE (Cygnus The God Of Balance @ May 1 2008, 02:05 PM) QUOTE (Angua @ Apr 29 2008, 05:26 PM) QUOTE (Cygnus The God Of Balance @ Apr 29 2008, 03:10 PM) Thank God for digital cameras.  I couldn't afford to develop all the pictures he's taken.  I store all his pictures on my laptop.  It's truly interesting to see how he frames the picture in the little LCD screen. We gave Em a load of disposable cameras when we went on holiday and at birthdays etc. She likes to take pictures, although some are of her fingers tips! She likes them to be made up into albums that she can look at like a book.   She cannot bear to see herself on video though and gets extremely worried and upset whenever she sees herself on screen. Stills are fine but video is a big no-no, unless she's out of shot. She also gets very upset at her baby pictures, especially the ones when she was in hospital. Has anyone else experienced this kind of behaviour? Angua, Tony isn't a 'fan' of getting his picture taken, but he usually doesn't get too upset about having pictures taken, unless it takes longer than he wants to cooperate. His distaste is more for textures. Tony NEVER wears long sleeve shirts or sweatshirts, although last night I made him wear a hoodie when he wanted to play outside, and he seemed to handle that ok. Until about a year ago he sit still for a hair cut and would pitch a fit when we'd just pass the salon where we take him. He's conquered that fear and just yesterday sat like a perfect young man while he got his hair cut. In my experience, it seems like even though he's overreacted to some normal things in life, we keep challenging him, and that's where we've had the success. I'd suggest that you continue to challenge your daughter to do the things she doesn't like. I've found, that like any 'normal' kid, if Tony realized that if he just acted up when he didn't want to do something, he'd get his way. By pushing him, we've, as I like to quote experienced "One Little Victory" at a time. Good Luck. Hope this helps. Thanks. We had a similar experience with hair cutting for a long time. She manages now and almost enjoys it, but still hates having it washed. She did let her younger brother cut her hair last summer. It was an interesting haircut that still hasn't grown out totally.   I know what you mean, although we take Em's problems into account, we do challenge her to achieve new things. I never thought she would walk or talk at all at on time. She does love the computer, but to write lists in word and such. Her younger brother just expects her to do things and for him she generally does them! We've come to find that you have to pick and choose your "battles". For the longest time, Matthew would not under any circumstances sit through a hair cut, he was very sensitive to having his hair touched. We couldn't get near him with clippers and scissors was completely out of the question. He thought that the scissors would hurt. I even shaved my head to show him that the clippers don't hurt.   I happened to stumble upon a place that had a VCR with Thomas the Tank Engine tapes, what a godsend! He sat there watching Thomas and had no idea that his hair was being cut, after a while as he started to lose interest in Thomas, we tried getting him a haircut without the VCR on, it didn't work at first but as long as he heard the video he picked out, he was fine. We've gotten him to the point where he no longer minds the haircut at all, and can go anywhere.   Everyday he presents a new challenge in some way, some small - some not so small, we just take it one day at a time. We tried having him watch a video as a distraction too, but to no avail. He just finally (I think) gave in and realized it wasn't that bad. He had been watching our son get his haircut then just crawled up in the chair and said 'haircut'.   I'm a firm believer of "whatever it takes". What works for Tony might not work for your kid. I agree that you have to pick your battles, but once you've won one of those battles, you have to take on another one. I'd never try to take on all of Tony's battles. I know he could outlast me. One at a time is better for both of us. With any child you have to pick and choose your battles!   We only take on one thing at a time, and you are correct because any child will outlast their parents on most battles! My children have learned to attempt the "divide and conquer" method of getting what they want. My wife and I sure didn't teach it, but they work it for all it's worth. If dad says no, just ask mom and vice-versa.   We try to tie all of our forward steps together, meaning that we refer to something that he recently accomplished as a step towards getting this new thing accomplished. And more times than not, we've gotten positive results. We always try to remind Matthew of the feeling that he had when he made a major step forward, like when he rode his bike without training wheels for the first time.   He refused for years to take off the training wheels, mainly because he fell the first time that he tried (he was on the cement walkway). He was afraid, but at the same time, he saw his younger brother riding all over the neighborhood without them. Well, his bike got a flat and I changed the rear tire. Before I put the training wheels back on, I asked him to try. He gave me an emphatic NO. So I told him that it had been a long time since he tried and maybe he should try again. This time I put him on the grass and told him to try (he always wanted to ride in the grass, but just couldn't make it happen with the training wheels). Beofre I knew it, he was half way across the yard and going faster. What a great feeling! There was no looking back at this point, he did it, and he did it on his own.   That is the feeling that we remind him of when he takes a step forward......and for us, it works.

[Rushman14]

I've mentioned my daughter Kara a couple of times on this thread. She's 4 years old and suffers from autism, but she also might turn out to be good artist. She painted me this picture for my birthday and I thought I'd share.

 

I love it!

 

http://a702.ac-images.myspacecdn.com/images01/82/l_eb3ca9778c7b414b36dbe70bc48d9d45.jpg

Edited May 2, 2008 by Rushman14

[Cygnus The God Of Balance]

QUOTE (Rushman14 @ May 2 2008, 05:28 PM)

I've mentioned my daughter Kara a couple of times on this thread. She's 4 years old and suffers from autism, but she also might turn out to be good artist. She painted me this picture for my birthday and I thought I'd share. I love it! http://a702.ac-images.myspacecdn.com/images01/82/l_eb3ca9778c7b414b36dbe70bc48d9d45.jpg

That's awesome Rushman.

 

I still carry some pictures that Tony drew on the back of my business cards in my wallet. It's awesome to see what other kids can do too.

[svtrammell]

QUOTE (sullysue @ Apr 2 2008, 10:28 AM)

QUOTE (GhostGirl @ Apr 2 2008, 10:20 AM) QUOTE (sullysue @ Apr 2 2008, 10:18 AM) QUOTE (GhostGirl @ Apr 2 2008, 09:50 AM) Those who've read my blog know my feelings on lumping all forms of ASD together...this spectrum is SO wide.  I feel it's unfair to have all the "feel-good" stories and very few of the realistic ones about kids who aren't high functioning. For example: 'You get a slice of heaven and a pure love in your home'  <----click Pure love?  Yes.  Slice of heaven?  Erm...  Story Highlights * Parents share tales of raising children with autism through iReport.com * "It's going to be hard," Selma Crosby says, but parents of autistic children are lucky * "I wouldn't have it any other way," says Sandra Trammell, mother of autistic Mila Well, I don't know Mila or her mom, but I sure as HELL would have it another way for my son, and while I feel lucky to have 2 beautiful boys, I would quite literally give my right arm for Stephen to be "normal." Saying it's "A slice of heaven," does seem inappropriate, doesn't it? I suppose that might be the only way those parents have to deal with it. I can only imagine how overwhelming it must be to effectively raise a child with autism and maintain your sanity. Perhaps they have to put on rose-colored glasses just to make it through. It seems kind of a strange approach, though. And, to say that parents with autistic children are lucky? I dunno. Right...it might apply to kids who are higher functioning, and I can certainly understand looking on the bright side. I do it myself, but I don't for one second claim that I'm happy with the way things are.   This is why I wish there was a clear distinction between HFA (high functioning autism) and what I call "classic" autism, like Stephen has.   People see the J-Mac basketball stories and so forth, and they say, "Why, that's just great! What are YOU whining about?"   It's just SO different, you know? And, that's where the awareness needs to take a step up. With attention increasing, maybe it will evolve to where a clear distinction is made. I guess a lot of people are just learning about autism in its general context, and that's good. With more and more information and scientific study hopefully "Autistic" won't be used as a blanket term. Hello Michelle,   I know you don't know my daughter Mila or myself. I have accepted the fact that Mila will never be "normal," but what is the definition of "normal?" Mila is an honest, polite and a beautiful girl. She hold no grudges, learning how to lie (is that a good feature of being normal?), and very intelligent. She has many taught many good life lessons. I used to be a Pediatric Critical Care nurse, but now I am more involved with Mila's therapies and more attentive to her school needs. Mila has taught me patience, honesty, perserverance, and acceptance. I was at the state capital last week and witness an unanimous decision from the House of Insurance (Appropriations) that autism treatments should be covered by health insurance in Louisiana. I witnessed that numbers make a difference. I was born and raised in Hamilton, Ontario and loved listening to RUSH. I could have moved back home to Canada where the government would cover treatments for Mila, however, there was a reason why I moved to the United States. I never thought that my dreams would change once Mila came along. I believe there is a reason why things happen and my purpose in life is to help Mila and those that would follow our footsteps. I am in a program called Partners in Policymaking and I am learning that we can make a difference. Our politicians and educators work for us. I had an autism awareness day at Mila's school that was unheard of in the public school system. Tomorrow, Mila will be awarded because she wrote her first story that won state. The local TV channel will be there to highlight the event. The media creates more awareness. I pray for you and your son. Take care, Sandra Trammell

[GhostGirl]

Thank you, Sandra. I'm sure you are doing your best (as am I) to make a real difference. I applaud you and your daughter. Congratulations on your victory with insurance. That is a HUGE problem for families of kids with autism. Thank you for working on that.

 

And just to be clear - I don't necessarily want my son to be "normal," but I would like for him to have a happy and functional life. If you lived with us, you might see why I detest "autism" so much.

 

I love my son with my entire soul, but I wish autism would disappear off the face of the planet. I don't wish that autistic PEOPLE would disappear. There's a huge difference.

 

Hey, I'm a Rush fan. I celebrate the differences in people - the spaces in between and all that... But my son's autism makes his life harder - not more "interesting."

[Cygnus The God Of Balance]

QUOTE (GhostGirl @ May 6 2008, 09:47 AM)

Thank you, Sandra. I'm sure you are doing your best (as am I) to make a real difference. I applaud you and your daughter. Congratulations on your victory with insurance. That is a HUGE problem for families of kids with autism. Thank you for working on that. And just to be clear - I don't necessarily want my son to be "normal," but I would like for him to have a happy and functional life. If you lived with us, you might see why I detest "autism" so much. I love my son with my entire soul, but I wish autism would disappear off the face of the planet. I don't wish that autistic PEOPLE would disappear. There's a huge difference. Hey, I'm a Rush fan. I celebrate the differences in people - the spaces in between and all that... But my son's autism makes his life harder - not more "interesting."

I agree with you GG. I don't know many families that wished their child wasn't autistic. And that doesn't mean we don't love our kids, but Autism robs them of many things in life.

 

So, here's Tony and I at a restaurant over the weekend. As many of you know, I work at a rock radio station, and Tony is a big fan of music....anything from to the Wiggles (he probably prefers the Wiggles but we're working on that )

 

I've taught Tony how to 'rock' and throw up the devil horns. When he does it, he says in his sweet little voice "Rock On!". His mother (my ex) hates it (which makes it that much sweeter).

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_4203.jpg

 

[Sword and Armor]

QUOTE (Cygnus The God Of Balance @ May 6 2008, 11:17 AM)

http://i211.photobucket.com/albums/bb299/rock101dotnet/100_4203.jpg

Rock On Tony!!

 

[GhostGirl]

QUOTE (Cygnus The God Of Balance @ May 6 2008, 10:17 AM)

QUOTE (GhostGirl @ May 6 2008, 09:47 AM) Thank you, Sandra.  I'm sure you are doing your best (as am I) to make a real difference.  I applaud you and your daughter.  Congratulations on your victory with insurance.  That is a HUGE problem for families of kids with autism.  Thank you for working on that. And just to be clear - I don't necessarily want my son to be "normal," but I would like for him to have a happy and functional life.  If you lived with us, you might see why I detest "autism" so much. I love my son with my entire soul, but I wish autism would disappear off the face of the planet.  I don't wish that autistic PEOPLE would disappear.  There's a huge difference.  Hey, I'm a Rush fan.  I celebrate the differences in people - the spaces in between and all that...  But my son's autism makes his life harder - not more "interesting." I agree with you GG. I don't know many families that wished their child wasn't autistic. And that doesn't mean we don't love our kids, but Autism robs them of many things in life.   So, here's Tony and I at a restaurant over the weekend. As many of you know, I work at a rock radio station, and Tony is a big fan of music....anything from to the Wiggles (he probably prefers the Wiggles but we're working on that )   I've taught Tony how to 'rock' and throw up the devil horns. When he does it, he says in his sweet little voice "Rock On!". His mother (my ex) hates it (which makes it that much sweeter). http://i211.photobucket.com/albums/bb299/rock101dotnet/100_4203.jpg I love it!

[Rushman14]

QUOTE (Cygnus The God Of Balance @ May 6 2008, 08:17 AM)

So, here's Tony and I at a restaurant over the weekend.  As many of you know, I work at a rock radio station, and Tony is a big fan of music....anything from  to the Wiggles (he probably prefers the Wiggles but we're working on that  ) I've taught Tony how to 'rock' and throw up the devil horns.  When he does it, he says in his sweet little voice "Rock On!".  His mother (my ex) hates it (which makes it that much sweeter).  http://i211.photobucket.com/albums/bb299/rock101dotnet/100_4203.jpg

that's awesome Cygnus! I'm gonna have to teach Kara the devil horns, just for the reasons you mentioned.