Please join me in welcoming Melissa Castino Reid as MamaOT’s newest guest blogger. When Melissa first shared her daughter Rachel’s story with me several months ago, I was moved beyond words. I signed up to join her “Bus of Hope” and have been following their journey ever since. I hope her story, struggle, and triumph will inspire, inform, and move you the way it has me.
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In the summer of 2011, my beautiful, healthy daughter, Rachel, suffered a pair of strokes thanks to E. Coli at the tender age of four and a half. In order to walk, talk, and recapture her gross and fine motor skills once more, rehabilitation therapy has been a part of our new normal. In our journey as a family, a few things are quite clear: the parents and therapists are advocates, and we must work together actively and honestly if we hope to see our patient thrive and achieve comprehensive progress.
After the strokes hit, and Rachel’s condition stabilized, we moved from Children’s Hospital to Gillette Rehabilitation Center, located inside Regions Hospital in St. Paul, MN. I had never witnessed therapists first hand. They can be a unique brand of ingenuity, intellect, and inspiration. And most therapists who work with children know that fun has to be central to what is done in the sessions. I have a deep respect for Rachel’s main occupational therapists Lisa, Karen, and Leah. They have been powerfully instrumental in aiding Rachel in her recovery process.
The strokes left tremendous tone (spasticity) in both arms. I had no notion of what we had to do to get my daughter’s arms and hands working again. I’m sure I thought that a simple surgery would “make it all better.” Instead, I met Rachel’s first occupational therapist, Lisa, within the first week of living at Gillette. With her wide smile, blond hair, and twinkling eyes, she wanted Rachel to do one thing: push a button. That’s all. She accomplished this goal in about a month. Lisa also helped Rachel work on trunk control as she got her to lean on a bench, getting her hands to open and close as she played with shaving cream. From the start, all the therapists noted how hard Rachel worked, but like everything, she had good days and bad.
Stroke or traumatic brain injury recovery is laborious for the patient, but it’s not exactly easy for the family either. I always remember the joy I felt when I watched Rachel attain a goal, but I also won’t soon forget the fear that welled up inside if I didn’t see progress. One day, Rachel wasn’t pushing that button at all, and I had to step away and find a corner of the gym to let the tears fall. Lisa watched me walk away, carried on with Rachel as if nothing was wrong, and smiled at both of us with encouragement. I just wanted my healthy kid back so badly.
Lisa comforted me when the session was over. She and other therapists made it clear to me that I couldn’t measure success in increments of days. I had to widen the length to weeks, if not months. As a parent, standing at the bottom of grief’s mountain, I surely didn’t want to accept this. It meant that I had to be more patient than I already was. Guess what? My patience was shaky after nearly losing her.
But I needed these therapists on my side, so I listened to every word they said, sometimes smiling, sometimes crying. Another occupational therapist, Karen, was listening to my take on Rachel’s recovery, as I was learning how to gauge success, and she told me another thing I didn’t want to consider at the time: take pictures. My daughter’s face was so vacant since the strokes, so taking pictures was the last thing on my list. But over time, my cell phone camera captured the light returning in her eyes, ever slowly. With these pictures, I now have a way of measuring how much progress Rachel has made, trading shade for sunlit possibilities for my girl’s future.
After spending four months living inside a hospital, we left Gillette Rehabilitation Center in October of 2011. At that point in her recovery, her legs were moving just a bit, she verbalized here and there, but no words, and both her arms were tight and spastic, with her hands quite fisted. We were discharged to Gillette’s outpatient clinic in Minnetonka, and the slow recovery continued. Enter Leah, our new OT gal.
Leah was new on the scene, recently hired on. With her thin frame, long brown hair, and almond eyes, she is very comfortable in her surroundings for such a newbie. And while she’s young, I must confess she’s wiser than most her age. She took on Rachel with all her knowledge, all her curiosity, and all her Midwestern heart. We started where Lisa and Karen left off, helping Rachel to learn how to move the arms and hands to perform tasks. I shall never forget a moment with Leah early on where I was flexing my newly-formed advocate muscles.
We were talking about goals for Rachel, and at the beginning of our transition to Minnetonka, I was sensing this hesitation to push my daughter. In retrospect, all the therapists were probably trying to plot out a plan of action as they sized up their newest kiddo. So Leah asked me questions about specifics, and I think I was getting a little impatient because I was spitting out my answers.
“So what is your hope with this therapy? What do you expect?” Leah asked, looking at me directly.
“I expect a full recovery,” I said, with my palms up. “Yeah, a full recovery.” The silence after only punctuated the pull of war between us. I’m a hopeful parent; she’s a well-schooled, new employee, navigating the uncertain waters of this patient’s future. Who’s right? Who’s wrong? Or isn’t that what this is about?
After that conversation, all the therapists seemed to fall into sync, and Rachel’s recovery continued to take root in the new locale. Did that happen because I spoke truthfully and clearly what I wanted? Maybe. Or was this falling-into-rhythm thing going to happen in any case? Perhaps.
As parents of kids who require therapy, 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. I’m sure that Leah swallows hard when I say to her, “I want Rachel to play baseball again with me,” smiling still as she taps it into her laptop. I have learned to be (more) patient, but I also never stop asking questions, halting a conversation with my raised hand, asking for clarity. As a result, I am able to create goals with their knowledge in my head, using it as a guide.
Currently, the left arm is almost fully functional. For now, the goal in occupational therapy is to put the left hand to work while engaging the (spastic) right hand whenever possible. For example, we are getting Rachel to use the left hand to hold and make marks with crayons and markers, feed herself with forks and spoons, and navigate her speech tablet. We ask Rachel to stretch out the right arm multiple times throughout the day. I (or my mom or my husband) often reach for her right hand and extend it fully, holding it for five to ten seconds. Sometimes, I will crank it like it is a well, asking if water will come out of her armpits. This gets a big laugh.
Another thing I’ve done is gone back to playing board games with Rachel. I had trouble with doing it at first. Again, I wanted the full, healthy girl to move her own game pieces, but she isn’t quite ready to do this yet. One of the therapists along the way suggested that I move the game pieces for her, still playing the game. I wonder if I wallowed in my sadness too long, sometimes, but then I just look at Rachel and say, “Wanna play Candy Land?” A big smile spreads across her face like a bursting sunrise. Lately, she is able to pick out her own game piece and place it at the start of the game. She can point at the gumdrop and candy cane on the board. All of this points to progress.
As we begin the new year, 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, but therapists like Lisa, Karen, and Leah 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.
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Melissa Castino Reid is a community college English teacher, mother, wife, and writer. She has written for the Star Tribune, Pioneer Press, Minnesota English Journal, and Hearing Magazine. She keeps an online journal about her daughter’s recovery from stroke called the Bus of Hope. In her spare time, she loves to read, spend time with family, and go for walks. Her new addiction is running and sugar free Red Bull. If you would like to read more about Rachel’s recovery, read Melissa’s blog at www.busofhope.org or send her an email at mcastino@hotmail.com and ask to be placed on the Bus of Hope.
As mentioned previously, if you have a child who is nervous about or avoidant of tactile sensory experiences like this one, don’t force them to touch it or “just be fine” with it. Gauge their comfort level, offer demonstration and gentle encouragement, allow them to watch peers or siblings engage with it while positively reinforcing them for doing so (but DON’T punish or shame the one who doesn’t engage), sing songs or count or rhyme while doing it, make shapes and faces and sound effects as appropriate, and provide plenty of opportunities for exposure over time. Make it fun! Praise them when they try it and allow them to wipe their hands or take a break when they need to in order to keep it as positive an experience as possible.
Have fun!
