** Thanks for all your support so far. The saga continues here. I am resisting the urge to edit these posts and am just publishing them as is, from back in May when I wrote them. I am not sure why, but that seems like the right thing to do.
This is the second part of the story started in the post The Story That Needs to Be Told (Part 1) Let's start at the very beginning.
The hub of the problem
All through the summer of 2005, when Scott was 4 and Jane was 1, Matt and I tried to figure out what was going on with Scott. The Parenting Consultant kept telling us that she didn't think anything was truly wrong with him, that he was "one of the 10% of kids who are just harder to parent". We knew he was more difficult, that everything was an issue for him. But he still needed to learn how to poop. And the stress, frustration and anxiety at home were unbearable. It wasn't right.
Matt came up with the analogy that there were all these symptoms, stuff that Scott did differently, as spokes on a wheel. There must be a central point from which all these seemingly unrelated things stemmed. What was the hub, the origin of all these little things? Was it Autism, or more specifically Asbergers? How about ADHD? He had parts (symptoms) of both of these disorders, but didn't really fit into either one. Maybe he had a mental disorder like depression or bipolar. Were we neurotic parents assigning a problem when there wasn't one? We knew he had a certain temperament. He was sensitive, persistent, perceptive, and smart. Was this actually a problem?
As Jane got older we noticed that she was very different. The suggestions in parenting books worked on her. She exhibited normal toddler behavior. We could distract her and move past things. With Scott it was impossible to get over something that he didn't like. She could following along to "Head Shoulders Knees and Toes" and tell a joke at less than 2, while Scott couldn't do those things at 4. Was she more adaptable because she was a girl? Because she was the second child? Or was it that we were the same parents, doing a pretty good job, but our children were two completely different people with their own unique needs?
One of my friends mentioned the book, The Out of Sync Child. I dismissed the recommendation figuring that the Parenting Consultant would surely understand if he had some obscure Sensory Integration Disorder. Didn't all kids have sensitivities that they outgrew as they got older? Besides that, one of my good friends, an OT, had already said that he probably avoided pooping because he didn't like the way it felt or smelled. So what? He still needed to do it. What kind of parents were we if we couldn't make him do a simple, necessary, bodily function?
The Parenting Consultant suggested we do potty sits to get Scott used to at least being in the bathroom. The idea was that he wouldn't be able to hold it in and when he did go he'd realize it didn't hurt. The phobia would go away! He'd be cured! We dutifully followed through (his problem wasn't going to be the result of our lack of resolve). We set a timer and made him sit on the toilet 3 times a day for 5 minutes at a time. It was sheer torture. He would scream at the top of his lungs. Stand up and try to run out of the bathroom. Hold his legs out straight in a pike position. Tears streaming down his face he would count the seconds away. Matt pointed out that this wasn't working for anyone. I thought I just had to see it through, like Ferberizing, or some kind of horrific training exercise. Fortunately, we stopped that activity when we saw how much stress it put everyone through. The Parenting Consultant decided that we were weak.
A chance conversation with the nurse at the pediatrician's office led us to another GI at CHOP. He also concluded that Scott did not have a physical problem that was preventing him from being able to poop. We mentioned his sensory issues and the doctor suggested we meet with a psychologist. We made the first appointment we could get, for 2 months later. Meanwhile, we silently changed him every night, regularly at 10 pm, 2 hours after he had been asleep.
Scott started his second year of preschool. Within the first few weeks we noticed that he wasn't talking about school the way he had the year before. He didn't want to go. He told us about how he got in trouble at school and had to sit out during recess. When I asked the teacher, she said, "I'm so glad you contacted me. He is having a lot of trouble keeping it together, following the rules, getting along with his friends. He is too rough and in the kids' faces. We can't manage his behavior and the kids don't want to play with him." Great. Why hadn't she told us? He was anxious, unhappy, quiet. He started spinning around at home and chewing his clothes. Actually chewing all sorts of inedible things. He was way out of control, grabbing things from Jane and having crying fits and tantrums. He said his teachers didn't like him and that he wished he was dead. Was this all related to the inability to poop? Which came first, the problem with pooping or the anxiety?
Wait, I had read about those behaviors (spinning and chewing) in that book, The Out of Sync Child. Maybe there was some truth to that crazy disorder. We arranged for a screening with Early Intervention to see if he was eligible for any help. His teachers alluded that they needed a person to shadow Scott while he was at school. He was that disruptive. We couldn't afford to pay someone $50 per hour to follow him around. We started looking at other preschools so that we would have options when his current school kicked him out or we chose to move him.
Then we had the meeting with the psychologist at CHOP, Dr. Chris. You know how you come across people in your life that you just know are going to make a difference? We had a lot riding on that appointment and she did not disappoint us. She told us to rub Scott's back while we were talking to him and see how he'd calm down. She was all over the idea that he had Sensory Processing Disorder and recommended we seek help from the IU, a private OT, and continue to see her. She reassured us that Scott was going to be OK and that we were alright. She explained to Scott why it was so important to be able to poop. She will forever be one of the best people we stumbled across. Maybe we didn't know all that at the first meeting, but by the time we were seeing her for our last meeting, 6 months later, we knew she was the person that we had needed all along.
Coming next, Part 3 How all the pieces finally came together