ASD 1 constant pooping accidents still at 11 years old
I am at my wits end. Quite frankly, paralyzed in fear for our son's future over his inability to not just manage his hygiene, but even care. He's 11 and has a "mild" ASD 1 diagnosis. Most people and sometimes even my wife and I included, have a hard time believing he even is on the spectrum, except for a few serious social norms he struggles with. And unfortunately those struggles eventually get discovered by his peers, makes him uncomfortable to be around and he loses friendships. He really has none. :(
The biggest societal norm he struggles with is the near daily pooping accidents (at times). We've got access and have used specialists at the #1 Children's Hospital in the country. And we've gone through their encopresis program with very sporadic success. (Scheduled and timed sits with rewards, laxative protocols, dietary adjustments, X-rays and lab work to rule out other issues) He also has massive ADHD and is on Ritalin, which definitely helps some. He sees a therapist regularly and has a great team of support behind him through his IEP.
Yet at 11 years old he's still pooping his pants really often, typically near bedtime. It's often in the presence of screens (TV or tablet). It can occur 15 minutes after his post dinner scheduled sit where he already did void. He can have days where he voids several times and still has the problem.
But what kills us the most is he doesn't seem to care at all. Which is strange because he is a deeply emotional and competitive child about most things. He wants to be successful. He has big dreams for his life and certainly the intelligence to achieve many of his dreams. But with the pooping accidents, he just doesn't care. He will sit in his own feces and carry on like there's no problem until someone smells it and tells him to go clean himself up. Which he does, but shows no signs that he feels there is a problem . There's no urgency or shame in being covered in poop, even though we tell him a million times in a million different ways from soft to stern that immediate clean up is always going to be the expectation wherever he is in life from school to socially to eventually the work environment.
I'm a broken man over all of this. I feel like a failure. I've changed jobs to be home more often for him. I've pursued and invested heavily in the very best specialists the country has to offer. My wife has been a stay at home mom his whole life due to the need to constantly be available to take him to various doctors and therapists and be there for him basically every moment he's not in school. I do everything in the world to make sure I'm healthy physically and mentally so I'm never off my game for him. Obsessed with the gym, diet and proper sleep because I'm 50 and feel like I'm going to need to be physically and mentally capable of working until I'm 90 because I'll always need to support him like he's a small child. I just don't see independence in his future and the toileting hygiene is probably the biggest thing that will hold him back. Even worse, my head goes to very dark places where I worry that he will lose his will to live if he doesn't have friends, a job he can be proud of etc, especially when my wife and I are gone someday. And I feel like I'm powerless to protect him from such a painful future on the horizon with the current trajectory.
I broke last night and lost it on him (screamed by head off) for "not trying" and "not caring". I simply snapped. He went to sleep in tears. It was horrible . I am up alone at the crack of dawn wanting to puke I'm so disgusted with myself.
I don't know what I'm looking for in this post. I just want the problem to be over for him and to be able to breathe a rare sigh of relief that progress is being made. Perhaps the hardest part is occasionally he doesn't have the issue for a month or two and then he just falls right back into a cycle of daily accidents. It's such a painful situation for all of us including his normally developing, younger sibling.
Ahhhhjhhhh!!!!!!