Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need toconsult a doctor about calming his behavior. It may not get better. Just wanted you to know thatI am going thru something a little bit similar, but not as bad. My daughter is 12 and is inGoodnites pull-ups full-time - no bowel control at all, and we have to change her all the time.She is into puberty, her body is changing, and I've had to start talking to her about periods becausethat could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old inpullups and still use a diaper bag, but there are far worse things out there. She is not combative,but hormonally whine-y and gloomy. (An exception: she is very very combative during manymedical procedures. We've had to cancel 3 tests in the last few months because she foughtso hard.) She is headed to middle school in the fall and, because she is not potty-trained, there isdiscussion about where she will end up, despite the fact that she can read (at maybe a 1st grade level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's someone else still doing "diaper duty" on a 12-yr-old. Have a good day today. - Theresa, Northern VA To: Sent: Monday, January 23, 2012 8:46 PM Subject: Puberty My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 My son turned 12 in Dec. and is incontinent, too. Still in diapers. Getting better at toilet at school since they take him every hour but that just doesn't work at home. He is not showing any signs of puberty, though; he is only 4 feet tall and 47 pounds, with no growth in genitals or appearance of pubic hair at all. He gets a little combative but not too awful during diaper changes, mostly during teeth brushing. I'd talk to a behavioral psychologist if you can about behavioral strategies. I wish I could advise you more; just commiserating a bit. Beth To: dkrumrei ; " " < >Sent: Tue, January 24, 2012 8:23:47 AMSubject: Re: Puberty Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to consult a doctor about calming his behavior. It may not get better. Just wanted you to know that I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. She is into puberty, her body is changing, and I've had to start talking to her about periods because that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in pullups and still use a diaper bag, but there are far worse things out there. She is not combative, but hormonally whine-y and gloomy. (An exception: she is very very combative during many medical procedures. We've had to cancel 3 tests in the last few months because she fought so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's someone else still doing "diaper duty" on a 12-yr-old. Have a good day today. - Theresa, Northern VA To: Sent: Monday, January 23, 2012 8:46 PMSubject: Puberty My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I don't know if any of you are aware of this book, but it is written by Terri Couwenhoven, a sex educator at the DS Clinic of WI and she also has an adult daughter w/DS. The name of the book is " Teaching Children with Down syndrome about their Bodies, Boundaries and Sexuality " . It's really a book geared toward us as parents, as well as, professionals. Here's a link (http://www.amazon.com/Teaching-Children-Syndrome-Boundaries-Sexuality/dp/189062\ 733X#_) It's also available at woodbine.com and s/b at your local library. I would think it would also be available from your local DS organization if they have a lending library. Theresa, not sure if you remember Terri from when you were here in WI, but she also just wrote another book specifically for young girls. It's called The Girls Guide to Growing Up. It was just released in December and was written on a 3rd grade reading level to help girls either read thru it alone or w/a parent. I haven't read it but have heard a lot of great things about the book. It might be something you and your daughter might be interested in reading. It's available on amazon (http://www.amazon.com/Girls-Guide-Growing-Up-Choices/dp/1606130269/ref=sr_1_3?s\ =books & ie=UTF8 & qid=1327416743 & sr=1-3). I would think your local library would also be able to get for you if they don't already have in stock. I'm sorry I couldn't offer any more insight or help. Hang in there, Angie Mom to Tyler, 14, DS/ASD/non verbal SE WI > > Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to > consult a doctor about calming his behavior. It may not get better. Just wanted you to know that > I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in > Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. > She is into puberty, her body is changing, and I've had to start talking to her about periods because > that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in > pullups and still use a diaper bag, but there are far worse things out there. She is not combative, > but hormonally whine-y and gloomy. (An exception: she is very very combative during many > medical procedures. We've had to cancel 3 tests in the last few months because she fought > so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is > discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade > > level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get > > worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's > > someone else still doing " diaper duty " on a 12-yr-old. Have a good day today. - Theresa, Northern VA > > > > ________________________________ > > To: > Sent: Monday, January 23, 2012 8:46 PM > Subject: Puberty > > >  > My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Piping in my 2 cents. Our son turns 12 in 2 weeks. If we take him to bathroom frequently enough he will pee and have a bowel movement. We trained him to urinate about a year ago, and to have BM's about 2 months ago. The only strategy that worked was sitting him on the toilet when we saw him straining in his pull-up. We clapped hands and generally told him he was a king when he pooped. He ate that up. He understands that he needs to wipe, but usually ends up with poop on his hands that he shakes off all over the wall. That is our current project. He can pull down his pants and pullup, put them in the trash/clothes basket. Sit and void/BM. Then pull the whole roll of toilet paper if we are not watching and unroll it in the toilet. He then flushes and SLAMS the lid down after we clean him up. We keep a stack of pullups on the back of the toilet and he just learned to take one and open it himself. He pulls them up on his own, about a 1/3 of the time backwards, but the world will not end. We still get messes in the pullups, but its progressing. I saw somewhere else that our kids usually aren't potty trained till about age 14 on average, and some never. Amazing the little things that we get excited about. Toothbrushing? I'd rather not talk about it. We get it done a few nights a week... Shane Averyfather of To: Sent: Tuesday, January 24, 2012 9:33 AM Subject: Re: Puberty My son turned 12 in Dec. and is incontinent, too. Still in diapers. Getting better at toilet at school since they take him every hour but that just doesn't work at home. He is not showing any signs of puberty, though; he is only 4 feet tall and 47 pounds, with no growth in genitals or appearance of pubic hair at all. He gets a little combative but not too awful during diaper changes, mostly during teeth brushing. I'd talk to a behavioral psychologist if you can about behavioral strategies. I wish I could advise you more; just commiserating a bit. Beth To: dkrumrei ; " " < >Sent: Tue, January 24, 2012 8:23:47 AMSubject: Re: Puberty Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to consult a doctor about calming his behavior. It may not get better. Just wanted you to know that I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. She is into puberty, her body is changing, and I've had to start talking to her about periods because that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in pullups and still use a diaper bag, but there are far worse things out there. She is not combative, but hormonally whine-y and gloomy. (An exception: she is very very combative during many medical procedures. We've had to cancel 3 tests in the last few months because she fought so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's someone else still doing "diaper duty" on a 12-yr-old. Have a good day today. - Theresa, Northern VA To: Sent: Monday, January 23, 2012 8:46 PMSubject: Puberty My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 It's awesome to have people understand what seem to us to be uniquestruggles! I imagine that each of us generally doesn't know another (orvery many) going thru these types of struggles. Thank you, Shane, foryour story of slow victory and encouragement. Thank you, Angie, for letting me know about Terri's second book - I hadn't heard about it yet, and am very excited. I will definitely order it from & Noble today or tomorrow. (I'm stuck at home with two sick kids - and her little brother Bobby, who is 6. Nothing serious!) I feel very humbledthat you remember me from my years in the Milwaukee area - that touchedme a lot that you recognized my name. We've been in this area for 8 1/2 yearsnow, moving here so that my husband could work at the Pentagon after hereturned from the war (as a mobilized Navy reservist). I didn't know that youwere on this listserv! Anyway, I knew Terri from taking to the DSClinic at Children's Hospital in Milwaukee, and LOVE her first book. I'veeven loaned it out to friends. My only concern was that it addressed everyphysical issue but didn't say much about moodiness, meltdowns, etc that I've heard about with adolescent girls with DS. I know of several girls withDS who have had their schooling severely impacted by hormonal hell, anddon't know what to expect as we get further into this. At least we parents have each other, and among all of us, someone has probablyhandled everything out there! Thank you, everybody, for being there whenwe need a virtual hug Have a great day! - Theresa DannerMom to 4, incl. (age 12) From: Shane Avery MD ; Down Syndrome Autism Support Group on Yahoo < > Sent: Tuesday, January 24, 2012 10:24 AM Subject: Re: Puberty Piping in my 2 cents. Our son turns 12 in 2 weeks. If we take him to bathroom frequently enough he will pee and have a bowel movement. We trained him to urinate about a year ago, and to have BM's about 2 months ago. The only strategy that worked was sitting him on the toilet when we saw him straining in his pull-up. We clapped hands and generally told him he was a king when he pooped. He ate that up. He understands that he needs to wipe, but usually ends up with poop on his hands that he shakes off all over the wall. That is our current project. He can pull down his pants and pullup, put them in the trash/clothes basket. Sit and void/BM. Then pull the whole roll of toilet paper if we are not watching and unroll it in the toilet. He then flushes and SLAMS the lid down after we clean him up. We keep a stack of pullups on the back of the toilet and he just learned to take one and open it himself. He pulls them up on his own, about a 1/3 of the time backwards, but the world will not end. We still get messes in the pullups, but its progressing. I saw somewhere else that our kids usually aren't potty trained till about age 14 on average, and some never. Amazing the little things that we get excited about. Toothbrushing? I'd rather not talk about it. We get it done a few nights a week... Shane Averyfather of To: Sent: Tuesday, January 24, 2012 9:33 AM Subject: Re: Puberty My son turned 12 in Dec. and is incontinent, too. Still in diapers. Getting better at toilet at school since they take him every hour but that just doesn't work at home. He is not showing any signs of puberty, though; he is only 4 feet tall and 47 pounds, with no growth in genitals or appearance of pubic hair at all. He gets a little combative but not too awful during diaper changes, mostly during teeth brushing. I'd talk to a behavioral psychologist if you can about behavioral strategies. I wish I could advise you more; just commiserating a bit. Beth To: dkrumrei ; " " < >Sent: Tue, January 24, 2012 8:23:47 AMSubject: Re: Puberty Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to consult a doctor about calming his behavior. It may not get better. Just wanted you to know that I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. She is into puberty, her body is changing, and I've had to start talking to her about periods because that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in pullups and still use a diaper bag, but there are far worse things out there. She is not combative, but hormonally whine-y and gloomy. (An exception: she is very very combative during many medical procedures. We've had to cancel 3 tests in the last few months because she fought so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's someone else still doing "diaper duty" on a 12-yr-old. Have a good day today. - Theresa, Northern VA To: Sent: Monday, January 23, 2012 8:46 PMSubject: Puberty My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I have a 13 year old son still in diapers who is urine and bowel incontinent and probably always will be due to medical issues. He gets very aggressive during diaper changes. It's very frustrating. The only thing I've found to do is to stop changing his diaper when he starts hitting, kicking, spitting, scratching, and otherwise being a pain. I tell him that I'm not going to continue changing his diaper until he cooperates. He understands completely. It can get very messy and can take a long time, but he usually stops fighting me long enough to get the diaper on him. He has to put his own pants back on. Sometimes he won't cooperate and then I just have to battle him until I get the diaper on him. I'm 46 years old and not getting any younger. I'm not looking forward to changing diapers for the rest of my life, but I may have to do just that. I also have a 13 month old daughter in diapers and a 3 year old going through toilet training. They don't fight nearly as much as their brother does. I've successfully toilet trained my 5 other children, so I have plenty of practice toilet training and changing diapers!Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Hi Everyone: I'm relatively new to posting to the group, although I've been reading for years. I'm Mom to a sweet but challenging non-verbal 24-year-old girl with DS + PDD-NOS, Milly. I've been dealing with behaviourial challenges of varying kinds since Milly hit puberty at 13/14, and a book that I love deals specifically with emotional/mental wellness of adults with DS (probably would cover the mood swings of teenage years too) - it is " Mental Wellness in Adults with Down Syndrome " by Dennis McGuire & Chicoine, ISBN #1-890627-65-8. I attended a workshop presented by Dennis, and loved it, he talks about " grooves " in people with DS, which I would translate as " those habits and behaviour that make me want to pull my hair out " . It's the only book I've seen that deals with " older " children. I'd recommend it highly, at least until we learn how to read people's minds This journey we travel with our kids is definitely a roller-coaster! Nice to be able to have company on the way. Sue Bhatt, London, Ontario, Can. > > It's awesome to have people understand what seem to us to be unique > struggles! I imagine that each of us generally doesn't know another (or > very many) going thru these types of struggles. Thank you, Shane, for > your story of slow victory and encouragement. > > > Thank you, Angie, for letting me know about Terri's second book - I hadn't > > heard about it yet, and am very excited. I will definitely order it from > > & Noble today or tomorrow. (I'm stuck at home with two sick kids - > > and her little brother Bobby, who is 6. Nothing serious!) I feel very humbled > that you remember me from my years in the Milwaukee area - that touched > me a lot that you recognized my name. We've been in this area for 8 1/2 years > now, moving here so that my husband could work at the Pentagon after he > returned from the war (as a mobilized Navy reservist). I didn't know that you > were on this listserv! Anyway, I knew Terri from taking to the DS > Clinic at Children's Hospital in Milwaukee, and LOVE her first book. I've > even loaned it out to friends. My only concern was that it addressed every > physical issue but didn't say much about moodiness, meltdowns, etc that > > I've heard about with adolescent girls with DS. I know of several girls with > DS who have had their schooling severely impacted by hormonal hell, and > don't know what to expect as we get further into this. > > > At least we parents have each other, and among all of us, someone has probably > handled everything out there! Thank you, everybody, for being there when > we need a virtual hug > > Have a great day! - Theresa Danner > Mom to 4, incl. (age 12) > > > > > ________________________________ > > To: Beth DeHoff ; Down Syndrome Autism Support Group on Yahoo < > > Sent: Tuesday, January 24, 2012 10:24 AM > Subject: Re: Puberty > > >  > Piping in my 2 cents. Our son turns 12 in 2 weeks. If we take him to bathroom frequently enough he will pee and have a bowel movement. We trained him to urinate about a year ago, and to have BM's about 2 months ago. The only strategy that worked was sitting him on the toilet when we saw him straining in his pull-up. We clapped hands and generally told him he was a king when he pooped. He ate that up. >  > He understands that he needs to wipe, but usually ends up with poop on his hands that he shakes off all over the wall. That is our current project. >  > He can pull down his pants and pullup, put them in the trash/clothes basket. Sit and void/BM. Then pull the whole roll of toilet paper if we are not watching and unroll it in the toilet. He then flushes and SLAMS the lid down after we clean him up. We keep a stack of pullups on the back of the toilet and he just learned to take one and open it himself. He pulls them up on his own, about a 1/3 of the time backwards, but the world will not end. >  > We still get messes in the pullups, but its progressing. I saw somewhere else that our kids usually aren't potty trained till about age 14 on average, and some never. >  > Amazing the little things that we get excited about. >  > Toothbrushing? I'd rather not talk about it. We get it done a few nights a week... >  > Shane Avery > father of > > > To: > Sent: Tuesday, January 24, 2012 9:33 AM > Subject: Re: Puberty > > >  > My son turned 12 in Dec. and is incontinent, too. Still in diapers. Getting better at toilet at school since they take him every hour but that just doesn't work at home. He is not showing any signs of puberty, though; he is only 4 feet tall and 47 pounds, with no growth in genitals or appearance of pubic hair at all. He gets a little combative but not too awful during diaper changes, mostly during teeth brushing. I'd talk to a behavioral psychologist if you can about behavioral strategies. I wish I could advise you more; just commiserating a bit. >  > Beth > > > > > To: dkrumrei ; " " < > > Sent: Tue, January 24, 2012 8:23:47 AM > Subject: Re: Puberty > >  > Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to > consult a doctor about calming his behavior. It may not get better. Just wanted you to know that > I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in > Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. > She is into puberty, her body is changing, and I've had to start talking to her about periods because > that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in > pullups and still use a diaper bag, but there are far worse things out there. She is not combative, > but hormonally whine-y and gloomy. (An exception: she is very very combative during many > medical procedures. We've had to cancel 3 tests in the last few months because she fought > so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is > discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade > > level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get > > worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's > > someone else still doing " diaper duty " on a 12-yr-old. Have a good day today. - Theresa, Northern VA > > > To: > Sent: Monday, January 23, 2012 8:46 PM > Subject: Puberty > > >  > My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 I have heard many parents say that book is good. Maybe I should get a copy! Thanks! Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Thanks for the information, Sue! Sounds like a great book that I'dlook forward to reading. Please post more often - Theresa To: Sent: Wednesday, January 25, 2012 12:11 PM Subject: Re: Puberty Hi Everyone: I'm relatively new to posting to the group, although I've been reading for years. I'm Mom to a sweet but challenging non-verbal 24-year-old girl with DS + PDD-NOS, Milly. I've been dealing with behaviourial challenges of varying kinds since Milly hit puberty at 13/14, and a book that I love deals specifically with emotional/mental wellness of adults with DS (probably would cover the mood swings of teenage years too) - it is "Mental Wellness in Adults with Down Syndrome" by Dennis McGuire & Chicoine, ISBN #1-890627-65-8. I attended a workshop presented by Dennis, and loved it, he talks about "grooves" in people with DS, which I would translate as "those habits and behaviour that make me want to pull my hair out". It's the only book I've seen that deals with "older" children. I'd recommend it highly, at least until we learn how to read people's minds This journey we travel with our kids is definitely a roller-coaster! Nice to be able to have company on the way. Sue Bhatt, London, Ontario, Can. > > It's awesome to have people understand what seem to us to be unique > struggles! I imagine that each of us generally doesn't know another (or > very many) going thru these types of struggles. Thank you, Shane, for > your story of slow victory and encouragement. > > > Thank you, Angie, for letting me know about Terri's second book - I hadn't > > heard about it yet, and am very excited. I will definitely order it from > > & Noble today or tomorrow. (I'm stuck at home with two sick kids - > > and her little brother Bobby, who is 6. Nothing serious!) I feel very humbled > that you remember me from my years in the Milwaukee area - that touched > me a lot that you recognized my name. We've been in this area for 8 1/2 years > now, moving here so that my husband could work at the Pentagon after he > returned from the war (as a mobilized Navy reservist). I didn't know that you > were on this listserv! Anyway, I knew Terri from taking to the DS > Clinic at Children's Hospital in Milwaukee, and LOVE her first book. I've > even loaned it out to friends. My only concern was that it addressed every > physical issue but didn't say much about moodiness, meltdowns, etc that > > I've heard about with adolescent girls with DS. I know of several girls with > DS who have had their schooling severely impacted by hormonal hell, and > don't know what to expect as we get further into this. > > > At least we parents have each other, and among all of us, someone has probably > handled everything out there! Thank you, everybody, for being there when > we need a virtual hug > > Have a great day! - Theresa Danner > Mom to 4, incl. (age 12) > > > > > ________________________________ > > To: Beth DeHoff ; Down Syndrome Autism Support Group on Yahoo < > > Sent: Tuesday, January 24, 2012 10:24 AM > Subject: Re: Puberty > > >  > Piping in my 2 cents. Our son turns 12 in 2 weeks. If we take him to bathroom frequently enough he will pee and have a bowel movement. We trained him to urinate about a year ago, and to have BM's about 2 months ago. The only strategy that worked was sitting him on the toilet when we saw him straining in his pull-up. We clapped hands and generally told him he was a king when he pooped. He ate that up. >  > He understands that he needs to wipe, but usually ends up with poop on his hands that he shakes off all over the wall. That is our current project. >  > He can pull down his pants and pullup, put them in the trash/clothes basket. Sit and void/BM. Then pull the whole roll of toilet paper if we are not watching and unroll it in the toilet. He then flushes and SLAMS the lid down after we clean him up. We keep a stack of pullups on the back of the toilet and he just learned to take one and open it himself. He pulls them up on his own, about a 1/3 of the time backwards, but the world will not end. >  > We still get messes in the pullups, but its progressing. I saw somewhere else that our kids usually aren't potty trained till about age 14 on average, and some never. >  > Amazing the little things that we get excited about. >  > Toothbrushing? I'd rather not talk about it. We get it done a few nights a week... >  > Shane Avery > father of > > > To: > Sent: Tuesday, January 24, 2012 9:33 AM > Subject: Re: Puberty > > >  > My son turned 12 in Dec. and is incontinent, too. Still in diapers. Getting better at toilet at school since they take him every hour but that just doesn't work at home. He is not showing any signs of puberty, though; he is only 4 feet tall and 47 pounds, with no growth in genitals or appearance of pubic hair at all. He gets a little combative but not too awful during diaper changes, mostly during teeth brushing. I'd talk to a behavioral psychologist if you can about behavioral strategies. I wish I could advise you more; just commiserating a bit. >  > Beth > > > > > To: dkrumrei ; " " < > > Sent: Tue, January 24, 2012 8:23:47 AM > Subject: Re: Puberty > >  > Wow, I am so sorry that you are going thru all of this. It probably is puberty, and you may need to > consult a doctor about calming his behavior. It may not get better. Just wanted you to know that > I am going thru something a little bit similar, but not as bad. My daughter is 12 and is in > Goodnites pull-ups full-time - no bowel control at all, and we have to change her all the time. > She is into puberty, her body is changing, and I've had to start talking to her about periods because > that could start soon. I too turn 50 soon (in April) and can't believe that I have a 12-year-old in > pullups and still use a diaper bag, but there are far worse things out there. She is not combative, > but hormonally whine-y and gloomy. (An exception: she is very very combative during many > medical procedures. We've had to cancel 3 tests in the last few months because she fought > so hard.) She is headed to middle school in the fall and, because she is not potty-trained, there is > discussion about where she will end up, despite the fact that she can read (at maybe a 1st grade > > level) and therefore learn. Schools don't like to wipe butts on big kids, and the ick factor will get > > worse when she has a period. Sorry I can't help you more, but wanted to let you know that there's > > someone else still doing "diaper duty" on a 12-yr-old. Have a good day today. - Theresa, Northern VA > > > To: > Sent: Monday, January 23, 2012 8:46 PM > Subject: Puberty > > >  > My son will be 12 in Feb. He is incontinent bowel and urine, so I still change his diaper. He started getting pubic hair at 11, and had increased interest with his privates, plus increase size. He is getting more aggressive. I used to be able to talk him down when changing his pants. Now he kicks and pinches, every time and I have to change him or dress him. It is almost unbearable. I have bruises and scratches all over my hands and arms. I have always frowned on medications, and have always been able to talk Nick down. Is it increased hormones? Anyone else have any similar issues. I am almost 50 and want to keep my son at home. One minute he makes kissy noises and laughs with me, but I try and dress him or change his pants and it is war. > Quote Link to comment Share on other sites More sharing options...
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