Saturday, April 18, 2015

OCCUPATIONAL THERAPY: It's the Little Things that Make Life BIG!

Many occupational therapists support individuals and families on a daily basis whose lives have been changed forever as the result of a challenging disability or diagnosis. The hard work of engaging in rehabilitation therapy is often a big part of the individual's recovery. But you know what is sometimes an even bigger -- and sometimes more powerful -- component of recovery?

Hope.

The following is a story about how HOPE has been driving the progress and recovery of one little girl and her family. I want to extend a warm THANK YOU to the little girl's mother, who has so graciously granted me permission to share her story of hope and inspiration here, with all of you...

If you had met four-and-a-half-year-old Rachel in May 2011, she would have stolen your heart with a dance move, her laugh, her inquisitive nature and her big, beautiful blue eyes. Should could swing a baseball bat and throw whiffle balls with her mom, who had bought mother/daughter baseball gloves for the summer ahead. Rachel was potty trained and wearing big girl underwear. She could serve up her own juice box while her mama drove around town running errands. Not yet in Kindergarten, she could write the alphabet, write words, and draw pictures.

In June 2011 this healthy, active little girl somehow contracted E. Coli and, within a month, experienced strokes on both sides of her brain. To this day, Rachel's family still does not know exactly where or how she contracted the food-borne illness. Rachel's mother, Melissa, shared with me that, when an EKG test was run at the Children's Hospital to measure Rachel's brain activity shortly after the strokes, "Her brain waves were as flat as notebook paper. She came very close to dying."

As a result of the strokes, Rachel lost her ability to walk, talk, and engage in all the "normal" fine and gross motor activities that active children her age enjoy. She was unable to sit up independently and she was left with very high muscle tone (spasticity) in both arms, with her hands closed in tight fists. Despite the dramatic physical changes that occurred following the strokes, Rachel's wide smile remained.

After approximately one month at the Children's Hospital, Rachel and her family were discharged and transferred to a rehabilitation hospital.

Rachel's mother, Melissa, led the charge as rehabilitation therapy became a part of their family's "new normal." According to her mother, Rachel participated in rehab "boot camp," participating in physical therapy, speech therapy, and occupational therapy twice a day.

In late 2012 -- a little over a year after the strokes occurred -- Rachel's mother contacted me to ask if she could share her story. This was the first time I learned about Rachel. Her mother wrote a guest post on my blog in early 2013 about the powerful role occupational therapists were playing in her daughter's recovery. She titled her post, "An Appreciation of Occupational Therapists."

Melissa shared that soon after the strokes occurred, Rachel spent four months living inside that rehabilitation hospital and participating in the intensive therapies to support her recovery. Her daughter's occupational therapists worked hard to help Rachel make progress toward reaching her goals. In the early days of rehabilitation (the weeks and months immediately following the strokes), Rachel's OT goals involved basic actions such as being able to push a button and being able to open and close her hands (while engaging in sensory activities like playing with shaving cream).

From the start, all of the therapists who worked with Rachel noted that, even though she had good days and bad days in her rehabilitation, she was a hard worker. That's an important piece of the puzzle in the road to recovery.

Melissa commented that, though recovery from a traumatic brain injury is hard work for the patient (i.e., her daughter), it's not exactly easy for the family either. She remembers the joy she felt when watching her daughter attain a goal, but also won't soon forget the fear that welled up inside if she didn't see progress. Though the therapists were committed to helping her daughter and smiled with encouragement as they worked with her, at the end of the day, Melissa just wanted her healthy kid back.

The occupational therapists who were working with Rachel listened to her grief-stricken mother and reminded her that she couldn't measure success in days at this point in the rehabilitation process; she needed to expand her perspective to weeks and months. This was tough for Melissa at the time. It meant she needed to be patient with the process. But she didn't want to accept that. Her patience was shaky after nearly losing her daughter.

Rachel's occupational therapists encouraged Melissa to document her daughter's recovery and monitor her overall progress by taking pictures. Melissa shared this was challenging for her at first because her daughter's face was so "vacant" after the strokes; the last thing she wanted to do was take pictures. But she did it. And, over the course of several months, Melissa began to capture the "light" returning in her daughter's eyes.

With those pictures, Melissa was able to measure her daughter's physical progress, "trading shade for sunlit possibilities for my girl's future."

She began to experience HOPE.

After spending four months inside the rehabilitation center, Rachel and her family were discharged to an outpatient rehabilitation clinic, where a new team of therapists facilitated her continued, albeit slow, recovery process.

Melissa described herself as a "hopeful parent." When the new OT asked Melissa what her hope was for therapy, she told her she expected a full recovery. "As parents of kids who require therapy," Melissa shared with me, "we must be clear in our expectations without being overbearing. And I've learned that therapists and parents must be honest about what we see in the present and the future."

What is it, specifically, that Melissa wants for her daughter?

"I want Rachel to play baseball again with me," her mother shared. "I can't help but dream about the warmth of summer, picnics with Rachel, and a game of catch with a whiffle ball. Better yet, I can't wait to go on walks, holding her hand as we stroll."

"My dreams may not come true as soon as I want them to," Melissa continued, "but therapists like (the OTs who worked with Rachel) have taught me the virtues of patience and new measurements of progress. If Rachel continues on this path with our help as parents and therapists, I believe a full recovery is possible."

Hope. It's what has been driving Rachel's recovery.

So much so that, early on in Rachel's rehabilitation, Melissa began writing a newsletter to update friends and family of her daughter's progress. She titled her newsletter "The Bus of Hope," conveying just how influential a role hope has played in driving Rachel's recovery. The Bus of Hope isn't just a newsletter, though. It's a living, breathing organism. It consists of all who participate in and support Rachel's recovery, whether through directly working with and caring for her, or through supporting her and her family from afar.

I have been following Rachel's journey as a passenger on the Bus of Hope ever since Melissa first contacted me about sharing her story, nearly two and a half years ago.

So you want to hear how Rachel is doing these days? The good news?

Rachel is now back in school, in second grade. Though spasticity hinders her right arm from fully functioning at this point, her left hand has seemingly fully recovered! She can feed herself with a fork or spoon with her left hand, and she can also finger-feed herself. She can hold her juice box with her left hand to sip her juice, and she is re-learning how to drink from an open cup. She surprises the grown-ups in her life with the occasional ability to use her right arm/hand to grasp or reach for an object, and she grins proudly after doing so. She is continuing to learn how to more independently propel herself in her wheelchair using one arm, and she is making slow progress in her ability to re-learn how to stand and walk. She has re-learned how to ride a tricycle at school and can even hold on with both hands, fueled by the cheers of her therapy team and a lot of determination from the little girl who continues to surprise everyone around her. She can speak words and short phrases. She can demonstrate that she comprehends what is going on in the world around her, from sharing that a school classmate is sick, to commenting on the traffic while stuck on the freeway. And best of all, she can tell her mama, "Love you."

Progress is happening.

Hope is still alive.

And it's that little bit of hope that can make a BIG difference in this long road to recovery.

Melissa remains hopeful that, someday, she and Rachel will get to use those mother/daughter baseball gloves they bought in May of 2011, playing catch under the budding trees of spring.

Rachel has come so far. Though she is not yet completely healed from the effects of her strokes, her mother knows that, "OT has played a strong, powerful role in Rachel's impressive recovery."

This summer, Rachel's mother is embarking on her own journey. She has nearly four years of updates saved, summaries of Rachel's progress that she has shared with those who ride the Bus of Hope. Now she wants to write a book about their story. Melissa shared with me, "I want to get the scenes of our lives down in a book for the world to see how one little girl fights back."

When Melissa is not commuting back and forth between her daughter's various school, therapy, and medical appointments, she works as a college English professor. She has also written for publications such as the Star Tribune, Pioneer Press, Minnesota English Journal, and Hearing Magazine. You should read her email updates. They are eloquent and inspiring, to say the least.

Melissa has started a GoFundMe account in an attempt to help keep the bills paid over the summer while she writes the book. She is relying on the support of friends, family, and strangers to help her share her daughter's story of hope with the world.

To learn more about Melissa's book-writing project (and to donate to her project if you're interested), CLICK HERE. Feel free to spread the word.

And if you're interested in continuing to follow Rachel's story of recovery, email Rachel's mother, Melissa, at mcastino@hotmail.com and ask to be placed on the Bus of Hope. You will receive updates that typically range from weekly to monthly (depending on how hectic and eventful life becomes for them). It's a story of recovery I'm proud to follow and support.

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Christie Kiley, MA, OTR/L is a mama and a licensed pediatric occupational therapist with experience working in early intervention, clinic-based, and school-based settings. Christie is author of the blog Mama OT, where she shares information, insights, and kid-friendly activities from an occupational therapy perspective. Her goal with her blog is encourage, educate, and empower those who care for children. Stop by Christie’s blog, say hello, and check out all her fun, helpful resources at http://MamaOT.com!

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