I will start this post by admitting that of any of my blog posts, this is the one I hope finds its way into the hands of people and students (health professionals, educators, etc.) who work with parents caring for kids with disabilities.
In yesterday’s post I introduced readers to my inner, fiercely protective, mother bear who I refer to as Fang. Over the years there have been many situations where Fang has spent meetings, ER visits, hospital admissions, and so on, pacing her cage and snarling at the bars. She wasn’t allowed out of her cage, but boy did she want that.
During this most recent visit to the hospital – from ER, through the ICU, to discharge, Fang remained sleeping blissfully in her cage. I don’t think she even twitched.
For those of us raising a complicated kid there is a sense that the “system” is a callous, convoluted, and insensitive place. As a result a great deal of our time and energy can be consumed by advocating to people and agencies that don’t seem to hear, or appreciate, our concerns or our child’s needs. As a result, it can often feel like Fang is rattling at her cage demanding a voice in a world that struggles to hear our voices. There are times that I know I have found keeping her leashed a daunting challenge.
But yet Fang remained sleeping soundly during this most recent hospital admission and think it might be useful to explore why.
- My knowledge and experience as Matthew’s mother was respected.
From the minute Matthew and I crossed the threshold of our regional children’s hospital the health professionals involved actively sought my input. My experience as Matthew’s mother and the knowledge I had gained over the years about Matthew’s medical issues was respected and actively integrated into the team’s conversations. I was included in team rounds. I was not seen as simply “mom”, but rather viewed as an expert and team member of equal standing when considering the care and medical management of Matthew. I was treated with respect, but also with compassion during the more difficult moments of the admission. In other words, the patriarchal medical model had been tossed out the window and replaced with something more empathetic and inclusive.
Research demonstrates that in the care of complex children including the parent as an equal and valued team member is crucial. Unfortunately some agencies and institutions have yet to “get the memo”. Such encounters are often challenging.
- The team respected my personal limits and understood the ongoing challenges of providing extreme care.
Over the years I have had some experiences where professionals have overwhelmed me with expectations surrounding Matthew’s care needs without appreciating the sustainability of maintaining that level of care. Their expectations were unrealistic. Health care providers sometimes have forgotten that parents do not leave at the end of a 12-hour shift and are not capable of caring 24/7 indefinitely – and that if they try it usually doesn’t end well. I have learned over the years that I need to be very clear about my personal boundaries while Matthew is in hospital, particularly regarding self-care. Simply put, while Matthew is in hospital, I need to sleep and eat. The ICU team fully supported my need to periodically leave Matthew to engage in self-care. The team also understood that upon leaving the hospital I would continue to provide extreme care and so leaving exhausted was not appropriate.
- The team appreciated Matthew as a person rather than thinking of him as a diagnosis.
It often seems that many situations (medical, educational) view Matthew as his list of diagnoses. In acute medical situations I am okay with that. There are moments that medical shorthand allows the team to isolate key issues and to make rapid decisions. That is good and important! However, what I love about this particular children’s hospital is that they view Matthew as a person, rather than a diagnosis, and seem genuinely interested in learning about him outside of his list of medical issues. There are other situations that could learn from this approach.
- The team was honest about their limits of understanding.
During this admission there were more than a few unknowns and the team was honest about the gaps in their knowledge. While it can be frustrating to be left with unanswered questions, I also find it refreshing when health care providers are honest about issues that confound them. I often struggle to understand what might be happening with my complicated kid. It is nice to know that I am not alone in my confusion.
I will note that as a parent I also have responsibilities for creating and nurturing the sort of positive working relationships that keep Fang sleeping. But, I think that might be another post.