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<blockquote data-quote="Marguerite" data-source="post: 252593" data-attributes="member: 1991"><p>Unsupportive family only maks it more difficult.</p><p></p><p>To be fair to them - they are very much in denial. We all grieve the loss of the child we thought we had, the child we longed for, the perfect, brilliant child. The further we are away from the coalface, the longer we grieve. There is something about dealing with the reality of it day after day, that helps you face up to it faster and overcome the grief.</p><p></p><p>Give your family time. Don't rub noses in anything, maybe even don't tell them stuff until they can handle it. I had problems with my in-laws not accepting that there was anything wrong. father in law never knew about difficult child 3's autism, may not have handled it too well. He wasn't comfortable with the ADHD diagnosis for difficult child 1. I'm sure he would have come round eventually, he was a wonderul man and I know where his concerns came from. However, there were some things I learned to not tell him or mother in law. There are still some things I'm reluctant to tell mother in law, if I think she will get upset about it. But as she now spends a lot more time with us and sees the kids close-up, she is more aware of t he problems as well as their good points. She's come with me a few times to appointments with psychologists, which in previous years would have had her shuddering and refusing to come inside. I explain to her what the appointments are for and as long as I can find a practical reason (and nothing purely "touchy feely") then she is happy with it. Of course this means I sometimes lie to her.</p><p></p><p>I guess what I'm trying to say - if family aren't ready to accept that there is a problem, then don't lean on them for support until they CAN handle it. The same goes for friends, even your closest friends. My best friend can sometimes be incredibly thoughtless and dogmatic about thigns that surprise me. I've learned to not go there, if it's going to cause a problem. We have too many other areas where we DO have a meeting of minds. And in time, mere exposure can soften her attitude.</p><p></p><p>This means you need to find your support place, either here or your local network (or both). That way when you talk to family, it can be about family things - what was Uncle Albert thinking, to dance on the collapsible antique bridge table? You may find yourself not attending so many family gatherings, or perhaps staying for much shorter times, or not taking difficult child. Again, it depends on who will be there and how they handle things. </p><p></p><p>One thing that helped - if anyone had a go at me, saying, "There's nothing wrong with him, why on earth do you keep insisting your kid has a problem?" my answer was, "I didn't diagnose him. I don't have the qualifications. He's been assessed by a number of different people who all agree on what is wrong, and together all these people are working with us to help him be the best he can be. Argue with them if you want to, you go talk to them but leave me out of it. He's an amazing kid, but he is going to need a bit more help and understanding than average. It would be good to have you on board with this. I know you love him like I do."</p><p></p><p>With Pervasive Developmental Disorder (PDD), people find it most difficult because they see the high function stuff and assume that the child is ALL like this, and it's not just splinter skills. People don't understand savants. Even difficult child 3's English teacher last year, a nice person and an experienced teacher, experienced difficult child 3's superior vocabulary and ability to write poetry, and expected him to be able to write an essay - he just can't, he doesn't know how to phrase an argument or to even discuss a topic without giving you either far too much or far too little. He goes off topic. There are tools he can use and can improve, but the level of support he needs seems at odds with his superior ability in some areas. Crikey, even I can't explain exactly where the borders of his abilities lie, so if I don't fully 'get it', how can I expect his teacher to?</p><p></p><p>But it IS frustrating!</p><p></p><p>Meanwhile, the child soldiers on, and whatever he does I have learned to watch, because he seems to instinctively work in ways that are best for him to learn, everything he does is geared towards helping him adapt to a world in which he will always feel an outsider. He is learning, often when we're completely unaware of it and he seems to be wasting time.</p><p></p><p>Watch your child - you may see similar things. Apparent lack of progress, frustrating you for ages; then he will do it seemingly overnight, perfectly. Infuriating, if you let it get to you. But wonderful, in another way.</p><p></p><p>One last strong recommendation - keep a diary. YOu WILL forget stuff, and there is a lot of it. But reading back over it a few years later will give you a great deal of encouragement, when you see just how far you will have come.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 252593, member: 1991"] Unsupportive family only maks it more difficult. To be fair to them - they are very much in denial. We all grieve the loss of the child we thought we had, the child we longed for, the perfect, brilliant child. The further we are away from the coalface, the longer we grieve. There is something about dealing with the reality of it day after day, that helps you face up to it faster and overcome the grief. Give your family time. Don't rub noses in anything, maybe even don't tell them stuff until they can handle it. I had problems with my in-laws not accepting that there was anything wrong. father in law never knew about difficult child 3's autism, may not have handled it too well. He wasn't comfortable with the ADHD diagnosis for difficult child 1. I'm sure he would have come round eventually, he was a wonderul man and I know where his concerns came from. However, there were some things I learned to not tell him or mother in law. There are still some things I'm reluctant to tell mother in law, if I think she will get upset about it. But as she now spends a lot more time with us and sees the kids close-up, she is more aware of t he problems as well as their good points. She's come with me a few times to appointments with psychologists, which in previous years would have had her shuddering and refusing to come inside. I explain to her what the appointments are for and as long as I can find a practical reason (and nothing purely "touchy feely") then she is happy with it. Of course this means I sometimes lie to her. I guess what I'm trying to say - if family aren't ready to accept that there is a problem, then don't lean on them for support until they CAN handle it. The same goes for friends, even your closest friends. My best friend can sometimes be incredibly thoughtless and dogmatic about thigns that surprise me. I've learned to not go there, if it's going to cause a problem. We have too many other areas where we DO have a meeting of minds. And in time, mere exposure can soften her attitude. This means you need to find your support place, either here or your local network (or both). That way when you talk to family, it can be about family things - what was Uncle Albert thinking, to dance on the collapsible antique bridge table? You may find yourself not attending so many family gatherings, or perhaps staying for much shorter times, or not taking difficult child. Again, it depends on who will be there and how they handle things. One thing that helped - if anyone had a go at me, saying, "There's nothing wrong with him, why on earth do you keep insisting your kid has a problem?" my answer was, "I didn't diagnose him. I don't have the qualifications. He's been assessed by a number of different people who all agree on what is wrong, and together all these people are working with us to help him be the best he can be. Argue with them if you want to, you go talk to them but leave me out of it. He's an amazing kid, but he is going to need a bit more help and understanding than average. It would be good to have you on board with this. I know you love him like I do." With Pervasive Developmental Disorder (PDD), people find it most difficult because they see the high function stuff and assume that the child is ALL like this, and it's not just splinter skills. People don't understand savants. Even difficult child 3's English teacher last year, a nice person and an experienced teacher, experienced difficult child 3's superior vocabulary and ability to write poetry, and expected him to be able to write an essay - he just can't, he doesn't know how to phrase an argument or to even discuss a topic without giving you either far too much or far too little. He goes off topic. There are tools he can use and can improve, but the level of support he needs seems at odds with his superior ability in some areas. Crikey, even I can't explain exactly where the borders of his abilities lie, so if I don't fully 'get it', how can I expect his teacher to? But it IS frustrating! Meanwhile, the child soldiers on, and whatever he does I have learned to watch, because he seems to instinctively work in ways that are best for him to learn, everything he does is geared towards helping him adapt to a world in which he will always feel an outsider. He is learning, often when we're completely unaware of it and he seems to be wasting time. Watch your child - you may see similar things. Apparent lack of progress, frustrating you for ages; then he will do it seemingly overnight, perfectly. Infuriating, if you let it get to you. But wonderful, in another way. One last strong recommendation - keep a diary. YOu WILL forget stuff, and there is a lot of it. But reading back over it a few years later will give you a great deal of encouragement, when you see just how far you will have come. Marg [/QUOTE]
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