I first met Sarah when I was a brand new OT. Despite having grown up with a sister who had significant physical disabilities, I will admit that I was overwhelmed when I met her for the first time. Severely impacted by a very rare and progressive neurological condition, Sarah was completely dependent for all movement and positioning, was nonverbal, and had already long outlived the very short life expectancy her doctors had set for her when she was diagnosed.
I am a school-based OT, and there was a stark contrast between the hustle and bustle of my usual primary school setting and Sarah’s home when I arrived there for our weekly sessions. It was so quiet and at first, I felt awkward trying to chat with Sarah while I stretched her, positioned her, transferred her, and applied all of her orthotics.
Gradually though, I began feeling a warmth and closeness with Sarah – her strength and spirit shining through despite her limitations and silence. Her mom and I also began a very comfortable friendship. She shares stories about Sarah as a baby and toddler before she was diagnosed and I get a little glimpse into who she was, who she really is underneath all of the plastic splints and braces. The funny, sassy things she used to say before she lost her ability to speak. The quirky ways she used to scoot herself around as a baby and toddler before she lost her ability to move.
There are times when we as a therapy team worry about how we’re going to document progress in this case, how we are going to show that we’re a necessary part of Sarah’s school programming. But it’s pretty clear to all of us that school for Sarah means something quite different from what it means at our hustling, bustling primary school. Yes, we provide services related to preserving range of motion in Sarah’s body, we ensure that she has appropriate devices for seating and positioning, and we evaluate the fit and function of her orthotics.
But more importantly than progress and goals, for Sarah, therapy really means consistency, stimulation, touch, familiar sounds and voices, and support and routine for Sarah’s mom and dad. It is the truest case of “therapeutic use of self”.
For me, being Sarah’s therapist is about showing up. Not just physically showing up and going through the motions, but showing up in a very real and emotional way. It’s about receiving the lesson Sarah teaches me every week – that life can be painfully fragile and unfair but that the human body, the strength of the human spirit, and the love of a family can go far beyond labels, diagnoses, and expectations.
Claire Heffron holds a Master of Science in Occupational Therapy from The University of North Carolina and has been practicing in public and specialized school-based settings for 10 years. She and Lauren Drobnjak, PT, are the co-creators of The Inspired Treehouse, where they share useful information about common developmental issues along with hundreds of activities for kids designed to promote healthy gross motor, fine motor, and sensory development. Follow The Inspired Treehouse on Facebook, Pinterest, Twitter, and Instagram!
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