Potty Training for Down Syndrome

[deleted account] ( 29 moms have responded )

I have a 7 year old that is in the first grade. She has Down Syndrome and has significant delays. She is still in pull-ups and does not want to be potty trained. I've talked with other parents that have suggested setting a timer throughout the day and taking her often. She goes a little bit throughout the day and it's usually in between potty breaks. She doesn't like to have her day interrupted with repeated trips either. We've put her in panties and tried taking her every hour. After 7 clothes changes, I put the pull-up back on.
I'm wondering if I should just give up and let her wear diapers for a while and try in a few months. She has a para at school who takes her about 5 times during the school day and she also reports little success.
We've been dealing with this for years...I'm so tired and don't know what to do.

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Angelica - posted on 11/16/2010

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My son is 7 and this summer, I dug my heals in and pulled up my sleaves and decided to get the kid potty trained. One of the things that my husband and I had been doing consistently was changing his pullup in the bathroom only. That way he was used to being in the bathroom. I talked to his pediatrician who is an expert in Ds and he told me that developmentally kids with Ds train between 7-8. Also, for about 3-4 months prior to July of this year he would wake up completely dry. Another thing that I was going to use as an advantage was that he will do anything for TV, computer and icecream. So, what I did was take his favorite things away, which was hard on all of us, give him a lot of his favorites fluids to drink and set a timer to go potty every 30 minutes. It was tough at first. We had some serious setbacks. I didn't want to go back to pull ups at all but my husband pointed out to me that Gabriel didn't care whether or not he was wet or poopy in underwear or a pull up. We just were super consistent with the TV, computer & icecream. If he pee'd or pooped in the potty then he got a choice of one of the three. He is in a general ed 1st grade class and he's been in underwear since the beginning of school. He does have a large bladder and pees forever which make his older brother's laugh a lot. If he has an accident it usually happens in the bathroom because he waits to long to go. We still have to remind him to go or hold the computer, TV or icecream as a carrot to get him to go but he does it. I can honestly say that we're done and I donated his pull ups to the SDC class at his school.
At our Buddy Walk this year, I was asked by many parents of children aged 5-7 about potty training. Everybody is struggling and experiencing the same things mentioned here. I wonder if the fact that we didn't really push him until this summer made a difference in getting him to comply and trained? Everybody that's struggling with this has really pushed it from age 4 and up. Our kids take so much longer for everything and we ask them everyday to do things that are really hard for them. Asking them to be potty trained when developmentally they aren't ready may not be healthy for anybody. As the mother of 4 including a typical boy who was 6 weeks shy of being 4 before he was trained, maybe waiting a bit isn't a bad idea. But definately do all the changing in the potty, flush the poop so that they understand that all the changing happens in the bathroom. I think that was very helpful. Don't dismay your child will and can do this.

Brenda - posted on 12/09/2010

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My daughter, Desi, has DS. She was trained by age 5. One bbsitter said it doesn't work to train them until they are verbal. Desi didn't talk until 3 1/2. We started training off and on then. 2 months before her 5th BD, we adopted a puppy. I had to potty train the pup, and decided to intensely train Desi at the same time. On the top of the hour, we were outside with puppy or on the potty with Desi. Every hour. And she was in panties. I discovered by putting her in panties, I had to be on top of getting her to a potty, like when we went out. If I put her in pull ups, I was lazy in taking her to the potty. The puppy caught on sooner than the girl, and I made tons of use of our carpet cleaning machine. Sometimes there was poop all over her carpet. UUUGGGH! Some days I thought I was losing my mind. Top of the hour, every hour, all day long, for 2-3 months. It was worth it. She is now seven, and only has a very occasional accident.

Desi is not severe. She is mainstreamed (first grade now) with a para who has another child besides her. If your child is behind, I would wait. And definatley wait until they are verbal, or can communicate with ease.

Margaret - posted on 11/23/2010

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Hi Sara - My boys are 5 and are "potty-trained" as long as they're reminded every 45 minutes at home and every hour at school. We worked up to these intervals using a gymboss(.com) starting at 10 minutes apart. It took a long time. And I'm guessing it'll take quite a bit longer to get them to independent pottying. But we are on our way. Check my blog post on how we did it. Perhaps it'll help with your daughter. Follow this link: http://walkonthehappyside.wordpress.com/...

and good luck.
xo maggie

Dawn - posted on 11/16/2010

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I have a 10 year old son with ds and he has been fully trained since he was 5 years 1 month I started when he was 2 just putting him on the potty consistently and letting him see others using the potty so he would know what I wanted at 4 he was in unders full time at home but at school they wanted him pull-ups I finally decided that the pull-ups were just setting us back I would send unders to school and ask them to just use the pull-ups for the bus well they were using them all the time so I stopped sending pull-ups to school and when they asked me for some I said no because I felt they were hindering his success well it wasn't long after that he was done. Now the only time we have accidents is when he waits to long or someone else is in the bathroom. 1 more thing he always woke up dry so I knew he was ready.

Terralyn - posted on 11/16/2010

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My son is 14 and honestly when he was 5 I had the same frustration. I really don't think they know when they need to go. One thing i did find is that when they took him to the teachers washroom it worked much better than using the main washrooms. he was potty trained when he was 8. I'd let up on them for another year and then try again. It will be less frustrating for you and your child at least that was what i found.

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Lydia - posted on 01/27/2012

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I feel you frustration Sara but you know what it will get better! Here's another strategy I try with my daughter Thea...i promise her that if she goes she will have one of her favorite snacks. Set up a schedule n try to take her at least every two hrs....u can also give her additional juice and water (during the day only) to stimulate her bladder.

Lydia

Jesssica - posted on 01/26/2012

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hi sara! so i just joined this sight and i'm hoping your story has changed over time? (since 2010) My son will be seven soon and also still is in a diaper/pull up. He pees regularly in the toilet,and can (almost 100%) stay dry- but for bm's its totally different. I also have been working on it for years with two steps forward then two steps back. When wearing underwear-which we did for quite a while he would soil his pants and not be bothered at all? we literally have tried every suggestion under the sun, with limited success? he is very verbal, and relatively high functioning, do i just need to be more patient or do you have a tip for me?

Jennifer - posted on 12/08/2010

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We just potty trained my son with Ds in August of this year- he was turning 5 in 2 months. We were frustrated just as many of the other parents out there...He didn't care if he sat in wet underwear, had no interest in using the toilet...would rather do it in his "favorite" corner, and so on. We were encouraged to hear a couple of other parents of boys with Ds about my son's age having success with "3-day potty training". We were skeptical but my husband and I decided to give it a try. There is a free website if you google 3daypottytraining that has a free ebook that can be downloaded and printed as well as online support/help with the process. It didn't work in 3 days but by day 5 I could read my son's cues that he needed to go and by the end of week 2 he was telling me he had to go the the bathroom consistently with almost no accidents. He has been successful in his transition to preschool and well as with his PCA. It was an intense first few days, going cold turkey by throwing out all diapers/pullups/padded underwear and staying with him during all waking hours with just thin underwear but it worked! We didn't take the plunge into nightime training as the site suggested because we thought it would be too much. Looking back on it now, he stayed dry throughout the night then, but has reverted to just peeing in his pullup at night and right when he wakes up. We will have to tackle that during a long break from school/holidays. We wish we would have done both at the same time but hindsight is 20/20:(
Good luck to all of you. I hope this helps.

Lisa - posted on 12/08/2010

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This sounds so familiar,,,our daughter Rachal turned 8 in march,,and only now is wearing big girl undies to school and going on the potty without any issues. There was a point where I thought it would never end. I just kept trying,,I guess you have to be very persistent ,,,and also have tuns of patience. She still wears pull-ups over night. But I'll gladly take that..all I can say is stick with whatever your doing,,,when she's ready,,one day It'll just click with her,,,good luck

Angelia - posted on 12/08/2010

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My son has Downs and is 6 years old. We started potty training him when he was 2. By the time he was 4 he would let us know when he had to pee but refused to poop on the toilet. We got him a potty training urinal and he started peeing by himself. By the time he was 5 1/2 he started pooping in the toilet and has been in undies since.



**Zek still does not talk but he is able to communicate that he has to go to the bathroom. I agree that I got lazy when he was in pullups and didn't remember to take him to the bathroom all the time. Putting him in undies made us remember because I didn't want to keep cleaning up the messes.

Heather - posted on 12/07/2010

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Don't give up!I am a mom of a 6year old boy with Downs Syndrome.He knows how to pee on the potty.But we're having trouble getting him to poop on the potty. My point is,if you think negatively you will get negative results.Stay positive!It will happen as long as you and your support work together,she will be potty trained.

Sue - posted on 12/04/2010

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Sara, She can do it~~ my daughter was trained at 2 yrs old. I started at 9 mos, which the dr told me it would be a long time. We showed him different. I explained to her that her brain tells her she has to go and need to run 100mph to get there. Yes, we had a FEW accidents. We used the 3 layer underwear in the very beginning and one day, put on the printed undies and she was successful. She did wear pull ups at night, however, I awakened her at 2am without any lights turned on and she went back to bed. I verbally told her to push, whether is was for urine or BM. Your daughter will understand and she will do great. The timer is probably annoying to her. We wore those plastic pants over the 3 layer panties and yes, they don't like that wet feeling. I am sorry it hasn't worked so far, it will. Please be patient. God love her and you also :) My daughter will be a teenager in Feb.

Lynn - posted on 12/01/2010

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Have you investigated whether it is a low tone muscle issue or a behavioral issue? My own daughter was finally trained at 5 yrs old (she is 8 now),but she still doesn't like to be reminded or told to use the potty. By age 4/5 we were battling will rather than any physical issues. Try a reward system like m&ms, sometime bribery is the perfect solution.

Sarah - posted on 11/25/2010

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Also remember it is the schools job to be teaching your child what they need to know and right now that is toilet training. Send in a huge bundle of clothes and pants and go for it....the support assistant should be trained to support your child with toileting needs and if not then demand it! I do believe our kids have the right to be continent and to get the help they need to achieve it. Don't feel bad about other people cleaning up as in the long run you are pushing for the best outcome for your child. Be strong! xx

Sarah - posted on 11/25/2010

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Hi! My Amber is 5 with D.S. I got her on a potty from when she was 3 in front of t.v. after dinner and this way she was clean mostly from that age. After several frustrating attempts at further training (17 changes of clothes one day!)..I cleared the diary for 2 weeks and stayed in the house to get it cracked. I actually followed the Gina Ford book "potty training in a week" although we worked thro a bit slower. First day don't even bother with pants on. Loads of praise, sticker, sweets etc if they get to the potty but don't show any reaction if not. Expect loads of accidents! Have cleaning kit pre-prepared! Day 2 and on wear pants no nappies, no pull ups only for night time, don't bother with other clothes like trousers! Gradually over the next days you as you get more success you can move potty further away and closer to the bathroom and gradually cut down on the bribery (maybe reward after a certain number of stickers). As confidence grows put on loose trousers like jogging bottoms and try a very short trip in the car and gradually build up your normal routines again. I would say that it is as much about the parent being in the right head space to deal wih the mess as you begin training and having the time and energy to do it. Wait until it is a good time for you and clear the diary, get help in, get your partner to take holiday to look after other kids etc Once you go for it NEVER put pull ups back on in daytime...it took a while for Amber to "twig" to the feeling of being wet and respond but we got there. I do really believe that pull ups send the wrong message to the kids as they do know basically that it is o.k. to pee in them!! Please persevere (give it two weeks and then if you get nowhere seek medical advice....most likely tho you will have sucess if you can just keep going). I had a very, very stressful two weeks with Amber but it was worth it as life is so much easier now she is trained. I trained Amber before she started school but I would say if you are concerned about missing school to do the training then get them on board. Make it clear that pants will be worn at all times and under no circumstances will pull ups be reverted to and yes there will be mess!! Probably easier to get it started yourself in the home environment tho' Best of Luck. xxx

Cathy - posted on 11/25/2010

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I have a son who is 28, and he was potty trained just before his 8th birthday. I tried every summer after age 5. Summer is easier because the cloths are easier. I felt like he was going to were pull ups forever! Hang in there, it will happen when they are ready. So, take the pressure off you both and wait and try again.. I also keep pull ups on him after he was potty trained for sleeping at night. I used them until there were no accidents at night. Good Luck, I feel your pain!

Holly - posted on 11/25/2010

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I appreciate all the suggestions! I have a almost 5 year old daughter with DS and my goal is to have her potty trained before she starts kindergarten. I have also heard the "Booty Camp" dvd series is really good. Very strict but good.

Edith - posted on 11/22/2010

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It is tough on moms and dads to deal with this. I have see too few of the parents say pray for help in dealing with this problem and peace of mind for you. Joey was 7 when we finily had potty training down. I picked a time he would be home to push it. but everyone even school had to help start and make sure he did not go backward

Vicki - posted on 11/22/2010

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Our daughter was potty trained by the time that she went to first grade, but still had plenty of accidents. We still put her in good nights at night because we still have accidents at night (she is now 12). Over the past year we started to have more "accidents" and have just found out that she has Graves disease....hyper thyroid problems. Since the medicine the accidents have stopped again. Good luck with potty training, it is trying but if they are ready they will let you know.

Wendy - posted on 11/19/2010

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My son has ASD ( Autism Spectrum Disorder) and he's 4 yrs old right now. He knows how to use the toilet but just resists it to the point of becoming violent. I've tried similar things as you and even things like cleaning him with only cold water. To me some of the suggestions seem more like torture then learning lessons. Have you tried a reward system? Like stickers or favorite snack foods? Or even having her go when you go. Sometimes Ben my son will want to at least pee when he sees me or my husband go.

Jennifer - posted on 11/19/2010

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i have a son eli 11 yrs old,,he was potty trained at 4 yrs old by the time he was 5 he was out of diapers,, i was lucky because he never liked or wanted to be wet

Cynthia - posted on 11/19/2010

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I don't want to discourage you, but I have a 15 yr old that is attending high school and still is not all the way trained. I have better luck with #2 now, but between the school and at home there are still a lot of accidents. She has ruined furniture when I have tried putting regular panties on her by peeing on it, also on the floor. There are little tips u pick up by putting a waterproof liner under whereever she is sitting when she is wearing the panties. And taking her to the bathroom on a regular schedule. I do this so she can know the sensation of peeing and the wetness. Also to save money on the Depends. My daughter also wore the pull-ups until she got too big.
As far as #2 she is actually catching herself in time most of the time, but still not always. We have a calendar by the toilet and she gets a sticker when she is successful.
Again I hope your child is not as severe. Amanda (my child) is also severely restricted in her speech and is on meds for drooling. She is taking trainable mentally handicapped classes and OJT (wipes tables, pushes garbage can and picks up trash). She is doing good with this.
Good luck to you and hang in there. We try to do the best for our children and believe me I know how hard it is, but I made a commitment to her a long time ago to take care of her as long as I could. Her daddy passed away when she was 12, so it's definitely been harder trying to make all the right decisions. She was the light of his life and she adored him. Let's all pray for each other. Take care.

Alison - posted on 11/17/2010

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i have a boy of 5 yrs old with downs syndrome. We have trid potty training, even spent £25 on a musical toilet/potty!! no luck, he will not sit still on the potty, when i ask him to sit on it he sreams the place down, and then he gets all worked up and i give in!!!! he is still in nappies, and doesnt care if hes wet or pooed his nappy, he dont tell anyone!!!! maybe wait till the summer.

[deleted account]

When you send your child to school in underwear, do you have to send several changes of clothes? I'm so afraid of sending her in panties because I hate that someone else has to worry about cleaning up after her and training her. I feel like it should be my responsibility. Was it a big deal for you?

Lydia - posted on 11/17/2010

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Hi I feel your frustration...my daughter is Autistic and 15yrs old and we still have some problems there....I set up a schedule along with pictures of the toilet on it, whenever it is time for the bathroom (we usually go every two hrs) I let her take the pic with her we also use music a lot ...which helps...its a long, hard struggle but keep heart your child will get there,,,,keep strong!!!!

Claudia - posted on 11/16/2010

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My daughter Kayla is now 15,I have a 30 & 33 yr old that are married. But my key thing with Kayla is she always wants mum to be proud of her. So I would put her on the potty and let her see me going. Same as when she started her monthy thing,I would always use myself. No dad around,so it was just mum and her. Take care and good luck. :)

Tracy - posted on 11/16/2010

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I would like to hear what others have done too! I have a 6 year old with CP, Mild Mental Retardation, Neurogentic Bladder, etc. She was potty trained for one summer when she was 4 but then experience chronic UTIs for about 8 months and now is back in pull-ups. She goes between potty breaks, has help at school going to the bathroom, but really is not there yet again. She has constipation issues so is on Miralax. She doesn't like having poo in the pants so will try to change herself if I don't get right to her, but could care less about the pee. So, any ideas would be great!

Mary - posted on 11/16/2010

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Hi. I have a 5.5yr old son with Downs, and we also really struggled. I started in ernest potty training in december last year, and he also couldn't care less about being wet, or having poo in his undies. Potty timing also didn't really work as he would have accidents in between. I would also keep reverting to pullups, because of the stress it was causing everyone in the household and at school (he doesn't have any extra help at school). In august of this year our GP suggested we try medication to help. It was a tablet he took once a day and which is specifically for kids with heurological issues which may affect bladder and bowel control. He was on it for three weeks, and is now able to go stretches of up to 2 and 1/2 hours at a time, with big wees when he goes. We still battle with bms, but that is because of the constitipation he struggles with, which makes it more difficult for him to know when he is going to make winds or have a poo. It may be worth seeing your GP/paed and asking for something like this - it reaaly was fantastic for David. In the last two weeks he has only have 3 wee accidents, and he doesn't mind my prompts to him to go wee, because it isn't every 10minutes. Hope this helps, and keep strong. I know how frustrating and exhausting it is.

Cindi - posted on 11/12/2010

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I am in the exact same place right now ... I don't think my daughter (5.5 years old) even realizes when she goes yet, so I know she is not ready. I am waiting until winter break (when we are home all day together) to try the timer every hour again. We did this for 3 weeks in July and she stayed dry if I took her every half hour but not longer. She is staying dry some nights now so I am hopeful!

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