TransNate said:
Hi all! I would really like some advice. I have been bladder incontinent for years due to my autism, and have recently developed fecal incontinence as well. However, I am in a special needs program at my college, which puts me in one classroom for most of my classes. The aides are used to helping me clean urine, but I am alwqys embarrassed to ask for help when i mess my diaper in class. Should I continue to hide it until I am confronted? If not, what should I do?
No matter how embarassing it may seem to ask for help ,the consequences of not asking are infinately greater ,and unless your loaded up on nullo any large mess will announce itself to anyone with a nose.
I was born with two rare diseases ,and lived my life blissfully unaware of them until something in the enviroment triggered them ,i went from the carer to the cared for ,it was mortifying in the beginning, i will not sugar coat it ,however how we conduct ourselves ,not as children who hide shit and our parents have to figure it out and sort it and us out matters ,but as adults ourselves with a disability we can not default to our childish roots ,honestly your caregivers will have more respect for you asking for help when needed , than you trying to hide it until they figure it out ,and wonder if we/you know right from wrong ? Trust me the embarrassment will be them treating you like a child who needs to be taught ,instead of like an adult with a need that requires assistance ,nothing more basic as an adult asking for help appropriately .
As you get older your needs and abilities will change ,and chances are great you will have many carers come through your life ,establishing a rapport and "ground rules" with your aides now will greatly enhance the quality of your life in future years .
Even with the most intelligent,perceptive,compassionate aides on earth they cant read your mind( they can come close by being around you for long enough to anticipate what you may need and when,but that is not always a good thing ,it shifts the dynamics of power in the relationship to a almost parent/child and unless your completly into an AB lifestyle ,and humiliation, it will make your life miserable ) your care people need to respect you as an adult and there employer. Yes they should feel welcome in your home ,but also respect the fact that it is your home and your stuff ,and not that they can make your decisions without asking .Now is the time to work on establishing these healthy adult behaviours and testing them out in school , because they right now have to answer to someone else for your care needs ,but eventually it will be people that you employ in your home, i know tons of people with disabilities and some of them realy wished they had of known healthy "boundaries" and how to ask for help ,respect yourself and your care people by being adult and asking for help when and how you need it, be independent in every way you can be, but don't be afraid to ask for help how and when you do need it ,you didnt choose this life it chose you,Your care aides did choose this line of work (or they are hopelessly lazy and stupid and can't get another type of work ,unfortunately I am not kidding in anyway ,we have both types really good & really bad , you will become expert at spotting both ).
When you reach out people will reach back , with respect,understanding and the care assistance you need ,embarrassment can be managed and overcome ,your life and health demand you start now ,the sooner you start the sooner its done,the better you'll feel ,and the easier it will get and the better you will live .
I am a high function quad (or a guy so lazy he brings a comfortable chair everywhere he goes and won't get up! )I started my personal journey into being a card carrying member of the disabled community in 2003 .
If I can help you in anyway or answer anything do not be afraid to ask ,if I don't know my little brother will he's on the spectrum (he's not my brother by birth we met and adopted each other as adults)we inspire the best in other he lives in Illinois ,well I am a "left coaster" Pennsylvania (get it i am on wheels, so i coast)Now you know why I am not a stand up comic ,my jokes are lame and i cant stand up, but i have a kind heart !.
Welcome to the communnity!
Sent from my SM-T810 using Tapatalk