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.
Wow, its been awhile. For the past two weeks, I have been away at Camp PALS -- the greatest place on earth. At this camp, tons of volunteers come together to have the best week of their life with individuals with Down Syndrome. As much as this changes my life and warms my heart, I always come away from it a little sadder than the previous year. I am always sad that it ends, because when entering camp -- there is no judgement. Everyone is friendly and accepting. It's a nice "check out" from the reality of the world that we live in today where everyone is judgmental, rude, and selfish. This isn't the only reason it makes it hard to leave, it hurts because I am happy 24/7 when I am there and I hate leaving the great friends I had made during camp. But in addition, I return home to see Sammy. As much as I missed him while I was gone -- it breaks my heart that he may never experience what I just returned from. Making friends, being accepted, and having a great time with amazing individuals.
Will Sammy ever have friends? Will he ever have the opportunity to go to a camp like this? Sammy can't go to these types of things because he is unable to dress himself and isn't toilet trained. Even if there were great opportunities for people with Autism like Camp PALS, his Autism would hold him back. How is that fair? He already deals with the painful differences and struggles everyday, but now he isn't entitled to make friends or go to camp like every other individual? It's not that I believe that people are prejudice and won't allow people with Autism to go to things like PALS because there are opportunities out there for those who are higher functioning. It's the fact that Autism is holding him back from some of the smallest things in life that we all take advantage of and enjoy.
I made amazing friends this week, had a great time, and will be forever changed positively because of PALS. Not only do I not know if Sammy will ever experience something like this, but I can't even express to him exactly what it was like in hopes that he will understand. But do I want him to understand? How would I know if I am making him sad or jealous of the opportunity I got to participate in?
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.