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At my breaking point...new here
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<blockquote data-quote="Marguerite" data-source="post: 202800" data-attributes="member: 1991"><p>With occupational therapy, the first sessions are most likely going to be - what is she like? What are the problems? They may get straight into the sensory issues with some techniques for helping reduce her sensitivity. If you and your husband are good at communicating with each other, if you think either of you could give the full picture to the therapist and could in turn pass all the information back from the therapist, then by all means just go separately. husband & I have had to do this a lot - mostly I've taken difficult child 3 to appointments (or the other kids) but sometimes, if he can get time off work, he will come along too. There was a time when I was in hospital and there were lots of appointments organised, and husband had to take them; he arranged (where possible) for me to be present via speakerphone.</p><p></p><p>Your daughter's problems are likely to be complex. The Sensory Integration Disorder (SID) stuff could be stand-alone, connected to her rough start and need for gastric feeding. Or it could be connected to something like Pervasive Developmental Disorder (PDD). So hopefully an Occupational Therapist (OT) will take time and not treat her like just another Sensory Integration Disorder (SID) case. </p><p></p><p>As for a Pervasive Developmental Disorder (PDD) diagnosis being scary - I sympathise. I felt like that when I was younger especially when I read articles on autism. I always wanted kids and grew up with a mother who was chronically ill. I was always having to step in to get meals, to do other tasks. I also helped with various babies my sisters had, when they came home to stay for a while and learned to cope with the new baby. School holidays - I was babysitting. One of my sisters adopted some special needs kids, I was there helping. I could cope, I felt sure, when my time came. A kid with hearing impairment, vision problems, even learning problems - it would be difficult but I could handle it. As onlg as I didn't have a child with autism. I knew I'd never cope with that. There was something in the description of a kid who was emotionally cold, distant and uncommunicative that absolutely terrified me.</p><p></p><p>Then I got three. Justice? I don't know. What I have learned, though - what I read about autism when I was younger was very, very misguided and very, very pessimistic. All the scary stories have turned out to be untrue, misguided, just plain wrong. Autistic kids can't love? Bunkum. They feel, they love, they are very loving indeed. They can express emotions, they feel deeply. Almost more deeply. But they don't always express emotions in ways we recognise.</p><p></p><p>Autistic kids can't learn - again, rubbish. They can learn with lightning speed when they are ready to learn a new skill. But yes, they can sometimes struggle with something for a lot longer than you would think. Then one day the penny drops, often because someone has presented the information in a different way that just clicks with them. Life with an autistic child can seem monotonous with no progress - until all progress happens in one day. Then another period with little progress - then another leap of milestones. It can be very exciting. And once you learn what triggers the milestone leaps - it's make sure you have a tight grip on the reins, and hold on for a wild ride. If your daughter has any area of special interest, indulge her. </p><p></p><p>You're already learning how giving way on sensory issues can make everyone's life more pleasant. Even my easy child has some sensory issues, perhaps it's as much of the Pervasive Developmental Disorder (PDD) as she has, being a sibling of Pervasive Developmental Disorder (PDD) kids. But I have always had to 'vet' all knitwear coming into the house, for example. husband has been a campaigner for the use of good Aussie wool in clothing, nothing else is good enough for HIS kids. Only his kids refused to wear pure wool, because we just couldn't get any that wasn't too scratchy for them. Now, it IS possible to get wool that isn't scratchy. But to our kids - ALL of it was scratchy. We have had to compromise with acrylic.</p><p></p><p>I grew up with only the cheaper Aussie wool products and I could sympathise with my kids - I hated the scratchy feel of wool, too, I learned to put up with it. We have more choice these days. husband has finally had to accept that some synthetics are a good second choice, because at least the kids will wear them!</p><p></p><p>Shirt labels - cutting them out wasn't good enough. It can often leave a scratchy raw edge, so I learned to unpick the label entirely, then re-sew the seam. It can be fiddly trying to find the source of discomfort, but it's worth the trouble. You get more compliance form achild who is comfortable.</p><p></p><p>Sometimes you have to go back to what you would do for a baby - if you want to show your new darling off to doting relatives, you make sure the baby is comfortable, fed and rested. That way she will be more likely to behave and not scream over-much. It's much the same with a Sensory Integration Disorder (SID) child - keep them comfortable, they will be more malleable.</p><p></p><p>The same logic has me keeping food available to my kids, especially after school. I would expect the kids to come home tired, hungry and cranky. Feeding them as soon as they walked in the door went a long way to putting a smile back on the cranky face. I often, when they first started school, had to give them their evening meal right after school. If they were still up later on and hungry, they would get their afternoon tea snack then. But if they were too tired to eat their dinner later on, it didn't matter if I'd already fed it to them.</p><p></p><p>Your daughter is your daughter. She has problems, you can see that. If you can help her at least with the Sensory Integration Disorder (SID), you will be making life a little more comfortable for her and also showing her that your aim is to help her. You hopefully should see some improvement in her behaviour.</p><p></p><p>Whatever is wrong with her, is already wrong. Thinking about possibilities won't make them materialise out of nothing. I know you know this, but sometimes we forget; our fears drive us to stay away from some areas because we just don't want to go there.</p><p></p><p>I've learned some wonderful things about Pervasive Developmental Disorder (PDD). This isn't just me making the best of a bad lot - I have been finding out for myself that whatever Pervasive Developmental Disorder (PDD) is, it's nothing like the "autism" that was described, when I was younger. It's almost diametrically opposed. Of all the things that could have been wrong with my kids, I now feel I've been handed the package I could best cope with. I've also realised how wrong a lot of the information has been. In the time I've had to deal with this diagnosis (a bit over 10 years) I've learned a lot. I've also had to re-learn a lot and I'm seeing my own independent learning now being independently recognised as researchers constantly rewrite the guidelines. Just in the last two years, our education department has done a complete reversal in how they manage students with autism. Not just a change in how they manage - but a complete 180 degree turnaround.</p><p></p><p>Your daughter may be just Sensory Integration Disorder (SID) plus ADHD. However, she will still be similar enough to my difficult child 3, that something we do may help you - watch her. See how she functions, the sort of things that comfort her and seem to calm her. Then try and help her continue to have access to this. Because one thing these kids are already good at even when very young - they have learnt at least partly, how they learn best, how they feel best. A lot of this may change later, but for now, if it works - do it. Go with the flow. Relax, follow her lead at least as far as your parenting allows you.</p><p></p><p>Some things we've allowed our boys - difficult child 3 loved to cuddle a towel, especially when he was tired or sad. So I made him some shorts out of an old towel. I covered a pillow in towelling. I keep an old towel in the car so when he was tired, he could cuddle the towel to go to sleep in the car.</p><p>Something else - we got a new washing machine, it came in a giant cardboard box. We left tat cardboard box in our living room and let the boys sit inside it to do their homework. difficult child 1 cut a small window in the box and filled the box with cushions. The boys would sit inside the box and watch TV through the hole. They liked the feeling of being enclosed, but I could still use it to get their work done.</p><p></p><p>A hammock - the boys liked to be completely wrapped up in the hammock, but because it was net, they could easily breathe. Again, feeling enclosed. The swinging also helped a lot. There are other good exercises for them - throwing them a ball (and having them throw it back) while swinging. Since then, the Nintendo Wii has come out and seems to mimic a lot of these really good exercises that were once so popular with occupational therapists before a certain entrepreneur began marketing this as his own method (long story, I ranted about it a year ago or more). The Wii Fit will do a lot of these exercises - again, talk to the Occupational Therapist (OT) about it or try one at a friend's house.</p><p></p><p>You may find some very different things that work for your daughter. It's just a matter of being open to it and watching what she does with her environment.</p><p></p><p>Anyway, I hope you are seeing some improvements already. Have courage, you are back on track to finding your daughter and getting her the help she needs.</p><p></p><p>Keep us posted on how you get on with the Occupational Therapist (OT). I think that is a really good next step.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 202800, member: 1991"] With occupational therapy, the first sessions are most likely going to be - what is she like? What are the problems? They may get straight into the sensory issues with some techniques for helping reduce her sensitivity. If you and your husband are good at communicating with each other, if you think either of you could give the full picture to the therapist and could in turn pass all the information back from the therapist, then by all means just go separately. husband & I have had to do this a lot - mostly I've taken difficult child 3 to appointments (or the other kids) but sometimes, if he can get time off work, he will come along too. There was a time when I was in hospital and there were lots of appointments organised, and husband had to take them; he arranged (where possible) for me to be present via speakerphone. Your daughter's problems are likely to be complex. The Sensory Integration Disorder (SID) stuff could be stand-alone, connected to her rough start and need for gastric feeding. Or it could be connected to something like Pervasive Developmental Disorder (PDD). So hopefully an Occupational Therapist (OT) will take time and not treat her like just another Sensory Integration Disorder (SID) case. As for a Pervasive Developmental Disorder (PDD) diagnosis being scary - I sympathise. I felt like that when I was younger especially when I read articles on autism. I always wanted kids and grew up with a mother who was chronically ill. I was always having to step in to get meals, to do other tasks. I also helped with various babies my sisters had, when they came home to stay for a while and learned to cope with the new baby. School holidays - I was babysitting. One of my sisters adopted some special needs kids, I was there helping. I could cope, I felt sure, when my time came. A kid with hearing impairment, vision problems, even learning problems - it would be difficult but I could handle it. As onlg as I didn't have a child with autism. I knew I'd never cope with that. There was something in the description of a kid who was emotionally cold, distant and uncommunicative that absolutely terrified me. Then I got three. Justice? I don't know. What I have learned, though - what I read about autism when I was younger was very, very misguided and very, very pessimistic. All the scary stories have turned out to be untrue, misguided, just plain wrong. Autistic kids can't love? Bunkum. They feel, they love, they are very loving indeed. They can express emotions, they feel deeply. Almost more deeply. But they don't always express emotions in ways we recognise. Autistic kids can't learn - again, rubbish. They can learn with lightning speed when they are ready to learn a new skill. But yes, they can sometimes struggle with something for a lot longer than you would think. Then one day the penny drops, often because someone has presented the information in a different way that just clicks with them. Life with an autistic child can seem monotonous with no progress - until all progress happens in one day. Then another period with little progress - then another leap of milestones. It can be very exciting. And once you learn what triggers the milestone leaps - it's make sure you have a tight grip on the reins, and hold on for a wild ride. If your daughter has any area of special interest, indulge her. You're already learning how giving way on sensory issues can make everyone's life more pleasant. Even my easy child has some sensory issues, perhaps it's as much of the Pervasive Developmental Disorder (PDD) as she has, being a sibling of Pervasive Developmental Disorder (PDD) kids. But I have always had to 'vet' all knitwear coming into the house, for example. husband has been a campaigner for the use of good Aussie wool in clothing, nothing else is good enough for HIS kids. Only his kids refused to wear pure wool, because we just couldn't get any that wasn't too scratchy for them. Now, it IS possible to get wool that isn't scratchy. But to our kids - ALL of it was scratchy. We have had to compromise with acrylic. I grew up with only the cheaper Aussie wool products and I could sympathise with my kids - I hated the scratchy feel of wool, too, I learned to put up with it. We have more choice these days. husband has finally had to accept that some synthetics are a good second choice, because at least the kids will wear them! Shirt labels - cutting them out wasn't good enough. It can often leave a scratchy raw edge, so I learned to unpick the label entirely, then re-sew the seam. It can be fiddly trying to find the source of discomfort, but it's worth the trouble. You get more compliance form achild who is comfortable. Sometimes you have to go back to what you would do for a baby - if you want to show your new darling off to doting relatives, you make sure the baby is comfortable, fed and rested. That way she will be more likely to behave and not scream over-much. It's much the same with a Sensory Integration Disorder (SID) child - keep them comfortable, they will be more malleable. The same logic has me keeping food available to my kids, especially after school. I would expect the kids to come home tired, hungry and cranky. Feeding them as soon as they walked in the door went a long way to putting a smile back on the cranky face. I often, when they first started school, had to give them their evening meal right after school. If they were still up later on and hungry, they would get their afternoon tea snack then. But if they were too tired to eat their dinner later on, it didn't matter if I'd already fed it to them. Your daughter is your daughter. She has problems, you can see that. If you can help her at least with the Sensory Integration Disorder (SID), you will be making life a little more comfortable for her and also showing her that your aim is to help her. You hopefully should see some improvement in her behaviour. Whatever is wrong with her, is already wrong. Thinking about possibilities won't make them materialise out of nothing. I know you know this, but sometimes we forget; our fears drive us to stay away from some areas because we just don't want to go there. I've learned some wonderful things about Pervasive Developmental Disorder (PDD). This isn't just me making the best of a bad lot - I have been finding out for myself that whatever Pervasive Developmental Disorder (PDD) is, it's nothing like the "autism" that was described, when I was younger. It's almost diametrically opposed. Of all the things that could have been wrong with my kids, I now feel I've been handed the package I could best cope with. I've also realised how wrong a lot of the information has been. In the time I've had to deal with this diagnosis (a bit over 10 years) I've learned a lot. I've also had to re-learn a lot and I'm seeing my own independent learning now being independently recognised as researchers constantly rewrite the guidelines. Just in the last two years, our education department has done a complete reversal in how they manage students with autism. Not just a change in how they manage - but a complete 180 degree turnaround. Your daughter may be just Sensory Integration Disorder (SID) plus ADHD. However, she will still be similar enough to my difficult child 3, that something we do may help you - watch her. See how she functions, the sort of things that comfort her and seem to calm her. Then try and help her continue to have access to this. Because one thing these kids are already good at even when very young - they have learnt at least partly, how they learn best, how they feel best. A lot of this may change later, but for now, if it works - do it. Go with the flow. Relax, follow her lead at least as far as your parenting allows you. Some things we've allowed our boys - difficult child 3 loved to cuddle a towel, especially when he was tired or sad. So I made him some shorts out of an old towel. I covered a pillow in towelling. I keep an old towel in the car so when he was tired, he could cuddle the towel to go to sleep in the car. Something else - we got a new washing machine, it came in a giant cardboard box. We left tat cardboard box in our living room and let the boys sit inside it to do their homework. difficult child 1 cut a small window in the box and filled the box with cushions. The boys would sit inside the box and watch TV through the hole. They liked the feeling of being enclosed, but I could still use it to get their work done. A hammock - the boys liked to be completely wrapped up in the hammock, but because it was net, they could easily breathe. Again, feeling enclosed. The swinging also helped a lot. There are other good exercises for them - throwing them a ball (and having them throw it back) while swinging. Since then, the Nintendo Wii has come out and seems to mimic a lot of these really good exercises that were once so popular with occupational therapists before a certain entrepreneur began marketing this as his own method (long story, I ranted about it a year ago or more). The Wii Fit will do a lot of these exercises - again, talk to the Occupational Therapist (OT) about it or try one at a friend's house. You may find some very different things that work for your daughter. It's just a matter of being open to it and watching what she does with her environment. Anyway, I hope you are seeing some improvements already. Have courage, you are back on track to finding your daughter and getting her the help she needs. Keep us posted on how you get on with the Occupational Therapist (OT). I think that is a really good next step. Marg [/QUOTE]
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