Desperately need help with toileting issues ....
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Anonymous
| My child has tremendous trouble staying dry during the day. My conclusion is that his sensory under-responsiveness issues are interfering with the signals -- he does not sense when his bladder is full, nor does he notice when his parents are wet. We've done full medical work-ups, and there are no physiological issues. Does anyone have any good suggestions for training the sensory system? He's resistant to timed voiding, because he insists that he does not need to go. Anyone used the clip-on alarm systems for daytime issue? This is rapidly becoming the most challenging of his issues; it's the most noticeable of the symptoms of the SI problems and it's really interfering with his ability to make friends. I've done a ton of reading on this, and all the books say "Yeah, kids with sensory issues can be really tough to potty train" but don't give much help. It seems to be getting worse as he gets older, not better. His OT has tried some massage or stretching, but that doesn't seem to help. |
Anonymous
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OP, how old is your kid? Is he at home in preschool or older? Does he have other diagnoses and/or been assessed by a developmental pediatrician. It sounds like you've ruled out the physiological but not necessarily the neurological or behavioral.
I would consider ABA or behavioral therapy to help with compliance. Do a picture schedule, e.g., wake up/toilet/breakfast/dress He gets a reward for using the toilet first thing upon waking. Similar picture schedule for playtime/toilet/snack or bedtime routine. |
Anonymous
| OP here. He is in school, which makes the behavioral incentives a bit harder to implement, as the teachers aren't really going to give him an M&M every time he pees. We did behavioral incentives when he was potty trained several years ago, but haven't really renewed that effort since his sensory stuff unraveled. The real problem is that he has no sense at all of when he needs to go, and actively insists that he does not need to go, even when his bladder is full. He has an SPD diagnosis, and ADHD may be an eventual diagnosis. Wondering how parents of kids with sensory under-responsivity deal with this -- do the behavioral incentives help? Is there any way to address the sensory piece? The medical doctors say that the bladder is not neuropathic, so it's not a neurological problem in the traditional sense. |
Anonymous
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You can still work with an ABA or behavioral therapist to visit the school to help implement behavioral strategies, but I would try implementing the pattern at home first. Rewards can be an M&M, sticker, gold star, little toy like they have at the dentist/pediatrician and you can definitely start with the morning routine b/f he leaves the house. Eventually the rewards are replaced by praise.
Is this a full day preschool/day care situation or is he in elementary school already? If he's in a full day preschool program and you're not working full time, you might want to rethink the schedule and cut back on the number of hours. SPD isn't an official diagnosis in the DSM and usually doesn't exist in isolation. If he's this resistant to potty training and/or is low tone, more than likely there are other factors at play. ADHD isn't always the reason for sensory issues. ADHD is neurological BTW, e.g.: http://www.ninds.nih.gov/disorders/adhd/adhd.htm as is autism and a host of other things. If he was potty trained "for years" and has regressed in this skill, I would definitely seek out a developmental pediatrician. You need a fuller picture to be better able to help him. |
Anonymous
| What other factors, other than ADHD, could be at play? Hes had a lot of screening already, although we have more scheduled, and I'd like to know what they should/could be looking for. And does it matter, for this issue? It seems to me like the biggest issue is his brain not picking up on the sensation that he has to go. If his bladder is super super full, then he does get the sensation and runs off to the bathroom. His theshhold for this, like other physical sensations, is just way too high. |
Anonymous
| I'd give up (for now) on the sensation thing and just train that every 2-3 hours he needs to go to the bathroom. And it's not acceptable to say he doesn't "need" to go. Sounds like he's in elementary school. You can/should explain that he simply must keep his underpants and clothing dry, he's old enough to do this. And, "Since you don't know when you need to go, we're going to do something new. From now on, at 9am, 12, 3pm, and before leaving a building (to go home, to school, to playground) and when arriving at a building (entering school, house, friend's house) you must go to the bathroom." He will probably urinate most of the time because his bladder is full. And when his underpants are dry all day then he gets a toy that he loves (or a special treat like more time on tv, or whatever really works for him). Eventually, when he's dry more than not, then you can say he gets a chip when he's dry all day, and a certain # of chips get cashed in for special things (5 chips = pizza dinner, 10 chips gets a trip to local playspace, whatever he loves. |
Anonymous
What kinds of evaluations is he having and who's conducting them? Evaluators do tend to know what they're looking for but if you're relying on county services for example, they won't necessarily screen for underlying issues that would could cause issues like this. Also if he's of school age, an issue like potty training doesn't have an "educational impact" so they may be of limited help to you. I agree with 11:52. Don't focus on him feeling the "sensation" but go at predictable scheduled times of day. |
Anonymous
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I have a kid like yours who is low tone and is generally less sensitive to stimuli than other kids. He has been diagnosed with ASD/Asperger's, He rarely cried when he fell down as a toddler even when there was a huge bruise. Unfortunately, this insensitivity is also in feeling when he has to go for both poop and pee.
Have you seen a gastroenterologist? These kids are prone to constipation - even if they are pooping every day. Get an x-ray to see if it is all clear down there. If his bowels are not completely emptied, it will mess up all the signals for pooping and/or peeing and coupled with the fact low tone, it will be literally impossible for your kid to feel when he has to go. After the constipation is cleared up if any, you need a schedule. What's worked for us is: as soon as he wakes, before going out anywhere, after school, after dinner and before bed. He is reluctant to use the bathroom at school but has not had any accidents since preschool so I let it be. His teachers are aware of his issues with the potty. After you establish a schedule it'll become routine but it's important to rule out any other issues like constipation that'll make the problem worse. GL! |
Anonymous
| Yeah, we've seen the gastro folks. There was constipation, but we've ruthlessly eliminated it (pun intended) over the past year. I've been doing the schedule and "rewards" over the past 6-9 months, and it just doesn't work. He stands there and repeats that he doesn't need to go, then it leaks out of him 10 minutes later. The 11:52 poster that says "He will probably urinate most of the time because his bladder is full" is 100% incorrect. He has absolutely no idea that his bladder is full, and very little idea of how to work the muscles/sphincter to empty it. I've seen him pee on the floor a foot away from a toilet, and not even realize he was peeing. If we stand there at the toilet long enough, then some will eventually go into the toilet, but often it's not even a full emptying of the bladder. It's just not a sustainable system -- he needs to learn when it is that he needs to go, and/or how to control the muscles that keep the pee in and/or let it out. I was really hoping that other parents of kids with ASD and/or SPD would have a system that works to train the brains/muscles/neurological system/whatever. I guess I'll soldier on with the timed voiding and meaningless reward system... |
Anonymous
Did you get a x-ray to make sure it's gone? Also, it can take more than a year for the parts down there to shrink back down to size and the nerves to start working like they are suppose to. You have all my sympathies, truly. It's incredibly frustrating. At one point our pediatrician made us see a neurologist to make sure it wasn't something neurological - Hah! The neurologist basically laughed at me after declaring there was nothing wrong with DS neuro-wise. Put a dry board chart by the toilet. Get your kid to check off scheduled toilet time after he sits on the toilet. At least that will put it on him if he gets wet. Also, I made DS clean up himself if he had an accident and he had skipped "potty time" which for him was a big incentive not to have any accidents and not to skip the potty. |
Anonymous
| a friend of mine has a 6 year old with SPD. about a year ago and after exhausting all other routes a pediatric urologist finally started her on small doses of anti-depressants, my friend said that somehow they make a connection between the brain and the bladder? after 1 year things have gotten better and she no longer needs to wear pull ups to school. they are hoping to be able to wean her off the anti-depressants eventually. also they found that letting her sit on the toilet every 2 hours did no good because she could never feel the need to pee and when she did pee, she did not completely empty her bladder, so that means that if she peed she could easily pee again 20 minutes later. she is also on I think Flomax to make sure that when she pees she fully empties her bladder. she also had constipation issues as well as a contributing factor so they use a stool softener too. urologist is not in DC area, they live in NY. good luck, maybe this route would help your son too. |
Anonymous
How old is your kid? Is he in public with an IEP? I was just told by an ES principal (because my own child continues to struggle and is eligible for K next year) that toileting routines can absolutely be written into the IEP. It is in everybody's best interest for him to be trained. |
Anonymous
Is it possible that whatever you are doing to eliminate the constipation is interfering with his ability to recognize the sensation (not sure if it could - just an idea)? Our ABA team helped toilet train my son. The process was designed to help him recognize the feeling and be successful, however, the technique sounds very similar to what you are already doing. I'm sure that you have already tried this, but one part of it (which is common across most potty-training programs) was pushing liquids - that was you get a full bladder quicker, and during an intensive teaching time, you can make sure they are sitting when the full bladder happens. Obviously you can't do this forever, but over a short span (a day or two) you could use this to help recognize the sensation since it is more dramatic. Part of the success, though, was due to time. We had tried a year earlier (age 4), and he just really truly wasn't ready, and I don't think he could feel it. A year later (at age 5) he was finally ready and he was (and still is) very successful. If your son is on the younger side (I don't think you have mentioned an age) then it may just be an issue that needs time. My NT 5-year-old also just seems to not know she has to go until the very last second when it's an emergency. |
Anonymous
Even if he's low tone and/or has sensory issues that have led to physical complications like constipation, the behavioral component of this--the refusal to go can still be addressed by a behavioral therapist. As a parent, you've gone as far as you can go on your own. It's time to seek professional help. Call in the big guns. |
Anonymous
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OP, with your situation, the rewards shouldn't be for successfully going in the potty. At this point, your kid gets a reward for sitting on the potty the first time tell him to. You need to break the cycle of him arguing with you through positive reinforcement.
How old is he? Can you sit him on the potty if he refuses the first time? Also, if you're not already, I would dress him in pants/shorts that he can pull down without having to deal with buttons/zippers. |