How all the pieces finally came together
It all started to make sense. Scott really did have a disorder. We had him evaluated by an OT (Occupational Therapist) and she (another amazing person who came into our world) found all kinds of sensory related problems that he had. We knew about his obvious light, sound, and texture sensitivities but we learned about other sensory related problems stemming from difficulties with vestibular and proprioception and modulation of activity. Was it possible that he wasn't just defying us, being contrary on purpose, but that there was a reason for his behavior?
He experienced the world differently. It was overwhelming and overstimulating in many ways (bright lights, loud and distracting sounds, scratchy tags in clothing and paper napkins) and he couldn't get the information he needed in other ways (muscle input and spinning). We learned about how to calm him down and why he was so physically rough. Why he couldn't ride a bike and hop on one foot. Why elevators scared him. Why he so desperately needed to be in control because he couldn't control how his body was reacting to all the stimuli.
It all did relate to the pooping problem. He couldn't organize his body right to relax because of the fear of the pain he had before. The mind body connection. A phobia as real as they come. Like how you freeze when standing in front of a crowd to speak. Or you look down at the water from a high dive and can't make yourself go over the edge. Once he was asleep and completely relaxed, his body could let nature take its course and he could avoid the whole unpleasant business.
From the initial IU screening, Scott got evaluated and then received a formal IEP that included OT and an itinerant teacher. It was all positive, steps towards a solution, but it took a while to really believe in it. The proof was in the affect that OT was having on him and ultimately how we completely changed our focus. From thinking that we were the problem in how we were manging Scott to looking at him as a complex person who needed our help. Working with him instead of against him.
I was busy shuttling him around and reading about SPD. My mom watched Jane while I was out and about. I met with Scott's teachers frequently and decided to keep him at his school and avoid any more changes in his life. We understood Scott better and enjoyed his company more. We realized that he had amazing strengths and that his issues could be addressed. We had had a falling out with the Parenting Consultant and even my mother didn't understand what was going on with Scott. She still believed that we weren't trying hard enough, that our priorities were not right. We learned to trust ourselves and that most people, including friends and family, may never get it.
And he was still pooping in his sleep.
We knew we needed him to poop while he was awake in order to prove that it didn't hurt anymore and also so that he would become desensitized to the unpleasant part. Retrain his body to do what it should have been able to do naturally.
At the beginning of 2006, when Scott was not yet 5 years old, we did what we refer to as The Intervention. We loaded him up on medicine (Kondremuel and Glycolax) and forced him to poop. How did we finally get this to happen? Dr. Chris showed us how to hold him in a way that prevented him from being able to stop himself from pooping. It was a struggle. He screamed and cried and fought. Matt had to really hold him tight, I wasn't strong enough in the beginning. The first time he actually went, we were all in shock. He used to say, "I don't have to go", and then he'd say "I'm pooping 1000" (meaning a lot). There was relief and then realization, "I wasn't holding it in, Mom. I just didn't know how to let it out." Right. It's all in how you look at it.
From then on, it was a gradual transition from him being able to poop without us holding him to doing it in the bathroom (not on the toilet). To realizing that he could go even if he was on the toilet and still had on a pull-up. To, finally, him doing it alone. Baby steps along the way. Just enough for him to handle and feel successful without getting overwhelmed. It wasn't easy and it wasn't smooth, but he made progress.
We created a football game and bribed him with not being able to watch sports until after he went. We used his fabulous understanding of numbers to quantify everything and put it in terms he understood. Matt took him to a Flyers game (a huge feat to get tickets because they were actually good that year) because we were so proud of him. By the time he turned five he went to the bathroom all by himself only calling us in to help him wipe.
That was over a year and a half ago. We've had a few rough patches along the way. Times when he's been out of his routine (like vacation) or overstimulated (like a Phillies game). Once or twice where we've cut back too quickly on the medicine. But the bumps are small compared to what we had been through. And the recovery goes faster each time.
Solving this part of the puzzle has helped him to get his body back into control and has lowered his anxiety. By doing that he could then work on other issues. It is all connected through the hub, each spoke needing to fit into place in order for the wheel to function properly.
Coming next - the last (thank goodness!) installment, Part 4 There's a lesson in all of this