6 year old with sensory processing disorder and bathroom issues

Orlandodreaming

Earning My Ears
Joined
Mar 12, 2017
Hello,

Thank you in advance for any advice/suggestions/opinions. First, I should say I use to have a username on the boards but it's been a long time and I cannot find my old account information. However, I don't want anyone to think I'm trolling.

I have a 6 year old son who was recently diagnosed with ADHD/ODD and SPD (awaiting confirmation from the neurologist, but he "checks off most of the boxes" so to speak). As part of that SPD, he's always had bathroom issues. He didn't potty train until he was 2 months past his 5th birthday, and I use the term loosely, because he still struggles with pooping, has never once been dry at night, and usually doesn't feel that he has to go until the need is extremely urgent, and he literally has seconds to rush to the bathroom. If he gets hyper-focused on something, he will just go in his pants. He's had multiple accidents in school this year, and the bathroom is literally in his classroom probably 20 feet from his desk. His pediatrician also thinks he has an immature bladder, since drinking the smallest amount of anything will have him going 2 or 3 times in an hour.

Obviously, this has made theme park touring a little different. Before we had the diagnosis, my wife and I have been putting him in pull-ups so that he could at least tell us when he needs to go. But no matter how often we stop to use the bathroom, the pull-up was always used, or he'd tell us he needed to go when it was impossible to take him (e.g., like when we were already on a ride), or we'd take him before getting in line only to have him need to go 20 minutes later and by the time we could get out of the line and get to the bathroom, it was too late. Not knowing this was a sensory thing, we were getting pretty mad and frustrated at him. I realize now though that when he says he can't feel it or didn't know he had to go, he was being honest, and I feel bad for getting mad at him.

So now, here we are with a trip coming up next month and I really don't know what do to. We've tried the bathroom breaks before every ride and going often and using underwear, or even underwear with a pull-up over it, but again, he can't feel it before he has to go, and doesn't always seem to notice he's even wet or soiled.

I don't want to embarrass him by having to change him like his 2.5 year old brother, although he's never once seemed bothered by it, and maybe it's just me thinking that everyone in the bathroom is watching and judging me changing an older child and that's in my head, and even if they are judging, they don't know what his needs are. And I really don't want to embarrass him by leaving him in underwear and risking an accident on a ride or on line to meet a character or someplace where people might laugh.

Part of me thinks though that since he's not going to use the bathroom anyway, I should just use a regular toddler diaper (he's tall but skinny and easily fits a size 6) and thus avoid having to fully have to remove full pants and shoes in bathrooms that I'm sure while nicer than most places, can't be that clean, especially since pull-ups don't hold enough. And the other part of me says he's 6 and I should leave him in underwear and stop every 20 minutes and before every attraction and show, plan on becoming familiar with every bathroom, and pack lots of changes of clothes. And still another part of me says yea, he's 6, but 6 with special needs, so why make it harder on us and uncomfortable for him?

Any other parents deal with this or something similar? What would you do?
 
I am sorry that this is happing to you here are a few things

you need to decide what he needs not what the people you see around him will need ( and you will more then likely never see them again)

you can try to have him sit on the potty ( maybe go in the companion bathroom) where there is less of a decstration turn on the water and have him sit for at lest a minute.

I would also use the companion bathroom or first aid to change him more room privet

have a great trip
 
We've been there. It sounds like you know what needs to be done -- stop and use the restroom frequently, always before a ride, and use a pull-up as back-up. Don't "ask" if he needs to go, tell him it's time to "try" (and having the whole family do so helps as well). You can stop at Guest Relstions and enquire about a DAS, but in my experience it is hit-or-miss whether one will be given for toileting needs. Even with a DAS, it sounds like that may not entirely keep him clean and dry, so the back-up protection is important. And extra clothes. Ignore other people and their thoughts/opinions; do what you need to for your son. Some pull-ups can be done standing, with side closures; shop around. My DD ended up using small-adult size around that age because they were more absorbent than standard toddler or kid products.

A little off-topic, but has your son seen a urologist to be sure there isn't a physical concern?

Enjoy your vacation!
 
We've been there. It sounds like you know what needs to be done -- stop and use the restroom frequently, always before a ride, and use a pull-up as back-up. Don't "ask" if he needs to go, tell him it's time to "try" (and having the whole family do so helps as well). You can stop at Guest Relstions and enquire about a DAS, but in my experience it is hit-or-miss whether one will be given for toileting needs. Even with a DAS, it sounds like that may not entirely keep him clean and dry, so the back-up protection is important. And extra clothes. Ignore other people and their thoughts/opinions; do what you need to for your son. Some pull-ups can be done standing, with side closures; shop around. My DD ended up using small-adult size around that age because they were more absorbent than standard toddler or kid products.

A little off-topic, but has your son seen a urologist to be sure there isn't a physical concern?

Enjoy your vacation!

If he can't tell when he needs to go, what is the DAS going to do? Are they going to sit him on a toilet until it's time to get in the FP+ queue and hope he doesn't have to go in the 5-10 minutes it takes to get to/through the FP+ line and through the attraction?

OP, until his therapists come up with a treatment program for his SPD that deal with his bladder and bowel issues, don't worry about it and just keep him in diapers (not pullups if they don't hold enough) until he is able to process. But you've got to make sure his team is working on this issue, as his brain needs to be trained to sense/respond sooner than later.
 
We've been there. It sounds like you know what needs to be done -- stop and use the restroom frequently, always before a ride, and use a pull-up as back-up. Don't "ask" if he needs to go, tell him it's time to "try" (and having the whole family do so helps as well). You can stop at Guest Relstions and enquire about a DAS, but in my experience it is hit-or-miss whether one will be given for toileting needs. Even with a DAS, it sounds like that may not entirely keep him clean and dry, so the back-up protection is important. And extra clothes. Ignore other people and their thoughts/opinions; do what you need to for your son. Some pull-ups can be done standing, with side closures; shop around. My DD ended up using small-adult size around that age because they were more absorbent than standard toddler or kid products.

A little off-topic, but has your son seen a urologist to be sure there isn't a physical concern?

Enjoy your vacation!


Thanks for the input! No, he hasn't seen a urologist only because his pediatrician feels that isn't the issue -at least not yet. At his most recent visit, one of the things she did say is that she cool feel all of the poop when she pushed against his stomach ( not surprising, because he tend to try to withhold it and will often only go once or twice a week) and that could be also be causing his bladder issues. I do know that even at home, it's always a mad dash for him to the bathroom.

Like I said, I feel terrible now about having been hard on him. I couldn't understand how, when he can be dripping wet, that he didn't know he had to go and didn't feel it. I thought he was being lazy and just making excuses, and I'd never heard of SPD before. Now learning about it I see that so many of his behaviors/actions, not just the bathroom issues, are SPD.
 
If he can't tell when he needs to go, what is the DAS going to do? Are they going to sit him on a toilet until it's time to get in the FP+ queue and hope he doesn't have to go in the 5-10 minutes it takes to get to/through the FP+ line and through the attraction?

OP, until his therapists come up with a treatment program for his SPD that deal with his bladder and bowel issues, don't worry about it and just keep him in diapers (not pullups if they don't hold enough) until he is able to process. But you've got to make sure his team is working on this issue, as his brain needs to be trained to sense/respond sooner than later.

At home he does better -bathroom is close and more often than not can get to the bathroom. School has its challenges -teacher doesn't like that he will often go 6+ times in a day and as I mentioned, when he gets caught up in what they're working on and focuses in on that, it's like he blocks out everything else and has an accident. I worry that when he no longer has a bathroom right in his classroom -which I think happens next year in second grade - accidents will become more frequent because he won't be able to get down the hall to the bathroom and/or his teacher isn't going to want him leaving to use the bathroom the whole time.

In terms of Disney, I get now that it's the sensory overload of the parks that's contributing to his inability to recognize when to go, but yea, because he can and often does go frequently -especially in the parks because it's often warmer and he tends to drink more - it's a double whammy. Even if they gave him a DAS that allowed him to get out of line whenever he wanted, for example, he never gives us enough warning to work our way out of the line and get to the closest bathroom. Or, he doesn't understand why, if we're on something like Pirates, and he needs to go RIGHT THEN, we can't just simply get off and go, lol.
 
If it were me I would go with the regular diaper and then change him in either a companion restroom or at the first aid/baby care centers. This way you have your privacy and do not have to feel uncomfortable with a 6 year old in a diaper. Also in a companion bathroom you could be changing one child while your spouse uses the restroom and then visa versa. This way all four of you could have your "needs" met in one stop.

Disney is no place to try to potty train anyone. You are only going to make yourself frustrated.

As for a DAS, it would probably benefit you to get one. You go to Guest Relations/Services and simply tell them you are there for a DAS for your son who has problems waiting in lines. They do not ask for a physicians letter or a diagnosis (as it is illegal to do so) but simply what your needs are, although most people with children in the autistic spectrum simply say the word autism and the pass is given. If you so to the info on DAS threads, they can explain how you use the DAS. It will help your time waiting in lines with no access to a bathroom. You still wait, just not in a line where you are trapped if he has a need to go.
 
Last edited:


If he can't tell when he needs to go, what is the DAS going to do? Are they going to sit him on a toilet until it's time to get in the FP+ queue and hope he doesn't have to go in the 5-10 minutes it takes to get to/through the FP+ line and through the attraction? ...........................
.

And to answer this question. Ummmm yes, sometimes that is what you end up doing and not just for children but adults too.
 
I've dealt with similar issues with my DD who is on the autism spectrum. One key for us was dealing with the constipation because all the poop she was holding in was pressing on her bladder and making her have more frequent pee accidents. I would use Miralax on weekends when we were home and could have her go potty more frequently. I also established a routine that she had to try to poop every morning after breakfast. After she got into that routine and her constipation lessened, she began to recognize the sensation that she needed to pee a little sooner. She would still have accidents at school because she still wouldn't recognize it until the need was very urgent, and then the process of getting the teacher's permission to leave and getting to the restroom meant she was often too late. I worked out that she needed to go about every 90 minutes, and shortly after meals. I bought her a watch with a vibrating alarm and set it so it would go off at that time interval and after her school lunch time. Because it was vibrating, her classmates wouldn't hear it and figure out what it was. But it worked, she started going to the bathroom on a regular basis and the more she did, the more she began to recognize the sensations. She now has almost no accidents.

At Disney, we use the rule that when one has to go, everyone has to go. And then I make sure I stop frequently. She has some ODD tendencies. If I tell her she has to go to the bathroom, it sets up a battle of "no, I don't." But if I say I have to go, she's compliant to go with me.

It wouldn't be a bad idea to consult with a urologist just to make sure there isn't a physical problem that is contributing to the issues.
 
I've dealt with similar issues with my DD who is on the autism spectrum. One key for us was dealing with the constipation because all the poop she was holding in was pressing on her bladder and making her have more frequent pee accidents. I would use Miralax on weekends when we were home and could have her go potty more frequently. I also established a routine that she had to try to poop every morning after breakfast. After she got into that routine and her constipation lessened, she began to recognize the sensation that she needed to pee a little sooner. She would still have accidents at school because she still wouldn't recognize it until the need was very urgent, and then the process of getting the teacher's permission to leave and getting to the restroom meant she was often too late. I worked out that she needed to go about every 90 minutes, and shortly after meals. I bought her a watch with a vibrating alarm and set it so it would go off at that time interval and after her school lunch time. Because it was vibrating, her classmates wouldn't hear it and figure out what it was. But it worked, she started going to the bathroom on a regular basis and the more she did, the more she began to recognize the sensations. She now has almost no accidents.

At Disney, we use the rule that when one has to go, everyone has to go. And then I make sure I stop frequently. She has some ODD tendencies. If I tell her she has to go to the bathroom, it sets up a battle of "no, I don't." But if I say I have to go, she's compliant to go with me.

It wouldn't be a bad idea to consult with a urologist just to make sure there isn't a physical problem that is contributing to the issues.

I like the idea of the vibrating watch. He hasn't learned time on a regular clock yet, and I'm not sure he'd completely grasp the concept of "go every 30 minutes", but if it could be set to go at certain times to remind him that might help for things like school. I know, because I've gone into the bathroom with him when he goes sometimes, that he's definitely emptying his bladder -he's not rushing or anything. Which makes it even more incredible to me that 20 minutes later his bladder could be completely full again, but that's why his doctor thinks it's just small.

He was on Miralax to help him go regularly but our pediatrician's office sent out a recorded message to immediately stop using it in children under 18 due to FDA concerns. When I brought that up to the pediatrician she had no idea what that was about as there are no recent warnings, but it was enough for my wife to insist we no longer use it.

Part of his problem with constipation I'm sure comes from his sensory issues with food. He has a very hard time with the way things look, feel and taste, and will actually gag himself to the point of making himself sick if he tries anything different. So his diet isn't the best and getting him to eat or drink anything different is a huge battle. When I asked recently when that might change, his doctor said "possibly never."
 
Part of his problem with constipation I'm sure comes from his sensory issues with food. He has a very hard time with the way things look, feel and taste, and will actually gag himself to the point of making himself sick if he tries anything different. So his diet isn't the best and getting him to eat or drink anything different is a huge battle. When I asked recently when that might change, his doctor said "possibly never."

Does he work with an Occupational Therapist? If not, you will want to look into that to help with the sensory issues. There was a point when my DD would only eat four foods, and one of those was french fries. We worked with an OT who was able to make progress in getting DD to expand her palate. She's still picky, but now has a decent variety of foods she'll eat and she will at least try new things.
 
I have no advise as we are not gifted with children. But I am an adult with Inflammatory Bowel Disease. I have to admit to wearing an adult diaper. I cannot predict my toilet needs. I get a DAS card. I think it would benefit you. It would take one element of stress out of your vacation. You can at least make yourself clean before and after a ride.

Standing in line would not be for you. I do hope you can fimd a way of enjoying your vacation. I do. I am also a wheelchair user. You and your family will find a way to cope. I would seek as much help from the health care professionals aa I could. Good luck!
 
Just a few quick tips for traveling with disposable undergarments and/or changes of clothing:

My Mom suffered incontinence issues after multiple strokes. When visiting WDW, we would set up "bathroom kits" that I would create in a gallon zip-lock bag. It would have a fresh pair of briefs, a pair of nitrile* gloves, and a small supply of wipes in a sandwich size zip-lock bag. We would also include a fresh, clean damp washcloth folded in a separate ziplock bag. Because Mom sometimes got emotional during toileting (side effect of her stroke) I always popped in another sandwich bag with a few tissues folded up. In two separate gallon zip-lock bags I would put one pair each of the soft knit pants she preferred to wear in case we needed a wardrobe change. As the day progressed, I would keep/consolidate any "extras" that we didn't use, and place soiled briefs, wipes, etc. into a ziplock to dispose of. Soiled washclothes went back into a ziplock bag for laundry. We also made sure to carry sufficient snacks, water, and a supply of clean cotton bandanas (again - ziplock bag!) which can be handy in *so* many ways. By packing everything "flat" in ziploc bags and squishing all the air out, it makes it super easy at Security/Bag check as well; they can see all the contents of every bag, and so won't have to go rooting around through everything.

*we only carry nitrile gloves so we don't accidentally expose someone with a Latex allergy to a trigger.
 
My son has ASD and some brain damage...and chronic constipation. Its a pretty vicious cycle. The GI and neurologist have said that part of the problem is that he literally doesn't feel the need to go. Part of that is, according to one theory, over excitement of the nerves. Then the backup itself causes desensitization....and takes up room which takes away bladder control. And my son is nonverbal, so he has trouble communicating the need. We do seem to have finally hit on a good combination of Miralax and Ducolax that works.

Any, for Disney, we try to have a REALLY good clean out the week leading up to the trip. I really don't like the diaper idea, as, well kids know you pee in your diaper. For the ASD kids I've known, if you put them in a diaper they are going to pee unit, even if they don't need to pee, cause you're supposed to pee in a diaper. Instead, I try to pick clothes that don't show too much, and have a jacket I can tie around his waist to get to the nearest bathroom. Since you're a guy with son, you wouldn't have to hunt down a companion bathroom which aren't always close...just use the bigger stall.

We also have a rule that if we pass a bathroom we can use, we use it.

But I would start with a talk with the GI.
 
No, he hasn't seen a urologist only because his pediatrician feels that isn't the issue -at least not yet. At his most recent visit, one of the things she did say is that she cool feel all of the poop when she pushed against his stomach ( not surprising, because he tend to try to withhold it and will often only go once or twice a week) and that could be also be causing his bladder issues. I do know that even at home, it's always a mad dash for him to the bathroom.

If he's becoming constipated, that can impact the bladder. But it still wouldn't hurt to have a URO consult, and I'd be pushing the PED for it. It may well be the SPD causing both the incontinence and constipation, but a PED may not really in the position to be determining that at this point. Often children with neurological needs have unusual physical issues as well that can be masked by the neuro stuff. My DD actually has structural anomalies in the urinary tract, and a PED never would have discovered it.

School has its challenges -teacher doesn't like that he will often go 6+ times in a day and as I mentioned, when he gets caught up in what they're working on and focuses in on that, it's like he blocks out everything else and has an accident. I worry that when he no longer has a bathroom right in his classroom -which I think happens next year in second grade - accidents will become more frequent because he won't be able to get down the hall to the bathroom and/or his teacher isn't going to want him leaving to use the bathroom the whole time.

You might want to ask about a 504 plan at school, which may be easier with the backing of a URO than a PED. DD has an IEP but it is written in that they will schedule restroom breaks for her every 2 hours (what her URO prescribed) and make sure she keeps to that schedule. It has nothing to do with what the teacher likes or wants; it's a medical need they must accommodate. PP's suggestion of a watch is good, if he'll pay attention to that AND if the teacher will allow him the time for restroom breaks (which is where the 504 plan may be valuable). We looked into a watch for DD but her teachers have been very good about her schedule and she'll now read a clock to keep track of time. You can find watches at www.bedwettingstore.com. DD was about 10 or 11 when we finally used a bedwetting alarm and it worked wonders; but the child has to be physically ready for that and your son may not be there yet.


For WDW: if he is working with an OT, I would ask the OT for thoughts/suggestions about how to deal with a vacation. I suggest you try some day trips near home to see what works or doesn't work. A long car ride plus a day at a local zoo or museum, or even start with a few hours at a mall -- anywhere away from home for several hours with sensory stimulation -- and try some techniques of how often to use a restroom and how long he can stay dry.

Good luck and enjoy your vacation!
 
I see lots of talk about pull ups and diapers but there are other options. :) I use cloth underwear ... kind of like a cloth diaper for my 6 yo old daughter. Super undies is what we use but I am sure you can find something similar for your son during your trip.
 
I do not have a child and have great respect for any parent who takes a child to the parks.

I am not entirely sure what a sensory processing disorder is but wanted to mention that Disney toilets flush themselves loudly and frequently. When I was fighting migraines in the parks, the noise and sensation of the flushing would drive me nuts. Hope that won't bother him.
 
I do not have a child and have great respect for any parent who takes a child to the parks.

I am not entirely sure what a sensory processing disorder is but wanted to mention that Disney toilets flush themselves loudly and frequently. When I was fighting migraines in the parks, the noise and sensation of the flushing would drive me nuts. Hope that won't bother him.

I have been told that you can put some wet toilet paper on the eye of the flusher and it will not flush until you take it off,
not sure where you would get the water from.

I use sticky note when I remember them/or if I am having a very bad day and can not handle it.

also Disney dose have the phone ( SP?) ear plugs if you are having a day where noise is nothing you,
 
Just wanted to thank everyone for all of the replies and helpful suggestions and input.

For the person or persons asking if he is seeing an OT -not yet. Still waiting on official written confirmation by the neurologist. We're 99% certain it's SPD but until the doctor signs off and makes it official, we can't address OT with the insurance company. Gotta love insurance companies. He definitely needs OT for a variety of issues -food is a big one, also things that I never understand why he was so uncomfortable about - like hand-washing and getting his nails cut. He also doesn't know how to (and this sounds silly to say) really play with other kids. He tries, but he doesn't understand body language or cues, ignores personal space and just doesn't seem to "get" what the other kids are doing.

I feel silly not recognizing sooner that he did have some special needs looking back on it now, but we'd never heard of SPD before this.

The 504 plan is likely something we will look into. Right now, his teacher is very good about letting him use the bathroom whenever he needs to because she can tell he's not doing it for attention or to get out of school work. She says she can suddenly see him jump up or otherwise indicate that he needs to go and she knows that it means right then and there. Her bigger concern I think was just that she didn't want him to keep missing classroom instruction or fall behind because he is constantly running to the bathroom.

Still debating what to do in the parks for our trip, but leaning toward using Goodnites overnite pull-ups with a diaper doubler in them for extra absorbency, since he does wet a lot and frequently (and I know he's going to be drinking a lot in the warmer weather). I know those are a lot more inconvenient to change -and he doesn't care what I use on him - but *I* feel awkward putting my older son in a toddler diaper like his younger brother. I guess it's still strange to me that he can quote whole sections of his favorite movie and name every Cars character from the movie Cars (I wish I was kidding about that, lol) and yet from a sensory perspective his brain and body work entirely differently.

I think I will likely do what someone here suggested and use the companion restrooms and baby care centers as much as possible to change him so to avoid so many people questioning why this past diapered child is still getting their diapers changed.
 
Just wanted to thank everyone for all of the replies and helpful suggestions and input.

For the person or persons asking if he is seeing an OT -not yet. Still waiting on official written confirmation by the neurologist. We're 99% certain it's SPD but until the doctor signs off and makes it official, we can't address OT with the insurance company. Gotta love insurance companies. He definitely needs OT for a variety of issues -food is a big one, also things that I never understand why he was so uncomfortable about - like hand-washing and getting his nails cut. He also doesn't know how to (and this sounds silly to say) really play with other kids. He tries, but he doesn't understand body language or cues, ignores personal space and just doesn't seem to "get" what the other kids are doing.

I feel silly not recognizing sooner that he did have some special needs looking back on it now, but we'd never heard of SPD before this.

The 504 plan is likely something we will look into. Right now, his teacher is very good about letting him use the bathroom whenever he needs to because she can tell he's not doing it for attention or to get out of school work. She says she can suddenly see him jump up or otherwise indicate that he needs to go and she knows that it means right then and there. Her bigger concern I think was just that she didn't want him to keep missing classroom instruction or fall behind because he is constantly running to the bathroom.

Still debating what to do in the parks for our trip, but leaning toward using Goodnites overnite pull-ups with a diaper doubler in them for extra absorbency, since he does wet a lot and frequently (and I know he's going to be drinking a lot in the warmer weather). I know those are a lot more inconvenient to change -and he doesn't care what I use on him - but *I* feel awkward putting my older son in a toddler diaper like his younger brother. I guess it's still strange to me that he can quote whole sections of his favorite movie and name every Cars character from the movie Cars (I wish I was kidding about that, lol) and yet from a sensory perspective his brain and body work entirely differently.

I think I will likely do what someone here suggested and use the companion restrooms and baby care centers as much as possible to change him so to avoid so many people questioning why this past diapered child is still getting their diapers changed.
you can also use first aid to change him if needed. hope this make you laugh but at special needs home that I worked at should also say where I meet my husband, there was a child who wanted to know everyone's phone number. if you gave him any name of a staff person present or past and he could recite that number. when I knew him he could recite around 50 numbers and yes he was always correct. and yes he was mentally delayed and was never going to be able to live on his own
 

GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!






Top