Aligning Body & Spirit

Every Catholic remembers his or her First Communion, a rite of passage when at six- and seven-years old, you join your church community in becoming one with the body and blood of Christ. Nicholas needed help from his physical and speech therapists at Wendell Foster’s Campus to overcome two challenges for this life-changing spiritual event.

In physical therapy (PT), he and Miss Sue practiced the mechanics of receiving communion. They focused on his approach to the priest, the proper positioning of his hands to receive the “body of Christ,” in this case, pieces of torn paper, then his turn to receive the cup of wine. For two PT sessions, they focused on his body movement to ensure a smooth transition between these two simple tasks. One of his two challenges down.

Nicholas experiences extensor tone, a movement pattern causing his body to jerk backwards when anything approaches his face. He also has dysphagia that interferes with his ability to swallow easily food or water. Using practice communion wafers and grape juice in speech therapy, Nicholas actually rehearsed with Miss Michele receiving the bread and wine. His first goal: eat the communion wafer in thirty seconds or less so he could drink the wine. His second goal:  simply taste the holy wine to his lips, which is required for first communion, but optional after that. Drinking the wine was Nicholas’ biggest challenge for a few reasons. First, he has to keep his head from recoiling when taking the wine goblet to his mouth. Second, he must concentrate on closing his lips around the goblet rim so he can get the taste of the wine without spilling it. Finally, he had to overcome his distaste for the fermented grape juice!

With practice and support from both his therapists, his efforts paid off! Nicholas received his first communion at St. Anthony’s Catholic Church on May 4^th without any problems. He and his family appreciate the time and effort that Sue and Michele took to help make this special day a success for Nicholas.

New Plan: Adapt. Improvise. Overcome.

Wendell Foster's Campus (WFC) Cottage staff were letting Brad down and they knew it.

Over the last few months, Brad was not regularly attending swim classes at a local health facility, or going out for bike rides outside of physical therapy (PT).  Both these activities Brad enjoyed, and when Brad was happy, he was less frustrated and slept better at night. Van availability challenged WFC staff’s efforts to get Brad to his swim class. Cottage staff also realized they did not have a plan in place to execute “Operation: Brad Gets a Life.”  Wes Gaynor, Cottage program director, explains they were unintentionally, and ironically, limiting Brad, and had to answer the question now before them:  “What are we going to do about it?”  Through this honest and insightful assessment, Cottage staff developed a game plan and made some changes in how to implement it.

First issue to address was staffing.  They realized scheduling different staff to go with Brad to the Healthpark not only stressed him out, but it was stressing the staff too!  They realized what is important to Brad is consistency; therefore, sending different staff to accompany Brad when he went to the Healthpark became counterproductive.  Management staff decided moving forward to commit one Direct Support Professional (DSP) to accompany Brad each Tuesday and Thursday morning to swim class, thus ensuring consistency during his trips to the Healthpark.  They hoped it would improve Brad’s cooperation and interest in swimming.

The second issue was transportation. Unfortunately, the reality of their situation was they only have one van.  Thinking outside the box, Cottage staff explored the use of public transportation.  They set aside budget money to cover the cost of bus passes for both Brad and his DSP for travel to and from the Healthpark twice a week.  Additionally, with a bus stop only one block from Campus, and our bus system’s ability to accommodate those with disabilities, this solution was doable.  Moreover, they learned that Brad actually enjoyed riding the bus, another plus in providing him a change of scenery and involvement within the community!

Finally, the greatest obstacle to overcome was making Brad’s swim classes a schedule priority. Staff scheduled them onto the Cottage’s weekly calendar as well as his bike rides that had gone to the wayside.  For both activities, Brad would have the same DSP work with him.

With a new plan in place, priorities set, and commitment renewed, WFC staff moved forward to offer Brad meaningful activities by eliminating potential obstacles of unexpected transportation problems and staffing issues.   Through this process, Cottage staff learned an important lesson:  no matter how you have always done something, obstacles (even organizational/bureaucratic) can be adapted, improvised and/or overcame within compliance with a little creative thought and effort.  Of course, the individuals we serve at Wendell Foster’s Campus know this fact the best; sometimes and ironically, those of us who serve to support them in overcoming their obstacles do not always remember that for ourselves.  What’s the saying about the trees and the forest . . . . . ? 

As for Brad, he would enjoy one of the most active summers he has had in a long time; and Cottage staff would witness an amazing transformation in Brad.

In the Next Blog Entry:  A Fish Called Brad - ". . surprisingly immerses his entire face into the water for approximately three or four seconds before coming back up for air!"

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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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Final Days with Nicholas

After several weeks observing in the Green Therapy Pavilion on Wendell Foster's Campus, I knew the day was coming when I’d have to stop “observing” Nicholas.  After almost two months of physical therapy (PT) and speech therapy observations with him, the day came in which I had to break the news to the little thief who stole my heart. It was the hardest thing to do.  Why?

For starters, Nicholas filled with excitement upon seeing me every time I arrived to watch his therapy sessions.  What gal doesn’t want a fella to feel like that when he sees her!  Second, hanging with Nicholas, his grandmother Mimi (who actually has a real name; it’s Linda!), Miss Sue and Miss Michele was fun.  I learned a lot, got a little exercise playing T-ball, and his observations were the highlights of my day, and usually my week.  I left feeling good about life, inspired after watching this courageous young man face his challenges, and more importantly, strive to work around them if not overcome them.  Finally, Nicholas simply elicits joy in my life, in everyone's lives.  And it’s not just Nicholas, though he’s holds a huge soft spot in my heart; all of Wendell Foster’s peeps fill me with joy, and that is why I love my work.

At the last PT observation, I told Nicholas I wouldn’t be coming anymore to watch his therapy.  His disappointment rang obvious as he kept asking me why; how do you explain to a little boy you have other job responsibilities, other people to observe, blogs to write, presentations to give, programs to manage, yada, yada, yada?  Nicholas saw his T-ball team losing a player; perhaps, maybe, a friend or “playmate” not being around anymore.  I promised Nicholas I’d come visit him at PT once in a while to see him.

Later, when I did visit with his Mimi to get more information for the blog, Nicholas exploded with excitement to see me.  Man, did that make my month!  Both his Mimi and his therapists tell me when he arrives for his appointments, he asks about me, and where I am.  A few weeks after ending my observations, I decided to get some photos of Nicholas playing T-ball outside during his PT.  Again, he didn’t know I was coming and his excitement upon seeing me filled my heart.  And of course, not surprisingly, Nicholas made sure I was taking pictures of him, instructing me to get ready as he made a hit, or prepared to go down a slide in our Sensory Park.

My family held an estate sale after shortly after ending my observations, and Nicholas and his family dropped by.  Evidently Nicholas didn’t know where he was going and upon seeing me, he was simultaneously surprised and befuddled as he kept asking, “What are you doing here, Miss Carolyn?”  After explaining it all to him, he stuck to me like glue while his mom and Mimi shopped and I helped customers.  T-ball season began and plans to watch his first T-ball game fell through when rain cancelled it, so we planned another date to cheer on Nicholas when he takes the field.  Just yesterday (at the time of this writing), Nicholas “tryked” his way down to my office in the Administration building to say “hi” during his PT session.  Miss Sue said he again asked for me, so they decided to swing by and pay me a visit.

Nicholas is such a blessing in my life, and I have no doubt in others’ lives.  What a valuable and significant contribution he makes to this world by simply being him!  I think about him all the time, and ask both Sue and Michele when I see them how he’s doing in therapy.  I keep up with him on Facebook through his mom Carol, and occasionally run into Mimi at the school where she works when doing community presentations. And occasionally Nicholas drops by my office during PT to say "hi."

And who says it isn’t a small world?  During observations, I learn Nicholas is my neighbor who lives just down the road from me.  Once in a while I see him riding on their “Gator” with his mom or Mimi.  I’ll honk as I go by on my way home from work when Nicholas playing in the yard, and he's fussed at me for not stopping  to visit him, so recently I did.  I received the grand tour of his playroom, the swimming pool area, and his collection of several battery-operated vehicles just his size.

Keep going, Nick!  Keep going!

In the Next Blog Entry:  The McRap: “Joey breaks into his McDonald’s rap for everyone in the department.  Willie grins at me as he listens . . . . . verbally tells Kristy and me, ‘crazy’. . . .”

Blogger's Note:  Stay tuned for "the rest of the story" with follow-up chapters on Nicholas' T-ball adventures.

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.

Here Batter, Batter!

“Play Ball!”  Nick announced upon arrival to his physical therapy (PT) session at the Green Therapy Pavilion he’d signed up to play T-ball this summer and is ready to take the field!  Previous PT sessions included teaching and even practicing T-ball skills.

Now, listen, I watched my nephews play T-ball.  They approached the T-stand bat in hand to swing at the ball sitting on the tee.  Chaos ensues as a dozen or more four to six-year-olds run around in utter confusion. Watching Nick practice with Sue, his physical therapist, made me realize there’s more to T-ball than what I just described if kiddos are coached well.  More importantly in Nick’s case, he must understand how to handle himself physically in order to prepare for the physical demands of the sport.

Previously, Nick ran the bases in a haphazard direction within “our playing field.”  After showing him once how to run the correct sequence of bases from first around to home plate, Nick had it down after a trial run.  In today’s session, we work on new facets of the game.  As Mimi comes up to bat, Sue shows Nicholas how to prepare as an outfielder for the batter’s hit: head up, keep eyes on the batter, and knees slightly bent to be on the ready to go after the ball.  This effort facilitates the management of his balance challenges.  For weeks, Sue has been working with Nicholas to squat v. sit on his knees during activities.  I recently learned that only two years earlier, Nicholas couldn’t walk without holding someone’s hand!  Today, he not only walks without assistance, he runs!  Once again awe-struck, I’m convinced of the power of early therapeutic intervention.  Nick manages his crouching position well as he defends his field position;  although by the end of our “game,” Nick’s showing signs of tiring, and becomes a little less diligent about the mechanics.  The practice helps him build his stamina and strength.

Another facet of play involves being a team player.  I remember T-ball kids letting the ball go by them, getting the ball and hanging on to it, and/or throwing the ball in a direction that made no sense to the play in motion.  Yes, they were four-, five- and six-year-olds, but I don’t sense Nick will be one of those kids.  If anything, Nicholas will most likely be giving orders like a team manager about what to do!  Sue teaches Nicholas to throw the ball to another team player who is closer to the base runner so that person can tag him out.  Previously, our play involved Nick or any one of us chasing the base runner around the bases.  This new technique builds Nick’s coordination and throwing precision.  We practice team work.  Mimi makes the hit and Nick throws the ball to Sue who attempts to tag Mimi out.  We practice this play several times as each of us take our turn at bat.

More significantly, Nicholas catches the ball.  An earlier PT session involved bouncing a larger ball to Nick for him to catch.  Cerebral palsy (CP) sometimes causes a movement pattern called extensor tone, causing the individual to respond in a reflexive stiffening reaction to touch.  In Nick’s case, he jerkily recoils whenever anything comes towards his face or body.  Nick struggles to catch the large ball the first few times, rearing his head and sometimes, his whole body backward in this extensor tone response.  Sue directs him to keep his head down and eyes on the ball as he catches it.  Mimi and I chuckle as Nick  intently follows Sue’s instructions by lowering his head down, eyes to the floor as he waits to catch the ball rather than upon catching it.  Eventually, Nicholas masters the move, and with time, that CP reaction will work itself out to become more manageable.  It takes baby steps and I have no doubt Nick will get there.

Back to the game at hand:  The T-ball comes to me, and I pass it off to Nicholas so he may tag Sue for the out since he’s closer to her.  Viola!  Nicholas catches the small ball easily and makes the out!!  In another play, he gets the ball and passes it off to Mimi who makes the out.  All three of us cheer, remarking how well he did at passing and catching the ball - very focused and controlled to its intended recipient.  And his catches were without a mitt!  Adding the mitt to this process will be another next step in Nick’s readiness for T-ball.

Miss Sue and I can’t wait to watch him play T-ball this summer on the field!  We may witness chaos of which Nicholas may contribute, but we’ll be proud to witness his T-ball goal manifest.

In the Next Blog Entry: Facing my Kryptonite - “As I move into speech therapy observations of Nicholas, I’d have the opportunity to master my resistance to my kryptonite.  . . . He’d look at me with eyes seeking to impress . . . . and I wasn’t going to let the little guy down, no matter the threat . . . ”

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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.

Keep Going!

Today’s blog chapter is written by Nicholas’ physical therapist, Sue Carder.  Sue has been a physical therapist for thirty-three years, spending fourteen of those at Wendell Foster’s Campus (WFC) in its Green TherapyPavilion, a comprehensive outpatient rehabilitation facility (CORF).

Nicholas first came into my life as a physical therapy (PT) outpatient in June 2009 after he turned three years old. He previously received therapy services at his home through the First Steps program, but had “aged out” of the program and needed to continue with his therapy.  What I saw coming in my clinic door was a spirited little guy who alternated between wanting to do everything himself, yet still wanting his Mimi there in case he needed a few hugs. He was wearing braces on both of his legs and walking like a newborn colt – a little wobbly and feet not always going where he wanted them to go.  He had trouble speaking clearly and it took a few weeks for me to become accustomed to it and understand everything he wanted to tell me – and he wanted to tell me a lot!  He needed his hand held to walk, couldn’t go up and down steps without his hand held, couldn’t run or jump and couldn’t catch a ball.

Fast forward three years and now Nicholas speaks well enough to call me on the phone himself to announce his presence when he comes to PT.  He can go up and down steps by himself, but still needs to hold the rail.  He can ride a regular two-wheel bike with training wheels.  He can jump forward a foot or two without falling down (unless he wants to fall down).  He can throw a ball toward someone with pretty good aim.  He can do all these things with no braces on his legs.

Right now his biggest dream is to play T-ball.  He has worked all winter on learning how to hold a bat, swing it, hit the ball off the tee and run the bases.  Recently he has worked on finer points of the game, like throwing the ball to a teammate to get the runner out.  Our team is usually Nicholas, Mimi and me, and I can assure you that Nicholas is also the team manager.  He decides everything – what the line-up is, who is going to play in the outfield and where the bases are.  His first actual team practice is today and I wish I could be there to watch.

As a therapist it is always gratifying to see your patients meet their goals.  This six-year-old boy’s goal is to play T-ball and through hard work on his part and also on the part of his family, he is getting a chance to do that.  Will he be the “best” player on his team? Probably not, if all you look at are speed and strength.  Will he be accepted as a member of whatever team he is placed on?  I sincerely hope so and I’m sure that whatever he may lack in speed and strength will be more than made up for in heart and soul.

I hope his coaches and teammates learn from him the same things I have learned from Nicholas.  Lessons such as:

• If you stumble, get up and keep going.
• If you make a mistake, laugh it off and keep going.
• When you finally accomplish something you’ve been working on forever – give high fives all around!
• Never give up – even if the odds are stacked against you.

In the Next Blog Entry: Here Batter, Batter - “Nick manages his crouching/squatting position well as he defends his field position; although . . . . Nick’s showing signs of tiring, and becomes a little less diligent. . .”

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. 

Play Ball!

I would make a terrible fly on the wall.  If I were a fly on a wall, I wouldn’t stay put.  I’d be buzzing around, participating in other people’s business when I am suppose to be like the fly on a wall watching what goes on.  You know, “What I wouldn’t give to be a fly on the wall . . . .”  Initially in my first "observation" of Nicholas, he’s aware I’m there to "observe," and makes sure I’m paying attention to him and watching what he does instead of talking to his Mimi!  But as the session gets underway, Nicholas tires of me simply watching; he decides I am to be an active participant in his therapy.

Nicholas wants to play T-ball.  It’s his goal, and it will happen, I have no doubt.  So the first session I observe involves acquainting Nick to the basic concepts of T-ball and the equipment.  Sue Carder, Nick’s physical therapist, purchased a T-ball stand, a bat, and a ball similar to the one they use in the sport.  Goals for the session:  teach Nicholas how to hold and use the bat and how to swing at the ball on the tee.  After stretches, Sue gets the equipment and shows it to Nicholas who gets excited.  We move to the open “gym” area to set up the T-ball field.  There are no bases per say, and that’s the least of our priorities.  (“Our priorities?” As if! Shoo fly, shoo!)  Sue sets up the T-ball stand, placing the ball on the floor beside it.  Nicholas can hardly wait and starts to place the ball on the tee, but Sue redirects his attention to the bat.  She proceeds to place the bat in Nick’s hands, showing him how to hold it and the correct placement of his hands on it.  She stands behind him and shows him how to swing the bat, then how he’ll swing it at the ball sitting on the tee.  At this point, she puts the ball on the tee and again, Nick is ready to start swinging, but Sue reminds him first things first.  “How do you hold the bat?” she asks.  He places his hands incorrectly, and she helps him correct them.  Then together, they do a practice swing or two towards the ball.  Once he’s set up, she moves away to let him take the test swing by himself.  He hits it off the stand, but that’s not enough for Nicholas!  He starts haphazardly running no where in particular!  Caught off guard, Sue grabs the ball and  then Nicholas to return him to "homeplate" to show him how to run bases.  Then, she “chases” after him to tag him out, but Nicholas makes it back to "homeplate!" Safe!

Nicholas wants Sue to bat next but with a little encouragement, Nick steps to the plate to take another hit.  She reminds him of his hand position on the bat, which he corrects with a little guidance.  His next swing knocks the ball across the room towards me!  So, I go get it as he proceeds to “make his way” around the “bases.”  I start after him, ball in hand, "trying to catch up” with him.  I fail.  Nicholas scores again!  “Now it’s your turn!” he insists, pointing to Sue.  Sue gets a hit and Nicholas goes after the ball while Sue “runs” around the bases.  Nicholas closes in and BAM, he tags her! She’s out!  Nicholas then announces with a pointing finger towards me, “It’s your turn to bat, Miss Carolyn!”  One “strike” later, I knock one off the tee and start around the imaginary bases.  Nicholas moves to get the ball, and begins his chase to tag me out!  OHHH!  He succeeds, most pleased with his efforts.  Sue encourages him to bat again, and he does.  Nicholas initially holds the bat incorrectly but this time, before Sue can say something, he realizes it and corrects his hand position himself.  Awesome!  Despite all the odds against him upon his birth, Nicholas is one smart cookie.

You and I take for granted these baby steps of success towards our efforts in achieving a career goal or a weight loss goal or whatever.  At the Green Therapy Pavilion, mini-celebrations happen daily.  I’m told in traditional therapeutic settings, focus is less about the small successes and more about the final result.  For our therapy outpatients, these small successes are the building blocks to long-term success and ability.  They work hard to take these small steps forward which build eventual milestones.  As I observe our therapists at work, as well as our clients in their therapeutic work, I recognize the privilege I’m given to witness these small miracles over the stretch of several observations.

I’m sure the therapists find my marveling at such things amusing, but I’m willing to bet they once felt the same way when they began their study and practice of their profession.  Otherwise, what would have kept them hooked in the work they do?

In the Next Blog Entry: Guest Blogger Sue Carder shares her experience working with Nicholas in Keep Going! - “Nicholas is also the team manager.  He decides everything – what the line-up is, who is going to play in the outfield and where the bases are. . . . ”

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
Please share our blog with others via Facebook, Twitter, or email!  Follow our blog!  Click on “Join our Site” below.

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.

The Heart Thief

Very rarely in life do we meet someone who steals your heart in an instant; someone who after briefly meeting him or her you know leaves an impression on you, on your heart and your soul for the balance of your life.  Nicholas was one such rarity, and this little burglar stole my heart.

Nicholas, a.k.a. Nick, is a little boy that’s full of energy walking around the therapy reception area like he owns the place. As he walks, you notice Nick’s slightly jerky gait, each step seemingly overemphasized as if effort is made to work his legs within their stride.  He wears glasses with lens thicker than most, accentuating his big brown eyes even more.  His tousled hair is curly, but short enough that it looks wavy.  His mouth protrudes as his lips are always open, an effect of dysphagia.  Nicholas struggles with swallowing, which is automatic for you and me.  Because of dysphagia, Nicholas sometimes has saliva hanging from his bottom lip of which he is unaware unless reminded by his maternal grandmother which he calls "Mimi."  When Mimi says “Nick, swallow,” Nicholas seems to slurp the saliva hanging back into his mouth. The first time I see and hear Nick do this, I’m reminded of a long-tongued reptile catching a fly into its mouth.  And I chuckled a time or two because sometimes, Nick would just simply take his arm sleeve and run it across his mouth to wipe it off.  He’s definitely all-boy.

Nick’s features, his speech, his physical presentation distinguish him from other children his age, but his mental acuity and personality outshines any physiological deficit he has.  Upon arrival, Nick walks past the Pavilion’s reception check-in area to move around the corner to enter Kay’s (Green Therapy Pavilion's business manager) office.  Here, they carry out their weekly routine in which Nick goes to Miss Kay’s desk to call his physical therapist, Sue Carder, to announce his arrival for his appointment.  Nick and Kay visit until Sue comes to get him for his session. 

Nick is a sharp kid and very little gets past him.  I’m later told by his speech therapist, Michelle Clouse, Nick scores above average on the cognitive scale.  Sue and Mimi also tell me Nick asks everyone he meets what kind of car they drive, and how he remembers it weeks after collecting the data.  Mimi shared that once while driving around town, Nick pointed out a Buick announcing that was the car that Miss Sue drives.  At my second observation, Nick remembered not only who I was, but greeted me by name.  I know adults, myself included, who can’t remember someone’s name after one meeting!  Nick never asked me what kind of car I drive until later when Mimi and Sue pointed out to him he hadn’t asked.  My vehicle information is now stored in his data bank.

The entire building knows when Nicholas is “in the house.”  After a few sessions, Nick brings in those “World’s Finest” candy bars students sell as a school fundraiser.  In this task, Nick unleashes his inner salesman.  Upon arrival for his appointment, he immediately is asking Kay, Sue, me, and anyone who walks by if they want to buy a candy bar.  When someone asks how much they are, he tells them “They are one dollar, but you can get five for five dollars.”  Nick brings his candy bar inventory two weeks in a row, and within ten minutes over two appointments, he’s cleared at least twenty dollars in sales.  Word on Campus is Nicholas won several of the top sales prizes at his school.

In spending time with Nick, I enjoy getting to know his mom Carol, as well as his grandmother, affectionately called Mimi, and his therapists, Michele and Sue.  Nicholas is truly the mortar cementing these relationships between us, and I have no doubt countless others.  He’s a kiddo that fought against all odds to be in this world, to live the life God gave him.  I have no doubt he has some life purpose to be fulfilled all in good time.  But today, Nicholas enjoys his life and all that he’s able to do with it and within it.  He gives his best (usually) in therapy to improving his abilities, with a determination that seems ready to take on the world.

After all he’s been through since birth, I can only imagine that taking on the world would be a piece of cake for Nicholas.

In the Next Blog Entry: Chucky Cheese or BUST! - “. . . . I offer my hand to Nick, which he takes and asks me if my name is Carolyn as if he’s logging the information in a databank. . . . .”

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Against All Odds

Meet Nicholas.  He was born under the worst possible circumstances.  All ultrasounds were normal, including the one they did the day of his premature birth.  Seven months into her pregnancy, Nicholas’s mom suddenly experienced a uterine rupture, a life threatening event for baby and mom. Fortunately, both survived but Nicholas went without oxygen for approximately two minutes during the emergency delivery, an oxygen deficit causing brain damage, and ultimately, cerebral palsy.

The severity of Nicholas’ oxygen deficit became quickly evident.  Doctors immediately performed a tracheotomy to assist with his breathing.  When he wasn’t swallowing, a belly feeding tube was inserted so he could be fed.  Nicholas was taken to an Evansville hospital’s neo-natal care unit for more intensive care for his medical needs.  He wasn’t expected to survive.

Once he proved doctors wrong, Nicholas wasn't expected to function like a normal little boy.  He moved his arms and legs very little.  Even upon initial assessment by his medical team, they felt all physical abilities would be severely limited and he’d be dependent on others for the rest of his life.  Nicholas would remain in the hospital for seven weeks.  Mom and Dad were the only ones allowed to visit and hold him.  Nick’s older brother had to wait almost two months before meeting his little brother up close and personal.

Fortunately, early intervention with physical therapy began before Nicholas even left the Evansville hospital as nurses gently moved and worked his motionless arms and legs.  After coming home, therapy continued through First Steps, a Kentucky Early Intervention Services program offered through Green River District Health Department.  This program provides services to children, birth to 3 years old with developmental delays or established risk diagnosis and who are in need of intervention.  Intervention services offered for children include evaluations and assessments and physical, speech and occupational therapies as well as developmental intervention therapy.

When he was almost one year old, Nicholas began speech therapy through the First Steps Program with a Wendell Foster’s Campus (WFC) therapist specializing in eating and swallowing challenges.  When “Miss Michelle” met Nicholas, he still had his tracheal tube in, and as others did before her, she thought he’d live with severe physical limitations.  Nick could not hold his own head up for long, and he couldn’t sit up or maintain balance without help.  He continued to have physical and speech therapies at home until he turned three, at which time he started coming to WFC’s Green Therapy Pavilion for therapy. 

Three years later, I am graced with the blessing to meet this little boy and his family during my therapy observations.  And upon meeting Nicholas, and hearing his story, I’m left scratching my head and questioning:  Could they possibly be talking about the same little boy?

In observing Nick’s physical and speech therapies, I come to better understand the power of early therapeutic intervention in helping children diagnosed with developmental issues overcome severe limitations.

In the Next Blog Entry: The Heart Thief - “The entire building knows when Nicholas is ‘in the house.’. . . Nick brings in those “World’s Finest” candy bars . . . . . unleashes his inner salesman.”

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.

Hoops & Red Tape

Jim began physical therapy (PT) with Ryan in the Comprehensive Outpatient Rehabilitation Facility (CORF) on Wendell Foster’s Campus (WFC) in June 2011.  His PT goals:  climb and descend the stairs at least once with only minimum (25%) assistance; walk eight roundtrips in the parallel bars with little assistance, and walk ten roundtrips with a walker with 50% assistance.  Jim’s commitment is evident because within only a few months, Jim exceeded his initial goals.  As a “person-centered” facility, therapists seek to understand what their clients want to accomplish for their life and together discuss what is involved in that process.  Goals are developed; and our therapists create the “therapeutic plan” that facilitates goal achievement.  A goal can simply be “I want to easily move from my wheelchair into my bed;” a simple task to you and me, yet huge to someone with a physical disability.

But our therapists and more significantly, our outpatients face the hurdles of red tape, hoops and bureaucracy in their efforts to reach their goals.  Therapists in all the therapeutic areas share stories of how insurance, Medicare and Medicaid limit patients’ access to these needed therapies.  For example, Medicare sets a dollar amount on how much one can spend per year on therapy.  Some insurance limits the number of therapy sessions a patient can have within a year.  In one case, a child with significant developmental disabilities would benefit long term from weekly therapy session, but his coverage authorizes only twelve therapy sessions for the year, the equivalent to one appointment per month. Reasons vary for these limitations, and understandably our therapists become frustrated.  For most of our outpatients, therapy is an on-going process, not a set number of visits and “be healed” experience.  For those with developmental disabilities, therapy may be a lifelong treatment.  Just as pharmaceuticals are indefinitely prescribed and accessible to offset serious and/or debilitating health challenges such as high blood pressure and diabetes for most of one’s life, therapy treatment offsets serious physical limitations for those with cerebral palsy, promoting and facilitating healthful and functional independence.

Then there’s the red tape and hoops.  One speech therapist tells the story of how a request for coverage for a patient’s therapy was denied because it lacked appropriate information.  She highlighted with a highlighter the “missing” info within the originally submitted text of the paperwork and returned it.  The request was approved.  Another outpatient challenged an insurance hearing panel’s decision to deny additional PT coverage.  His request was finally approved after a third-party neuro-specialist reviewed his case, and deemed it not only justifiable but a necessary treatment to address his condition.  Hoops.  Red tape.  Bureaucracy.

Jim now stands before these hurdles.  He recently became eligible for Medicare, which places a maximum dollar amount per year combined for both speech and physical therapy.  His supplemental plan has a deductible; once met, it covers 80% of his therapy costs.  Since January, Jim had two physical therapy sessions a week, but recently changed to once a week because he’s closing in on his “Medicare allowable amount” for the year.  Healthcare is a big topic in today’s news, and Jim’s situation isn’t unique.  Our therapists constantly battle “the system” to ensure our outpatients receive the necessary therapeutic treatments and equipment needed to empower them to the maximum functionality in their lives.  To limit opportunities of therapy only strips these individuals’ ability and potential. I wonder how limiting its availability isn’t discrimination against those with disabilities, when opportunities abound for those of us without disabilities to reach our fullest health potential. Therapy offers those with developmental disabilities a chance to overcome limitation, and more importantly hope in the face of physical challenges.  It empowers individuals to become more independent so they may do the simplest of things they want to do.

Especially impacted are children; early intervention gives them a chance to manage and overcome long-term limitations their developmental disabilities create.  Therapy increases a young patient’s chance and ability for greater independence and mobility so he or she may thrive into their adolescence and adult life. Early intervention also develops a mindset of “where there is a will, there is a way”; they can do whatever they want with determination.  They learn at a young age not to give up on themselves when many around them, seemingly including the healthcare system, have already given up on them from the get-go.  They learn how to get around any limitation to achieve anything that any one of us can do in our daily life.

One little boy I observe proves the power of early intervention and its worth in my next PT and speech outpatient observations.  Goals can be simple:  “I want to play T-ball this spring” and “I want to eat at Chuckie Cheese.”   This observation introduces me to a six-year-old boy who started physical therapy shortly after birth and speech therapy when he was one.  I learn how important early intervention is, and my entire perception of physical and speech therapy and its value in the life of a young child drastically changes, as does my life and my outlook on it, when I meet a little boy named Nicholas.

In the Next Blog Entry: Against All Odds: “Nicholas was taken to an Evansville hospital’s neo-natal care unit for more intensive care for his medical needs.  He wasn’t expected to survive . . . . . he proved doctors wrong . . .”

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.

I’m Gonna Take That Mountain!

In my physical therapy observations at Wendell Foster’sCampus (WFC) in the Green Therapy Pavilion, I watched Ryan encourage Jim as he walked back and forth between the parallel bars, even gently pushing him to “keep on keeping on.”   I saw Jim’s determination and his exhaustion.  I sensed he didn’t like doing it, but I see in Jim a will, a determination to do it anyway.  What I didn’t see in Jim was what Ryan saw in him:  his potential to do more.

Before starting physical therapy (PT), the physical therapist conducts a client evaluation to determine and rule out physical problems, assess pain and discomfort, muscle strength, and range of motion from any joint in your body – ankles, knees, shoulders, elbows, etc.  The evaluation assesses the need for equipment to assist in the recovery and/or mobility of the client, adaptive space needs, etc.   Finally, it also determines the course of therapy treatment and the frequency of sessions needed to facilitate goal achievement, healing and/or rehabilitation.  Ryan gets a good sense of what Jim (and any of his clients, for that matter) is capable of doing as a result of this evaluation, in addition to his observation of Jim’s progress since starting therapy.  So at my next observation with Jim, I was stunned when Ryan announced Jim was going to climb the stairs!

The PT area includes a staircase that ascends nine steps up to a landing then turns left to continue up another nine steps to a larger landing resembling a loft area.  Ryan explains Jim has previously done the stairs exercise which strengthens his leg muscle and builds endurance.  This particular exercise requires the help of a PT assistant.  I sit on a bench off to the side of the stairs and watch, holding my breath to the point my body forces me to breathe as I watch Jim take one wobbly step up at a time.  Ryan spots Jim, lightly holding his waist belt from behind for balance and support as he goes up while a PT assistant stands in front of Jim on the ready in the event of a misstep.  Once upon the landing, they let Jim catch his breath for a minute before he begins his descent of the nine steps he just climbed, with spotters in place as before.  Jim does “take this mountain” twice during this session.  Both Jim and I breathe a deep sigh of relief upon his final step onto the floor.

Another activity involves Jim walking the length of the PT area with a walker.  This exercise requires three people:  Ryan who offers the majority of support to Jim by holding on to the waist belt while another person ahead of the walker helps Jim steady the device. A third person, for which I’m volunteered in this session, follows with Jim’s wheelchair so he may sit for rest breaks and as a safety precaution.  Jim travels a few round trips back and forth across the PT room, and despite these exhausting exercises, Jim never complains.

Jim shows up for each appointment twice a week; many patients who have the opportunity don’t.  Jim never quits.  Many patients do.  Jim is obviously pooped by the end of his session.  Ryan teases Jim that he probably enjoys a good nap after his PT sessions.  Jim confirms he does.

But soon, I learn Jim’s access to physical therapy is jeopardized by red tape, bureaucracy, and ironically, the health industry itself.

In the Next Blog Entry:  Hoops & Red Tape: “. . . .the red tape and hoops. . . . a request for coverage for a patient’s therapy was denied because it lacked appropriate information.  She highlighted with a highlighter the “missing” info within the originally submitted text of the paperwork and returned it. . . . .”

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.

Let’s Get Physical!

Tall, stocky and ominous in his build, Ryan Kizer is one of three physical therapists in the Green Therapy Pavilion (CORF), and the only male in the department.  He performed his clinical at Wendell Foster’s Campus (WFC) while finishing up physical therapy school, fell in love with the work at WFC, and returned after graduation to begin his physical therapy career. 

After introductions, permission requested of and granted by Jim to observe his therapy sessions, Jim and Ryan get to work.  Upon arrival, and with Ryan’s assistance to stabilize his balance, Jim mounts a stationary bike to spend anywhere from six minutes as a warm up to twenty minutes as part of building endurance.  Watching Jim transfer from his wheelchair to the bike reveals the balance challenges and weakness of his legs, as well as the mental effort he must exert to move them when and where he wants them to move.  In this transfer, Jim expends focused energy to lift his right leg over the stationary bike centerpiece to sit in the seat, then to place his feet into each pedal.  For this session, Jim is on the bike for approximately six minutes to open the range of motion in his hips, knees and ankles as he pedals, and to warm up his legs for the other strengthening exercises Ryan will have him do later in this session.

Ryan often involved Jim in deciding the day’s exercises designed to strengthen his leg muscles, increase his endurance level, and develop muscle coordination between movements.  Each session may consist of one major movement exercise, such as repetitions of walking within a set of parallel bars or walking back and forth with the assistance of a walker.  These activities might be followed with two or three muscle strengthening exercises, such as squats, side steps, and/or knee bends.  Sometimes, Ryan simply stretches Jim’s muscles.  He’s always by Jim’s side helping him mind his balance and physically spotting him with a hold on a waist belt worn around Jim’s mid-section. 

Walking the parallel bars wouldn’t seem like any big deal but if you’ve depended on a wheelchair as your main source of mobility, it’s a big deal!  Jim has some use of his legs, so one therapy goal includes regaining better steadiness and mobility on his feet with the use of a walker so he can move about within his home a little easier.  The parallel bar exercise not only gets Jim on his feet, but helps him practice the motor skill movement of putting one foot in front of the other, as well as coordinating movement of his hands grasping the bars with feet movement.  This exercise also helps him be more aware of his core balance to increase greater stability on his feet. He holds both bars, one in each hand, and Ryan moves backwards while in front of Jim with a hand lightly on his waist belt to help him maintain and regain balance if he wobbles in his efforts.  Two or three round trips later, the exhaustion is evident in Jim and on his face as he sits in his ever-waiting wheelchair to rest, despite having a minute-long breaks between roundtrips.

I thought Jim doing this parallel bar walking exercise was a big challenge for him; but what Ryan would ask Jim to do in the next PT session baffled my mind!  One, I never would’ve dreamed Ryan would ask Jim to do this next PT exercise which I equate to his “climbing a mountain”; and second, I realized I completely underestimated Jim and what he’s was capable of doing, and willing to do to better his mobility, reminding me again to not underestimate people’s potential or their determination!

In the Next Blog Entry: I’m Gonna Take that Mountain:  “I sit on a bench off to the side of the stairs and watch, holding my breath to the point my body forces me to breathe as I watch Jim take one wobbly step up at a time. . . .”

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.