At my wits end potty learning, 6yr old son, maybe sensory? - Mothering Forums

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#1 of 10 Old 10-22-2015, 06:53 PM - Thread Starter
 
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At my wits end potty learning, 6yr old son, maybe sensory?

I'm sure I've posted on this in the past... but I'm back again, because my son is now 6, just started Kindergarten, so a whole new batch of transitions and changes to thrust him in to regression... and a new batch of teachers and therapists.

He's in a special Kindergarten for kiddos with special needs, 8 are developmental delay (AU), his IEP is for speech but he's also very hypo sensory. Not all the boxes for "sensory processing disorder", so say the past two evals he's had, but he has many sensory quirks.... Definitely a sensory seeker.

New teachers were positive... "oh we have many kiddos with bathroom issues".... until He comes in with Major #2 accidents, doesn't tell you when it's happened, LIES about it.

So they started with Conversations.
I was on board with this, because it's understandable in a new room... they have to talk about it; get him to understand the rules and "you are in charge of your body" and give him kudos when he goes.
But to him, the conversations draw attention to it and makes it worse.

The past two weeks, 100% elimination is in an accident. He's not even attempting to Go To the potty.
And now it's 2-3x A Day.
And now he's also completely regressed at home. So much that we might have to go back to Pull-Ups because I'm throwing out 2-3 pairs of underwear A DAY, and threw away a pair of pants last week because, just.... ew.

It wasn't this way at the beginning of school, but now 5 weeks in, complete regression. He doesn't have pee accidents... it's just major poo.

New teachers brings up all the same conversations: talk to his pediatrician. So I did. Again.
His body is Fine. He Can hold it; he Can make it to the potty -- he did for 3 months of the summer. He's just in a regression. I ask.... is 2-3x a day Too Much? Pediatrician says no. I'm not sure that I agree with that... seems like a lot to me but it's what he said last year, and the different pediatrician the year before that.

So barring any physical issue... we're now at a loss.
Again.

Personally... I think it's sensory-related. I mean, it's more than that. Maybe there is a dietary thing happening and maybe I need to put him on an elimination diet and then move in to a GAPS diet... get him OFF processed school food altogether. I've gone that route before and it's helped for a time, but not permanent... although we've never stayed on GAPS permanently. I did 6 months 2yrs ago and after 3 months the consistency of his poo went back to squishy, so I cheated on the diet and eventually let it go. So... maybe diet is a big factor.

Certainly I think there is a reactionary thing happening. But now for the past week, they switched from Talking about it... to positive reinforcement. Happy charts; rewards; rewards for even 1/2 day of no accidents.
He doesn't care.

So I go back Sensory because I don't know what else to think.

This summer he was in a very sensory-based program. It wasn't for special needs kiddos specifically but the teacher was Pro-Sensory, had a sensory room, and gave him 3-4 minute breaks every hour where he could bounce, swing, play in their sand bucket, etc.
And he had limited accidents, NO #2 , and only pee accidents when they were playing outside and he was distracted and Oops -- and genuinely felt embarrassed by wetting his pants.

But how do you increase sensory in a classroom where it's not that kind of teacher?

I mean... I think he might even be one of those hypo- kids that LIKES it in his pants. He certainly has no problem with it. Isn't bothered by the smell; isn't bothered by the feeling. Maybe he likes it.

But his "quirkiness" doesn't qualify him for OT in the classroom. He stumbles, he falls, he breaks pencils, he steps on your feet... but he isn't aggressive or otherwise SO SPD that he's ever qualified. We will meet with OT in a few weeks for another evaluation just to see. but...

Do I just try to beef up his sensory before school? After school he does karate and we swim 3 days a week, plus our house is very sensory oriented - it's not a playground, but I try to keep an active sensory diet for him.

But even with all I'm Already doing... he's 100% regressed right now, home and school. I am just Done. I have given up attempts to yell or be positive or reward or try. I've cleaned so many adult-sized poops out of carpet and pants and sofas... and he LIES and that maybe more than anything breaks my heart... standing in front of me and just lies to my face... I'm just exhausted by this conversation.

I could really use some advice.

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#2 of 10 Old 10-23-2015, 10:08 AM
 
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Stress messes with anything. Even if his digestive system was okay, that's a lot of changes and I wouldn't be surprised if his tummy was not happy. Going back on GAPS may not be a bad idea.

More important than how often, what's the quality of his poos? This is icky territory but very important and something everybody should know- but it's something a lot of doctors don't really acknowledge. http://lifehacker.com/what-does-the-...ean-1535648433 That's got some information, albeit tongue-in-cheek. The Bristol Stool scale is very handy and color can be good to look into as well. http://commonsensehome.com/whats-a-h...owel-movement/ This also has more guides on how to get healthier BMs.

A healthier digestive system is easier to deal with.

But it's not just the healthy BMs- you do seem to have a behavior issue and that's not easy. A lot of kids, even neurotypical kids, find a full diaper to be comfortable. It's a side-effect of diaper training. Diapers go against their natural instincts, so we teach them to squelch their natural instinct for cleanliness, and instead they become more comfortable with the warm, gentle embrace of excrement.

There's also the privacy aspect. When you get used to going in a diaper, going in the potty, even in an empty room, can feel like pooing in the middle of the floor. Here's another place that stress is rearing its ugly head- if he's uncomfortable with all the changes, he's going to have a harder time being comfortable using the potty. Even though, technically, he's physically capable of controlling his poo, if he's really uncomfortable, it won't come out. And if he has the alternative of something that's much more comfortable, well...

I'm really sorry that he can't have an OT. This is a rough situation, I think there are a lot of issues colliding and that's not easy. The OT might not fix everything, but it sure wouldn't hurt.

Has he been evaluated by a developmental pediatrician? Might be worth a try.

Start with GAPS. Healthy gut, healthy kid, everything's easier when you aren't dealing with discomfort.

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#3 of 10 Old 10-25-2015, 08:05 PM - Thread Starter
 
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Oh Silly... I love your responses, always. I rarely post here anymore and I always know you'll give a Real Response, and I so very much appreciate it.

I'm in Argh, no doubt. I'm just Done, and that's no way to be where there's an issue at hand.
Tomorrow we meet with OT/Psych/Speech and the school nurse. To talk about evaluations that should happen because it's been almost 2yrs and there's a lot to look over. I appreciate the school bring in the Nurse. Yikes, but we're there. Pediatrician has nothing to offer; maybe school nurse will. I'm at a loss at this point.

Dev Ped is the next route. It's not available in my area and I don't have insurance. $600 for a basic evaluation at the closest "center", and that center doesn't offer speech... and since his Main issue, or so we'd always remained, was speech... not really applicable. But he's getting older and sensory and others are becoming more and more apparent. Thank you for mentioning this because it might be what the therapists say tomorrow.

I'll keep you posted.

Of all his issues, never thought that the Bathroom would be the biggest one. But it certainly is for now.

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#4 of 10 Old 10-26-2015, 05:20 AM
 
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If it helps, it's becoming increasingly common for neurotypical kids to have bathroom problems in kindergarten. The special needs make it harder to address but you could be dealing with this even without them.
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#5 of 10 Old 10-30-2015, 02:06 PM - Thread Starter
 
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Just wanted to share my follow-up from our IEP meeting.... the School Nurse is now involved and wants to research with the pediatrician. All of us in the room agreed that the pediatrician is the best in the area, but not that developmentally-focused. Back to the need for a DevPed in the area, and we don't have. So Nurse will research out to him with Sensory Processing as the main issue.

In our conversations I was adamant to explain that while he's in a regression of complete yucky Right Now, this is not his 100%. He CAN be Ok with the potty for a good 3-4 months at a time. But he has these regressions every 3-4 months. He's never gone beyond 4 months... and in those 4 months he might still have pee accidents when he's distracted or having too much fun. So it's not that he Does Not Feel It 100%... because he CAN feel it.
He ticks 80% of the sensory processing disorder boxes... but not all, you know? Nothing with him is consistent.

No, he's never complained at getting a shot and he falls 8 times a day, HARD and never complains. But he does Fall and hurt himself sometimes. It takes a lot, but he does have nerve endings in there somewhere. And sometimes he does "hold it" for 4-5 days because his poop hurts him. No, he is not a consistently constipated person (nothing about him in consistent) and it's only ever 5 days At Max when he holds it and that's a rarity. Most of the times, he's toothpaste consistency and once a day.

Enyhoo.. glad we've got the nurse on it. She feels like someone in my corner who will demand things of my pediatrician who might not know... and that's OK that he doesn't know, but that we're needing input; if it's a referral elsewhere, fine. But please get us in a direction moving forward.

yeuck. it's all messy, pun intended.

----- I also agree that most of the "normal" kiddos I know are also still battling potty problems now in K. Most of those have a reason you can pinpoint: are scared of potty, scared of public, etc. But at least that is a comfort that I'm not alone. I guess the special needs aspect just raises a bigger concern to all involved....

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#6 of 10 Old 10-30-2015, 06:35 PM
 
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He ticks 80% of the sensory processing disorder boxes... but not all, you know? Nothing with him is consistent.
SPD is an umbrella disorder that ticks off many boxes in many areas. Sometimes the symptoms are actually contradictory- because some kids are hyper sensitive, some are hypo sensitive, etc. It impacts all of the senses, and can impact them differently.

I don't think anyone ticks all the boxes.

Quote:
No, he's never complained at getting a shot and he falls 8 times a day, HARD and never complains. But he does Fall and hurt himself sometimes. It takes a lot, but he does have nerve endings in there somewhere. And sometimes he does "hold it" for 4-5 days because his poop hurts him. No, he is not a consistently constipated person (nothing about him in consistent) and it's only ever 5 days At Max when he holds it and that's a rarity. Most of the times, he's toothpaste consistency and once a day.
Dealing iwth a kid with that kind of control/awareness is definitely hard. Holding in his poo like that can cause constipation and really hurt him. Have you tried laxatives? I'd only do it under a doctor's guidance and be careful with it, though.

Sometimes, really mushy, diarrhea-like stool actually means constipation. If he has a blockage, then only the really soft stuff is leaking past. It also may be why it's painful for him.
Toothpaste consistency isn't great. It's not full-on diarrhea, on its own I wouldn't worry about it, but it's not ideal and I would worry about constipation.

Too much fiber and too little fiber both cause constipation. If he's responded well to GAPS, it may be too much fiber.

Another option, at least at home, would be to help him squat. http://www.squattypotty.com/5-proble...n-your-toilet/ This gives a lot of info about it- you do NOT have to buy that. Just put something in the bathroom so, when he sits down to poo, his feet are up in a squatting position. Some people use books, boxes, etc. Whatever works for you. This could really help him poo more easily.

Quote:
Enyhoo.. glad we've got the nurse on it. She feels like someone in my corner who will demand things of my pediatrician who might not know... and that's OK that he doesn't know, but that we're needing input; if it's a referral elsewhere, fine. But please get us in a direction moving forward.
That's really good. A healthcare professional who'll help you advocate for your child makes a HUGE difference!

Quote:
----- I also agree that most of the "normal" kiddos I know are also still battling potty problems now in K. Most of those have a reason you can pinpoint: are scared of potty, scared of public, etc. But at least that is a comfort that I'm not alone. I guess the special needs aspect just raises a bigger concern to all involved....
The special needs definitely makes it harder to address, but neurotypical kids can be dang stubborn about this problem. You're certainly not alone!

Potty issues suck, because even mild problems become a BIG PROBLEM. If your son had a speech regression, you might not worry about it as much. You might just warn his teachers that every few months he regresses, here's what you've done, etc. But the potty issue you can't take a "wait and see" approach to- he's going to destroy clothes, make huge messes that are really awful to clean up, it limits where you can take him and can cause problems at night, it's just not nice.
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#7 of 10 Old 11-09-2015, 06:43 AM
 
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Hello,

My daughter just turned 5 and she refuses to use the toilet. We've had success at different times but right now, we are in diapers. She toilet trained at around the 2 year mark because she wanted to. At the time she was learning to walk, was taking a bit of yogurt by mouth and saying a few words. She was severely traumatized by a doctor's visit and another round of genetic testing and hasn't been the same since.

She stopped walking, standing, speaking, toileting and eating. She still refuses to walk, toilet or eat. We are getting a G-tube within the next few weeks. To help with toileting, we threw away the old gear and picked up new stuff - potty/underwear/stool/toilet rings. It helped a little as she will sit on the toilet or potty most days.

Her super power is to hold everything until you take her off the toilet or she will go as you get it set up. Very frustrating. Recently she has developed quite a few kidney stones which is really painful. She no longer agrees to sit on the toilet for urine but I can work with that until we do a procedure to help them pass.

The pooping is another story. She prefers to use the toilet but will never tell me when she has to go. She has to eat twice as many calories as a regular kid so she poops a few times a day. I never know when that will be. I put her on the toilet after school but most days she won't use it. It's frustrating because I know that she knows what to do.

Like your son, my daughter doesn't seem to care if poo is in her pants. She appears to be immune to the smell, feel, presence. She will take her diaper off and throw it when it's dirty - no matter what is inside! We tape it on to her and she still gets it off. I feel your pain about getting poo out of the carpet. It's gross and only a steam cleaner works for me. I picked one up from Walmart that works pretty well.

I've noticed over the years that my daughter's refusal to do these basic things is tied up in a traumatic event. It may not seem bad to me but it certainly is to her. The kidney stones are brutal. The pain is so excruciating that we have to give her morphine. It makes sense that she doesn't want to use the toilet because it hurts in that area. Constipation is also a problem for her because she eats super concentrated food and doesn't get enough water in her diet. We give her restoralax daily to keep her regular (I buy the generic brand at walmart because it's cheaper). It's a stool softener that we adjust based on the consistency of her poop. It makes all the difference for her and the doctors tell me that it doesn't interfere with her bowels. You may want to give that a try from time to time - it works well for us. Also, I saw that Silly mentioned the squatty potty. I have to say, my husband loves that thing. I just bought a stool that creates the correct angle and he swears that it makes a huge difference.

The other thing I've noticed is that she will hang on to her primal areas of control when things change. She controls her eating/sleeping/toileting - there's nothing I can do about that. When she experiences a lot of change or a traumatic event (usually related to the doctors - we are undiagnosed so they do a lot of testing) she exercises her right to control her body more than ever. We've seen it with eating - she hasn't taken a bite of food in over 2 years and of course, the toileting is off and on. We've done a lot of therapy with all sorts of people and the best thing I've ever done is write a little book for her with pictures from her real life. I explain what she does well and use pictures to prove how brave and happy she is when she does the task that she is currently struggling with. I go into what went wrong and how it's okay to feel sad/afraid/nervous about the change and then I end it with something positive about her. She doesn't always respond or let me read it to her but she will look at it when I'm not paying attention. Sometimes it works but sometimes it takes a long time for change to happen. Just like therapy for us.

You said that your son has started kindergarten and this could be his way of controlling the situation. It sucks but it makes sense. Nobody likes it when they feel they don't get a say in what's happening around them. School is awesome but scary. Maybe a social story might help him get back on track? I think the Special Needs Teachers can create these for you.

I don't know if any of this helps you. I hope it all works out. If you have any advice that you can offer I'd love to hear it. This toileting ting is so hard. I feel like the more I push it the less she tries. Good luck!
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#8 of 10 Old 12-10-2015, 08:18 PM - Thread Starter
 
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**UPDATE***

Upon my pressuring and getting teacher + school nurse involved.. we found the correct words to say to the Pediatrician.
We had to say SOMETHING IS WRONG and we mean it! No more just talking about, something is wrong. And btw, even at the Peds appointment, he just shrugged everything off. Until he threw his hands up and finally said.. .well, I mean, we could take an Xray of his bowel. Let's just make sure everything is ok.

FINALLY.

And to find out -- insert mama guilt here -- his bowel is filled with constipated stones. And his bowel is stretched more than 2X normal size.

Chronic constipation is normal in kiddos, but my kiddo was never "constipated" more than 1-2 days. He was A-typical. He never held it 3-5days. We all overlooked this, apparently For Years, because we all chalked up his looseness to development and inability to be potty-trained. But apparently there is a physical condition underlying.

So now this can be put back in the Potty Learning forum, but this is a big deal for me because kiddos with developmental delays... mean it, all of us feel guilt. Even his speech teacher - why didn't we see this earlier? (sigh)

On the SPD note: at the same time was evaluated for Sensory within the school district. Once again not qualifying for OT help. Everyone says... we cannot even address sensory or anything else until the medical is fixed.

FIX could take up to a year. He has to get his bowel cleansed and shrunk back down to normal size. Will have a GI specialist visit in 6 month with another set of scans to see if he has permanent nerve damage (apparently that can happen). But mostly definitely with the size of his bowel now, when he says he can't feel it... is likely true. He's lost the nerve endings. Plus the bowel is so big, it takes 2-3 days to fill to capacity before his body would even want to expel. No wonder! He's been in a cycle of building poo rocks and diarrhea. And cannot feel it. And cannot feel when the leakage happens.

Maybe there is some sensory integration happening, and is present in other parts of him.. but won't know until the bowel gets shrunk.

Also just to note, the OT mentioned that these types of medical issues can impact all parts of his life. Maybe that when he poo gets fixed, his other sensory overloads might be fixed.
I am not a fan of this, since he's had way more sensory nuances way before what we think might be the onset of this constipation, so I still think the school's assessment that nothing sensory is up with the kiddo is an easy, forget about until later. Whatever.
I also know 3-4yr olds who have constipation and they are rocked by it, so maybe that is the case.

Still.. AN ANSWER! It's not lack of potty learning, it is legitimate that he Cannot feel.

Yay for an answer. Now off to laxative him like mad for 6 months and see if we can't get the bowel down to normal size. And in the interim, deal with 2-4 accidents a day. Which has been a bigger issue than anything. Because now the accidents are beyond crazy; and he's 6yo so there's other kids in class, and just the MESS that comes with laxatives. The school nurse has had to build an entire profile for him and give to all the other teachers so they are not panicky about accidents in Art class, for example. He is embarrassed and having social sadness. It's all just awful.

But with no laxatives = no cleansing.

Still... an answer, I suppose. My Ped is not the most positive man ever, said something horrible that he's known parents going through this having to home-school their kiddos. Well, thank you Mr. Negative. Way to support the situation.

Right now we're just working through it.

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#9 of 10 Old 12-10-2015, 08:24 PM - Thread Starter
 
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Just to note: one thing I've learned through this debacle is apparently you really need to poo, often. And if your kiddos aren't... even my kiddo would miss a day here and there, even two days sometimes... apparently that's enough to create rocks in the gut. Kids bowels can retract; Adults cannot. I've been telling my adult friends this too - the idea that your bowel can expand. It's kinda flooring to realize that and makes sense for a lot of adult bowel issues. I don't think Miralax/otherwise laxatives are the answer. I'm still opting for a GAPS-ish diet for our family, to keep us all healthy and "regular".

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#10 of 10 Old 12-12-2015, 01:12 PM
 
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Poor baby!!!! Oh my gosh -- I feel so bad for him. I'm sorry it took so long to get any real answers.
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