Monday, February 7, 2011

Potty training and special needs: S.O.S.

Last weekend, Max and I sat down at the computer and ordered a purple-covered notebook and purple smiley-face stickers. I needed a new way to motivate him to potty train. They arrived on Saturday.

Max immediately wanted to put one in the book. "Nope, you have to go on the potty," I said. So he grabbed my hand and off we went to the potty. He sat there for two minutes, then jumped up. Nothing. I gave him the sticker for trying. He got one other one this weekend and one today, also for the effort.

Things are not going wondrously well with potty training. It's been a four year on-and-off ordeal. Nothing has worked—not treats, not peer pressure ("Max, Caleb likes to go potty!"), not the ecstatic potty dance I've done on the few times he has deigned to go.

At school, he goes more often. He tends to be a lot more independent at school, as I've mentioned here. So we know the plumbing's working.

Even when Max finally starts going on a regular basis, there are logistics to be worked out of how he'll pull down his own pants and generally care for himself. His dexterity poses challenges.

I am getting a little despondent. Another mom I know, whose six-year-old has cerebral palsy and is in a wheelchair, would also like advice from other parents out there. Her child needs to be lifted onto the potty (and her mom has a weak back), and then has to be helped as well. This mom is worried about depriving her daughter of her dignity and pride. She's wondering whether she is setting herself up for failure since her child is in a wheelchair.

So, that's two of us who would really, really welcome your potty-training experiences and tips (and books, if there are good ones) for kids with special needs at a variety of ability levels. And, of course, your success stories.

Please, be potty-mouthed.


  1. Oh potty training! I'll be reading as this is really hard for us too. Daughter is 5 & sort-of gets it but has no motivation, is non-verbal & non-ambulatory(for most part) so onus is on us. When we take her every 2 hours she would go but that gets exhausting & need full team to be on board. My brother suggested I get bells & put them all over so that she can shake them if she needs to go (but again, how do you teach motivation?). When I do put her on the potty, she knows to bang the toilet paper when she is all done so we've made progress. It is a real challenge so for now we just put her on a few times a day & cheer if she goes.

  2. We spent two weeks in November trying intensive potty training recommended by Jake's doc. We weren't successful this time, but we will try again.

    Jake's doc recommended the Toilet Training Manual on The process is for children with any type of disability, even very severe disabilities.

    The doc also recommended (a much more extensive guide).

    It's all about the motivation, isn't it? We've always felt that if/when Jake is motivated, he will only use the potty. So far, he doesn't see the benefits.

    Good luck to you!

  3. We're still struggling at 6 (almost 7) and my verbal daughter will tell me it's the one reason why she doesn't want to go to school. She does not like having the have someone else help her. She is more successful at home than at school. Spastic bladder...phew!

  4. My daughter is 4, and we started potty training about 2 years ago. She wasn't having any success pooping on the potty until recently when we tried a new approach (after trying stickers, peer pressure, rewards, letting her decide, etc.). Our new appoach: the Poop Fairy.

    The Poop Fairy is like Santa. She visits while our daughter is asleep and leaves small gifts if she's been successful on the potty. I think the key is finding a surprise that your child will really get excited about. For our daughter, it's My Little Pony.

    After having almost no success pooping on the potty for 2 years, she's finally getting it with this new approach. Not the cheapest way to potty train your child, but it works for us!

  5. ugh....our horror/success story is two years long and finally trained but still with issues. But I will direct you to my blog lol where I talked about it

  6. This purple potty may help!

    good luck!

  7. I'm an OT and I've had some success with families using the "goodbye diapers....pee and poop go in the potty" approach. It is a long (month or so) and messy plan but for some families it has been the only way. Going back and forth between the underware and diapers can be confusing for kids and the repeated,consistant experience of being wet/dirty helps to reinforce using the potty. This only works if Max has some way to let you know that he needs to go....word, picture, etc. Then pick a time when you're okay with sticking around the house for a week or so and dealing with a mess and say goodbye to the diapers during the day. Initially you might even want to have him going around the house without pants or underware or maybe just underware. Have a schedule for using the potty (every hour or so initially) and your new mantra is "pee/poop goes in the potty". You don't get upset (to personlly might be losing your mind) when he has an accident but you also don't say anything along the lines of "oh that's okay it was just an accident" It's simply "pee/poop goes in the potty" Reward away for success but don't punish for accidents. It doesn't happen overnight or even in a week but after a week or so of using this plan you start to learn his patterns and hopefully he'll have a few successes. Typically this plan takes about a month to 6 weeks to work and you get to a point where accidents are occasional. Usually just when you feel like totally giving up if you push through for another week or two it tends to click. You definately need a buddy to encourage YOU through the process because it is super frustrating. Also pooping may take longer depending on his pooping preferences and patterns.....some kids like the security of pooping in a diaper, some can't be bothered to sit for the amount of time it take so to make it happen. I've used YouTube videos on the Ipod or Ipad to get kids to sit long enough but then of course is the challenge of them saying they need to poop just to watch YouTube ;-) As for wiping and clothing management definately bring his OT on board no matter what approach you try. And get the school on board too because he can't stay home for the entire time it will take and they need to be using the same approach as you. Good Luck!

  8. I'm with you!

    My twins turned 4 in January and both have special needs.

    My boy has classic autism (he goes with a dry pull up for 1-3 hours at a time, so physically he's ready) --- if I HAPPEN to put him on the potty at the exact right time, he goes. I give praise and prizes, but he could care less. 99% goes in his pull up. I tried switching to underwear and all that did was make a huge mess. He's making it super clear he's not emotionally ready--- but I put him on the potty 6-7 times a day and hope for the best and keep reminding that pee and poop go in the potty.

    His twin sister is super excited to sit on the potty and most times when I sit her there she goes pee. But she goes pee every 15 minutes or so--- her pull up is NEVER dry--- so even though she'll go a little, 15 minutes later she'll go in her pull up anyway--- she doesn't care, but more importantly her bladder isn't mature enough yet and her hypotonia seems to be affecting the muscles that hold urine. The littlest pressure and she goes.

    I have shed many tears over this--- both twins have "invisible" disabilities so of course everyone assumes they should be trained by now--- I mean, hey, they're 4 years old!

  9. If I decide to go with just straight underwear again and deal with the mess---- HOW DO I PROTECT MY COUCHES? I can mop up the floor and wash clothing and bodies... but I worry about my couches....

  10. I'm having about as much luck with my 3yo and he isn't even disabled. Just as stubborn as a mule. I have no advice for you just well wishes and finger and toe crossing.

  11. @heatheramyprice - try putting on a pull up over the underwear.

    My son is 5 and has great pre-training skills. He always tells me when his diaper needs changing and touches front or back depending on what he's done. Our problem is his aversion to anything resembling a toilet seat. I went to a toileting class for kids with special needs and it was suggested that we paint or white paper to "draw" a toilet ring on one of his little kid chairs as a "baby step". Also, to teach him how to let us know when he was wet/dirty before he started using words, I used velcro on the outside of the bathroom door to attach a square cut out of a diaper package and mounted on photo paper - like PECS. When I noticed he had gone, I helped him pull off the picture and give it to me and said to him "pee pee" or "poo poo" "good job". My kid absolutely loves pictures so it worked really well for us and now we don't need the "picture" at all.

  12. Abby is 4 1/2. We've been putting her in underpants during the day and taking her every hour and change. (They do it at school, too.) She goes when I take her, but if I space out and wait too long, she has an accident. Twice (!) in the past week she's said she's poopy when she wasn't. When I ran her to the potty, she peed! Progress...

    She also can't really pull up or down her own pants totally, but she tries.

    Stickers etc don't work for her as she doesn't understand the cause and effect of a bribe. But maybe if keep on the path we're on for long enough, eventually she'll know when she's going to go before she does...

  13. What about the wiping? My 5 yr old is good with the toilet now - she gets there and does what is needed including the dressing parts. She can usually get the paper for pee, but for our bathroom she needs to get the paper FIRST. (the toilet is too far away) I don't know what to do about wiping poop before school as she is not affected enough to get an aide.

  14. There is a lot of information about potty training here

    You can also contact "experts" through this site.

  15. Some thoughts and ideas

    ~ For little boys (maybe girls too?) you might consider trying boxers. They are loose -- no confusion between them and a pull-up.

    ~ Max is old enough to help clean-up a mess. Get some rubber gloves, have him (and you) put them on and clean up the mess together. Using all of the phrases the OT said, staying calm, etc.

    ~ For cloth furniture, cover it with a plastic drop cloth then put a bedspread or something over it. If you are just worried about the seat part (e.g. no pee writers), then get a few really good waterproof mattress covers. They make them that are soft fabric.

    ~ A large box of backing soda is a must. If there is a pee mess on rug, blot up the main mess with papertowels, then cover with a good layer of baking soda. Vacume when dry.

    ~ Spring/summer can be a good time -- less cloths to deal with, shoes can be kept off in the house.

    ~ Get underpants that will go in the same color load as the pants. This happened by luck for me -- limits the number of different loads that need to be done.

    ~ Put a roll of TP on the back of the toilet or on the floor next to it, if the current location isn't kid friendly.

    A really big key to potty training is don't try to do it all at once. Pick a step and do it. Even if it is just the statement that pee & poop goes in the toilet. Try to always do it.

    Don't try to do it when there is something else going on (e.g. starting kindergarten). My son (autism, non-verbal) was almost 6 1/2 before he was potty trained. He was ready at the beginning of kindergarten, but the change in schools was such a big thing, we waited.

  16. We are trying the musical potty by fisher price. when she pees or poops into it, the weight activates something that makes music. it will only happen when you 'go' - MAGIC! i got it at target.

  17. This suggestion deals mostly with "clean up" issues, but some might find it helpful.

    For people who can afford it, I would recommend a professionally installed toilet-bidet combo to replace the existing toilet that the person with the poop issues uses (they cost a LOT, but they allow the user to "knock the crap off" if you know what I mean--making "clean up" just a matter of turning a knob or pushing a button and waiting for the water to do its work--good for people who can't wipe due to dexterity/inability to bend or whatever). This might also be a solution for your friend with the child in the wheelchair to preserve the child's dignity--at some point in time the little girl might learn to do a wheelchair transfer by herself as well which would further help her situation, or at least set up a transfer seat beside the toilet to save Mom's back. They even make really fancy tolet bidet combos that have a variety of speeds and cold to warm water and will even blow warm air on your butt (!!!!!!) after you blast it with water!

    There's a comedian named Ron White (who is one of my favorites, he's good ole boy who just cracks me up) who does a hilarious routine about the first time he encountered one of these things in a hotel room!

    For poor folks, you can buy an attachment to your regular toilet that performs the same function (the cheapest ones are cold water only and of course you have to "drip dry" but unless you keep your house super cold that shouldn't be too much of an issue). If you aren't good with a plumber's wrench and teflon tape, I'd say spend the money and have the plumber come in, just to be sure you don't have leaks. Of course, the person using the cheaper models has to know enough to turn the thing on and off, otherwise you end up with a little fountain going in the bathroom AND a mess of water on the floor.

    You could also use one of those diaper cleaning attachments, I suppose, but they're a bit messy and require holding the sprayer AND aiming--the bidet add-ons don't require that--they've got the "aiming" part already taken care of, and there's no need to hold anything--just turn a knob to get the blast of water. A version of the diaper sprayer (higher end/hot and cold water) is a fixture in the nursing home where I work, but I'm the one operating it for the patients--I wouldn't recommend this for a kid trying to clean themself.

    Some of the cheaper bidet attachments are "all in one" toilet seats--others install under the seat and use the seat bolts to hold them in place.

    If you want to see a wide variety of these things, from the cheaper attachments to the full bore plumber-installed "toilet bidets" just go to AMAZON and type in, yes, "toilet bidet" and a whole load of stuff will come up. I would suppose some of these high-end remodeling firms specialize in this kind of installation if you want to go for the fancy throne!

    If pooping or clean up was an ongoing issue, I'd think one of those high end things would be something worth saving up for. I suppose it wouldn't be a bad idea to go visit fancy hotels where they have them, too, to "test 'em out" like Ron White did!!

    After all, there's nothing better in life that a nice comfortable poop! It's one of the few things in life that's free, too!!

  18. Thank you so much for this post! My daughter with CP is 6 and we've been challenged by potty training for years! We're in another phase of trying now and the tips are so welcome! I've been wanting to ask you for a post like this!

  19. My son Lucas would poop in his pants till he was 12. He would come tell us he had pooped AFTER he has done it. We were tracking his toileting patterns for a while already and knew he would usually need to go after lunch. However if you asked if he wanted to go to the toilet, he would shake his head (Lucas is non-verbal), but shortly after poop in his pants.

    After I left my job in mid 2009, I started 'pestering' him. After lunch, I would ask him every 5 minutes if he needed to use the toilet. One day, he nodded yes and successfully did it on the toilet bowl! What a joyous day for us!

    I continued with it for a week and slowly increased the intervals between my asking him. By the end of the week, he would come up to me and point to his butt and head to the toilet on his own!

    So persistence really worked for me. Now it's to get him to clean up after himself. Properly.

  20. We tried evey thing we could to get our grandaughter to go potty.Most of the time it was a failure. Once she started school,she was more willing to go,so by the end of K,she was pretty much "aware" of the sensation,though she still had accidents.We are only talking about going #1 at this point #2 is not even in the equation. By 1st grade I transitioned her from pull ups to adult bladder control pads.During the summer we worked w/her & she was mostly accident free. She still wore the pads,because Of #2s.We tried to catch her before she had to go(sometimes we were lucky,sometimes not) Then all sudden(during the summer vacation before 2nd grade) she went #2 all by her self!She continued to do so & right before school started(2nd grade) she asked to stop wearing the pads.I am happy to report that she is all most 8 now & completely dry even at night. I guess my advice would be, be patient,encourage,be patient. Every child has their own time table. As long as they can feel the sensation,there is hope. It just takes time.

  21. Thanks to everyone for all the excellent advice. I have renewed hope. Another mom is emailing me a potty-training protocol that worked for her, I can post that.

  22. I've heard good things about the book that Deb recommended. We're not quite ready yet, my son (autism) is 3 1/2 and non-verbal. I know some typical kids not ready at that age. He's getting more aware of wet & dirty dipers, often taking off his diaper, then peeing on the floor or in his bed (hooray) or taking it off after he's done and leaving it for me to find (another hooray). But even with this awareness, he doesn't have the communication skills to tell me that he has to go.

    When we do start, I'm thinking of putting picture icons around the house (attached with velcro to the wall) so that if he has to go, he can hand me the icon. Will start by just sitting him on the potty and handing him the icon to pair the two.


    this company sells a wide variety of training and incontinence pants, they look like normal underwear and are washable too. Some have Velcro sides which would help Max to get them off by himself.

    You can buy potty training watches that beep at intervals during the day - I've even found a purple one.

    Love Claire

  24.™/ American made washable training pants.

    love claire

  25. Potty training...ugh! My daughter is thirteen and I really didn't imagine changing diapers for thirteen years. We have tried many things. Last year the school had her in the bathroom once an hour. A different teacher this year didn't want to do that and I don't blame her.

    Haley will walk up to me and point at her backside. That usually means she has already gone, but sometimes it means she needs to go.

    She will pull down her pants and sit on the toilet on her own, but she doesn't always go. If I ask her if she needs to go (like at a rest area) she says yes and we get her undressed and sat down and then she hops back up again.

    She does seem to be getting better. For the longest time I don't think she felt anything. At least she can tell now when she is wet. If she is really engaged in something she will leak through a pull-up though.

    She is too small for adult pants and to big for pull-ups.

    At this age the worst thing is "The Perils of Poopy Pubic Hair!"

  26. I'm an adult with CP, and I wanted to bring up a few things. Please forgive me if I'm only telling you things you already know. Problems with spasticity can extend to the bladder and bowel sphincters, and if your child is having problems with accidents, you may want to do a check to make sure everything is functioning as it should.

    Stress and fatigue lower my ability to monitor my body signals even now. So I agree with the people who said minimize other stresses while you're trying to deal with potty training.

    Using the disposable bed pads on wheelchair seats can really help with cleanup and keep odors from getting into the fabrics or vinyl of the wheelchair seat.

    For me, reducing liquid intake has a huge effect on my ability to keep control. I don't mean that your child should be dying of thirst, but this is no time for eight glasses of water a day, at least in my experience.

    I hope this is some help.

  27. Naomi, it is REALLY helpful to hear from you. Thank you so much.

  28. Would Max be motivated by being rewarded with purple items? (inexpensive purple toys and trinkets?) The trinkets and stickers could be used for each attempt he makes and for each time he actually goes in the potty, he could get a special sticker on the chart and after a certain number of stickers he can go to the car wash, or a little bit more expensive desired item.

    Some inexpensive trinkets and rewards:

    purple items from the dollar store
    purple peice of candy
    Do you have a five below store?
    purple markers (different shades)
    purple play dough

  29. Don't reward for trying JUST pooping or peeing, especially since you know he is capable of going on the potty. I learned this the hard way..... GOOD LUCK!!!!

  30. I got a big purple bowl I filled with purple trinkets. Didn't work. Max seems to have a crush on iCarly. She would work. Not sure how I can arrange a meeting, though, or whether iCarly would be game to hang out with Max while he's on the potty. Gotta ponder that.

    Wen, you're right... OK, I am dropping Max off at your house so you can potty-train him. See you tomorrow!

  31. We had great results using a method our ABA consultant recommended. It took a little over two weeks and was expensive but worked! Henry was 5 at the time and his sisters were 7 and 9, and so it was impossible to devote 2 weeks only to this. Basically, we set up camp in the bathroom with tv/DVD player...before the magical iPad /iPod came into our lives.., everything Henry liked. Henry wore a tighter tshirt and briefs, (poor hen!) so the therapist could easily see if he started to have an accident, and quickly direct to toilet, and really reinforce when he went on his own. When he was successful, no accidents, for a certain period of time, his area was extended, first to bathroom and hallway, then bathroom , hallway and tv room, until eventually he was FREE. It sounds much worse than it was, and we'd tried many other times without success. A couple of things that might have made it easier on us , is Henry is very mellow and LOVES videos, I think he was in to Cheaper by the Dozen then, so he really didn't mind as much as some kids might.
    We dressed Henry in a shirt that wasn't long enough
    Therapists were at the house from 8 until 7

  32. My special needs daughter is 6 1/2 and we are starting round ? of potty training. The comments in your blog have provided the most information I've been able to find so far. Thank you for posting on this!!

  33. Hi max i am a speaial ed kid I really want to get in touch with you because I am 10 and I need some suugstions for me because I were pull up and I wet my bed

    Chris verhalen


Thanks for sharing!

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