Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 Hi Swim, I'm right there in this potty training ordeal with my son, Liam, also. I'm getting indirect message from school that they think we, parents, aren't doing our part: to take the pull-ups off and start the training. I started this potty business with Liam at 3 he is now 7. He will pee on the toilet when we take him but he DOES NOT stay dry. Yesterday we kept a log and put him underwear, in a period of 2 hours we changed him 6 times. He did not stay dry for more than 20 minutes. He does not care when he's wet, does not indicate to us when he's wet. BM's happen when he goes to bed. Liam is a bright little boy, he can read, he does well at school. He is very limited in his expressive communication but receptively understands what's going on. He does have Celiac disease which plays a part in all of this we do use Miralax. I am at my wits end as to what to do next. We've talked to 3 different doctors and either they aren't that concerned b/c he's 7 and has a disability or puzzled and recommend possibly a psychologist. I've looked for advice on this listserv and the message has been patience on our part. No one wants this more for Liam than his parents do. I can not fathom sending Liam to school without pull-ups on b/c for one I would need to send in his whole wardrobe (which most likely only last the morning) and two I don't want him to have more of a stigma with the kids, ie. smelling of urine, always having to leave to be changed b/c he's wet etc. Truthfully, I don't understand what he is " learning " if he's being changed when he's has underwear or pull-ups on other than the fact pull-ups contain it better. I am really beating myself up b/c I don't know if I'm looking at this in the wrong way, or I'm not doing the right thing to get him to recognize what he's supposed to be doing. I am going to pursue Liam seeing a urologists b/c I do think medically there maybe a urination issue. Sorry, I have no advice for you myself but wanted to let you know you're not alone in this. Marie mom to Liam, 7,DS, Celiac, PDD-NOS Owen, 4, (being evaluated for sensory processing disorder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 Hi Swim and Marie, Gerrie, and All, Welcome! So glad you found us and don't hesitate to ask away. You might also check the archives (maybe you already have) and know that you are not alone. Swim, you mentioned that maybe your son was having bad memories of toileting and pain. I second what Nash wrote, but it will take time to figure out *how* to rewrite his toileting into more pleasant memories. I also think that our kids are genius at picking up at *our* frustrations, anxiety, impatience, etc, and respond in ways that are counter productive. It's a balancing act, and it is so hard to mask what we might be feeling in the heat (and mess) of the moment. Marie, especially since you have some good data now about Liam's urination timing, a trip to the urologist does sound appropriate. What has your pediatrician said about this? Gerrie, did your son have the pull through surgery for Hirschprung's? What I find interesting here is that between the three of you are three boys with intestinal disorders: Crohn's, Celiac, and Hirschprung's. There is no way that any toileting experience for them can be easy, especially if they have had pain and/or mixed body signals about when they have to have a BM. Figuring out urination between all of these things has got to be puzzling, confusing, and frustrating, obviously for both the child and the adults in his life. Marie, I'm with you on the pull-ups. If the window of opportunity to be present in the classroom is just so many hours/day, and Liam is going pretty constantly, it makes sense to schedule things a little differently until you find out what might going on medically. Schools seem to have a blind eye to the toileting issues. They wish it would just go away. I have occasionally aske students in the special ed teacher training programs here if toileting issues, especially toilet training, are ever covered. Never. And, when it comes to writing IEP, and there are parents up to date on how these necessary goals and objectives should be written, things seldom get written, let alone followed, in a way that supports the needs of the student. Not to discourage anyone, but Joan Medlen has written an excellent essay about this topic here: http://joan.wordpress.com/2011/01/27/what-does-pp-have-to-do-with-learning/ She is particularly qualified to write about this as you can see. Hang in there. We're right with you. Beth 20 y/o Pete's Mum central Ohio (Columbus area) > > Hi Swim, > I'm right there in this potty training ordeal with my son, Liam, also. > I'm getting indirect message from school that they think we, parents, aren't doing our part: to take the pull-ups off and start the training. > > I started this potty business with Liam at 3 he is now 7. He will pee on the toilet when we take him but he DOES NOT stay dry. > Yesterday we kept a log and put him underwear, in a period of 2 hours we changed him 6 times. He did not stay dry for more than 20 minutes. He does not care when he's wet, does not indicate to us when he's wet. > BM's happen when he goes to bed. > > Liam is a bright little boy, he can read, he does well at school. He is very limited in his expressive communication but receptively understands what's going on. He does have Celiac disease which plays a part in all of this > we do use Miralax. I am at my wits end as to what to do next. We've talked to 3 different doctors and either they aren't that concerned b/c he's 7 and has a disability or puzzled and recommend possibly a psychologist. > > I've looked for advice on this listserv and the message has been patience on our part. No one wants this more for Liam than his parents do. I can not fathom sending Liam to school without pull-ups on b/c for one I would need to send in his whole wardrobe (which most likely only last the morning) and two I don't want him to have more of a stigma with the kids, ie. smelling of urine, always having to leave to be changed b/c he's wet etc. > Truthfully, I don't understand what he is " learning " if he's being changed when he's has underwear or pull-ups on other than the fact pull-ups contain it better. > > I am really beating myself up b/c I don't know if I'm looking at this in the wrong way, or I'm not doing the right thing to get him to recognize what he's supposed to be doing. > I am going to pursue Liam seeing a urologists b/c I do think medically there maybe a urination issue. > > Sorry, I have no advice for you myself but wanted to let you know you're not alone in this. > > Marie > mom to Liam, 7,DS, Celiac, PDD-NOS > Owen, 4, (being evaluated for sensory processing disorder) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Dear Marie, Please please please be kind to yourself, do what works for you and your family, and work on developing an immunity to all those little indirect messages from school. Not to mention indirect messages from strangers and family and many others who don't quite understand our kids. There are often great teachers and assistants, but lurking underneath is the economic agenda of the system to not provide assistance to individual children. So the orientation is always goals that remove the need for an assistant. I've found that laughing (nicely and conspiritorially and in a tone that says I'm with the person, not laughing at them) when unrealistic goals are presented helps sometimes and saying its a great goal and I'm all for it and it'll probably take years to get there - conveying how much I hope for the goal also and yet how truly unrealistic it is (and that they will not be able to get rid of the one on one assistant that easily!). As for the kids at school - how do they currently interact with your child? Darwyn wears underwear at school and gets changed when he is wet (which is much less often than I expected) Darwyn's class likes him and the wet pants and leaving to go to the toilet doesn't seem to be a big deal. Noone makes a fuss about it - probably because his assistant deals with it so well - she wanted to try underwear - she is a brave soul. He goes to school in a pullup and comes home in one too (accompanied with a bag of laundry sometimes). So, would your son be bothered? Darwyn is blissfully not all that concerned about how others see him. Sort of refreshing. Having the school begin the underwear/toileting has really worked for me. They're motivated and I don't have pee stains on the rugs and couches at home. , Mom to (age 11) and Darwyn ( age 7 DS ASD and a few heart surgeries) , Canada Sent on the TELUS Mobility network with BlackBerry Re: newbie/toileting Hi Swim, I'm right there in this potty training ordeal with my son, Liam, also. I'm getting indirect message from school that they think we, parents, aren't doing our part: to take the pull-ups off and start the training. I started this potty business with Liam at 3 he is now 7. He will pee on the toilet when we take him but he DOES NOT stay dry. Yesterday we kept a log and put him underwear, in a period of 2 hours we changed him 6 times. He did not stay dry for more than 20 minutes. He does not care when he's wet, does not indicate to us when he's wet. BM's happen when he goes to bed. Liam is a bright little boy, he can read, he does well at school. He is very limited in his expressive communication but receptively understands what's going on. He does have Celiac disease which plays a part in all of this we do use Miralax. I am at my wits end as to what to do next. We've talked to 3 different doctors and either they aren't that concerned b/c he's 7 and has a disability or puzzled and recommend possibly a psychologist. I've looked for advice on this listserv and the message has been patience on our part. No one wants this more for Liam than his parents do. I can not fathom sending Liam to school without pull-ups on b/c for one I would need to send in his whole wardrobe (which most likely only last the morning) and two I don't want him to have more of a stigma with the kids, ie. smelling of urine, always having to leave to be changed b/c he's wet etc. Truthfully, I don't understand what he is " learning " if he's being changed when he's has underwear or pull-ups on other than the fact pull-ups contain it better. I am really beating myself up b/c I don't know if I'm looking at this in the wrong way, or I'm not doing the right thing to get him to recognize what he's supposed to be doing. I am going to pursue Liam seeing a urologists b/c I do think medically there maybe a urination issue. Sorry, I have no advice for you myself but wanted to let you know you're not alone in this. Marie mom to Liam, 7,DS, Celiac, PDD-NOS Owen, 4, (being evaluated for sensory processing disorder) ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 , I am curious does your son stay dry for a good length of time? Liam's classmates are great with him and maybe it's " my " problem to send him to school in underwear as I don't think it matters one way or another to Liam. I'm just thinking of his Para and what she would have to deal with and Liam missing out on school b/c they would be constantly having to change him. On the other side of it, I want to send him to school in underwear so they can see what they would have to deal with. Ironically, as I was writing this note, I get a return phone call with the local DS doctor I've contacted and per him and Liam's GI doc both think this is a withholding issue and we need to " clean " Liam out so to speak before we can tackle the urine issue. As he can't hold much urine in if he's full of poop (sorry to be so graphic but I don't think I go a day without talking about poop to someone). This has been suggested before by Liam's GI doctor to up his dosage of Miralax,( this just seems to cause it's own set of new problems). I forsee some long days ahead in the coming weeks. Thanks Marie mom to Liam, DS, Celiac, PDD Owen,4 > > Dear Marie, > Please please please be kind to yourself, do what works for you and your family, and work on developing an immunity to all those little indirect messages from school. Not to mention indirect messages from strangers and family and many others who don't quite understand our kids. There are often great teachers and assistants, but lurking underneath is the economic agenda of the system to not provide assistance to individual children. So the orientation is always goals that remove the need for an assistant. I've found that laughing (nicely and conspiritorially and in a tone that says I'm with the person, not laughing at them) when unrealistic goals are presented helps sometimes and saying its a great goal and I'm all for it and it'll probably take years to get there - conveying how much I hope for the goal also and yet how truly unrealistic it is (and that they will not be able to get rid of the one on one assistant that easily!). > As for the kids at school - how do they currently interact with your child? Darwyn wears underwear at school and gets changed when he is wet (which is much less often than I expected) Darwyn's class likes him and the wet pants and leaving to go to the toilet doesn't seem to be a big deal. Noone makes a fuss about it - probably because his assistant deals with it so well - she wanted to try underwear - she is a brave soul. He goes to school in a pullup and comes home in one too (accompanied with a bag of laundry sometimes). So, would your son be bothered? Darwyn is blissfully not all that concerned about how others see him. Sort of refreshing. Having the school begin the underwear/toileting has really worked for me. They're motivated and I don't have pee stains on the rugs and couches at home. > , > Mom to (age 11) and Darwyn ( age 7 DS ASD and a few heart surgeries) > , Canada > > Sent on the TELUS Mobility network with BlackBerry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Hi. What's great here is that we moms can connect with others facing similar issues. My daughter is almost 12 and not potty-trained, and doctors are now saying she may never be able to bec/of nerve / spinal issues. She has a little bit of control with urine, but absolutely none with BM. We've tried everything, and I want this more than anybody, even her teachers and those who change her at school! She is in pull-ups full-time (large GoodNites) bec/ when she's in underpants, she has very soft poop in them every day from the Miralax. Even with that, she gets impacted and I've been told to do a big cleanout once a month for 4 days at a time. I haven't really done this consistantly bec/she'd miss 2 days of school for each big cleanout. It's the most frustrating thing with her, but I just count my blessings that this is one of my biggest problems She can sometimes stay dry overnight, and can sometimes go on the toilet, but it's hard for her to go " on demand " when she's on the toilet. I'm sure that you have all tried everything too! We've done up to two hours at a time on the toilet, drinking lots of liquid, and cheering whenever something came out, etc. Not often, bec/ that seemed ridiculous. We've tried trips to the bathroom every 20, 30, 60 minutes, whatever. Sometimes she could go and sometimes she'd wet in between visits. Even when she can hold her urine (not consistently), she has NEVER held a BM ever. We had serious trouble with the elem school a few years ago bec/ of her needing to be changed. The asst. principal called me in for a meeting and said that he could recommend that she be placed in a school for kids with severe/profound " retardation " bec/she's not potty-trained. My jaw dropped. She's been reading since she was 4! I basically told him that this problem is related to her disability and that they had to change her when she was in school, and he countered that they would call me to come in and change her every time. There was a little battle, and eventually they hired someone. Mommy power ________________________________ To: Sent: Mon, May 16, 2011 1:56:34 PM Subject: Re: Re: newbie/toileting Dear Marie, Please please please be kind to yourself, do what works for you and your family, and work on developing an immunity to all those little indirect messages from school. Not to mention indirect messages from strangers and family and many others who don't quite understand our kids. There are often great teachers and assistants, but lurking underneath is the economic agenda of the system to not provide assistance to individual children. So the orientation is always goals that remove the need for an assistant. I've found that laughing (nicely and conspiritorially and in a tone that says I'm with the person, not laughing at them) when unrealistic goals are presented helps sometimes and saying its a great goal and I'm all for it and it'll probably take years to get there - conveying how much I hope for the goal also and yet how truly unrealistic it is (and that they will not be able to get rid of the one on one assistant that easily!). As for the kids at school - how do they currently interact with your child? Darwyn wears underwear at school and gets changed when he is wet (which is much less often than I expected) Darwyn's class likes him and the wet pants and leaving to go to the toilet doesn't seem to be a big deal. Noone makes a fuss about it - probably because his assistant deals with it so well - she wanted to try underwear - she is a brave soul. He goes to school in a pullup and comes home in one too (accompanied with a bag of laundry sometimes). So, would your son be bothered? Darwyn is blissfully not all that concerned about how others see him. Sort of refreshing. Having the school begin the underwear/toileting has really worked for me. They're motivated and I don't have pee stains on the rugs and couches at home. , Mom to (age 11) and Darwyn ( age 7 DS ASD and a few heart surgeries) , Canada Sent on the TELUS Mobility network with BlackBerry Re: newbie/toileting Hi Swim, I'm right there in this potty training ordeal with my son, Liam, also. I'm getting indirect message from school that they think we, parents, aren't doing our part: to take the pull-ups off and start the training. I started this potty business with Liam at 3 he is now 7. He will pee on the toilet when we take him but he DOES NOT stay dry. Yesterday we kept a log and put him underwear, in a period of 2 hours we changed him 6 times. He did not stay dry for more than 20 minutes. He does not care when he's wet, does not indicate to us when he's wet. BM's happen when he goes to bed. Liam is a bright little boy, he can read, he does well at school. He is very limited in his expressive communication but receptively understands what's going on. He does have Celiac disease which plays a part in all of this we do use Miralax. I am at my wits end as to what to do next. We've talked to 3 different doctors and either they aren't that concerned b/c he's 7 and has a disability or puzzled and recommend possibly a psychologist. I've looked for advice on this listserv and the message has been patience on our part. No one wants this more for Liam than his parents do. I can not fathom sending Liam to school without pull-ups on b/c for one I would need to send in his whole wardrobe (which most likely only last the morning) and two I don't want him to have more of a stigma with the kids, ie. smelling of urine, always having to leave to be changed b/c he's wet etc. Truthfully, I don't understand what he is " learning " if he's being changed when he's has underwear or pull-ups on other than the fact pull-ups contain it better. I am really beating myself up b/c I don't know if I'm looking at this in the wrong way, or I'm not doing the right thing to get him to recognize what he's supposed to be doing. I am going to pursue Liam seeing a urologists b/c I do think medically there maybe a urination issue. Sorry, I have no advice for you myself but wanted to let you know you're not alone in this. Marie mom to Liam, 7,DS, Celiac, PDD-NOS Owen, 4, (being evaluated for sensory processing disorder) ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Hi Marie, Darwyn is at school from 9am -1:30pm. At first there were sometimes 3 or 4 changes of clothes coming home (I bought 4 cheap pairs of sweatpants and sent them to school with 5 pairs of underwear, socks and a shirt). It was extra laundry for a month or so, but now he often stays dry all day. His aide takes him to the toilet regularly (I let her decide how and when, but its probably almost every hour) and she is very matter of fact about it. I'm all for having others whom I trust take on the burden of toilet training Darwyn. Also, just like all kids, our kids often do better for others than for their parents! - rumour has it my neurotypical daughter hangs up her jacket at school and puts dishes in the sink at friends homes. So - why not go for it? If it doesn't work after a few weeks you can always go back to pullups. For me, I've had the satisfaction of Darwyn beginning toilet training without any effort on my part. And after 5 months, just last week I put him in underwear at home before going to school - heck he'd just leaked thru a pullup onto the carpet, so I figured he was pretty emptied out. And he is sooooo cute in little boy underwear!) As for the kids, Darwyn's sort of looked after by the kids in his class so they don't tease him. They like him and truly consider him a friend and they like to help him, which is pretty sweet. Best of luck, Sent on the TELUS Mobility network with BlackBerry Re: newbie/toileting , I am curious does your son stay dry for a good length of time? Liam's classmates are great with him and maybe it's " my " problem to send him to school in underwear as I don't think it matters one way or another to Liam. I'm just thinking of his Para and what she would have to deal with and Liam missing out on school b/c they would be constantly having to change him. On the other side of it, I want to send him to school in underwear so they can see what they would have to deal with. Ironically, as I was writing this note, I get a return phone call with the local DS doctor I've contacted and per him and Liam's GI doc both think this is a withholding issue and we need to " clean " Liam out so to speak before we can tackle the urine issue. As he can't hold much urine in if he's full of poop (sorry to be so graphic but I don't think I go a day without talking about poop to someone). This has been suggested before by Liam's GI doctor to up his dosage of Miralax,( this just seems to cause it's own set of new problems). I forsee some long days ahead in the coming weeks. Thanks Marie mom to Liam, DS, Celiac, PDD Owen,4 > > Dear Marie, > Please please please be kind to yourself, do what works for you and your family, and work on developing an immunity to all those little indirect messages from school. Not to mention indirect messages from strangers and family and many others who don't quite understand our kids. There are often great teachers and assistants, but lurking underneath is the economic agenda of the system to not provide assistance to individual children. So the orientation is always goals that remove the need for an assistant. I've found that laughing (nicely and conspiritorially and in a tone that says I'm with the person, not laughing at them) when unrealistic goals are presented helps sometimes and saying its a great goal and I'm all for it and it'll probably take years to get there - conveying how much I hope for the goal also and yet how truly unrealistic it is (and that they will not be able to get rid of the one on one assistant that easily!). > As for the kids at school - how do they currently interact with your child? Darwyn wears underwear at school and gets changed when he is wet (which is much less often than I expected) Darwyn's class likes him and the wet pants and leaving to go to the toilet doesn't seem to be a big deal. Noone makes a fuss about it - probably because his assistant deals with it so well - she wanted to try underwear - she is a brave soul. He goes to school in a pullup and comes home in one too (accompanied with a bag of laundry sometimes). So, would your son be bothered? Darwyn is blissfully not all that concerned about how others see him. Sort of refreshing. Having the school begin the underwear/toileting has really worked for me. They're motivated and I don't have pee stains on the rugs and couches at home. > , > Mom to (age 11) and Darwyn ( age 7 DS ASD and a few heart surgeries) > , Canada > > Sent on the TELUS Mobility network with BlackBerry > ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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