Having a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, “You don’t know what you don’t know.” But, luckily at my child’s care center, and across the ImproveCareNow Network in which our care center is a participating member, guidance is available to parents and guidance is also sought from parents.
As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much – how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? – and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.
Parents as partners and teachers is important to a child’s medical team. Parental guidance is a must when communicating a child’s flare pattern as it is as unique as are our children. My daughter’s care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes. It cannot be “family-centered” care without the family participating as partners in a child’s care. Doctors cannot provide the best care for IBD kids without parental guidance.
As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor’s visit, “Doctors are like detectives, and we have to give them the clues to help them solve the mystery.” Teaching our children how to communicate with doctors is a necessity. With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.
Even though my daughter is only a tween, her transition to being able to care for herself must begin now. While I want to be by her side through her IBD journey forever, the reality is I cannot do that. So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care. It is just this type of guidance that I need to receive from them to do this right.
ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago. Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible. Across the ICN Network, parental guidance is not only needed, it is valued. The ICN Parent Working Group (PWG) is proof of that – parents from ICN centers are coming together to guide one another and the ICN Network.
When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why? Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey. It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of “parental guidance”, our children will not live as well as they should with IBD. So not only is parental guidance important, I believe it is required.