Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I know what you mean in your post. Been there, done that, and still go through it at times. It is hard, so hard, to understand and deal with at times. Sometimes I wish some of Patty's obsessions were something more concrete. But oh well. She finally saw a pediatric Psychiatrist who deals with children who have tourettes, disabilities and OCD. There are some relaxation techniques we all learned. Then there are substitute behaviors she has tried desperately to learn. Finally she is on medication, Risperdal and Orthotrycyclene as a hormonal replacement. When she has PMS her obsessions and perseverance's are HORRIBLE. Sometimes she even asks me for help. I wish you the best in this. What has also worked for us is letting Patty know where the " line " is. And most of all, making sure she is comfortable within her self and who she is is what keeps her mentally strong. It gets better sometimes. Oh, and the best way to finally deal with all of this is once or twice a month draw a nice warm bath with some calming scent, maybe even pour in some bath salts, bubble bath or whatever. Then let your husband watch the kids for 15 to 20 minutes and YOU take a bath. Oh, and I almost forgot, sometimes you might need to wear headphones to drown out your family calling you from the other side of the door! Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I know what you mean in your post. Been there, done that, and still go through it at times. It is hard, so hard, to understand and deal with at times. Sometimes I wish some of Patty's obsessions were something more concrete. But oh well. She finally saw a pediatric Psychiatrist who deals with children who have tourettes, disabilities and OCD. There are some relaxation techniques we all learned. Then there are substitute behaviors she has tried desperately to learn. Finally she is on medication, Risperdal and Orthotrycyclene as a hormonal replacement. When she has PMS her obsessions and perseverance's are HORRIBLE. Sometimes she even asks me for help. I wish you the best in this. What has also worked for us is letting Patty know where the " line " is. And most of all, making sure she is comfortable within her self and who she is is what keeps her mentally strong. It gets better sometimes. Oh, and the best way to finally deal with all of this is once or twice a month draw a nice warm bath with some calming scent, maybe even pour in some bath salts, bubble bath or whatever. Then let your husband watch the kids for 15 to 20 minutes and YOU take a bath. Oh, and I almost forgot, sometimes you might need to wear headphones to drown out your family calling you from the other side of the door! Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I know what you mean in your post. Been there, done that, and still go through it at times. It is hard, so hard, to understand and deal with at times. Sometimes I wish some of Patty's obsessions were something more concrete. But oh well. She finally saw a pediatric Psychiatrist who deals with children who have tourettes, disabilities and OCD. There are some relaxation techniques we all learned. Then there are substitute behaviors she has tried desperately to learn. Finally she is on medication, Risperdal and Orthotrycyclene as a hormonal replacement. When she has PMS her obsessions and perseverance's are HORRIBLE. Sometimes she even asks me for help. I wish you the best in this. What has also worked for us is letting Patty know where the " line " is. And most of all, making sure she is comfortable within her self and who she is is what keeps her mentally strong. It gets better sometimes. Oh, and the best way to finally deal with all of this is once or twice a month draw a nice warm bath with some calming scent, maybe even pour in some bath salts, bubble bath or whatever. Then let your husband watch the kids for 15 to 20 minutes and YOU take a bath. Oh, and I almost forgot, sometimes you might need to wear headphones to drown out your family calling you from the other side of the door! Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Michele, I am not sure but I believe Aubrey is 6 or 7 now? My son is 7 now and this started 2 years ago and progressed intensely over those 2 years. Exactly what you are describing plus, checking behavior. Does Aubrie constantly ask what comes next? What date or number is it? Are we going to the parade in May (which could be 6 mths from now), does she have events planned way in advance? My son obsesses over every movie, he knows on what date it will be in theaters and plans to go. He pays extreme close to detail, is superb with driving directions, and is extremely smart, like, scary smart. it's almost like he has a photographic memory. However, he has great attention and is an excellent student. Basically, after the conference last summer, I learned that had this " checking behavior " . I told our neurologist and his jaw dropped to the floor. He asked how I knew he had this. I told him I didn't know what was doing had a name, and I didn't know it was of concern until the conference. I did know it drove us all crazy to the point of exhausting everyone, including . I told the dr to have a 1 minute conversation with . In that minute he must have interrupted at least 10 times to ask me what came after this (meaning the dr. appt). He was diagnosed with OCD. Basically, when his level of anxiety gets high, which can happen quickly, the OCD becomes worse. It is an involuntary tick as our dr, calls it, and cannot control it. He said the anxiety has consumed , and he can't break out of the pattern. No matter how many times you tell him that there are no monsters in his room, or what we will do after dinner, he will keep asking. started on Wellbutrin last September for this (in addition to a behavior program that was already in place where we thought we were reducing his anxiety). is an extremely high functioning CHARGER and knows just what is wrong with himself. He knows he takes the medicine to control the OCD and knows he needs it. In addition, he is on Depakoe which was used for his abdominal migraines but also acts as a mood stabilizer. He goes through periods of terrible mood swings which end in outbursts. I am not a fan of medicating children, but we couldn't live with him the way he was anymore and he couldn't live with himself anymore the way he was. The meds work and is 90% of the time a pleasant 7 year old to be around now. Right now as I type, he is playing nicely with his sisters. Before the meds he couldn't function after school, he was tied to my hip. For anyone else that is experiencing these things with there kids, don't ignore it, we have addressed it and life is much better now for everyone. Debbie Matasker mom to w/CHARGE 7, 9, andra 4 obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Michele, I am not sure but I believe Aubrey is 6 or 7 now? My son is 7 now and this started 2 years ago and progressed intensely over those 2 years. Exactly what you are describing plus, checking behavior. Does Aubrie constantly ask what comes next? What date or number is it? Are we going to the parade in May (which could be 6 mths from now), does she have events planned way in advance? My son obsesses over every movie, he knows on what date it will be in theaters and plans to go. He pays extreme close to detail, is superb with driving directions, and is extremely smart, like, scary smart. it's almost like he has a photographic memory. However, he has great attention and is an excellent student. Basically, after the conference last summer, I learned that had this " checking behavior " . I told our neurologist and his jaw dropped to the floor. He asked how I knew he had this. I told him I didn't know what was doing had a name, and I didn't know it was of concern until the conference. I did know it drove us all crazy to the point of exhausting everyone, including . I told the dr to have a 1 minute conversation with . In that minute he must have interrupted at least 10 times to ask me what came after this (meaning the dr. appt). He was diagnosed with OCD. Basically, when his level of anxiety gets high, which can happen quickly, the OCD becomes worse. It is an involuntary tick as our dr, calls it, and cannot control it. He said the anxiety has consumed , and he can't break out of the pattern. No matter how many times you tell him that there are no monsters in his room, or what we will do after dinner, he will keep asking. started on Wellbutrin last September for this (in addition to a behavior program that was already in place where we thought we were reducing his anxiety). is an extremely high functioning CHARGER and knows just what is wrong with himself. He knows he takes the medicine to control the OCD and knows he needs it. In addition, he is on Depakoe which was used for his abdominal migraines but also acts as a mood stabilizer. He goes through periods of terrible mood swings which end in outbursts. I am not a fan of medicating children, but we couldn't live with him the way he was anymore and he couldn't live with himself anymore the way he was. The meds work and is 90% of the time a pleasant 7 year old to be around now. Right now as I type, he is playing nicely with his sisters. Before the meds he couldn't function after school, he was tied to my hip. For anyone else that is experiencing these things with there kids, don't ignore it, we have addressed it and life is much better now for everyone. Debbie Matasker mom to w/CHARGE 7, 9, andra 4 obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Michele, I am not sure but I believe Aubrey is 6 or 7 now? My son is 7 now and this started 2 years ago and progressed intensely over those 2 years. Exactly what you are describing plus, checking behavior. Does Aubrie constantly ask what comes next? What date or number is it? Are we going to the parade in May (which could be 6 mths from now), does she have events planned way in advance? My son obsesses over every movie, he knows on what date it will be in theaters and plans to go. He pays extreme close to detail, is superb with driving directions, and is extremely smart, like, scary smart. it's almost like he has a photographic memory. However, he has great attention and is an excellent student. Basically, after the conference last summer, I learned that had this " checking behavior " . I told our neurologist and his jaw dropped to the floor. He asked how I knew he had this. I told him I didn't know what was doing had a name, and I didn't know it was of concern until the conference. I did know it drove us all crazy to the point of exhausting everyone, including . I told the dr to have a 1 minute conversation with . In that minute he must have interrupted at least 10 times to ask me what came after this (meaning the dr. appt). He was diagnosed with OCD. Basically, when his level of anxiety gets high, which can happen quickly, the OCD becomes worse. It is an involuntary tick as our dr, calls it, and cannot control it. He said the anxiety has consumed , and he can't break out of the pattern. No matter how many times you tell him that there are no monsters in his room, or what we will do after dinner, he will keep asking. started on Wellbutrin last September for this (in addition to a behavior program that was already in place where we thought we were reducing his anxiety). is an extremely high functioning CHARGER and knows just what is wrong with himself. He knows he takes the medicine to control the OCD and knows he needs it. In addition, he is on Depakoe which was used for his abdominal migraines but also acts as a mood stabilizer. He goes through periods of terrible mood swings which end in outbursts. I am not a fan of medicating children, but we couldn't live with him the way he was anymore and he couldn't live with himself anymore the way he was. The meds work and is 90% of the time a pleasant 7 year old to be around now. Right now as I type, he is playing nicely with his sisters. Before the meds he couldn't function after school, he was tied to my hip. For anyone else that is experiencing these things with there kids, don't ignore it, we have addressed it and life is much better now for everyone. Debbie Matasker mom to w/CHARGE 7, 9, andra 4 obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Michele, Wish I had answers, but I don't. I have a student at school that has had some obsessive behaviors all year. I can't figure those out either. My special ed training was for academics. In the last couple of years I see more and more behavioral issues. I need to find some classes on behaviors I guess. The public school sp. ed. classes have changed in the the last couple of years. I need to change with them. Hope you find some answers. Just wondering, could Aubrie be redirecting surgery worries to the obsessive behaviors? Maybe reacting to the last one and anticipating the next. Just a guess. SARAH UP DATE: She had a job interview today. She starts tomorrow doing housekeeping at our local Hampton Inn. She will work 30 hours a week and get a raise after 30 days. She should be able to keep the job part time once her college classes start in August. It's an ideal job to have in college. It is work, but not really taxing brain work. She is happy to have a real job. She hopes to maybe get another part time job for the summer to help her save for college. Blessing and Hugs, Lynn obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Michele, Wish I had answers, but I don't. I have a student at school that has had some obsessive behaviors all year. I can't figure those out either. My special ed training was for academics. In the last couple of years I see more and more behavioral issues. I need to find some classes on behaviors I guess. The public school sp. ed. classes have changed in the the last couple of years. I need to change with them. Hope you find some answers. Just wondering, could Aubrie be redirecting surgery worries to the obsessive behaviors? Maybe reacting to the last one and anticipating the next. Just a guess. SARAH UP DATE: She had a job interview today. She starts tomorrow doing housekeeping at our local Hampton Inn. She will work 30 hours a week and get a raise after 30 days. She should be able to keep the job part time once her college classes start in August. It's an ideal job to have in college. It is work, but not really taxing brain work. She is happy to have a real job. She hopes to maybe get another part time job for the summer to help her save for college. Blessing and Hugs, Lynn obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Michele, Wish I had answers, but I don't. I have a student at school that has had some obsessive behaviors all year. I can't figure those out either. My special ed training was for academics. In the last couple of years I see more and more behavioral issues. I need to find some classes on behaviors I guess. The public school sp. ed. classes have changed in the the last couple of years. I need to change with them. Hope you find some answers. Just wondering, could Aubrie be redirecting surgery worries to the obsessive behaviors? Maybe reacting to the last one and anticipating the next. Just a guess. SARAH UP DATE: She had a job interview today. She starts tomorrow doing housekeeping at our local Hampton Inn. She will work 30 hours a week and get a raise after 30 days. She should be able to keep the job part time once her college classes start in August. It's an ideal job to have in college. It is work, but not really taxing brain work. She is happy to have a real job. She hopes to maybe get another part time job for the summer to help her save for college. Blessing and Hugs, Lynn obsessiveness Aubrie is getting out-of-hand with what I think would be classified as obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a topic, she can't get off of it. It's usually related to a person or a movie. It's becoming extreme enough that it interferes with our life. For example, we were at a cookout this weekend at her friend's house -- 3 families with little girls. At some point, she started thinking about Chitty Chitty Bang Bang. Once she started, she could not think of anything. Could not be redirected. Decided she needed to see the video now -- whined and fussed to go the video store right now -- go home and watch it now. Cried and cried til Dad (who was on a quick run home to do something with ) stopped by the video store to confirm that they don't have it -- but one of the friend's had it -- so then she whined to leave and go get their copy to take home and watch now. If we made her leave the table where we were talking, she went by the deck gate and rocked and hummed waiting til we could go. Periodically she stopped and came back to whine about leaving right now to get the movie. Our evening was basically over as far as enjoying ourselves. The whining was about wanting to see it and needing to know the bad guy's name. It's definitely beyond " normal " . The host family has a son with severe disabilities and they recognized the insane behavior. The other family recognized that the obsessiveness has become more severe than in the past. We hadn't done anything together in several months. Another example -- needing to put *all* of the seats up (or down) in the auditorium before we can leave. So... what kind of dr do I see? How do I best handle it when it happens? Help! Michele W Aubrie's mom 6 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Fabulous news about the job!! Thanks for the ideas about the obsessiveness. I suppose it could be related to increased worries, but I need to figure something out. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Fabulous news about the job!! Thanks for the ideas about the obsessiveness. I suppose it could be related to increased worries, but I need to figure something out. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Bonnie- Had chuckle at the bath image in my mind. I am getting good at handling my part of things -- I have several little escapes that work well for my sanity. DJ's good at taking over before I loose my mind. Now I just have to figure out how to help Aubrie so this doesn't happen to begin with. She's not aware of it yet so she can't be expected to stop herself. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Bonnie- Had chuckle at the bath image in my mind. I am getting good at handling my part of things -- I have several little escapes that work well for my sanity. DJ's good at taking over before I loose my mind. Now I just have to figure out how to help Aubrie so this doesn't happen to begin with. She's not aware of it yet so she can't be expected to stop herself. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Debbie- Thanks for all the details about . Aubrie is 6 1/2. I don't like the thought of medicating her either -- unless we are certain of the dx. So is it a neurologist that I need to see? Aubrie does some of the checking behavior you're talking about. She must change the calendar on the 1st of every month. She's stuck to her routines. She is in to dates and directions etc too. Maybe not as much as yet tho. When we drive somewhere, she must know where we're going and recognize the route or she's full of questions about why we're going a different way. When we go out of town, she has to know what town we're in, what town will be next, every step of the way. I'll have to pay closer attention so that I can give good concrete examples to a doctor. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Debbie- Thanks for all the details about . Aubrie is 6 1/2. I don't like the thought of medicating her either -- unless we are certain of the dx. So is it a neurologist that I need to see? Aubrie does some of the checking behavior you're talking about. She must change the calendar on the 1st of every month. She's stuck to her routines. She is in to dates and directions etc too. Maybe not as much as yet tho. When we drive somewhere, she must know where we're going and recognize the route or she's full of questions about why we're going a different way. When we go out of town, she has to know what town we're in, what town will be next, every step of the way. I'll have to pay closer attention so that I can give good concrete examples to a doctor. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Debbie- Thanks for all the details about . Aubrie is 6 1/2. I don't like the thought of medicating her either -- unless we are certain of the dx. So is it a neurologist that I need to see? Aubrie does some of the checking behavior you're talking about. She must change the calendar on the 1st of every month. She's stuck to her routines. She is in to dates and directions etc too. Maybe not as much as yet tho. When we drive somewhere, she must know where we're going and recognize the route or she's full of questions about why we're going a different way. When we go out of town, she has to know what town we're in, what town will be next, every step of the way. I'll have to pay closer attention so that I can give good concrete examples to a doctor. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Martha- Thanks so much for the suggestions. I don't want to start interventions before they are needed, but I also would love to get a leg up on this thing and keep it under control and avoid any really difficult times. For the folks in the St Louis area -- any drs to recommend or avoid? Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Martha- Thanks so much for the suggestions. I don't want to start interventions before they are needed, but I also would love to get a leg up on this thing and keep it under control and avoid any really difficult times. For the folks in the St Louis area -- any drs to recommend or avoid? Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 so glad sarah got a job!!! Congrats!! maria obsessiveness > > > Aubrie is getting out-of-hand with what I think would be classified as > obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a > topic, she can't get off of it. It's usually related to a person or a > movie. It's becoming extreme enough that it interferes with our life. For > example, we were at a cookout this weekend at her friend's house -- 3 > families with little girls. At some point, she started thinking about > Chitty Chitty Bang Bang. Once she started, she could not think of anything. > Could not be redirected. Decided she needed to see the video now -- whined > and fussed to go the video store right now -- go home and watch it now. > Cried and cried til Dad (who was on a quick run home to do something with > ) stopped by the video store to confirm that they don't have it -- but > one of the friend's had it -- so then she whined to leave and go get their > copy to take home and watch now. If we made her leave the table where we > were talking, she went by the deck gate and rocked and hummed waiting til we > could go. Periodically she stopped and came back to whine about leaving > right now to get the movie. Our evening was basically over as far as > enjoying ourselves. The whining was about wanting to see it and needing to > know the bad guy's name. It's definitely beyond " normal " . The host family > has a son with severe disabilities and they recognized the insane behavior. > The other family recognized that the obsessiveness has become more severe > than in the past. We hadn't done anything together in several months. > Another example -- needing to put *all* of the seats up (or down) in the > auditorium before we can leave. > > So... what kind of dr do I see? How do I best handle it when it happens? > Help! > > Michele W > Aubrie's mom 6 yrs > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Thanks, Her first day went well. Keep her bad ear in you prayers, it is bleeding slighly. She can't get into the one and only ENT that takes care of her until June 24th. She is to use her drops again. She says it doesn't hurt any more so that is a plus. Even at and independent 19 1/2 I still worry. Mom's are allowed. Lynn obsessiveness > > > Aubrie is getting out-of-hand with what I think would be classified as > obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a > topic, she can't get off of it. It's usually related to a person or a > movie. It's becoming extreme enough that it interferes with our life. For > example, we were at a cookout this weekend at her friend's house -- 3 > families with little girls. At some point, she started thinking about > Chitty Chitty Bang Bang. Once she started, she could not think of anything. > Could not be redirected. Decided she needed to see the video now -- whined > and fussed to go the video store right now -- go home and watch it now. > Cried and cried til Dad (who was on a quick run home to do something with > ) stopped by the video store to confirm that they don't have it -- but > one of the friend's had it -- so then she whined to leave and go get their > copy to take home and watch now. If we made her leave the table where we > were talking, she went by the deck gate and rocked and hummed waiting til we > could go. Periodically she stopped and came back to whine about leaving > right now to get the movie. Our evening was basically over as far as > enjoying ourselves. The whining was about wanting to see it and needing to > know the bad guy's name. It's definitely beyond " normal " . The host family > has a son with severe disabilities and they recognized the insane behavior. > The other family recognized that the obsessiveness has become more severe > than in the past. We hadn't done anything together in several months. > Another example -- needing to put *all* of the seats up (or down) in the > auditorium before we can leave. > > So... what kind of dr do I see? How do I best handle it when it happens? > Help! > > Michele W > Aubrie's mom 6 yrs > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 will do, hope the ear is better soon, glad it doesn't hurt. hope the job continues to go well. I'm off to see timmy tap dancing today--I'm so proud of him for trying it--hope it goes well. obsessiveness > > > > > > Aubrie is getting out-of-hand with what I think would be classified as > > obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a > > topic, she can't get off of it. It's usually related to a person or a > > movie. It's becoming extreme enough that it interferes with our life. > For > > example, we were at a cookout this weekend at her friend's house -- 3 > > families with little girls. At some point, she started thinking about > > Chitty Chitty Bang Bang. Once she started, she could not think of > anything. > > Could not be redirected. Decided she needed to see the video now -- > whined > > and fussed to go the video store right now -- go home and watch it now. > > Cried and cried til Dad (who was on a quick run home to do something > with > > ) stopped by the video store to confirm that they don't have it -- > but > > one of the friend's had it -- so then she whined to leave and go get > their > > copy to take home and watch now. If we made her leave the table where > we > > were talking, she went by the deck gate and rocked and hummed waiting > til we > > could go. Periodically she stopped and came back to whine about leaving > > right now to get the movie. Our evening was basically over as far as > > enjoying ourselves. The whining was about wanting to see it and needing > to > > know the bad guy's name. It's definitely beyond " normal " . The host > family > > has a son with severe disabilities and they recognized the insane > behavior. > > The other family recognized that the obsessiveness has become more > severe > > than in the past. We hadn't done anything together in several months. > > Another example -- needing to put *all* of the seats up (or down) in the > > auditorium before we can leave. > > > > So... what kind of dr do I see? How do I best handle it when it > happens? > > Help! > > > > Michele W > > Aubrie's mom 6 yrs > > > > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Tap dancing sounds like great fun. took one class and hated it. Haven't talked to yet today to see how Day 2 of her job went. She is glad to be making her own money. I have two more student days and one teacher day left. I am ready for a vacation. I love my sp. ed. kids dearly but they drain me because they need so much and I try to give them everything they need. I need the summer to recharge. By mid Aug. I am anxious to start again. When are your boys done? Lynn obsessiveness > > > > > > Aubrie is getting out-of-hand with what I think would be classified as > > obsessiveness. Perhaps is perseveration. Anyway-- once she gets on a > > topic, she can't get off of it. It's usually related to a person or a > > movie. It's becoming extreme enough that it interferes with our life. > For > > example, we were at a cookout this weekend at her friend's house -- 3 > > families with little girls. At some point, she started thinking about > > Chitty Chitty Bang Bang. Once she started, she could not think of > anything. > > Could not be redirected. Decided she needed to see the video now -- > whined > > and fussed to go the video store right now -- go home and watch it now. > > Cried and cried til Dad (who was on a quick run home to do something > with > > ) stopped by the video store to confirm that they don't have it -- > but > > one of the friend's had it -- so then she whined to leave and go get > their > > copy to take home and watch now. If we made her leave the table where > we > > were talking, she went by the deck gate and rocked and hummed waiting > til we > > could go. Periodically she stopped and came back to whine about leaving > > right now to get the movie. Our evening was basically over as far as > > enjoying ourselves. The whining was about wanting to see it and needing > to > > know the bad guy's name. It's definitely beyond " normal " . The host > family > > has a son with severe disabilities and they recognized the insane > behavior. > > The other family recognized that the obsessiveness has become more > severe > > than in the past. We hadn't done anything together in several months. > > Another example -- needing to put *all* of the seats up (or down) in the > > auditorium before we can leave. > > > > So... what kind of dr do I see? How do I best handle it when it > happens? > > Help! > > > > Michele W > > Aubrie's mom 6 yrs > > > > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 he did a super job!!! as did Matasker!!! they were so darn cute!!! he had an aide behind him helping him stay steady and he knew all the steps! now he's been in bed--or supposede to be for an hour and a half and " can't go to sleep " I finally told him if he doesn't g-ma and I and the boys are not going to his school bbq tomorrow. which is probably what he's thinking about and can't sleep--these obsessions are driving me insane!! I saw keegan's teacher yesterday and she said she has 21 kids 7 of which are in the principals office almost daily--or at least the counselors----tshe said you'll see me dancing down the hall the last day of school!!! and I don't blame her, I've helped in that class--I'd probably be out of a job by now.... liam's last day was tuesday, keegan's last full day is the 9th, then the 10, 11, 14, and 15 are half days--drives me nuts--they have so many 1/2 days here. so he's officially out the 15th. tim's last day is the 18th. but he will go july 6-30 for summer school. I'm ready for a break---one more pto thing and then I'm done until fall--I hope!! have a great week-end!! maria obsessiveness > > > > > > > > > Aubrie is getting out-of-hand with what I think would be classified > as > > > obsessiveness. Perhaps is perseveration. Anyway-- once she gets on > a > > > topic, she can't get off of it. It's usually related to a person or > a > > > movie. It's becoming extreme enough that it interferes with our > life. > > For > > > example, we were at a cookout this weekend at her friend's house -- > 3 > > > families with little girls. At some point, she started thinking > about > > > Chitty Chitty Bang Bang. Once she started, she could not think of > > anything. > > > Could not be redirected. Decided she needed to see the video now -- > > whined > > > and fussed to go the video store right now -- go home and watch it > now. > > > Cried and cried til Dad (who was on a quick run home to do something > > with > > > ) stopped by the video store to confirm that they don't have > it -- > > but > > > one of the friend's had it -- so then she whined to leave and go get > > their > > > copy to take home and watch now. If we made her leave the table > where > > we > > > were talking, she went by the deck gate and rocked and hummed > waiting > > til we > > > could go. Periodically she stopped and came back to whine about > leaving > > > right now to get the movie. Our evening was basically over as far > as > > > enjoying ourselves. The whining was about wanting to see it and > needing > > to > > > know the bad guy's name. It's definitely beyond " normal " . The host > > family > > > has a son with severe disabilities and they recognized the insane > > behavior. > > > The other family recognized that the obsessiveness has become more > > severe > > > than in the past. We hadn't done anything together in several > months. > > > Another example -- needing to put *all* of the seats up (or down) in > the > > > auditorium before we can leave. > > > > > > So... what kind of dr do I see? How do I best handle it when it > > happens? > > > Help! > > > > > > Michele W > > > Aubrie's mom 6 yrs > > > > > > > > > > > > Membership of this email support groups does not constitute > membership > > in the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 7th International > > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. In Canada, you > may > > contact CHARGE Syndrome Canada at 1- (families), visit > > www.chargesyndrome.ca, or email info@.... Thank you! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Martha- I didn't realize that you guys were in MO. I'd appreciate all of that info whenever you can get to it. We're a little crazy here this week too so I won't be moving on anything quickly... Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Martha- I didn't realize that you guys were in MO. I'd appreciate all of that info whenever you can get to it. We're a little crazy here this week too so I won't be moving on anything quickly... Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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