First “date” for the family-therapist dance
I’m honored today to introduce you to Aidan’s physical therapist. Karen has been with us since Aidan’s birth. She’s seen us through several orthopedic surgeries, supported him outside the school setting, and has put up with my, um, instense honesty.
Oftentimes, I am the first regular “service provider” a family comes in contact with when they first enter “disability world.” They may have just come home from the hospital after their child’s birth or after an illness or injury. Or maybe from a visit with their primary care provider (PCP) where concerns were expressed or a diagnosis declared. But, typically, they have just been informed or become aware that their child is struggling in some area of development and would benefit from pediatric physical therapy services. I may be the first to join in the weekly appointments for therapy or I may be part of a revolving door of therapists regularly entering that family’s home.
A family I have worked with for almost (gasp) 15 years calls these relationships “dating,” because you get introduced, develop some type of relationship that is hopefully beneficial, and you always have the option of “breaking up” when the relationship no longer works or is needed. I think of it more as being invited – invited into a family’s lives to begin to help them navigate the early stages of “early intervention.” And it’s tricky, because I may be invited, but I am not always wanted. Parents are often struggling with their situation and may feel upset, traumatized, or desperate. They may realize their child needs assistance, but they are often overwhelmed and in survival mode, struggling to get enough sleep or to meet the basic needs of their child for food or trying to juggle a toddler, a preschooler, and a new baby who has special needs. Every situation is different, yet I have a similar role to play with each family as a pediatric physical therapist.
As a pedi-PT, I use my knowledge of development, anatomy, physiology, neuroscience, research, clinical experience and more to problem-solve and assist each individual child to be as functional and independent as possible. My goal is to encourage them with my skills to actively participate in all the joys and activities of childhood that they are able. While each child and situation vary, and no two children with any type of description or diagnosis are exactly alike, we PT’s support and strengthen a child’s abilities while keeping in our view the barriers and challenges that may lie ahead for the child, and pre-emptively try to navigate through or around those barriers.
For example, clinical research and clinical experiences tell us that many children who have atypical muscle tone (think high tone/hypertonia or low tone/hypotonia) and delayed motor skills (not sitting or bearing weight through their legs after ~ 1 year) are at risk for hip dysplasia, a form of bony deformation that can cause hip joint malfunction and lifelong pain. Bones form as a child grows by the forces that are put upon them with crawling, standing, and walking. Malformation can occur when these forces are not typical. To a pedi-PT, this is a basic anatomy and physiology framework that we consider as we work with growing and developing children.
When we see children at risk for this scenario, we may recommend equipment or orthotics/braces to help get them into a supported standing or some other therapeutic exercises to prevent or minimize this from occurring. But to a parent, it may seem like we are just recommending expensive (and maybe not super family-friendly appearing) equipment that takes up space, may be cumbersome or overwhelming to use, and adds another activity to their already overloaded daily “gotta do” list.
So, our parent-PT relationship can be tenuous, and gets built on experiences, development of trust and respect, and prioritizing. I need to be able to communicate to a parent why this is important for their child, what are the risks and the benefits, and what this intervention will entail. I also need to listen – to the child and family regarding their concerns, their priorities, their ability to integrate this into their lives amongst the growing pile of “gotta dos” in their lives. And sometimes, I just need to be patient as they absorb and process the info. Finally, I need to be honest and communicate my therapy knowledge and expertise to benefit their child and their situation. We hope to come to a workable consensus, where my recommendations can be intertwined and integrated into their child’s and family’s situation in a way that is helpful and without disrupting their priorities.
It is a dance, a give-and-take. A relationship.
My almost 15-year-old friend, Aidan, always comes to mind when I think about recommending a piece of equipment to a family. Aidan came home from the hospital after a rocky start and with no diagnosis, just a new baby who needed physical therapy services along with speech/language therapy and occupational therapy. Aidan had low muscle tone, struggled to eat and breathe initially, and had the most beautiful big blue eyes in a head that seemed too large for his frail body. He has an amazing family (his mother, Heather, writes eloquently, honestly, and humorously) but they were new to this whole world of “child-with-special-health-needs-needing-intensive-early-intervention.” He loved the SLP best (she fed him food and sang songs), and the OT next-best (she had adaptive toys that he could make go). Me? From his perspective, I made him “work out” to strengthen his muscles so he could hold his head up, sit by himself, and eventually move to grab his own toys. Not as popular, despite attempts to make it as fun as possible.
As Aidan has grown and developed, slowly but surely, I have recommended several types of orthotics/bracing or equipment to help him along in his development journey and/or to prevent the development of a bony or muscle issue that he was at risk of developing. Heather, in a blunt but respectful way, is always a hard sell and I need to (appropriately) do my due-diligence in explaining my rationale behind the equipment or orthotic, what using it will be like as part of their lives, and what the work-to-benefit ratio is. Once, equipment was threatened to be thrown into the burn pile ( Aidan’s prone stander) and, at least once, equipment has given them joy as it gave Aidan independence (power chair, gait trainer). I have learned so much about “family-centered care” through their honest communication and the hard questions they ask, the activities they’ve politely said, “I hear what you are saying, but that’s just not going to happen.” It is a dance, a give-and-take, a relationship.
I am so thankful to have been a part of so many children and family’s lives throughout the years. While all my years of schooling (one of my patient’s calculated that I am in the 22nd grade!) have given me a solid and comprehensive knowledge base, it’s the experiences with each child and family that have taught me more, helped me to develop my skills as a communicator, teacher, encourager, clinician, and “date.”
Karen is a preschooler at heart, content to sing songs out of tune and blow bubbles with small friends. She is a board-certified clinical specialist in pediatric physical therapy. She enjoys juggling roles as a therapist, clinical instructor, educator, mentor and hesitant writer who shares intentional thoughts from the pediatric world at Scatter Joy.