Today is beautiful. I am outside, enjoying the weather and yet, I’m fighting feelings of defeat. This morning we had our third visit with the psychologist who has recently begun working with C. We have been waiting several months to see this doctor, as is common with most of the pediatric specialists our kiddos need to see.
I know there are no quick fixes for what he is dealing with, and that this is a marathon and not a sprint, but I guess I let myself get my hopes up. I was under the impression that this new doctor would, not only be the one who would be able to help C with his behavioral issues that are connected to his gut issues, but also help with the other behavioral issues he deals that are connected to his ODD and anxiety. Unfortunately, this doctor only works with the mind/gut connection.
We had our first meeting with her last week. After filling her in on all that we were hoping to accomplish, she basically told us that she felt that we’d be better off seeing a different psychologist to focus on the ODD, anxiety and other issues before treating the gut issues. Though I’m terribly disappointed, I understand her point. If he is defiant and oppositional towards the suggested treatments, then we will be at a standstill. He must be cooperative for the therapies to work. However, she’s still willing to see us for a time and see how it goes.
For the second appointment, C met her for the first time but spent most of the one-hour session with his face buried in my lap or in a pillow on the couch, and then went out and sat in the hallway with my phone while I finished the appointment. Not really a rousing success. We did, however, come up with an initial plan.
First, C needs to wear underwear during the day and, second, practice sitting ‘properly’ three times a day. The underwear is a tough one simply due to habit. C hates being dirty in any way and yet hates bathing. We have tried having him wear regular underwear before. It becomes an issue though because he doesn’t feel the urge to go, then he leaks through the underwear into his clothing– especially when we are giving him stool softeners and laxatives. He is, understandably, hesitant to return to this situation. Despite that though, he has willingly gone along with this change. We’ve set the bathroom up with plenty of clean underwear for him and a special bin for his soiled clothing. The reward for telling us each time he notices that he needs to be cleaned up is a sticker on a chart and a reward after a certain number of stickers. For now, he is still allowed pullups at night. We are not ready to fight that battle yet.
Sitting properly means sitting up straight (rather than slouched over with his head on his knees) and using the ‘Squatty Potty’ Stool (rather than letting his feet hang). This sounds simple, and it is, in concept. But C has a hard time sitting up straight on the toilet, saying that it makes his legs hurt. With his sensory issues, this ‘hurt’ may simply be discomfort because he is not used to the position, or it could actually be pain. We don’t know and he can’t find a way to describe it other than it hurts. For now, the sitting position is our big hurdle. We have previously provided toilet seat covers and cushions to ease his discomfort, but he still won’t sit properly. We are even considering buying a new toilet seat just to see if the shape makes a difference. His anticipating that it will ‘hurt’ when he sits leads to anxiety which makes him tense; being tense is not conducive to our goal. So, between having to convince him to sit properly and his resisting, this stage may take a while to accomplish.
Meanwhile, we still don’t have definite answers to his lack of feeling urgency other than that his intestines are so stretched out that the nerves aren’t firing the proper messages, if at all. The goal of these therapies is to heal and shrink his gut back to normal, yet that won’t happen until he can have regular movements. Not being able to poop regularly causes things to back up and the gut to stretch and the cycle continues. I feel like we are in a holding pattern. We keep getting the same ineffective advice and remain in the same situation. At some point, something must change.
(I feel like I need to point out to various readers that yes, we’ve tried removing gluten from his diet. We limit sugar and dairy. We increased his fiber intake. We even tried essential oils. There are some situations that must be dealt with using modern medicine. This is one of those times.)
So, I am defeated today. I want to throw in the towel. I want to run away and not have to face these tough decisions anymore, but I won’t. I will fix myself a grownup beverage and sit in the sun on my deck. I will pretend for a short time that I’m somewhere free of worry. Then, I will step back into reality and try again. I will go to the next appointment with my head held high, knowing that we are doing everything in our power to help our child, and I will fight for something new to be tried.