Another bathroom issues thread--help please!

[terra-pip]

Hi,
My 7 yo ds is dxed as PDD-NOS/OCD/SPD.

We have been having struggles with BMs since the beginning of time. Basically he will not/can not have a BM without a Pull Up on. He sits on the toilet while wearing one and goes. It has been a very long struggle to get to the point where he is actually sitting down on the toilet (he used to stand and stim in the bathroom). Sitting down is a big deal around here.

Anyway we have gone through countless ways to get him out of these Pull Ups. He seems to be self inflicted constipated. It's not a normal constipation. We've given daily laxatives, tried an enema once, struggled with the drinking of the aloe vera juice etc. But the problem doesn't seem to be constipation as much because he "holds it". Right now he hasn't gone for a week and a half because we have taken the PUs away. We've done this before and he has seriously gone two weeks without a BM. That can't be healthy. But what is aggravating is we break down and buy them out of fear for his health and he immediately has a BM, a good, normal BM, right away.

What's also troubling (and I really don't understand the connection) is he "appears" more autistic during these periods of holding his bowels. The longer he goes without poop-ing the more stimmy, the more sensory sensitive, the more tantrums, the more running in aimless circles, basically the more everything. But if he has a good daily BM he really has very few autistic like struggles???

No doctor I have been able to have see my son has given us any helpful tips or insights into whether there is some medical thing that's getting overlooked?

And we have talked with our son about his "need" for a pullup and he only says "it's easier"...but I really don't understand. If he can feel the urge to go (and he does) He sits on the toilet without one during the day and begs for a pullup. And if he can sit on the toilet in a pullup and have a BM, why can't he sit on the toilet without one? Is it sensory? He has low muscle tone and that has been pointed to as a cause. But really how does a sensation of PullUp on the skin help with feeling the muscles needed to have a BM?

I really need my child out of these. We feel that everything just hinges on my oldest child's ability to get out of basically diapers...our sanity, stress levels, my son's health. This seems totally mental to us. Like he on purposely holds it (impressive willpower) until we are all, even my inlaws, beside ourselves with worry and exhaustion at the increase of autistic behaviours that we break down, buy a damn pull up so the child can poop and life can get back to a more sane level. I'm prepared to go for as long as it takes this time...I just don't want a sick kid from not having a BM in a month. Laxatives, enemas etc won't help us. He is holding it on purpose. Why? I just don't understand.

[Eyelet]

No advice yet, but we have the same exact issue with my DS (ASD diagnosis). He will NOT have a BM unless he's home and in a pull-up. We've tried everything from laxatives to rewarding him for sitting on the toilet, but he will hold it unless he's in a pull-up. Like your son he will hold it for an unimaginable amount of time, as well.

If it's any consolation, from talking to other autism parents, it seems to be a somewhat common problem. Another parent once advised me to put my DS on the toilet immediately when he's about to have a BM, and reward him with treats/special toys while he's staying on the toilet. It might be something to try with your DS, but unfortunately mine will just hold it and ends up having a huge tantrum until we let him off. We're now working with a toilet social story with limited success- he'll stay on the toilet for 3-5 minutes, but still won't 'go'.

I hope someone else chimes in with more advice.

[hadleys_mom]

My DD has low tone, NVLD, SPD, anxiety/OCD and is visually impaired. She did the exact same thing up until about 6 months ago. (She just turned 7 yesterday) Though she did not sit on the potty, instead she would stand in a private place. From what I understand, it is a sensory thing that is compounded by the low tone and neuro differences. Over the 4 years it took from learning to pee on the potty to being completely potty trained, we tried a lot of approaches but what worked was a low pressure approach. Her low tone makes it where she really can't sense that she needs to go, she just grows increasingly more uncomfortable (this still happens today). I would watched DD's body language and was got pretty good at telling when she had to go. Then she had to sit on the potty for a few minutes and actively try. But we let her know that she would be allowed to use a diaper if needed. If not, her anxiety went through the roof. What finally worked for us was having her wear a body suit. Through our OT, she started wearing Theratogs, a therapeutic body suit that helps with her low tone but we found when she had it on she would actually TELL me she had to go! But she was so use to having some positive pressure on her butt from the diaper that she still wasn't comfortable on the potty. So we bought a pair of bike shorts for her and cut out the crotch. It gave her pressure on her tummy, legs and hips. I think the 4th or 5th time she wore them, she didn't need the diaper and was able to poop on the potty. I, of course, cried and facebooked about it. Big hugs to you...it will come!

[kathteach]

Maybe you guys have already tried this but one of my books says to have him sit on the potty with the pull-up, but with a hole in the pullup so the poop goes in the toilet and then work from there. Sorry if I am frustrating you more by telling you something you already know or tried.

[terra-pip]

Thank you thank you!

I have wondered if it was sensory related and I have been told it was low tone but wasn't given any advice. I've heard of Theratogs and I'm going to talk to our OT about maybe getting some. Hadleys_mom-- were you able to get insurance to help you with the TheraTogs? I know things like that are pretty pricey.


I have thought about the cutting the hole in the PullUp...so funny we were just talking about trying it. Don't know if my ds will go for it, but I like that idea and the bike short idea. Going to try.

I'm just so glad that there are other moms with this issue...I was beginning to feel hopeless and depressed about this. These are ideas worth trying. A place to start. Thank you.

[hadleys_mom]

Our insurance did not cover the theratags and they cost us over $1000. We saw a drastic increase in stability right away with them on and after a few weeks even with them off she was more stable but she did seem to quickly level out and we then saw no additional benefit to them. She wore them for about 9 months. They did help calm/center/self regulate her at first but then they became a source of stress for both of us because they are not the quickest things to get on. A cheap possible alternative that won't help with low tone but will give the positive feed back is a lycra body suit, like what you'd wear for gymnastics.

Best of luck!

[KimPM]

Have you read this:
http://www.amazon.com/Toilet-Trainin...8060602&sr=8-1

Toilet Training for Individuals with Autism or Other Developmental Issues

[terra-pip]

no I haven't but thanks for the recommendation...by the way cutting the hole  in the pull up was a no go. He hated that. ;(

[beachcomber]

Who cleans him up when he does have a BM in his Pull-Up? Have you considered requiring him to clean himself up after his BMs in Pull Ups?

[ktgrok]

what about putting a chux pad over the toilet seat for him to sit on, so it kind of feels like the pull up?  Could the cold toilet seat be affecting him? Or, maybe he needs something to "push" against?  I actually kind of understand that....but I have sensory issues too :)  IN fact, I had to hold someone's hands while pooping for years as a child.  I needed to have hands to squeeze to provide a blance to the pushing sensation.

[ktgrok]

another thought. What about trying to get him to poop without the pull up, but while standing or squatting?  Take the toilet out of the equation while you get rid of the pull up?  Then introduce the toilet again only after he is comfortable without the pull up.

[NataliaI]

I know this is very frustrating, but I urge you to reconsider and allow him to have bms in the pull up as long as necessary.  Holding the stool is extremely unhealthy and can lead to serious long-term problems.  Pooping in a pull up is not harmful to him as long as it is removed promptly.

Why is his behavior worse w/o BMs?  Think about what the stool is.  It is the body's waste and is meant to be eliminated.  When he does not have a BM, it sits in his body literally poisoning him.

Without regular BMs, the colon will become stretched and incapable of naturally pushing out the stool.  It can take months of intervention guided by a pediatrician and powerful colon cleansers to correct this.

I hope that you can find support for yourself as you work through this issue.

[beachcomber]

Regarding behavior worsening when the child needs to have a BM, it makes total sense to me. My DD had this issue for about a year while she was learning to get comfortable pooping on the toilet on her own. Like a PP, she needed to be held (hugged) while she pooped for a long time. Think about how you feel when constipated and then multiply that by 1000. That's what a kid feels - then add sensitivities and ASD related communication, behavior and so on .. and well, it makes sense that being really constipated will throw a child's equilibrium right off balance. It's hard enough for an ASD kid to find balance as it is!