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I'm going home, i've done my time!!

I'm going home, i've done my time!!

Old Feb 20th 2011, 7:13 pm
  #181  
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Default Re: I'm going home, i've done my time!!

Originally Posted by nikki dreaming View Post
Agree, we will only really know once she starts school and take it each day, the school she is due to go to is experienced in dealing with autistic children, its a new school and the have a full sensory room available for them at any time of day. We are in the process of working with EIBI for the transition to school and confirmation of an EA etc for her which she will 100% need. This person will be key I believe to her success in settling into school and everything that this brings, fingers x we find an angel

It is also the practical things ie getting the bus, being in the classroom, the rules of recess etc which she is not going to understand so the EA to have 100% eyes and ears on her for her own safety is so important, she would quite happily wonder away from school with no idea of the boundaries etc

It is all going to be very individual to the school and the teachers and the assistants as to how successfully an autistic child can integrate.
Wow, that school sounds really great! I'm sure she'll get on really well there!
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Old Feb 20th 2011, 11:04 pm
  #182  
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Default Re: I'm going home, i've done my time!!

In contrast to the tales of progress above, I don't think there has been any significant change in my daughter in the past twenty years. I believe the "H block protest" phase ended before that though the image and smell come back to me as if it were this morning. That was the last big shift, despite the best efforts of medical professionals, gifted amateurs, quacks and the genuinely gifted.

She likes to bounce, like a frog (making me wonder about the origin of tales of Princes and frogs) on the floor or over an exercise ball and does so for most of her waking hours. In consequence, she has attained a level of strength and fitness beyond the wildest claims of the fitness chains.

This presents a problem in the context of teeth cleaning. If she doesn't want to have her teeth brushed, and this is as often as not the case, then one can give up on the idea or hold her down by sitting on her chest and risk the loss of a finger by shoving the brush in. The idea of losing a finger is not fanciful, she will bite, for that reason I don't sit her behind me in the car when driving. Feeling teeth sink into one's flesh is disturbing, it can make one drop one's phone. The problem with restraining her is that she's strong and wilful, unless she's evenly restrained she's capable of breaking a bone or dislocating a joint trying to resist. A past tantrum has left her feet twisted, she broke them repeatedly by stamping. Surgical boots cost a lot but didn't help to set them correctly. Apart from a reluctance to see one's child injure herself, one must be alert to the risk of intervention, the Children's Aid are not about to believe that a child, well an adult now, elected to break a bone. And so, the teeth fall into disrepair. Some dentists will clean and maintain them under a general anaesthetic but that, of course, is a dangerous and expensive business.

She likes water, splashing about, somewhere I've a set of pictures of the kitchen ceiling in one house in which we lived. The bathroom was over the kitchen and, in consequence of repeated splashings, the kitchen ceiling and the kitchen floor became one. Oddly though she's never had that need of routine or regularity typical of autism, take her to a hotel with a pool and she's delighted even though it's all new to her. Check though that no period is due, she's a physically a healthy woman not limited by any societal constraints. The pool could look like a scene from Jaws.

She likes music and has the idea that the knobs on the radio have something to do with making music come out. Most the radios she can reach have long since had the knobs removed but a problem in the car is that she jabs and twists the controls wildly, thus one drives along with one hand frenziedly switching the volume back to reasonable and the channel away from Cancon.

Exposure to autism changes people. My Mother used to say, of a frightening audience, "go on, they won't bite you" but still, until that comparison became tangible to me, I was reluctant to address large groups or to cold call. It changes one's parameters. This recently arrived, in a business email,

"We are all under a remarkable amount of pressure and stress. I know that I
must consciously focus on keeping things positive and constructive."

and I thought, "ffs, it's only your job at stake. You should have something to worry about".
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Old Feb 20th 2011, 11:14 pm
  #183  
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Default Re: I'm going home, i've done my time!!

@dbd33

I honestly do not know how you cope with the situations you describe above day in day out. It is hard enough being a parent, let alone being the parent of an autisitc child. You have my utmost respect.
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Old Feb 20th 2011, 11:23 pm
  #184  
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Default Re: I'm going home, i've done my time!!

Originally Posted by Danny B View Post
@dbd33

I honestly do not know how you cope with the situations you describe above day in day out. It is hard enough being a parent, let alone being the parent of an autisitc child. You have my utmost respect.
If respect is warranted in this regard it's my ex who deserves it, second weekends and a while in the summer don't compare to every day. And there's a thing, few autistic people have parents who are together. Deciding how to deal with the autism, deciding jointly how far to go in seeking a remedy, how much? hiow weird? That'd be a trick.
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Old Feb 21st 2011, 12:43 am
  #185  
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Default Re: I'm going home, i've done my time!!

Originally Posted by dbd33 View Post
In contrast to the tales of progress above, I don't think there has been any significant change in my daughter in the past twenty years. I believe the "H block protest" phase ended before that though the image and smell come back to me as if it were this morning. That was the last big shift, despite the best efforts of medical professionals, gifted amateurs, quacks and the genuinely gifted.

She likes to bounce, like a frog (making me wonder about the origin of tales of Princes and frogs) on the floor or over an exercise ball and does so for most of her waking hours. In consequence, she has attained a level of strength and fitness beyond the wildest claims of the fitness chains.

This presents a problem in the context of teeth cleaning. If she doesn't want to have her teeth brushed, and this is as often as not the case, then one can give up on the idea or hold her down by sitting on her chest and risk the loss of a finger by shoving the brush in. The idea of losing a finger is not fanciful, she will bite, for that reason I don't sit her behind me in the car when driving. Feeling teeth sink into one's flesh is disturbing, it can make one drop one's phone. The problem with restraining her is that she's strong and wilful, unless she's evenly restrained she's capable of breaking a bone or dislocating a joint trying to resist. A past tantrum has left her feet twisted, she broke them repeatedly by stamping. Surgical boots cost a lot but didn't help to set them correctly. Apart from a reluctance to see one's child injure herself, one must be alert to the risk of intervention, the Children's Aid are not about to believe that a child, well an adult now, elected to break a bone. And so, the teeth fall into disrepair. Some dentists will clean and maintain them under a general anaesthetic but that, of course, is a dangerous and expensive business.

She likes water, splashing about, somewhere I've a set of pictures of the kitchen ceiling in one house in which we lived. The bathroom was over the kitchen and, in consequence of repeated splashings, the kitchen ceiling and the kitchen floor became one. Oddly though she's never had that need of routine or regularity typical of autism, take her to a hotel with a pool and she's delighted even though it's all new to her. Check though that no period is due, she's a physically a healthy woman not limited by any societal constraints. The pool could look like a scene from Jaws.

She likes music and has the idea that the knobs on the radio have something to do with making music come out. Most the radios she can reach have long since had the knobs removed but a problem in the car is that she jabs and twists the controls wildly, thus one drives along with one hand frenziedly switching the volume back to reasonable and the channel away from Cancon.

Exposure to autism changes people. My Mother used to say, of a frightening audience, "go on, they won't bite you" but still, until that comparison became tangible to me, I was reluctant to address large groups or to cold call. It changes one's parameters. This recently arrived, in a business email,

"We are all under a remarkable amount of pressure and stress. I know that I
must consciously focus on keeping things positive and constructive."

and I thought, "ffs, it's only your job at stake. You should have something to worry about".
Most honest and humbling post Ive ever read on BE.
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Old Feb 21st 2011, 12:56 am
  #186  
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Default Re: I'm going home, i've done my time!!

Originally Posted by Flogger View Post
Most honest and humbling post Ive ever read on BE.
It's from the man who has looked into the heart of the Tardis.
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Old Feb 21st 2011, 1:01 am
  #187  
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Default Re: I'm going home, i've done my time!!

Originally Posted by Novocastrian View Post
It's from the man who has looked into the heart of the Tardis.
Ah! Christopher eccleston then.
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Old Feb 21st 2011, 1:13 am
  #188  
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Default Re: I'm going home, i've done my time!!

Originally Posted by Flogger View Post
Ah! Christopher eccleston then.
For once, I wasn't joking.
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Old Feb 21st 2011, 1:38 am
  #189  
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Default Re: I'm going home, i've done my time!!

Originally Posted by dbd33 View Post
In contrast to the tales of progress above, I don't think there has been any significant change in my daughter in the past twenty years. I believe the "H block protest" phase ended before that though the image and smell come back to me as if it were this morning. That was the last big shift, despite the best efforts of medical professionals, gifted amateurs, quacks and the genuinely gifted.

She likes to bounce, like a frog (making me wonder about the origin of tales of Princes and frogs) on the floor or over an exercise ball and does so for most of her waking hours. In consequence, she has attained a level of strength and fitness beyond the wildest claims of the fitness chains.

This presents a problem in the context of teeth cleaning. If she doesn't want to have her teeth brushed, and this is as often as not the case, then one can give up on the idea or hold her down by sitting on her chest and risk the loss of a finger by shoving the brush in. The idea of losing a finger is not fanciful, she will bite, for that reason I don't sit her behind me in the car when driving. Feeling teeth sink into one's flesh is disturbing, it can make one drop one's phone. The problem with restraining her is that she's strong and wilful, unless she's evenly restrained she's capable of breaking a bone or dislocating a joint trying to resist. A past tantrum has left her feet twisted, she broke them repeatedly by stamping. Surgical boots cost a lot but didn't help to set them correctly. Apart from a reluctance to see one's child injure herself, one must be alert to the risk of intervention, the Children's Aid are not about to believe that a child, well an adult now, elected to break a bone. And so, the teeth fall into disrepair. Some dentists will clean and maintain them under a general anaesthetic but that, of course, is a dangerous and expensive business.

She likes water, splashing about, somewhere I've a set of pictures of the kitchen ceiling in one house in which we lived. The bathroom was over the kitchen and, in consequence of repeated splashings, the kitchen ceiling and the kitchen floor became one. Oddly though she's never had that need of routine or regularity typical of autism, take her to a hotel with a pool and she's delighted even though it's all new to her. Check though that no period is due, she's a physically a healthy woman not limited by any societal constraints. The pool could look like a scene from Jaws.

She likes music and has the idea that the knobs on the radio have something to do with making music come out. Most the radios she can reach have long since had the knobs removed but a problem in the car is that she jabs and twists the controls wildly, thus one drives along with one hand frenziedly switching the volume back to reasonable and the channel away from Cancon.

Exposure to autism changes people. My Mother used to say, of a frightening audience, "go on, they won't bite you" but still, until that comparison became tangible to me, I was reluctant to address large groups or to cold call. It changes one's parameters. This recently arrived, in a business email,

"We are all under a remarkable amount of pressure and stress. I know that I
must consciously focus on keeping things positive and constructive."

and I thought, "ffs, it's only your job at stake. You should have something to worry about".
Originally Posted by dbd33 View Post
If respect is warranted in this regard it's my ex who deserves it, second weekends and a while in the summer don't compare to every day. And there's a thing, few autistic people have parents who are together. Deciding how to deal with the autism, deciding jointly how far to go in seeking a remedy, how much? hiow weird? That'd be a trick.
Thank you for sharing the reality of your life dealing with a child with this illness, from someone with a child themselves dealing with the same issues, your post is exceptionally humbling.

I think your 2nd post raises another important point, about the other people affected by this issues, not just the child but the parents and equally important the siblings, who may be normal and are also having to learn to cope and deal day to day with the issues that autism raises.

Our son dotes on his little sister, and it is clear that she dotes on him, but quite often he says how he would love for her to be able to talk or play with him and asks why does she bite me if you say she loves me etc, it does have such a huge impact on everyone involved.

This is something that I came across one day which I read from time to time

http://www.child-autism-parent-cafe....-to-sleep.html
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Old Feb 21st 2011, 4:31 am
  #190  
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Default Re: I'm going home, i've done my time!!

Originally Posted by dbd33 View Post
In contrast to the tales of progress above, I don't think there has been any significant change in my daughter in the past twenty years. I believe the "H block protest" phase ended before that though the image and smell come back to me as if it were this morning. That was the last big shift, despite the best efforts of medical professionals, gifted amateurs, quacks and the genuinely gifted.

She likes to bounce, like a frog (making me wonder about the origin of tales of Princes and frogs) on the floor or over an exercise ball and does so for most of her waking hours. In consequence, she has attained a level of strength and fitness beyond the wildest claims of the fitness chains.

This presents a problem in the context of teeth cleaning. If she doesn't want to have her teeth brushed, and this is as often as not the case, then one can give up on the idea or hold her down by sitting on her chest and risk the loss of a finger by shoving the brush in. The idea of losing a finger is not fanciful, she will bite, for that reason I don't sit her behind me in the car when driving. Feeling teeth sink into one's flesh is disturbing, it can make one drop one's phone. The problem with restraining her is that she's strong and wilful, unless she's evenly restrained she's capable of breaking a bone or dislocating a joint trying to resist. A past tantrum has left her feet twisted, she broke them repeatedly by stamping. Surgical boots cost a lot but didn't help to set them correctly. Apart from a reluctance to see one's child injure herself, one must be alert to the risk of intervention, the Children's Aid are not about to believe that a child, well an adult now, elected to break a bone. And so, the teeth fall into disrepair. Some dentists will clean and maintain them under a general anaesthetic but that, of course, is a dangerous and expensive business.

She likes water, splashing about, somewhere I've a set of pictures of the kitchen ceiling in one house in which we lived. The bathroom was over the kitchen and, in consequence of repeated splashings, the kitchen ceiling and the kitchen floor became one. Oddly though she's never had that need of routine or regularity typical of autism, take her to a hotel with a pool and she's delighted even though it's all new to her. Check though that no period is due, she's a physically a healthy woman not limited by any societal constraints. The pool could look like a scene from Jaws.

She likes music and has the idea that the knobs on the radio have something to do with making music come out. Most the radios she can reach have long since had the knobs removed but a problem in the car is that she jabs and twists the controls wildly, thus one drives along with one hand frenziedly switching the volume back to reasonable and the channel away from Cancon.

Exposure to autism changes people. My Mother used to say, of a frightening audience, "go on, they won't bite you" but still, until that comparison became tangible to me, I was reluctant to address large groups or to cold call. It changes one's parameters. This recently arrived, in a business email,

"We are all under a remarkable amount of pressure and stress. I know that I
must consciously focus on keeping things positive and constructive."

and I thought, "ffs, it's only your job at stake. You should have something to worry about".
I hear dbd33. although my son isn't the same as your daughter, I have been paid to work with adults with the same things that you speak of. I've been on the receiving end of the biting, spiting and punches now and again but that was my 'paid' job, so emotion as a parent didn't really come into it but i do remember my sons outburst when he was young and that used to really upset me as you take it personally and i remember the frustration, and the pain, of not being able to put an end to it.
Kudos to you and your ex for sticking with it, as my work has taught me that many don't and put their children/adults into care as they can't cope...i'm not saying there's anything wrong with that i'm just giving you my respect for not doing. I hope that doesn't sound condescending in anyway, its not meant to.
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Old Feb 21st 2011, 4:38 am
  #191  
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Default Re: I'm going home, i've done my time!!

Originally Posted by dbd33 View Post
If respect is warranted in this regard it's my ex who deserves it, second weekends and a while in the summer don't compare to every day. And there's a thing, few autistic people have parents who are together. Deciding how to deal with the autism, deciding jointly how far to go in seeking a remedy, how much? hiow weird? That'd be a trick.
I've read somewhere that 90% of parents of autistic children end up separated or divorced. It nearly ended our relationship years ago but luckily my OH worked away a lot so he had to do things my way as he was hardly ever around so took my lead, but i do remember saying to him once, 'its my way or the highway'. Thankfully he stuck with it!
I do remember being obsessed (for want of a better word) about finding out why and how to 'cure' him and it took up most of my time so i'm guessing that happens to many parents a long with the stresses that go hand in hand.
I always resented never being able to go to work as no one could handle my son when he was young so a social life other than spending time with other parents with autistic kids was non existent.
Anyway all the best to you all
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Old Feb 21st 2011, 9:23 am
  #192  
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Default Re: I'm going home, i've done my time!!

Originally Posted by dbd33 View Post
In contrast to the tales of progress above, I don't think there has been any significant change in my daughter in the past twenty years. I believe the "H block protest" phase ended before that though the image and smell come back to me as if it were this morning. That was the last big shift, despite the best efforts of medical professionals, gifted amateurs, quacks and the genuinely gifted.

She likes to bounce, like a frog (making me wonder about the origin of tales of Princes and frogs) on the floor or over an exercise ball and does so for most of her waking hours. In consequence, she has attained a level of strength and fitness beyond the wildest claims of the fitness chains.

This presents a problem in the context of teeth cleaning. If she doesn't want to have her teeth brushed, and this is as often as not the case, then one can give up on the idea or hold her down by sitting on her chest and risk the loss of a finger by shoving the brush in. The idea of losing a finger is not fanciful, she will bite, for that reason I don't sit her behind me in the car when driving. Feeling teeth sink into one's flesh is disturbing, it can make one drop one's phone. The problem with restraining her is that she's strong and wilful, unless she's evenly restrained she's capable of breaking a bone or dislocating a joint trying to resist. A past tantrum has left her feet twisted, she broke them repeatedly by stamping. Surgical boots cost a lot but didn't help to set them correctly. Apart from a reluctance to see one's child injure herself, one must be alert to the risk of intervention, the Children's Aid are not about to believe that a child, well an adult now, elected to break a bone. And so, the teeth fall into disrepair. Some dentists will clean and maintain them under a general anaesthetic but that, of course, is a dangerous and expensive business.

She likes water, splashing about, somewhere I've a set of pictures of the kitchen ceiling in one house in which we lived. The bathroom was over the kitchen and, in consequence of repeated splashings, the kitchen ceiling and the kitchen floor became one. Oddly though she's never had that need of routine or regularity typical of autism, take her to a hotel with a pool and she's delighted even though it's all new to her. Check though that no period is due, she's a physically a healthy woman not limited by any societal constraints. The pool could look like a scene from Jaws.

She likes music and has the idea that the knobs on the radio have something to do with making music come out. Most the radios she can reach have long since had the knobs removed but a problem in the car is that she jabs and twists the controls wildly, thus one drives along with one hand frenziedly switching the volume back to reasonable and the channel away from Cancon.

Exposure to autism changes people. My Mother used to say, of a frightening audience, "go on, they won't bite you" but still, until that comparison became tangible to me, I was reluctant to address large groups or to cold call. It changes one's parameters. This recently arrived, in a business email,

"We are all under a remarkable amount of pressure and stress. I know that I
must consciously focus on keeping things positive and constructive."

and I thought, "ffs, it's only your job at stake. You should have something to worry about".
What a wonderful post and I want to thank you so much for it! I also want to apologise to you for some of my earlier posts ... you are obviously extremely knowledgeable about autism, and I have a lot of respect for you. Having read this, your earlier post all make much more sense!

I love that way you've written about your daughter, you have a real gift with words! Your post made me both smile and cry at the same time! What you and your ex have to deal with makes me extremely humble.

Like someone else has already said - I too think that this is the best post I've ever read on BE. Thanks again for allowing us a glimpse of your daughter's life.
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Old Feb 21st 2011, 2:17 pm
  #193  
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Default Re: I'm going home, i've done my time!!

My worst fears dbd33. Somehow dealing with all the issues that we have now with our son when he grows lot bigger. We see some of the progress that he has made and selfishly hope that it continues so that we don't have some of the challenges that you face.

I don't know you but for you and every other long suffering parent of an autistic child I repeat Danny B's remark.You have my utmost respect.

Last edited by stepnek; Feb 21st 2011 at 4:10 pm.
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Old Feb 22nd 2011, 2:03 pm
  #194  
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Default Re: I'm going home, i've done my time!!

Man, I am glad that this thread wasnt closed. Thanks to all who have contributed.
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Old Feb 22nd 2011, 2:39 pm
  #195  
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Default Re: I'm going home, i've done my time!!

Originally Posted by nikki dreaming View Post
I think your 2nd post raises another important point, about the other people affected by this issues, not just the child but the parents and equally important the siblings, who may be normal and are also having to learn to cope and deal day to day with the issues that autism raises.
I don't think the effect on the siblings while they are young is much of a concern. They get a bit harder due to getting into fights with kids who bully the autistic sibling. They're more aware of mental health issues than they would otherwise be. They're less prone to embarassment due to having lived through scenes that would make most kids cringe. They may miss out on some activities due to the time and funding demands of the autistic sibling.
I don't think though that they're fundamentally different than would otherwise be the case.

What is a huge concern is the potential effect on them when they all grow up, specifically when the parents are dead or incapable of dealing with the autistic sibling. In some countries, European ones, the parents will have had the option to "put their children/adults into care". If they have elected not to do so then the siblings are eventually faced with making that decision. That, or deciding to dedicate their life to the care of the autistic person, something which likely implies forgoing life with a partner. That's not a legacy for which most children would thank their parents.

In Canada and the US the parents likely don't have the option, the disabled are primarily the responsibility of their families, not of the State. If one lives in one of the religious communties, Hutterite, Mennonite, Polygamist Mormon, popular in North America then "Care in the Community" may amount to something. If one is properly rich then caring can be purchased. Otherwise, votes cast for the religious right, the likes of Reagan, Harris, Harper and Bush the younger, mean that the austic person is the family's problem. In all likelihood the autistic person's siblings are left if not literally in the shit then, at least, mopping it.
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