My mom, Sam's home therapist, and I discussed Sammy's toilet training plan today. As always, it ends up in a debate. Personally, I think that after 15 years of sitting in your own bowels or urine, it really doesn't make a difference now. He's used to it and he doesn't think its uncomfortable -- and even if he did, my mom or I will come along and change him. Even though this is obviously a valued skill for independence, can it achieved if Sammy has no desire? Unbuttoning and pulling pants down are very big tasks for him because of his motor skill difficulties -- so, why work if someone will do it for him? Not only this, does he even make the connection that going to the bathroom in the toilet is appropriate? If I did something for 15 years every single day, I wouldn't really think changing that routine would make much sense.
Sammy has been involved in toilet training plans since he was two years old. We've changed the plan a million times, taken breaks, tried new approaches, and 15 years later... he is still in a diaper. Half of the time, he holds his pee as long as he can and when he finally goes, it overfills and soaks a couch, bed, his clothes, etc. Making a huge mess for my mom to clean up. While having this debate today, Sammy walked in and his pants were soaked, he had peed all over the couch. This is now a 3 day clean up: washing his clothes, washing the couch fabric, drying out the couch cushion, etc. All of this added to the three accidents he had over night that my mom has not had a chance to wash because she still has an overload of sheets from other accidents.
It's not about whether or not that this skill should be taught - its about whether or not Sammy will ever get it. And if he didn't, how much time have we lost by trying to teach him a skill that he will might never accomplish? I know that being toilet trained is a very important skill for everyone, but I want Sammy to achieve his very best. Is focusing on toilet training holding him back? How fair is this for my mom? She spends more than 3/4 of her time changing him and cleaning up accidents.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.