bambinod said:
SpAzpieSweeTot said:In answer to your question, not all, maybe not even most, but for a lot of us, yes, If for no other reason than our other muscles are a pain in the butt, and I'd venture to say that incontinence, and the management of it, even if not with diapers, is bigger than a lot of us want known. Gee, how do I explain this?
CP, a birth brain injury, is a bit like a birthmark. Not everyone has it, but everyone who does, has it differently. Some skeletal muscles are stiff, some are weak, and some are typical. (Scoffs. Find me one typical skeletal muscle on my body.) For the majority, orthopedic surgery is a requirement. I remember around 5, having both my legs pretty pink casted, with a big bar between them, for my medial hamstrings and adductors surgery. My legs looked like such an A, I couldn't fit through the bathroom door. That was my first experience with a cloth diaper. It was there for me, without me ever being threatened with it. What a concept!
If not for the brain my bladder and bowels are attached to, they'd be fine, but a lot of the time, because the skeletal muscles spasm, those spastic skeletal muscles cause the bladder and bowels to be sort of discordant, just because they're so close to the skeletal muscles. This can mean sitting there wishing to go, and not being able, because the muscles don't wanna open, or going all over oneself.
Depending on the muscles effected, the type of CP, (Sometimes several types mix.) and the severity level, training just isn't pheasable. Some of us can't talk. Gotta have breath control, and control of the tongue, cheeks, lips, and face in general, for that. Not having these makes telling someone you need a bathroom difficult.
I had a severe athetoid type friend who can't walk, sit without extensive support, eat certain foods without choking or aspirating, talk, or feed himself, among other things. We had quickfire phrases, and the alphabet, for anything that wasn't pre written, on a paper hung on the wall. He'd look at it, we'd go through it, and he'd raise his eyebrows for yes and shake his head for no. I always wondered how, more often than not, he had someone put him on his potty chair before his dam broke. Spare undies were kept in his bag. I wondered, as bad as bladder spasms hurt, as dependent as he is, wouldn't diapering him be kinder, no one insisting they be used, no one shaming when they were?
My sister can talk your ear off, but moving her to the massively supportive, strappy, heavy potty chair, while she tried to concentrate on holding her muscles closed, resulted in wet floors, because just moving her made it happen. Needless to say, we stopped fighting the tide. What can also happen is that caretakers can say, "Yeah, I can lift him/her now, he/she is 6. How am I to take him/her potty at 17, when he/she's my height and weight. What are we to do in public, drag his/her medical monsterosity potty chair with us?! (Not a typical bedside comode either, lateral thoracic supports, harness, seatbelt, thigh supports, knee separator block, footrests, the whole bit.)
For some of us from wheelchair to toilet takes 15 minutes. Just the transfer. Not From the need to go. Some people find toilet transfers unsafe and terrifying.
A friend of mine got very sad and frustrated at camp as a kid, because his councilor had no idea how to toilet him and he wet himself daily, until a lady who knew him from school taught the councilor how. Another friend would just be living life normally, suddenly burst into tears, and say she needed to use the restroom. Y'know they took her, then punished her for crying?! It took them practically forf**kingever to think, "Hey, maybe she's having bladder spasms, and she's scared to say so because we keep punishing what turned out to be pain, or maybe she doesn't wanna anger her source of help! Gosh we're stupid!"
I had one uneducated aide in kindergarten or first grade, who used to ask why I cut off my urine flow. What I would've said at the time, because, "bladder spasm," wasn't yet in my vocabulary, "I didn't; my body did," barely made sense to me at that age, so I said nothing. Any time I leaked, I either said nothing and convenced Aunt Jan it was some other fluid, or the few times I remember her catching me in the act, she yelled at me. Convincing her it was another fluid actually f**king worked, even if it resulted in pediatrician's visits. Actually, it worked for a while on Brenda, wicked b**ch of the south, too. How stupid you gotta be. . .?! Successfully impressing that wetting and messing oneself is wrong is entirely possible, but if it genuinely can't be helped, it doesn't stop, unless the person does unhealthy things to try to stop it, like only drinking at certain times, eating enough to plug himself or herself up, or not eating, so there's less to pass. It just makes a person better at lying about it. I remember a visit to Dr. Sandy, my pediatric psychologist, I had to pee in the middle of, and Aunt Jan b**ched about having to take me! Then, she got cancer, and left a trail of pee from where she'd been, to the toilet. I closed my door and laughed my ass off at her. See what happens?! Mwahahaha! My bowels spasm too, but not as much as my bladder. Defiantly enough to make, "Don't get off the toilet immediately after peeing," a rule.
I use a regular toilet, and will be darned if I'm diapered of anyone else's volition, but I fell in mid toilet transfer Tuesday night, had to belly crawl from the bathroom to my carpeted bedroom, because carpet creates enough friction underfoot to get back in my chair, and had a great deal of trouble getting into bed. If I hadn't overworked my knees, I wouldn't have had so much trouble. I didn't go pee until about 5 a.m. because the urge finally left me the hell alone, but there were times I thought I'd pee myself right there in my bedroom floor.
The ability to walk with CP doesn't save some people either. Sometimes moving makes the urgency worse. Can you imagine walking? Some have pelvic floor muscle weakness, so there're times when there's no urgency, just a bit of a fluttery feeling before, "dammit," if that. Some leak when we're excited, laughing, scared, or just move the wrong way.
Sometimes CP caries cognitive deficits, so some who would be otherwise capable, just aren't there yet. Also, lazy eye, trouble eye tracking, (Botox was first used on someone severely effected, to help with this.) and not being able to hold one's breath as long as non-palsied people, among other things, aren't unheard of.
