We will NEVER forget the day that Dr. Pakula, Tommy's neurodevelopmental pediatrician looked at us over her glamorous reading glasses to tell us, "This is the hardest group to potty-train. You may need professional help."
Almost 4 years later, last week, I had a moment. Katie, Tommy's ABA therapist was here, and he RAN into the bathroom (with no prompting), pulled down his pants, pooped, SORT of wiped, then washed his hands (with some prompting he didn't flood the bathroom or drink sink water and then spit it into the toilet), and ran out. We looked at each other, smiled and just said, "Wow...." With a tear in my eye, I told her, "It's been a long haul," and she knew exactly what I meant.
It's one of those dirtly little secrets about autism that nobody likes to talk about, The Poop Secrets!! According to the National Research Council surveys, toileting issues and behaviors, including stuffing toilets with paper or items, playing in toilets, flushing constantly to the frustration of all, and smearing feces make toilet training more difficult and intensive for children with autism. I would add to this list the fact that motor control and hyperactivity prevent some children with autism from wanting to sit still long enough to "get the job done"....and challenges with sequencing steps of behavior require picture instruction and carefully planned reward systems.
2 years ago, Kessler watched me have an out-of-body experience with the poop wars...we had been briefly discussing Tommy, who had run over to jump on the trampoline....within minutes, he was COVERED, the trampoline was COVERED, he was naked, and as happy as a clam, jumping jubilantly covered in his own very interesting crap. I lost it....I screamed at the top of my lungs, NO....NEVER, NEVER, NEVER TOUCH POOP....POOP IN THE POOOOOTTTTYYY!!" and then spanked his bare, poop-covered butt. He then cried and threw himself on me, so we were both covered in poop...him crying, me crying, and the therapist staring at us wondering if this job was really going to be worth it or not.
I felt myself leave my body and float up over the trampoline, which was brown polka-dotted by then, I saw my crying, brown, polka-dotted child, and my own brown polka-dotted self, and I wallowed in self-pity and frustration and Yes, Brown Polka-dotted POOP despair, that's right.
We read all the books, we got advice from everyone, we entered him in the Marcus Institute because Dr. Pakula said they were excellent at getting "these kids potty-trained..." NOTHING worked....
We prayed for grace and developed a level of patience that only that guy Job from the Bible could attest to. We timed our outings carefully and tried to control our anxiety about what might happen with pooping in other places. We did our very best to keep our dirty little secret to ourselves.
We would spend HOURS in the bathroom with Tommy, KNOWING he had to poop, and he would sit there happy as a clam watching DVDs...and then after 2 hours, we would give up, and he would run outside and crap in his pants in a corner of the yard while we cried in desperation and exhaustion. We learned to "Fling Poo" in the woods with leaves, through the air, we flung poo, and we wept.
Finally one Christmas, I said, "This is it, I can't take it anymore, I know it's the holidays, but he is NOT LEAVING THE BATHROOM UNTIL HE POOPS IN THE TOILET." My family was concerned, but I was determined. This is baby bootcamp, I told them, and this Christmas, by God, IT'S HIM OR IT'S ME. I set up camping gear in the bathroom, snacks, sleeping bags, and books. We did not leave for 5 hours...he clearly needed to poop, but.....and then finally, with me holding him on the toilet, HE POOPED IN THE TOILET. I celebrated, Mark celebrated, and my family decided we out of our damned minds, and you know what? At that point, we pretty much were. Well, that Christmas battle wasn't the end of the POOP WARS, but at least it was the beginning of the end, and just to let you know? Camping out in the bathroom and living there until they poop DOES get the job done.
Dr. Pakula's comment, I had thought, was RIDICULOUS. What do you MEAN this is the hardest group to potty-train, that we might need 'PROFESSIONAL' help...(which ended up being for him AND us by the time it was done).... I thought, she doesn't know me...I can do ANYTHING!!!
Well, she was right - it was unbelievably hard, and it took the strength of a lion...so now you know a little dirty brown secret about autism.
But don't tell anyone else, ok?
