Get them While They’re Young

Do you understand the impact of cerebral palsy (CP)?  Unless you have an intimate involvement with someone who has it, such as a family member or serving those that do, one would not understand its nature or how it affects individuals.  Only after I started working for Wendell Foster’s Campus (WFC) did I fully understand CP, despite having a relative with intellectual (ID) and developmental disabilities (DD) and despite having volunteered with individuals who have ID and DD.  While I felt compassion, I never really understood it.

My work as Community Education Coordinator advocates and educates, and I love it; however, I had a lot to learn!  One responsibility of mine involves coordination of the Spread the Word to End the R Word campaign, an initiative by Special Olympics to educate the public, especially young people, about the insensitive and inappropriate use of the words retard and retarded.  WFC started this educational program in 2009 to conduct educational presentations in the classrooms about ID and DD and their causes.  We educate students on how these challenges present physically and why.  Because the “r” word was once a now outdated medical term to label those with intellectual disabilities, we also address the insensitive use of it in today’s language, explaining the often-inferred and incorrectly-used slang definition of “stupid” or “idiot” as disrespectful.  We also invite students in K-12 to participate in essay and poster contests as a compliment to or independent of the classroom presentations.

Most of the students I present to are 5^th, 6^th, 7^th graders (I've yet to be invited into the high schools).  Surprisingly, many students have a loved one with one of these types of disabilities, and upon hearing the information from a factual perspective verses a misinformed and/or historically inaccurate assumption, the students intently listen, absorbing the info like sponges. Both teachers and I witness the shift in their mindsets as they come to appreciate the challenges faced by those living with CP and cognitive dysfunction.  The Spread the Word campaign initiates the first step to students correctly understanding those with ID and DD, thus paving the way to greater inclusivity and respect for those with differences. 

What students understand about people with ID and DD often reflects misconstrued and even inaccurate information they unfortunately received from other adults, older siblings and the media.  This misunderstanding rings obvious within their questions or their answers to questions I pose during the presentation.  The best example of misunderstanding appeared in one well-meaning essay encouraging the elimination of the use of the “r” word; the misguided student encouraged instead the use of a different word, like imbecile!

Our media, including movies, stand-up comedians, and celebrities use the “r” word to get a “laugh” which irresponsibly educates the masses of its acceptability of inaccuracy, and inadvertently ingrains a historical misconception that individuals with ID and DD are “stupid” or “idiots.”  Unfortunately, students also learn the “r” word from influencing adults.  A parent of a child with ID told me the story involving another child’s middle school teacher referenced the term “flame retardant” during a class lecture.  The teacher then paused to clarify with his students that this term was not to be confused with the word “retarded” which meant "stupid."  Look up the word in the dictionary and one will see that this teacher’s “clarification” is not what this word means!  Unfortunately, its use in everyday language perpetuates its incorrect meaning as “the norm” by both children and adults alike. 

Similar to the line in the theatrical musical Evita when the character Che sings, “Get them while they’re young, Evita, get them while they’re young,” the Spread the Word Campaign aims to educate children when they are young enough to learn the inappropriateness and insensitivity of the “r” word.  With this understanding, young people become more aware of its inaccurate and insensitive use so they may make a choice not to use it, as well as have greater compassion towards those with intellectual and developmental disabilities.  I meet some amazing kids who easily understand the insensitive impact the “r” word has on people.

If only the adults were as easy to teach and willing to shift their awareness and understanding about those we serve at WFC.  Sometimes, as demonstrated above, and as my work with this program reveals, adults inadvertently miss the mark by a mile in educating our children about individuals with intellectual and developmental disabilities.

In the Next Blog Entry: Educating the Grown Ups - “Well-meaning adults unfamiliar with the plight of those we serve inadvertently provide incorrect information . . . . For example, one poster . . . states that “retard-retarded is a diaese [sic] (disease).”

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“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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He’s Rounding Second, Third. . . .

It’s a hot Tuesday night and parents and friends of the Utica Stallions and Sorgho Cardinals are watching the bottom of the last inning of a T-ball game held in Utica.  The Cardinals are kicking Stallion butt with most of the innings called on the five-run rule.  Once the Stallions finish at bat, the game will be over with a mark in the Cardinals win column.

During this inning, the coaches decided to experiment with Nicholas’ batting helmet since in previous at-bats, his helmet loosely wobbled on his head, thus interfering with his view.  They decided to leave his ball cap backwards on his head with the batting helmet on top.  It worked!  Loose and wobbly was eliminated; however, now Nicholas looked slightly like Darth Vader! No matter for during his turn at bat, the Force was definitely with Nicholas!

Nicholas stands at the plate to prepare for the first three free throws they pitch before setting up the T-stand.  He swings and misses the first one, but CRACK went the bat on the second pitch!  Nicholas made contact!  He HIT it!  We all couldn’t believe it and started screaming for him to run.  In reviewing video his grandmother took, it looked as if even Nicholas himself couldn’t believe he hit it.  Nicholas had a second of hesitation before tossing the bat to run for first.  Unfortunately, the Ump called it a foul ball since it didn’t leave the foul zone that sits in front of home plate.  Nicholas heads back to home plate for his final pitch which he misses.  Now, the Ump sets up the T-stand on home plate for Nicholas.  After a couple of attempts, Nick gets a solid hit off it and heads to first.  Given previous innings’ rallies and fielding success of the Stallions’ opponents, we didn’t expect Nick to make it to first base; but something went terribly wrong in the in-field.  The Sorgho Cardinals ran out of steam.  Confusion and chaos ensues in the infield as Nicholas heads to first base! SAFE!  Woohoo!  I’m ecstatic!

The next Stallion comes to bat, gets a hit, and into the infield it goes.  Nicholas, on the ready to make the trip to second, heads out for his destination.  Watching him cross that span between bases made me wonder if it felt like a mile to him.  Again, the Cardinal players fumble as to what to do with the ball.  Nerve-wracking to watch, Nicholas did it!  Safe at second!  Now, I am beyond ecstatic!  Another Stallion comes up to bat, gets the hit and off Nicholas goes to third!  As he arrives, he makes an intentional stomp on third as if to announce he has indeed arrived and safely.

The bases loaded, the next Stallion batter steps up to home plate while the entire crowd, home team and opponents alike, are rooting for this little boy on third!  SMACK off the T-stand into the infield.  A Sorgho player snags it and turns around uncertain as to where to throw it!  Nicholas is half-way home!  GO Nick, GOOOOOO!  The little gal with the T-ball turns around as other teammates converge in an effort to help make sense of the play with runners at every base moving to the next base.  Nicholas closes in on home plate, but not without typical "Nicholas flair."  As he approaches it, he places one foot on the plate and makes a slide split to SAFE!  He scores!  Nicholas SCORES!  Everyone is cheering!  I’m tearing up with joy to experience this blessing of seeing it!  YEA NICK! 

Nicholas returns from home plate with less excitement than the moment held for the three women sitting on the bleachers watching him.  What a beautiful way to end the game!

What was the final score?  It doesn’t matter.  I watched Nicholas win; not against the Sorgho Cardinals, but against cerebral palsy.  That one hit, that trip around the bases to score a run exemplified Nick’s hard work in physical therapy, the belief of his family and his physical therapist that he can achieve his goal to play T-ball with his friends, and the willpower and determination this little boy. 

THAT’S what Wendell Foster’s Campus is all about. . . . THAT’S what we do.

And now, you know the rest of the story.

In the Next Blog Entry: Get Them While Their Young - ". . . middle school teacher referenced the term “flame retardant” during a class lecture. The teacher then paused to clarify . . .  that this term was not to be confused with the word “retarded” which means "stupid." 

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“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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And now, the REST of Nick’s story . . . .

In 1963, Paul Harvey visited Wendell Foster’s Campus (WFC) and learned what Mr. and Mrs. Foster were doing for Owensboro children with developmental disabilities.  The story goes that immediately upon the completion of his tour, he asked with a sense of urgency to be taken to the nearest radio station. Upon arrival, he hijacked a recording booth and taped a show that would later be played on air about his visit to the Campus.  For many of us who grew up with parents listening to Paul Harvey on the radio at the noon hour, we remember the tagline that became his legacy, “And now, you know the rest of the story.”

The first blog chapter about Nicholas’ journey with cerebral palsy, Against All Odds, shares the story of this little go-getter who came into this world under the worst of circumstances.  Both WFC and Nick’s family have received countless comments about his blog chronicle.  One WFC employee couldn’t wait until the end of the series to find out if Nick played T-ball or not!  Thus, we decided perhaps many of you who have loyally followed Nick’s story (thank you!) might be wondering too.  And so, here’s “the rest of the story.”

Michele Clouse and Sue Carder, Nick’s speech therapist and physical therapist, respectively, and I set a date to attend one of Nicholas’ games at Utica’s ballpark.  The game was for the most part uneventful. Sue learned that in T-ball, the coach gently pitches the ball to the batter three times before setting up the T-stand.  Ever the physical therapist, she started planning right then how she and Nicholas would practice hitting without the T-stand in their next PT session.  At this game, Nick took uncertain swings at the pitches, but managed a nice hit off the tee.  His run to first base was unsurprisingly slow given his physical challenge.  His mom and grandmother informed us teams figured this fact out, so opponents often took the ball to first for the assured out.  Who’d thought four, five and six-year olds could think strategy?  This T-ball game wasn’t the kind I remember when my nephews played over fifteen years ago.  Nick, along with a few of his team mates and his opponents would occasionally take a seat in the field and throw a little dirt around, but for the most part, they were savvy on the field.  Since the season’s start, Nick played the catcher’s position a couple of times, as well as outfielder.  After this game, he was happy to visit with us but was less interested in our opinion about his ball performance.  Nicholas was more interested in what cars we drove and where we parked so he could go see them!

I attended another one of Nick's game later in the season on Tuesday evening without telling him in advance.  I arrived shortly after the game had started, while Nick was in the outfield.  When he came in from the outfield, he studied the bleachers where I sat between his Mimi (Linda) and mom (Carol).  Nick was also the first up to bat upon the inning change, and as he moved towards the home plate along the baseline fence from the dugout, he diligently eyed the bleachers to figure out who I was.  Halfway to the plate, recognition donned on him and he immediately detoured from his path to home plate to the fence to tell me hello!   The three of us reminded him, “You’re up to bat, Nick!”  Getting back on track towards home plate, he pointed out I looked different, as if to explain why it took him so long to figure out who I was.  Nick made a hit off the tee but his opponent tagged him out halfway to first base.

Upon his return to the dugout, Mimi met him there to give him some water through his feeding tube; it was a hot evening.  She returned to the bleachers stating Nicholas’ request for my presence at the dugout.  Knowing he’d focus on nothing else until he talked to me, I went over to say hello.  That stinker is one smart cookie and nothing gets by him.  He pointed out I didn’t post the blog the day before as usual!  I post blog chapters on Mondays and Fridays.  Feeling a bit chastised, I explained I wasn’t at work Monday thus my reasoning for not posting until that morning of his game. Unwilling to accept my answer at face value, he insisted for more information; I explained I wasn’t feeling well and stayed home.  With an exuberant “Oh!” that seemed to appease his displeasure and excuse my tardy blog post, we moved on in our brief conversation.

The Utica Stallions’ opponent, the Sorgho Cardinals, was whooping their butts in this particular game.  We were relieved the bottom of the last inning for this game arrived, as the Stallions went to bat.  None of us expected a rallying effort by this group of kiddos, least of all led by Nicholas!  What happened in the bottom of this inning made our sweating in the hot setting sun worth every minute!  And it was the talk in the Green Therapy Pavilion and PT department for the next week!

In the Next Blog Entry: He's Rounding Second, Third. . .  - “Watching him cross that span between bases made me wonder if it felt like a mile to him.  Again, the Cardinal players fumble as to what to do with the ball.  Nerve-wracking to watch, Nicholas did it!  Safe at second!”

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“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors). Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus. Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

Survey Says!

Jamie loves talking to people but because of a cognitive dysfunction, she sometimes lacks social grace when doing so.   To help counteract this disconnect, Jill, her occupational therapist, has Jamie periodically conduct surveys.  These surveys place Jamie into social interactions with people so she may practice her social skills in a fun way. 

In today's session, Jamie will conduct a survey of the folks in the Green Therapy Pavilion (CORF). Together,  Jill and Jamie select a survey question that Jamie can ask people who participate in her survey.  The question is simple, usually asking about a favorite dessert, candy bar or holiday.  Today’s question: “What’s your favorite movie?”

Jamie struggles with social appropriateness.  She injects statements completely unrelated to the conversation at hand.  For example, in addition to one of her popular sayings of “I’m tired,” Jamie will say several times during the session, “I’m getting old.”  The first time I heard her say this, I chuckled and thought to myself, Girl, I’m forty-something, you don’t know what old is!  Regardless of how many times Jill and/or I would say twenty-three was hardly old, Jamie continued to restate this statement at odd points within the conversation.

Once the decision was made to survey what people’s favorite movie is, Jill gives Jamie a piece of paper to write down the question.  Jamie graduated from high school so she reads and writes fairly well, though she struggles sometimes with spelling.  Jill then revisits with Jamie about how to conduct the survey, an activity they’ve done several times in past sessions.  Jamie outlines the survey steps but evidently to Jill’s dissatisfaction.  Jill patiently reviews the entire sequence of the survey process with Jamie.  In doing so, I begin to understand how important it is to spell things out because of her challenge with follow-through and attention to details.

1. Approach someone and say “Excuse me.”
2. Introduce who you are.
3. Tell them you are conducting a survey; ask if they would like to participate.
4. Upon their agreement, ask the survey question.
5. Upon receiving an answer, write it down on the survey paper.
6. Thank them for their participation before moving on to someone else.

Simple enough but Jamie misses or forgets a couple of steps in this process of surveying people.  She forgets to say “Excuse me” but launches into “Hi, I’m Jamie.”  Sometimes, she goes right to the announcement of “I’m doing a survey” without introducing herself.  Jill coaches her along the way, especially as she begins to start somewhere in the middle of the survey process.  Surprisingly, Jamie isn’t as talkative with those she surveyed, but then, she is busy recording people’s answers, asking for help with the spelling of a word on occasion.

Today’s observation would be the last I’d spend with Jamie.  I enjoyed getting to know Jamie whose passion for animals, especially horses, I also share.  I admire her whimsical carefree demeanor; she takes nothing in life too seriously, which I often slip into doing. 

I’m grateful to both Jamie and Jill for allowing me the opportunity to better understand the therapeutic practice of occupational therapy, and of course, I’m immensely appreciative to ALL of the therapists in the Green Therapy Pavilion for putting up with my hundreds of questions, invading their therapy space, and allowing me to travel if only briefly along their journey as they fulfill the Wendell Foster’s Campus mission of empowering people with developmental disabilities to realize their dreams and potential.

In the Next Blog Entry: And now, the REST of Nicholas' Story - “Little did any of us expect a rallying effort . . . . least of all led by Nicholas!  What happened . . . . made our sweating in the hot setting sun worth every minute!”

We want to hear from you!  Please shae your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.

“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors).  Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus.  Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

Horses & Friends

In observing occupational therapy (OT) sessions in our Green Therapy Pavilion (CORF), I begin to understand the breadth of treatment this therapy offers to its clients.  An “occupation” is considered everything that’s meaningful, purposeful, and/or functional for a person that s/he does from the moment they wake up until they go to bed.  I don’t know about your day but for me, that’s a lot of stuff!  From household tasks (making a bed, making breakfast, cleaning up dishes, turning on and off lamps, cleaning house) to self grooming habits (brushing teeth, washing face, brushing hair, getting dressed, bathing, toileting, applying makeup, shaving) to communication  (social skills, computer skills, writing, operating a telephone, taking messages) to leisure activities (fishing, crafts, baking, pet care, playing with toys).   Taking into consideration the outpatients’ values, interests, history, roles, routines and needs, OT examines the limitations that may be preventing or challenging their participation in daily activities.

Do you realize how complex the process of learning is? The brain is a sophisticated organ, the human computer if you will.  Many cognitive skills contribute to both academic and occupational success.  Critical skills include attention, working memory, processing speed (how fast we figure things out), long-term memory, logic and reasoning, and visual and auditory processing; all are interdependent though they often are integrally used in their work with other skills.  Individuals with brain injuries (cerebral palsy, CNS dysfunction, autism, epilepsy, etc.) experience “malfunction” in how their brain processes information, pays attention, reasons or remembers things.  Jamie, the young woman I observe in OT, experiences what I call “cognitive disconnect,” a very non-medical term.  She struggles with cognitive reasoning, social etiquette and attentiveness to details. 

One of Jamie’s OT goals in working with her therapist Jill is to learn social appropriateness. 
Jamie loves horses.  And the television show “Friends.”  And socializing.   One day prior to her appointment, I found Jamie sitting in the lobby waiting for Jill.  I decided to wait with her and take the opportunity to learn more about Jamie outside the therapeutic setting.  As we visited, I better understood the social aspect of her challenges. 

After the obligatory preamble of “how are you” exchanges, Jamie suddenly launches into discussion about a horse, who the brood mare was and its bloodline.  Mildly off balance by the sudden, disorienting flow and rhythm of the conversation, I struggled to track Jamie’s line of thinking as she jumps around within the exchange.  She tended to talk fast, sometimes mumbling her words.  Once the topic came to a pause, I asked Jamie if she owned a horse.  No, she said but she rode them.  Familiar with a local organization called Dream Riders of Kentucky, a therapeutic riding program for individuals with disabilities, I asked if she participated in their program.  She does, and off we go again on another conversational ride as she names all the horses’ she ridden, which are her favorites, one that recently died, and other particulars she felt important to share.  Jamie even pulls her cell phone out to show me a photo of a horse and launches into more details about the horse and its personality.  I relax in resignation to simply listen.  She loves riding horses with Dream Riders; she plans riding again later this summer. She doesn’t work; she goes to a pet store where she volunteers to help with the animals; she really loves animals.  She’s a huge fan of the TV show “Friends;” she stays up late watching the show; she’s tired.  Her sister is an OT therapist in CORF.  She lives with her mom; she goes out with a gal to do fun stuff in the community.  She has a boyfriend who she says better not make her mad.  (I did manage to inject that I’ve yet to meet one that doesn’t, wishing her luck with that one.)  She wonders aloud where Jill is; she tells me she’s getting old, and she’s tired.  She shares what happened on the “Friends” episode; she thinks Joey’s cute but says he’s a mess.

And all this in the five minutes we spend waiting on Jill.  Jamie loves visiting with people, and she’s a charming young woman that grabs your heart with her openness, honesty, and compassion, especially for animals.  This conversation offered me greater insight to what was important to Jamie, and a better understanding of her social challenges. 

With Jill’s arrival, we move to Jamie’s OT session where today’s activity is “Survey says!”

In the Next Blog Entry: Survey Says! - “Jamie misses or forgets . . . . to say “Excuse me” but launches into “Hi, I’m Jamie.”  Sometimes, she goes right to the question . . . . without introducing herself.”

We want to hear from you!  Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.
“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors).  Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus.  Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

Brownie Therapy

Late for my occupational therapy (OT) observation with Jamie in the Green Therapy Pavilion (CORF), I arrive to find Jamie and Jill, her occupational therapist, preparing to make brownies in the OT kitchen.  Wondering why these gals are going all “Martha Stewart” on me, I figured Why not? Brownies have been a form of therapy for me in the past. Giggling to myself, I settle into a chair to observe.  Jamie, ever the sweet friendly gal, enthusiastically greets me as I slide into the session in attempt not to disrupt.  I’ve noticed in past observations Jamie becomes easily distracted, but Jill keeps her on track by giving her a bag of brownie mix asking her what they need to get started.

How many times have you and I made a box of Duncan Hines brownies?  Do you remember the last time you actually read the box recipe directions?  Can you recite any of them?  I admit I didn’t until I did a Google search.  At best I scan the pictures for how many eggs, how much oil and/or water, what oven temperature it requires, and how long to bake them.  You and I take for granted our automatic grasp of baking a simple box of brownies but the follow-through on these simple steps challenges Jamie’s success.  With her cognitive challenges, distractions come easily for her and her attention to details and thus, follow-through suffers.

Jamie reads the package aloud, noting they will need two eggs, ¼ cup oil and ½ cup of water.  Jill sends Jamie to the refrigerator for two eggs while she herself pulls oil and a measuring cup out of a cabinet.  Next, Jamie reads the first step of the recipe instructions, Preheat oven to 350 degrees.  Jill helps Jamie figure out our dinosaur of an oven in OT.  This oven comes from the dark ages with its knobs and dials!  Jamie turns the knob to 350 degrees with Jill’s guidance and explanation on how to actually turn the oven on with a second knob.  Oven preheating, they move to the next step in the recipe directions. 

“GREASE bottom of pan with shortening or cooking spray.”  Jill pulls out a can of cooking oil so Jamie may spray the pan.  With this task complete, Jill asks Jamie to continue:  Empty brownie mix, egg(s), oil and water into large bowl.  Jamie follows the instructions, though Jill has Jamie review the recipe step again because she forgot to add one of the ingredients.  As I observe, Jamie not surprisingly becomes easily distracted as she asks Jill about her wedding plans, or says how tired she is, or asks her if she watches the TV show “Friends” rather than fully focus on what she’s doing.  Jill gently redirects Jamie’s attention to the task at hand.

Stir until well-blended (about 50 strokes); spread in greased pan and bake immediately. Once Jamie begins stirring, Jill takes the opportunity to answer a couple of her questions.  I notice awkwardness in Jamie’s body as she simultaneously holds the bowl and stirs the brownie mix.  Jamie manages the task fine but the coordination challenge presents itself.

Spread the batter evenly into the pan.  Jamie now struggles with the coordination of holding the bowl while manipulating the spoon to dump the batter into the pan.  Jamie’s upper-body strength or the lack thereof comes into play here too.  Jill notices, and suggests that Jamie hold the bowl a different way, giving her specifics on how to do so. Jamie concedes that’s easier and continues pouring the batter.  Jill asks Jamie to review the instructions one more time to determine the baking time.  She helps Jamie set the timer, then opens the oven door so Jamie can place the brownies inside, cautioning her to be careful.  Once the brownies are in the oven, we move to another OT activity until the timer goes off.  When the timer buzzes, a quick check with an inserted knife reveals the brownies aren’t done.  Jill explains to Jamie they need to bake the brownies a little while longer, in this case, another ten or so minutes. 

Jill later explained to me that Jamie wants to be independent at home which means cooking more of her favorite things on her own.  Additionally, she explained her struggle with following through on task activities, such as a following a recipe, checking on what’s baking, remember she has something baking, etc. to the final outcome:  a warm batch of brownies fresh out of the oven.

What about the brownies, you ask?  Well, what I know for sure is they smelled awesome and I didn’t get any!

In the Next Blog Entry: A Wild Ride - “Mildly off balance by the sudden, disorienting flow and rhythm of the conversation, I struggled to track Jamie’s line of thinking as she jumps around within the exchange.”

We want to hear from you!  Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.

“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors).  Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus.  Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

A Ball of a Time

On my first day of occupational therapy (OT) observations at the Green Therapy Pavilion (CORF), I arrive to meet Jill Boeglin, Jamie’s occupational therapist.  Upon Jamie’s arrival for her OT session, Jill introduces us, explaining I’m observing as a new employee learning our services.  We ask Jamie if she’s okay with my observing her sessions to which she replies “sure.”  Jamie by all appearances seems to me like a normal young woman, leaving me to wonder why she’s even in OT.  At this point, I have no background information on Jamie or the OT goals set by her and Jill. 

We walk to the therapy area where Jill selects a large ball similar to an exercise ball and gives it to Jamie with instructions to bounce it with her right hand.  Jamie does, successfully maintaining control of it as she bounces it in one spot without any problem.  Jill gives Jamie a medium-sized ball, asking her to do the same thing again.  Jamie bounces this ball but now I notice her struggle to keep control of its bounce.  Her arm movement appears gangly and stiff while her hand bounces it with heavy-handedness.  Suddenly, the ball moves out of her bounce zone; despite bending over to extend her reach for it, it gets away from her.  Rather than moving herself with it, Jamie simply lets it bounce away while standing in the same spot, making no effort to retrieve control of it.  Jill retrieves the ball, returns it to Jamie with further instructions:  When the ball moves away from you, move with it, moving your feet with the ball to maintain control as you bounce it.  Jamie bounces the ball, and again, the same thing happens after the first several bounces.  She bends at the waist, feet planted where she’s standing, attempting to maintain contact with the ball.  As a result, she loses her balance in the overcompensation from the upper body effort to stay with the ball.  The ball makes its get-away.  Saying “this is hard,” Jamie nonchalantly retrieves the ball.  Once again, Jamie bounces, and once again struggles to coordinate her upper and lower body to work in unison to maintain control of it. 

In later OT sessions, Jamie shows improvement with this exercise, moving from a medium ball to a smaller ball, then a tennis ball.  The tennis ball really challenges Jamie’s gross motor skill coordination.  At one point when the tennis ball bounces away to rest under an immovable object, Jamie goes to it but seems unsure as to how to get to it.  To retrieve the ball, the action would require someone to bend down, even on one’s knees, bend further over at the waist with an extended arm under the object to retrieve it.  Jamie stands as if unsure of what she needs to do to get access to the ball. 

Initially, I think Jamie’s just being lazy, especially since she’s repeatedly stating “I’m tired” during the activity.  When Jamie bounces the ball, the movement appears as if both halves of her body are awkwardly interacting with each other.  One or the other moves, but both struggle to work together to perform the task.  Later, I learn Jamie’s lack of effort reflects her inability to process the physical coordination involved in moving with the ball and getting the ball out of its tight spot. As children, we naturally learn to get on our knees, lower our upper body enough so we can extend our arm under a dresser to reach a toy lodged in the back next to the wall.  We learn this activity unconsciously giving no thought to the mechanics of the effort.  For those with cognitive and physical challenges like Jamie, this activity requires conscious thought and concerted effort in performing this physical coordination.  As we get older and our bodies age, bones creak and joints stiffen, we take greater care and thought into maneuvering our bodies through the task of retrieving something under a chair. Through OT, Jamie learns how to coordinate her muscular movement so both the upper and lower body work in unison to perform the activity. 

Over time, Jamie managed the ball bouncing activity better some days than others, and I definitely saw improvement.  Jill explained and showed Jamie how to move her feet and body with the ball when it tried to get away from her.  One day, Jamie proudly announced she’s been practicing at home which occupational therapists encourage of their clients. This exercise helps Jamie build upper body strength while facilitating coordination between her larger muscle groups.

I quickly learn OT involves breaking the simplest of tasks down into several steps for greater understanding and performance, which becomes more evident when the time comes for Jamie to make brownies.

Mmmmm, brownies. . . . . . . .

In the Next Blog Entry: Brownie Therapy - “ Wondering why these gals are going “Martha Stewart” on me, I figured Why not? Brownies have been a form of therapy for me in the past.”

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Reverse Discrimination

Twenty-three years old, Jamie lives at home with her mom but for the most part is fairly independent and self-sufficient.  Upon our initial meeting, I notice no obvious disabilities but through my observation of her occupational therapy (OT) sessions, Jamie’s challenges become evident.  Jamie has central nervous system dysfunction; at some point her brain suffered an injury, mildly impacting her cognitive skills and muscular motor skills.  Cognitive skills include attention (both focus and to details), memory, the speed at which one processes information, logic and reasoning.  Motor skills involve movement of the body’s muscles: gross motor skills are the abilities to control the larger muscles of the body for walking, jumping, running and other such activities.  Finer motor skills deal with smaller actions, such as grasping an object between a thumb and a finger.

Jamie’s developmental disabilities are mild and subtle, leaving me to wonder upon meeting her as to why she was even in OT at all.  In conversation, Jamie will often repeat a statement over and over again, injecting it into the conversation at unusual times. She’ll also change the subject dramatically from the topic being discussed, revealing some social challenge.  Jamie also struggles with follow-through on basic tasks or projects.  Her attention to details, for example, to cooking something or brushing her hair may go unattended or unfinished. I notice an awkwardness in Jamie's body coordination when undertaking an activity that involves both her upper and lower body (gross motor skill).  Most wouldn’t notice these subtle cognitive impairments, and may perhaps pre-judge Jamie as “odd” or “inappropriate.”  Unfortunately, I’m told by her sister that these very subtleties challenged the diagnosis process of her disability through the years.  Without obvious presentation of her disabilities, others’ have refused to accommodate Jamie's needs, which could ironically be considered “reverse discrimination.”  For example, Jamie’s request for bumper pads for the gutters at a bowling alley was once rejected.  According to the bowling alley, this accommodation tool is used for children, elderly and those with disabilities, and thus initially refused the family’s request for their use because Jamie didn’t "look like" someone with a disability.

Jamie started her OT sessions in November 2011 with Jill Boeglin after a therapeutic evaluation.  With input from both Jamie and her mom, they together identified a few OT goals for Jamie:  improve follow-through and safety awareness when performing a task, especially in the kitchen; develop attention to details when performing a task; improve social skills and etiquette; develop gross motor coordination as well as muscle strength and endurance in Jamie’s upper and lower body.  These goals will support Jamie’s ability to become more independent, and lessen concerns for her safety and well-being.

With these goals identified, Jill incorporates a variety of OT activities and exercises that will address the identified challenges Jamie experiences in her day-to-day function of living.  I am fascinated by the creativity Jill uses in administering the OT treatment, designed to support Jamie’s efforts in achieving Jamie’s goals in a fun and entertaining way.

First up:  Bouncing balls!

In the Next Blog Entry: A Ball of a Time - “Jamie bounces this ball. . . . I notice her struggle to keep control of its bounce. . . . . . Suddenly, the ball moves out of her bounce zone. . . ”

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Job Therapy?

Last but not least I spend time observing Occupational Therapy (OT).  I’ve spent hours over several weeks in the Green Therapy Pavilion (CORF) in outpatient therapy observations, but of all the therapies, OT was the most elusive to my understanding. I really had no idea what purpose it serves and felt eager to learn more about it.  Whenever hearing the words “occupational therapy,” I thought of helping workers injured on the job return to work.  Once again, through my OT observations, I realize how little I really know.

My first observation in occupational therapy (OT) at Wendell Foster’s Campus (WFC) comprehensive outpatient rehabilitation facility (CORF) introduces me to Jill Boeglin, a young therapist fresh out of school who started with WFC in June 2011, and Jamie, a young twenty-three year old woman.  Jill Boeglin graduated from University of Southern Indiana (USI) in May 2011.  After she did her 12-week clinical at CORF, Jill “fell in love with it” and jumped at the opportunity of an open therapist position shortly before graduating.  Upon initially meeting Jamie, she appears to have no obvious disabilities.  I later learn how subtle developmental disabilities can be, and how that subtlety works against Jamie almost to the point of reverse discrimination.  My observations with Jamie and Jill will show me that occupational therapy actually prepares one for the job of living.

Merriam-Webster defines “occupation” as “an activity in which one engages” and “the principal business of one’s life.”  Occupations.  Many hear this word and would immediately think “my job.”  From an OT perspective, and per Merriam-Webster’s definition, this therapy considers basic daily functions as “occupations.”  Unable to carry out daily functions for ourselves, we may require help in getting them done. WFC’s mission charges us to empower individuals with developmental disabilities to reach their potentials and dreams.  Being able to groom oneself or feed oneself speak to dreams for greater independence by many who must rely on another person to do these simple tasks you and I take for granted every single day.

Simply, OT prepares an individual for the occupation of living.  Who'd have thought?  Our therapists facilitate outpatients’ participation in the daily activities they want and need to do through everyday life.  OT interventions assist children with disabilities to participate fully in school and social situations, and help people recover from injury so they may regain their basic skills used daily, such as:  brushing our hair, following a recipe, writing our name, making a bed, grabbing our purse, buttoning our shirt to name a few.  OT also supports older adults experiencing physical and cognitive changes.  Typically, an evaluation assesses a person’s “performance” for “occupations” (life skills activities), the barriers to and challenges around performance, all to determine the person’s goals and develop a treatment plan.  The treatment plan outlines a customized plan of action centering on what’s important to the person as well as what is important for the person.  OT strives to improve one’s ability to perform daily activities and reach his or her desired goals.

Ever break an arm and wear a clunky cast from above the elbow down to the base of your fingertips?  How was it to get dressed?  Work on a computer?  Take a shower?  Having personally been in this situation, it challenges, if not frustrates someone when attempting to do daily tasks. This extreme example exemplifies how challenging it is for someone with a developmental disability who cannot do for him or herself.  Occupational therapy supports individuals to become as independent as possible, and the means in which to do so.

Young Jamie seeks greater independence in all areas of her life.  She comes to CORF’s OT department for help in this goal. How does an occupational therapist make these goals happen? Well, in the several OT observations with Jamie and Jill, it involved bouncing balls, brownies, and a modified version of “Family Feud.”

Who'd have thought?

In the Next Blog Entry: Reverse Discrimination - “ . .  . . others’ have refused to accommodate her needs, which could ironically be considered “reverse discrimination" . . . . . simply because she looks like nothing is wrong with her.”

We want to hear from you!  Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.

“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley

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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors).  Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus.  Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.