Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

When it comes to potty training my child with Down syndrome, I’m flushed

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When it comes to potty training my child with Down syndrome, I’m flushed.

I need help.

I’m almost breaking out in hives over potty training.

My daughters Polly and Evie both have Down syndrome, and neither are potty trained.

Polly’s close. She goes #2 every time in the potty, but I don’t think she can feel the sensation to pee. She goes into 1st grade in a few weeks.

SHE NEEDS TO BE POTTY TRAINED.

AND I NEED TO BE TRAINED IN CONSISTENCY. UGH.

If you are the advice-type of parent, or the resourceful parent, or a natural encourager, then I need your help.

I suck at potty training my children with Down syndrome.

Talk me through this, guys.

 

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49 comments found

  1. Do you have an area of your house where she could be naked? I am sure she feels something and it just hasn’t connected with peeing yet. If she could be naked and feel the pee, then maybe it would help. I’ve never potty trained anyone with Down Syndrome before, but I have always found that nakedness is the only way to help little ones understand exactly what is happening.

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  2. When potty training Josiah (who has DS), we took him to the store and let him pick out any underwear he wanted. We told him that he could wear them anytime he wanted to but if he peed in them he would have to put his pull-ups back on. It really motivated him because he really wanted to wear his cool big boy underwear. Maybe you could let the girls pick out some pretty frilly big girl underwear and see if having/wearing that would motivate them- also it really helped Josiah to wear his big-boy underwear because then if he did pee in them he could feel it and he started to make the connection of feeling the wet and not liking it at all thus him wanting to go in the potty instead. You can do it!! I’ll be praying for you!

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  3. Okay, I’m in the trenches with you! Especially with the consistency thing on my part. So, my iPhone and I are now even better friends. I set the timer on the phone and take him every half hour. If he goes he gets and candy and a phone game, which is his favorite thing. I’m good in the mornings but things seem to fall apart after nap and around dinner time, so this is a big help. I also decided to keep him out of preschool this year and homeschool, with the first focus being potty training. There is just no way the teachers can take him as often as needs be. I am motivated by the fact that we are moving back to Central Asia in about 8 months and there is no such thing as pull ups there and Lord, help me, I do not want to do cloth diapers on a big kid.

    We can be potty training friends (is that weird?). I’ll pray for you and Evie and Polly !

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    1. Yes! Be my friend! For some reason I have so much guilt. I try to do every half hour with stickers, etc… but then I miss a time, or she doesn’t want to do it, and I feel horrible!

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      1. Hi! Is Laura and my daughter is 5 going on 6 this year. She only says a few words. She says pee pee some times. It’s hard i am an ecourager and i like to be encouraged . Anyone can contact me at any time. Need prayers my daughter’s name is Nevaeh.

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        1. My son is six and shoes signs of potty training. I need tips on how to get him to tell me he feels sensation to poop. He does know because he takes off somewhere private when he poops. He can verbalize this as He has many words in his vocabulary.

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    1. Thank you for your encouragement, Susan. Polly has such low muscle tone, I really don’t think she can feel when she needs to go. She goes number two on the potty every time, b/c she has that sensation.

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  7. Hi Gillian,
    You hit the nail on the head–consistency is key. We spent nearly a year putting Jade on the toilet on a consistent schedule, and she eventually learned how to hold it to avoid accidents. Waiting for her to proactively tell us took much longer.

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  8. Hello Gillian,
    My son is 6 soon to be 7 years old and is not completely potty trained and I understand your frustration I have felt that way for the last 3 years! I agree a key is consistency! This summer we focussed on potty training and I am proud to say my son understands that we pee in the potty but he has to be reminded to go. So every 2 hours I remind him he goes in and does what needs to be done! However pooping is a whole different story he feels that urge and knows when he has to go but will not tell me so we have a lot of work to do there! How i know he feels the urge is because last night he went in to go pee with a reminder and was pushing to go pee while going and I heard a little toot from him (LOL) and he grabbed his behind and I asked him if he had to go poo and he shook his head no so I sat him on the potty anyways or should say tried to get him to sit there and he refused so I let him off and he went running to the living room and sat on the couch within minutes I was smelling something and my husband had checked and sure enough he pooped his pants but I know if we keep at it he will get it! We have no pee accidents if I ask him to go every 2 hours or so and he has even been waking up dry in the mornings for the last 3 weeks I make sure he goes pee right before he goes to bed and as soon as he wakes up! We may have to go with reminders but I can deal with that but he will get it one day! Hang in there I know it’s frustrating but one day they will get it that’s how my son did sat him on the potty one day he finally peed while sitting there I had him look down to see what he was doing and I was so excited clapped my hands even shed a tear or two and gave him so many hugs and kept repeating good job hunter and after that he kept going to the potty every 10 minutes just to hear and get that praise from me! So I would have to say consistency and lots of praise when they do go. Good luck and hang in there!

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  9. my son didnt start going on his own without reminders until he was about 9-10. he still has the occasional accident(usually when hes playing and doesnt want to take the time to go to the bathroom) but he does still where pull-ups at night. i also find if i have him in a pull up during the day for some reason or another, he will just go in the pull up and not attempt to go to the bathroom. my advice is stick with the underwear! you will have a lot of messes to clean up for a little while, but they will get them more used to going on the potty.most of the children i know with downs r potty trained around 10- 12 yrs old

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  10. I just came across this post while searching for some potty training advice. I notice this was almost a year ago, so how’s it going with the potty?? My daughter will be 5 next week and I’ve been putting undies on her for a few weeks because she thinks pull ups are still diapers and doesnt even care to go in them. I also think her muscle tone is really effecting this process. As soon as she starts peeing, she’ll say ‘oh no pee pee!!’.while standing there peeing. Then an hour later do it again:(! OH man these comments about 10-12 yrs until finally done is giving me aniexty:/

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    1. Kelly, we are almost there. Polly is dry ninety percent of the time now but it has been a long process. Muscle control is definitely her main issue as she has been toilet trained with #2 for about a year and a half. Hang in there!

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      1. One thing that helps w/pee potty training is warm water. I know you know her pattern INTIMATELY, so bring her a little early and fill a squeeze-bottle with warmish-hot water (test at your wrist) and trickle it over (his)/her private part to stimulate her to go. It has worked for all 4 of my kids, the last of whom has DS, and at least your child will be going regularly until she can do it herself. Of course the more jumping/clapping/singing n whatever, the better to make her long for those “joyous” moments you share in that tiny room together. With the warm water technique YOU set her peeing schedule and the rest falls into place whenever it will be for each, unique child. Meanwhile, we all have the chance to become consistent, creative, diligent, hard-working human beings through this unique challenge placed before us. My son is almost 8 and knows everything. He just happens to hate tiny spaces and goes to all extents to avoid our bathroom. If your child wakes up dry, it’s not a muscle issue. The rest we uncover and, hopefully, become an amazing person in the process. The best to all of you.

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          1. Ok, I have about had it with potty training my 6 1/2 year old son with DS. I am about to pull my hair out and sometimes cry when he goes in his pull-up because I am so frustrated! This blog has helped a lot! The reason I am posting following this set of conversations is that he has been trained to go pee on the toilet for a year now – and it was the warm water that I had tried. I didn’t know anyone else had thought of it! LOL. I used the bottle I had from when I had my last baby in the hospital. You know, the one YOU use to clean yourself. Hey, every time I used it, I had to go even more, so why not try it with my son? It worked! Now if I can just get him to go #2 . . .

        2. Thanks a lot ut idea of using warm water really helped me a lot. Just 2 hours ago I read ur post now I am praying for u.

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        3. I am starting the warm water method, and it works great with my son. How do you stop them from becoming too dependent on having warm water in order to go? Not all public faucets have warm water available.

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    2. Kelly – I’m with you, came across this post for the same reason. My daughter will be 5 on 7/17. I pulled her from preschool this week to schedule train her this summer. Four days in and I am exasperated and making her miserable 🙁 We spend the whole day either on the potty (doing nothing) or cleaning up messes every 15min between potty trips! We have never been consistent schedulers in ANYthing – dinner, bed, whatever. So we have not set her up for potty success. I refuse to be freaked out by the 10-12yr age comments. I know several children with DS who are younger than Liza and mostly potty trained. Most of them have siblings to watch, and parents who have potty trained siblings! We don’t have either. I like the warm water idea – I’ve never heard that, but might try it. It kind of makes me laugh to picture Liza’s face when I’m trickling water on her… She already thinks I’m crazy! Otherwise, OT advice I’ve gotten is that until you are BM trained, don’t worry about pee. BM is easier to track and takes less ‘hits’ to be successful. I’m going to keep Liza in thick underwear, so she can feel the wet (pull-ups are a joke – thin diapers!), take her to the potty every 30min, but really focus on BM training after meals.
      Our kids are smart and capable – life is just slower and their priorities are different than ours. I feel like all the potty training insanity is MY deal – that I’m heaping on her. It isn’t improving her ‘performance’ and is ruining our time together. I’m pretty sure God would prefer me to celebrate my daughter’s gifts, rather than beat her into submission of ‘typical’. Besides, we don’t have the disposable income to support my wine habit at the end of THESE potty training days 🙂

      Good luck to you all!

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  11. My son is 7 and in 1st grade. He is not potty trained. He does bowl movement consistently on potty but pees his pants . School tries to help out but they too seemed to be having difficulty. Any advice?

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  12. My daughter is 5 and has Down syndrome – starting toilet training her yesterday – some messes I’ve had to clean up – I have to constantly watch her because she is doing little poos – lucky enough I see her in time and off to loo she goes – this is going to take forever – she stays dry all night which is great – just wish it was as good during the day – I’m ready for the hills ;(

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  13. My daughter is 7 and I have her almost potty trained but the #2 she just lets it come out on its own. I have went through so many pairs of underwear that I put pads in them cuz it is so expensive buying new ones. I tell her to go potty and she literally stomps her feet at me and wines I don’t know why she hates going potty everyone has to do it but she refuses to go to the potty unless I make her. But she will run to the potty when she has a pee accident but not when she poops I’m not sure what to do if u can help with any advice at all I would appreciate it.

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    1. I have a 9 year old who is in 4th grade and not potty trained. She absolutely refuses to go to the potty at home. Refuses to wear underwear. School is trying to help but she has accidents every single day.

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  14. I’m so happy I ran across this thread of comments. I don’t want to see anyone of you moms go insane over potty, but it’s nice to know I’m not alone. Sounds like we all need to keep plugging away and it will come in its own time.

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  15. Hi there, thank God i came across this website. My child is 4 this year and she really refised to b potty trained. I take her to pee every 30mins and she gets it but pooping is another story. I had to clean up all the mess every now n then. Thank you all for sharing your experiences, it helps me in many ways. Patience is the key. Children with DS need time to learn everything, only God can help us to be patient. By the way does your child start talking already?? Mine havent.

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  16. my son will be 11 and has ds and autism. Been trying to potty train for two years. Its a little frustrating. Never tells me I have to time him. What can help me. He’s dry from 9:30pm till 8:00am when he gets up. I need suggestions. Schools not very helpful about putting underwear on him. Suggestions please.

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  19. I am a special education teacher. I currently have a little guy with DS who will be 5 in January. My concern with his potty training is that he seems to hold his urine. He willingly goes to the bathroom and usually is quick to go….a little bit. He may have a stream of urine for about 4 seconds, then he just drip drops; however, if he coughs, sneezes, or laughs, a stream squirts out – even after he has had a good stream. Any suggestions to help him learn how to release all of his bladder?? So, we are trying to set a timer for every 10 minutes, but that is too long a lot of the time. We reward with a mini M&M when he goes. I’m puzzled. I am thinking the warm water may help him let it all out. 🙂 If you have experience with a little one who does this, please share.

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    1. Hi Melissa,
      I work with a wonderful little girl that is DS/Autism 6 yrs old and we just started potty training. Still in the trial and error (3 weeks). The mother wants the child potty trained ASAP. I feel DS children in a school setting may take a while long . How is it going with your little guy?

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      1. Hi Lynn. Things are getting better…somewhat. 😉 Our little guy is now 5. He is urinating more on the potty than he was. He gets so excited sometimes and exclaims, “I go potty!” and it stops. haha He has been dry maybe 2 times a week when his timer goes off to go potty again. It seems if he needs to have a BM, he can not urinate very much. I think he tries to hold the BM and therefore, he holds the urine. Do DS kiddos suffer from constipation? He tells me it hurts before and after he has a BM. But, after he had the BM yesterday then he urinated really good. We still celebrate when he goes peepee. He is getting tired of us telling him every 30 minutes to go again. He has made progress since we started in September. I hope your little one learns quickly.

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  20. My Daughter is 4yr 8mth old and has DS , This thread has inspired me to really start potty training her with a schedule, I have sat her down on the potty a few times after taking the diaper off and asked her “do you need to do a pee?”, with no pee coming, I have the potty in the bathroom and always while giving her a bath just as her feet touch the water she pees, I have the potty ready for this and when I see the trickle down the leg I lift her onto the potty and she continues to pee, then when she is finished peeing it all praise and Great girl and show her that Annie has peed in the potty, she then wants to empty it in the toilet and flush so she understands what has happened i think, but now I think I will try the pants only and put her on the potty every 30 mins and see where that takes us.

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    1. Hi Dede, I made a post in October and I thought I would touch base with you to see how Annie’s potty training is going?

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  21. I have a son who is a year one month old and has DS. I started potty training at eleven months, though he would cry through it for the first month. I devised a schedule where I put him to his potty once he is through with feeding,at first it was hard to keep him to sit still on his potty but Ii never gave up and once you put him on the potty now he poos and pees at same time and it has helped with him going to the crèche. Just keep trying they will come around.

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  22. My son has DS and Autism very low functioning non-verbal. He is 11 yrs old and still not potty trained. My wife and I are very frustrated and don’t know where to turn for help. He keeps going #2 and pulls it out and makes a mess all over the place. We have tried using the underwear method and he still just goes whenever he wants where ever he wants. Has anyone had this problem as long as we have? It feels as though he will never learn to be potty trained. HELP PLEASE!

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    1. Anthony. I have the same problem with my 9 year old girl with Down syndrome. She goes poop and pee whenever in her pull-up. She refuses to use the potty. Puts her hands in her pants after pooping and it’s disgusting and a mess. I’m beginning to think she will never be potty trained. School is trying to help but she has accidents every single day.

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  23. My “baby” is going on 8. We have had no success with potty training! Partially my fault as I have not set a schedule for her. Her BM s are the toughest as she shows no signs of going. I know she has bm issues, always soft, mushy stools & there seems to be no rhyme or reason for WHEN she goes! She will sit on the potty occasionally but most times nothing happens. I am going to try harder to work with her over the summer.

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    1. Any updates on what has worked or tricks?? My son is almost 9 and feeling like it isn’t worth it to keep trying if his poops are always going to be an issue!

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