Monday, July 8, 2013

Families teach this OT student key lessons

Eric Smart (white shirt, back row, on the right) is an occupational therapy (OT) student at the University of Toronto and a familiar face at our BLOOM speaker nights. Eric says he gets more from hearing directly from parents and people with disabilities at BLOOM nights than “from textbooks and class lectures. The most meaningful lessons have come directly from the experiences, the honesty, and the hearts of BLOOM speakers—parents, children, an actor and actress, a business entrepreneur, a former Olympian and stepparent, and a parent author.” Here he shares five things he’s learned from family stories. Thank you Eric! Louise

Therapy needs to be balanced against family needs
In school we’ve learned that within our resource-constrained health system, therapy programs are primarily judged on whether objectives were met. Less attention is given to the process of "how" they were met. Through BLOOM speakers I’ve learned that if we look at rehab in a vacuum we risk delivering unintentional messages that a child is inferior and always needs to be improving; that they could always be a little “better” if they just did more therapy, even if that little amount took every bit of energy the family had left. I must keep my eyes, ears and mind completely open to families in case they choose to deliver the message that “Therapy is not right for us at this time.” 

Children’s rehab is not an exact science

The way a diagnosis is conveyed can hurt parents. In school I’m given textbooks and read about many conditions over the years. My knowledge is built gradually. Parents don’t have the luxury of learning about their child’s condition slowly. I’ve heard from speakers that when a diagnosis is made, emotions cascade in and create a world of uncertainty and confusion. 

I see now that part of my role as a therapist is to help parents navigate through a deluge of new medical terms and adapt to a new way of living. Many parents have described their devastation at the words professionals use to predict their child’s future abilities. Some parents are surprised when the predictions don’t come true. I need to remember that children’s rehab is not an exact science.

'The whole is greater than the sum of its parts'
I must be wary of viewing child clients solely as a set of distinct attributes of interest to health professionals. This doesn’t match the way parents view their kids. In school we’ve learned about family-centred care and how parents know their children best (obviously!). So naturally I feel the need to see children through their parents’ eyes if I hope to make a positive difference. 

This perspective makes me better understand why parents and clinicians alike question the tendency to plot and compare children’s abilities on a bell curve. These comparisons don’t take into account the complexity of a person and the unique life path they’re on and potentially lead to a focus on deficits. 

An OT may be pressured into viewing clients in terms of isolated abilities due to time restrictions and budget constraints. The old adage “the whole is greater than the sum of its parts” is an expression I can use to remind myself to never lose sight of the person in front of me.

Parents need time to be parents

At BLOOM speaker nights I learned that while I chose to be an OT, a parent of a child with a disability continually has new roles thrust onto their parenting "job description." They may become part OT, part physical therapist, part nurse, part social worker, part child-life specialist, part crisis counsellor, part case-coordinator, part educator. While I work 40-hour weeks, parents are working non-stop around the clock. This realization is humbling and puts my role as an OT in perspective. 

I will respect the days when parents tell me they don’t have the energy to educate me—one more professional in a long list—about every detail in their child’s long medical history. I will think carefully about recommending therapy programs that take time away from the limited time parents have to “just be parents” (not therapists) with their children. I must be hyper-vigilant of parents on the verge of burnout so I can encourage them to pursue respite and activities that will give them a break. 

Sometimes as a student I wonder if I have what it takes to become a professional OT, so I can only imagine how uncertain parents must feel as they take on the extra roles that come with parenting a child with special needs. I must never allow my recommendations to appear judgmental or to suggest that parents are not doing a good-enough job. 

I think parents need to be reminded that they are the most invested in their children and that they have a lot to teach professionals. I say this because my brother has autism and my parents have filled his life with such meaningful activities and social connections that I can only hope to come close to modelling what they’ve done with my clients one day.

‘There’s always something more I can learn’

Finally, these BLOOM nights have made me excited and certain that I will learn new lessons from each child and parent I work with in the future. Whether someone shares their personal meaning of vulnerability with me or demonstrates strength in ways I never could have imagined, I know these experiences will make me a better OT—bit by bit. 

I am thankful for the BLOOM speakers who so openly told their stories, and I will feel privileged to listen to the stories of my future clients' families.

The BLOOM talks have shown me that no matter how many years of school I attend, there’s always something more I can learn. I will never be an “expert.”

Now, as I get ready to start my second and final year of OT school, my goal is to become a respectful learner, fortunate enough to contribute the occasional word to the brilliant life stories being written and told by parents and children at Holland Bloorview.


Eric, you will go far in your chosen career because you have heart, empathy and the desire to truly help!

Excellent post. We just fired our OT recently (difficult decision) because she didn't get it and was always guilt-tripping us at every session that we weren't doing enough. But truthfully, we are burnt out big time. She didn't handle the firing well and told us we were giving up on Andrew. I feel like this post was written for her.

You are light years ahead thanks to such an awesome Bloom program!

Fabulous post. Thank you, Eric. You are every parent's ideal therapist! If only all the therapists shared your enthusiasm & empathy! I imagine you will influence your colleagues with this contagious energy.

As a bodywork (and former TCM) therapist treating disabled persons for the last 23 years I would say this article is on par with "Welcome to Holland" and Ann Schrooten's "Dear future physician". It lays out not only ideas but tools, sets the bar for professionals where it has always been for extreme parents/caregivers and illustrates that our knowledge can grow thanks to advocacy.

Eric, I couldn't agree more with your comments about the vital importance of respect, humility and listening. Must say, I feel proud that you are an OT student with us at University of Toronto and I'm certain you'll be influencing your peers and your teachers! You've summed up much of what it means to constantly strive to be a critically reflective practicioner.

Hi Jennifer! I didn't realize it was "YOU!" I haven't heard anything from you guys for a while. I think it's terrible what you've written here about how you were made to feel guilty by the therapist in terms of what you were doing with Andrew. We work so hard as parents and in families like yours are juggling multiple children. I hope you find a new therapist who "gets" what life is like for us. Take care!!

Thank you Beth and Lucas' mom!

Eric -- I think you're right that this is one of those seminal pieces that will hopefully influence practice (and which practitioners will look back to to assess how they are doing).

Thank you Gail for commenting!

Eric -- Gail has a long clinical and reserach history as an occupational therapist!

Words cannot express how much gratitude I have for everyone’s words of encouragement! Thank you! It means so much to me to hear these words coming from you, the parents and those who work with parents. I can never thank Louise enough for making this incredible learning experience possible!

Hello Jennifer, thank you so much for your comment and I am very sorry to hear about that difficult experience with the OT. A similar experience was shared at the first BLOOM night I attended when I was about just one month into the OT program. Hearing that “guilt” word be used for the first time that night rang all sorts of warning bells in my head that I need to stick close to BLOOM, or else all the time and energy I will be putting into learning those “technical therapy skills” in school will be wasted. Lessons from BLOOM really set the foundation and fuel my learning in school, and I cannot imagine going through school without knowing about BLOOM. I wish you and your family all the best! Hopefully see you at the next amazing BLOOM night! :)

Amaizng. Thank you for sharing with everyone! From a fellow 1st year OT student.