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?
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...
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 email@example.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.
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!
Saturday, April 18, 2015
Friday, April 17, 2015
Photo Credit: thanunkorm @Freedigitalphotos.netThanks to Cara Koscinski, MOT, OTR/L (The Pocket Occupational Therapist) for this informative "OT Month" guest post!
Is it Sensory or is it Behavior?
A child screams, yells, and hits other classmates at school.
Your daughter refuses to get her hair washed.
People stare at you because your son has thrown himself on the ground and has a tantrum-right in the middle of the mall!
The scenarios above occur daily in some of our lives. Our children have difficulty processing sensory input, making transitions, expressing their feelings, and controlling behavior. People often stare and offer suggestions about discipline, which we know won’t work for our kids. This situation is not only frustrating for the child, but leads many parents to believe that they are failing. So, the question remains….how much is behavior and how much is a sensory processing difficulty? Occupational therapists can help parents to determine the answers and provide strategies to help your child. Behavioral therapists may imply that the child is looking for attention. Each discipline has their theory as to what underlying issues are. Often, parents argue among themselves whether the child is ‘acting out’ or having a response to sensory stimuli. The entire situation becomes frustrating and overwhelming for everyone. As a result, cooperation from the entire team is a must!
Sensory processing and integration is our ability to take in information and make sense of it. Our brain compares the information with our previous experiences in order to determine what is dangerous to us and what/how we should respond. Children who have mature sensory processing systems are able to effectively take in and process the information and form an appropriate response. For example, a child is at school and the fire alarm sounds. He quickly raises from his desk, gets into line, and exits the building. However, a child who has sensory processing difficulty hears the fire alarm and screams in absolute panic, next he runs for the hallway in attempt to escape. He is unable to organize himself to finish his day and is sent to the counselor’s office. He is labeled a ‘difficult child’ because he often exhibits aggressive behavior in response to something that others consider harmless.
Determining sensory verses behavior requires some detective work. In my book, The Pocket Occupational Therapist for Families of Children with Special Needs, I encourage families to take a step back and analyze a child’s behavior by asking some key questions. What is the environment in which the behavior occurs? What happened before the child began the behavior? What was the child’s response? How did the adult respond to the child’s behavior? How did the child recover from the episode? If the behavior was prompted by a sensory experience then talk with your child to determine how he/she felt during the experience.
The old saying is true, “An ounce of prevention is worth a pound of cure.” Talk with the teacher to make a plan for the next fire drill (of course, there may be unplanned alarms). Involve your child in the process. Create a social story book and review it on a regular basis. Use actual pictures whenever possible. So, take a picture of the actual fire alarm at school. Consider purchase of noise-cancelling headphones or earplugs that your child has quick access to.
Working as a team to help a child is always best. Keep a journal of your child’s outbursts and tantrums. You might see a pattern. As a parent, make sure to get support from a friend or loved one. Always remember that you’re not alone and millions of others (parents and professionals) are trying to determine the question: Is it sensory or is it behavior.
Cara Koscinski is a long-time pediatric occupational therapist, speaker, and author of the Pocket Occupational Therapist book series. She is the mother to two sons with autism. Her books include, The Pocket Occupational Therapist for Caregivers of Children with Special Needs and the Special Needs SCHOOL Survival Guide for Autism, ADHD, learning disabilities, and More! For more information, visit her website at www.PocketOT.com.
Wednesday, April 15, 2015
Thanks to Rachel for this encouraging "OT Month" guest post. (We pediatric OTs love our swings!!!)
What a Difference a Swing Makes!
Lexi is a cute-as-a-bug 4-year old with two long pony tails with giant bows. She loves pink and purple and stuffed animals. She has a history of motor skill delays and apraxia, with no specific cause discovered. Lexi’s parents have her in dance, swimming and a Little Gym class, in addition to Physical Therapy.
When Lexi first came to see me, she was carried by her mother, and sat on her lap in the waiting room. She moved hesitantly in new environments and her mother reported Lexi would fatigue quickly with physical activities. She had considerable anxiety related to meeting new people and being in new situations. During the evaluation it was determined that Lexi had considerable challenges with postural stability, trunk stability, bilateral coordination, processing movement (vestibular) input and motor planning. It was also discovered that she loved to swing!
The swing became a staple part of OT sessions. We started just sitting and swinging back and forth, moving to laying on her tummy, tall kneeling, and even standing, with Lexi moving between different positions to “rescue” her beloved stuffed animals from the floor and put safely in a bucket at the top of the swing. Many activities and games took place on the swing to strengthen core muscles, develop postural stability, think about new motor plans and improve processing of vestibular input.
Lexi has become much braver on the swing and loves the feeling of her “hair getting messed up!”. Her mother is excited that Lexi does not lose her balance as often. She easily tolerates her swimming class and requests to go to the park afterwards, instead of home for a nap. Lexi’s mother was also so happy to see the new ways Lexi played in the snow on vacation.
Rachel was originally trained in Sydney, Australia, in 1994, and currently lives in Oklahoma with her husband and four kids. She works for CAPES, Child and Adolescent Program Enrichment Services, providing comprehensive and coordinated mental health, physical and educational care recommendations to parents of children and adolescents who present with significant problems in two or more areas relating to their development. Rachel teaches locally and nationally on sensory contributions to Toe Walking, Sensory Processing challenges and her favorite subject, Play.
Rachel can be contacted at CAPES 918.747.8282 or rottley[at]me.com
Sunday, April 12, 2015
Thanks to Abby at OT Cafe for this special guest post!
One of my favorite things about being an occupational therapist is celebrating all of the “little things” that make a big difference in the lives of the children and families we work with. It is truly an honor to help guide families through challenging situations.
Tyler* was a 7 year old boy whose mother brought him into the clinic for an occupational therapy evaluation. Tyler was bright and active and inquisitive. An outsider might have called him “all boy” and told his mother that that’s just the way boys are. As an OT, I immediately noticed his sensory seeking behaviors. Not only did Tyler have difficulty sitting still, but he was touching EVERYTHING and bumping into EVERYTHING and making noise with EVERYTHING. And not only was Tyler constantly on the go, but I could tell that this constant activity was sending him straight to a place of overstimulation. Not a good combination.
Tyler’s mother, as mothers often are during evaluations, was embarrassed by his behavior and trying to get him to calm down. I assured her that what he was doing was just fine; that I wanted to see Tyler in action. I explained to her that the best way for me to help her and her son was by getting a clear picture of their current challenges. I could tell that Tyler’s mother was exasperated and not sure what to do. She wasn’t even sure if bringing him in for an evaluation was the right thing to do. I assured her that it never hurts to get a professional’s opinion and that I was there to help her, not judge her parenting skills.
So what was the little thing that made a big difference for this mother and her son? Education about sensory processing. As a pediatric OT, this is something I do every day, but for the mother it was life changing. I could see it all click for her as I explained why I thought Tyler was doing what he was doing. I tried out some potential sensory diet** activities with Tyler and brainstormed with his mother how they could incorporate these activities at home. By the end of the session, I sent them on their way with a list of activities to try and a piece of Theraband. We scheduled a follow-up visit for the next week.
So why the Theraband? When I asked Tyler’s mother about her main priorities, the first thing she said was, “I would love for Tyler to be able to sit down at the table when we eat dinner. He just can’t sit still.” Tyler and I tried out some seating options in the clinic and he reported that he liked kicking the Theraband while he sat. I told you this kid is bright! With just a little guidance, he was able to identify what his body needed.
I will never forget when Tyler and his mother came back for their follow-up session. They walked into the room and Tyler’s mother said, with tears in her eyes, “Thank you so much! I put the band on Tyler’s chair as soon as we got home and that night we were able to eat dinner all together at the table for the first time.”
It truly is the little things that make life BIG!
-For more information on using Theraband on chair legs, check out this post at Therapy Fun Zone.
- Looking for an alternative to Theraband on the legs of chair? Check this out!
**Always consult with an occupational therapist to determine appropriate sensory diet activities for your child.
Abby Brayton-Chung is a pediatric occupational therapist with eight years of experience helping families and children in a variety of settings, including public and private schools, clinic-based, and home-based early intervention. She shares her passion for OT on her blog at www.abbypediatricot.blogspot.com. You can also find Abby on Twitter (@AbbyPediatricOT), Instagram (@abbypediatricot), and Pinterest.
To read another post in the "little things" series, click HERE!
Saturday, April 11, 2015
It truly is the little things in life that make a big difference, especially when working with kids who want to be just like their friends.
Madison is a 9-year-old sweet, friendly, adorable young girl who underwent a hemispherectomy at 7 years of age due to a cancerous tumor growing in her brain. She lost all function in her left hand aside from being able to use it as a stabilizing assist.
Madison is a motivated young girl and is doing all of her bilateral skills independently: cutting, stringing beads, dressing…..but she can’t do her own ponytail, a goal that she strongly stated when we first met.
I pulled up some you-tube videos that day and together we watched one handed techniques for ponytail making. Most kids would have seen those videos and given up. They were hard. But not Madison.
Together, week after week we created different types of adapted pony holders and tried numerous techniques. One day Madison came into therapy with a big grin on her face, telling me she had a surprise. She then proceeded to use one of our adapted pony holders and made herself a beautiful one handed ponytail.
She told me that it was the best day of her life because now she is truly independent, and she can make her own ponytail after gym class!
Madison is just one of the many inspirational children I am fortunate to work with every day!
Karen Gibber, OTR/L works at Janna Hacker & Associates. Please visit their website @www.jhatherapy.com and their blog @ https://jhatherapy.wordpress.com/
To read the previous post in the "little things" series, click HERE!
Karen Gibber received her Masters of Science in Occupational Therapy from Columbia University in New York City. She began her experience in pediatric rehabilitation at Staten Island University Hospital in NY, and then married and moved with her husband to Baltimore. There, Karen worked at Kennedy Krieger Institute and a private pediatric practice for 9 years. During that time, she attended Drexel University in Philadelphia and obtained her Graduate Certificate in Advanced Practice in the Hand and Upper Quadrant.
Karen has experience working with a variety of pediatric diagnoses, with a special interest in children with orthopedic and neuromuscular impairments including brachial plexus injury, congenital hand deformities, cerebral palsy, hemiplegia, and upper extremity fractures. She also enjoys providing therapy for sensory integration and fine motor delays.
Karen moved to the Memphis area in July 2014. She has three children with whom she is excited to explore this great city!
Friday, April 10, 2015
Some of the best parts of being an OT are the intangibles that rarely even get documented. Yes it’s a joy to see a baby go from having a severely flattened head with mandibular and eye misalignment to being a-okay! And yet, what strikes me so often is the beauty of the birth of a parent that I am privileged to see. When I first laid eyes on Eugenie in our waiting room, he was 8-weeks old and asleep in his car seat with the sweetest little tilt to his head and a yellow hat on his head. When I asked his parents to take him out of his car seat a look of fear washed over their frazzled, tired demeanors. Move Eugenie when he is sleeping?!?! It seemed an outlandish idea to them. I understood why when they took him out like he was a fragile piece of china and he cried, and cried, and cried, and cried.
When they removed his sweet little hat I could feel the tension and fear and guilt in the room, as his mom stated: “He’s perfect!” Dad gently said, “Honey, I think we need to see the measurements!” Meanwhile Eugenie is continuing to cry, and cry, and cry. They attempt to feed him and change him and rock him.
I ask if he likes to be swaddled and they said no. I asked if it would be okay if I gave it a try. They were very open to anything that might stop the crying. Between swaddling him and rhythmically bouncing with him on the ball, we were able to get him calmed and thus began our work together. We talked about baby gear and how most of it wasn’t good for Eugenie or his developing sensory system. Eugenie had quite a case of torticollis and plagiocephaly. I dipped in to my NDT, myofascial release, developmental, sensory processing, and many other toolbags. And I encouraged his parents when things plateaued and the going was tough.
After many months Eugenie had a head within normal limits including jaw alignment. He was able to use both of his hands equally and well, he could roll in all directions, and he could fully visually explore his environment. All of that is awesome! It is however, looking at the impairment level only and looking only at the baby.
But you want you know what brings me joy as an OT these days? It’s the parents’ growing sense of confidence in being able to handle their baby. It’s the beauty of the parents being able to take in information and decide how much therapy he needed during each phase and whether or not another cranial band is in order after he outgrew the first. It’s overhearing them in our bathroom as they are changing his diaper saying “It’s so great to be able to understand what he needs now when he cries!” It’s the glow in their eyes as they gain confidence and began to sleep again at night and remember all the reasons they wanted to create this family together. It’s the laughter as they reminisce about those early days. They are enjoying their occupations as parents! They are engaging in Rest and Sleep and Work and Play. All of this is done in new ways since Eugenie was born and has needed so much therapy and help at home.
To read the previous post in the "little things" series, click HERE!
To read the previous post in the "little things" series, click HERE!
Susan Klemm Slaughter, MS, OTR/L is the founder and owner of Carolina Kinder Development. The juxtaposition of her analytical skills with compassion and creativity from dual degrees in civil engineering and occupational therapy has allowed Susan to develop her practice into the national model it is today. Please click here to read more about Susan Slaughter.
Wednesday, April 8, 2015
Thanks to Rachel at Candokiddo.com for providing this amazing post in celebration of "OT Month."
Dawson was a 5-month old recently discharged from the hospital following a Traumatic Brain Injury that resulted in one-sided weakness and severe visual impairments. His young mother seemed at her wits end when I arrived to evaluate her baby boy for home-based OT. As a result of his injury, Dawson was totally different - he didn’t reach for toys, hold his head up or look and smile like he used to. He had cried around the clock since coming home and his mom said she was starting to just tune it out. She was told by his hospital team to “do Tummy Time”, but no support or strategies for HOW to help Dawson feel comfortable belly-down. He cried so hard when she tried that she gave up the first day home. Together we set goals for Dawson to enjoy playtimes in a variety of positions, including Tummy Time.
First, we brainstormed ways to soothe Dawson - I pushed her to think of things she hadn’t needed to do with him since his first weeks and things that had helped her other children soothe when they were babies. After some trial and error, we discovered that a swaddle blanket, a pacifier, gentle rocking and mommy’s calm voice settled Dawson down. He sucked furiously on the paci as his eyes shakily scanned his mother’s face and they enjoyed a moment of reconnection. I talked through some basic sensory concepts related to deep pressure and movement and encouraged mom to experiment in the coming week with other ways to give Dawson the types of inputs he was showing helped him feel comfortable.
With Dawson calm, it was time for Tummy Time to help him regain strength, body awareness and to use his vision to the best of his abilities. We began with Dawson positioned on his side, and I encouraged Mom to show him simple toys and objects from around the house - a bowl, a hairbrush, a set of toy keys - and watch his reactions. When she exclaimed that he really liked the shiny mixing bowl, I coached her to roll him onto his tummy and help position his weaker arm as he looked at the mixing bowl in this new position. She could hardly believe that he happily stayed belly-down for 4 minutes!
As our initial session ended, I encouraged mom to take the time she needed to calm Dawson completely before playtimes and to find toys or objects that captured Dawson’s interest before rolling him over for Tummy Time.
When I returned a week later, mom’s face beamed as she gushed, “You HAVE to see this!” She rolled out a soft blanket in the shade of a tree in the front yard and brought a plastic tub of metal household objects - spoons, measuring cups, a mirror. She showed me how he calmed almost immediately when he was brought outside with a paci and slowly rocked as she walked a lap around the front yard. She gently placed him on his side and captured his attention with a set of measuring cups before lovingly rolling him onto his belly, all the while explaining that she noticed he sees shiny objects best, especially when placed on the dark navy blue blanket.
Not only was Dawson showing greatly improved self-regulation, visual attention and much more even weight-bearing through his arms in just a week, the way his mom interacted with him was dramatically different. She was proud of him, confident in herself, connected and warm towards her baby even when he grew fussy. She saw Tummy Time as a position for play, not an misery to endure. Both mom and baby were enjoying belly-down playtimes. From then on, the hour a week I spent in their home was merely a jumping off point and Dawson’s mom continued to show me new activities and skills she discovered each week.
To read the previous post in the "little things series, click HERE!
To read the previous post in the "little things series, click HERE!
Rachel Coley, MS, OTR/L, has been a pediatric Occupational Therapist for 8 years. As a new mom, Rachel lets her personal passion for parenting and her professional expertise in infant development collide in CanDo Kiddo, a family business with a mission to help fellow parents understand baby development so that they can confidently and playfully give their kiddos the healthiest start possible.