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Slightly hopeful, but mostly terrified
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<blockquote data-quote="Marguerite" data-source="post: 252135" data-attributes="member: 1991"><p>Kids who "recover" - if you read "Son Rise" the boy in that received the equivalent of intense one-on-one intervention from his parents, and it made an amazing difference. The boy ended up functioning normally, no sign of autism. </p><p></p><p>But is this recovery? I personally view it as adaptation. That's not to say you don't rejoice when the awful prognosis you were given for your child fails to eventuate. Of course if I no longer had to provide the levle of support and understanding we do for our kids, I would be so relieved and relaxed. But what we actually deal with, is a level of functional improvement (which will vary from person to person) based on how well that can adapt. difficult child 3 describes it as "pretending to be normal". He was 8 years old before we were able to explain to him about his autism. Before that, he didn't have the language comprehension to be able to understand at all; even at 8, it was tricky but we had arranged a Sixth Sense intervention for his class at school and difficult child 3 sat in on it, for the first session. It helped them all understand that autism is something you're born with, it involves deficits in the Social Sense (the 'sixth' sense) and just as with anybody who has a problem with one of the senses (seeing, hearing, touch, smell, taste) you help the person because you have an ability they do not, but apart from lacking that ability, the person is otherwise just like you.</p><p></p><p>If you have a child diagnosed with autism who at a later stage appears to function normally, that is wonderful. But always be ready for the time when pressure may get too great or something may step in to interfere with their coping skills. That is when you can be caught by surprise. Adaptation is not a cure, it just LOOKS like one.</p><p></p><p>An example - one of my sisters was brain-damaged in childhood by a very high fever. She had significant learning problems, ended up not being able to finish school, left school as soon as she was old enough legally and was given a job with a high level of support. She had short-term memory problems and simply hadn't been able to learn. She was literate - barely. She had been five years old when she became ill, that was before I was born. So all I ever knew of her, was as someone with problems but otherwise loving. However, she didn't cope with change well and we really had to work to keep her stress levels down. </p><p></p><p>As she got older, and as her work environment slowly adapted to her and vice versa, she continued recovery. She did a couple of courses and her boss found she was very good at transcribing numbers, so she was given charge of the ledgers. Then she was taught how to balance the books and slowly her capabilities improved. About ten years after leaving school, she got married. He was her first boyfriend, a nice bloke from church. They had a long engagement. After they married they lived near us, Mum was always nearby to talk to her. I think she found marriage very stressful to begin with, but her husband was the tall, dark, strong and silent type, she felt safe and protected.</p><p></p><p>They didn't have kids for another five years, but having a baby was a HUGE change for her, and she went t pieces. By that stage she seemed perfectly well, mentally. She had recovered to the point where she was keeping the books for the business, managing the branch store all on her own, supervising staff - she was doing brilliantly. But first baby - she was a mess again. She was on maternity leave, so she didn't have to worry about work as well as baby, but she came home for a couple of months while Mum got her head straight again.</p><p></p><p>My sister is doing brilliantly these days. She is now a grandmother several times over. She continued to get stronger mentally, she went back to school and completed formal qualifications. She is now a qualified accountant. Her caring, loving husband - the strong silent type turned out to be someone who was not capable of prooviding the moral support she needed, and so she HAD to learn to stand on her own two feet emotionally. One day she realised the marriage was over - she no longer needed him. It as very sad for him, he had done nothing wrong. Neither had she - she had simply, finally, grown up at last. She was 40 and had finally realised she was recovered and no longer mentally a child. </p><p>The divorce was a bit messy, but they are now friends. She has remarried, so has he.</p><p></p><p>My point is - we thought she was doing well and had recovered, at a number of points in her life. But recovery for her has been an ongoing process. When our parents were dying, she HAD to be there at their side (I couldn't get there, I was resigned to it). She had to be very strong (not like her as she had been) and took on a lot of caring. It was stressful, but she handled it. But still, sometimes, when something sudden or drastic happens - she begins to lose it and someone (usually her current husband these days, or her twin sister) steps in to talk her down from her panic. Each crisis she has had to deal with, has made her stronger and more confident. </p><p></p><p>When I look back to how far she has come, I am amazed. But when I look at her and then at her twin, I can see the remnants of the problems still there.</p><p></p><p>Anyone who knows her, but not the history, won't realise there has ever been a problem. But WE know. And we look out for her.</p><p></p><p>On the topic of kids who need support even as adults - I'm again looking for a job for difficult child 1. What has worked for us, because he really doesn't present well, is getting pushy. I know difficult child 1 can make a bad impression at interview and he's hopeless at making appointments for himself and trying to organise himself to do courses, get to an interview etc. SO I've done it. There mere fact that Mummy is making the call for him, can put people off. Often we've been told that there are no vacancies, when I hear independently that they are still looking.</p><p></p><p>So here is what we've done - I call the place, I tell them that difficult child 1 has Asperger's Syndrome which can give them the impression that he doesn't fit in. But there are positive advantages to having an employee with Asperger's - he is honest, loyal, trustworthy and when given a task to do will do it to perfection. He may need extra support initially when learning how to do something, he may need instructions and steps written down initially also. But he is very, very smart.</p><p>Often at this point they say, "We have no vacancies at the moment."</p><p>Thath's when I say, "That's OK. But he really would like to get a feel for what it would be like to work in this industry. So please can he come and work for you for nothing for a couple of days, just to see if this really is the career path he wants?"</p><p></p><p>Very few employers will knock back the chance of free labour. And what happens - they get to know difficult child 1, they get to see him working and get a feel for what he can do. If nothing happens after two days and they still don't ant him to work for thrm, that's OK. He can say to the next person we apply to, that he has had a couple of days' experience working in the industry and liked it. And we try thr same thing again - "give him a couple of days' working alongside you for nothing, see what you think and any advice you can give him on his prospects, he will be sufficiently repaid."</p><p></p><p>I have to negotiate this for him because he is really bad at negotiating on his own behalf. But this is what has worked for us, when for months and months, nothing else was getting us even to interview stage.</p><p></p><p>If a prospective employer asks why I am making the calls on his behalf, I do have to say, "He isn't confident telephoning people he's not met before. Once he's in a routine and feels confident in what he's doing and who he works with, you wouldn't notice anything unusual. But this is a disability, it has hampered his chances up until now which is a shame because a lot of employers out there don't know what a gem they're missing out on."</p><p></p><p>I play the card that says, yes it is a disability, but it also has some aspects to it that an employer can find very much to his advantage. Just as someone who is colour-blind is an asset to counter-espionage and military intelligence, so someone on the autism spectrum can be exactly what the job needs, in a number of professions.</p><p></p><p>I have my script ready for each phone call and I make it clear - I won't be fobbed off, not until they have met him and given him a go for free. I also make sure he does volunteer work while he's unemployed, so he's not sitting on his duff feeling sorry for himself. The volunteer work goes on his resume.</p><p></p><p>We're also lucky that difficult child 1 belongs to an agency that places people with disabilities into the workforce, and supports them professionally. We've been very glad of them. I work with them to help further.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 252135, member: 1991"] Kids who "recover" - if you read "Son Rise" the boy in that received the equivalent of intense one-on-one intervention from his parents, and it made an amazing difference. The boy ended up functioning normally, no sign of autism. But is this recovery? I personally view it as adaptation. That's not to say you don't rejoice when the awful prognosis you were given for your child fails to eventuate. Of course if I no longer had to provide the levle of support and understanding we do for our kids, I would be so relieved and relaxed. But what we actually deal with, is a level of functional improvement (which will vary from person to person) based on how well that can adapt. difficult child 3 describes it as "pretending to be normal". He was 8 years old before we were able to explain to him about his autism. Before that, he didn't have the language comprehension to be able to understand at all; even at 8, it was tricky but we had arranged a Sixth Sense intervention for his class at school and difficult child 3 sat in on it, for the first session. It helped them all understand that autism is something you're born with, it involves deficits in the Social Sense (the 'sixth' sense) and just as with anybody who has a problem with one of the senses (seeing, hearing, touch, smell, taste) you help the person because you have an ability they do not, but apart from lacking that ability, the person is otherwise just like you. If you have a child diagnosed with autism who at a later stage appears to function normally, that is wonderful. But always be ready for the time when pressure may get too great or something may step in to interfere with their coping skills. That is when you can be caught by surprise. Adaptation is not a cure, it just LOOKS like one. An example - one of my sisters was brain-damaged in childhood by a very high fever. She had significant learning problems, ended up not being able to finish school, left school as soon as she was old enough legally and was given a job with a high level of support. She had short-term memory problems and simply hadn't been able to learn. She was literate - barely. She had been five years old when she became ill, that was before I was born. So all I ever knew of her, was as someone with problems but otherwise loving. However, she didn't cope with change well and we really had to work to keep her stress levels down. As she got older, and as her work environment slowly adapted to her and vice versa, she continued recovery. She did a couple of courses and her boss found she was very good at transcribing numbers, so she was given charge of the ledgers. Then she was taught how to balance the books and slowly her capabilities improved. About ten years after leaving school, she got married. He was her first boyfriend, a nice bloke from church. They had a long engagement. After they married they lived near us, Mum was always nearby to talk to her. I think she found marriage very stressful to begin with, but her husband was the tall, dark, strong and silent type, she felt safe and protected. They didn't have kids for another five years, but having a baby was a HUGE change for her, and she went t pieces. By that stage she seemed perfectly well, mentally. She had recovered to the point where she was keeping the books for the business, managing the branch store all on her own, supervising staff - she was doing brilliantly. But first baby - she was a mess again. She was on maternity leave, so she didn't have to worry about work as well as baby, but she came home for a couple of months while Mum got her head straight again. My sister is doing brilliantly these days. She is now a grandmother several times over. She continued to get stronger mentally, she went back to school and completed formal qualifications. She is now a qualified accountant. Her caring, loving husband - the strong silent type turned out to be someone who was not capable of prooviding the moral support she needed, and so she HAD to learn to stand on her own two feet emotionally. One day she realised the marriage was over - she no longer needed him. It as very sad for him, he had done nothing wrong. Neither had she - she had simply, finally, grown up at last. She was 40 and had finally realised she was recovered and no longer mentally a child. The divorce was a bit messy, but they are now friends. She has remarried, so has he. My point is - we thought she was doing well and had recovered, at a number of points in her life. But recovery for her has been an ongoing process. When our parents were dying, she HAD to be there at their side (I couldn't get there, I was resigned to it). She had to be very strong (not like her as she had been) and took on a lot of caring. It was stressful, but she handled it. But still, sometimes, when something sudden or drastic happens - she begins to lose it and someone (usually her current husband these days, or her twin sister) steps in to talk her down from her panic. Each crisis she has had to deal with, has made her stronger and more confident. When I look back to how far she has come, I am amazed. But when I look at her and then at her twin, I can see the remnants of the problems still there. Anyone who knows her, but not the history, won't realise there has ever been a problem. But WE know. And we look out for her. On the topic of kids who need support even as adults - I'm again looking for a job for difficult child 1. What has worked for us, because he really doesn't present well, is getting pushy. I know difficult child 1 can make a bad impression at interview and he's hopeless at making appointments for himself and trying to organise himself to do courses, get to an interview etc. SO I've done it. There mere fact that Mummy is making the call for him, can put people off. Often we've been told that there are no vacancies, when I hear independently that they are still looking. So here is what we've done - I call the place, I tell them that difficult child 1 has Asperger's Syndrome which can give them the impression that he doesn't fit in. But there are positive advantages to having an employee with Asperger's - he is honest, loyal, trustworthy and when given a task to do will do it to perfection. He may need extra support initially when learning how to do something, he may need instructions and steps written down initially also. But he is very, very smart. Often at this point they say, "We have no vacancies at the moment." Thath's when I say, "That's OK. But he really would like to get a feel for what it would be like to work in this industry. So please can he come and work for you for nothing for a couple of days, just to see if this really is the career path he wants?" Very few employers will knock back the chance of free labour. And what happens - they get to know difficult child 1, they get to see him working and get a feel for what he can do. If nothing happens after two days and they still don't ant him to work for thrm, that's OK. He can say to the next person we apply to, that he has had a couple of days' experience working in the industry and liked it. And we try thr same thing again - "give him a couple of days' working alongside you for nothing, see what you think and any advice you can give him on his prospects, he will be sufficiently repaid." I have to negotiate this for him because he is really bad at negotiating on his own behalf. But this is what has worked for us, when for months and months, nothing else was getting us even to interview stage. If a prospective employer asks why I am making the calls on his behalf, I do have to say, "He isn't confident telephoning people he's not met before. Once he's in a routine and feels confident in what he's doing and who he works with, you wouldn't notice anything unusual. But this is a disability, it has hampered his chances up until now which is a shame because a lot of employers out there don't know what a gem they're missing out on." I play the card that says, yes it is a disability, but it also has some aspects to it that an employer can find very much to his advantage. Just as someone who is colour-blind is an asset to counter-espionage and military intelligence, so someone on the autism spectrum can be exactly what the job needs, in a number of professions. I have my script ready for each phone call and I make it clear - I won't be fobbed off, not until they have met him and given him a go for free. I also make sure he does volunteer work while he's unemployed, so he's not sitting on his duff feeling sorry for himself. The volunteer work goes on his resume. We're also lucky that difficult child 1 belongs to an agency that places people with disabilities into the workforce, and supports them professionally. We've been very glad of them. I work with them to help further. Marg [/QUOTE]
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