The Jaw Jitterbug

I would observe several speech therapy sessions with Nicholas in the Green Therapy Pavilion as he learns to swallow.  Nothing prepared me for these observations, and sometimes, ignorance is bliss because I may not have followed through on them had I known what to expect.

After Nick’s physical therapy session, he, his grandmother, Mimi and I move into a small therapy room where Miss Michele, his speech therapist, awaits his arrival. Nicholas immediately takes a seat that resembles a “high chair,” elevating its occupant high enough to comfortably sit at the table. Beside Michele sits an ominous-looking machine that I notice upon arrival but prematurely dismiss.  Mimi places a bib around Nicholas’ neck, and then sets a baggy of Pringle chips and a Tupperware bowl of pink stuff in it.  My curiosity is peaked.  What does this have to do with pronouncing your words?  Finally, Mimi lays a three-sectioned small plate and a spoon unlike any spoon I’ve seen.  It’s thicker than most spoons in the handle and the “bowl” (the part that holds our soup, cereal, etc.); a strap attaches from the tip of the handle to the “shoulders” of the spoon (where bowl meets handle) so a little hand can fit under it.  As I take in the scene with great perplexity, I begin to realize that ominous machine would be a major player in this therapy session.

My mind is racing for understanding.  Is he going to eat?  How can he practice his speech while he’s eating?  You can’t speak clearly and eat at the same time, even I know that!  I keep my mouth shut and continue observing.

Michele begins prepping sticky pads that are wire-attached to the machine which has a big fancy name; I just call it the “stim machine.” My memory kicks in as I remember receiving electrical stimulation in my neck and shoulder muscles when I was having issues thanks to spinal misalignment. My chiropractor placed the sticky pads in just the right spot before turning on the stim machine.  Mild electrical “tingles” go into the muscle area.  It reminded me of growing up on a farm with electrical fences; you never grabbed those or you were in for buzz shock, enough to scare a kid and discourage a cow attempting to make a pasture break.  These electrical stim machines have much milder current and can be adjusted with a dial to intensify or decrease the current.  My muscles would do the “jitterbug,” jumping, contracting then relaxing under the electrical current. So, literally, it stimulated my muscles without me giving them a thought.

Michele’s goal was to stimulate Nick’s muscles.  Once the stim pads were prepared, Michele begins placing them on Nick’s left and right side of his jaw.  This task challenges Nicholas extensor tone, a movement pattern that causes his body to react by moving backwards and stiffening when something comes towards his face or body, even his own hand.  Nick’s little body involuntarily jerks back in reaction as it resists whatever comes towards him, in this case, Michele applying the stim pads.  Nicholas stiffens, his body, especially his upper torso rocking backward in response.  This effort causes mild duress, would even upset him sometimes, but with Mimi’s support and grandmotherly comfort, Michele would get the pads adhered to the areas just under his jawbone.  Sensing my utter confusion, and perhaps to ensure I knew she was torturing the poor kid, Michele explained what she was doing and how the electrical stimulation activates and strengthen his tongue muscles to help him with his chewing and swallowing exercises.  Finally, I realized the crux of his therapy was to offset the issues of dysphagia.  Michele did work with Nicholas on his pronunciations as a “break” from eating/swallowing exercises; but most of the 45-minute session focuses on helping Nicholas regain his swallowing capability, strengthening his tongue and oral muscles, and literally, teaching him how to eat solid food.

Preparing for the speech therapy session took between 5-10 minutes depending on how well the sticky pads on the stim pads would work, Nicholas' cooperativeness with their placement under his jawbone, as well as his patience with the prep process.  Nicholas came from a physical workout and T-ball made him hungry.  He couldn’t wait to get started on eating his strawberry yogurt, but he didn’t always care much for the rigamirole involved.

Now, it became time for me to face my “kryptonite” as the next portion of the therapy session began.  Gulp.  Breathe deep.

In the Next Blog Entry: Saliva Trivia - “As Nicholas raises a spoonful of yogurt in his hand . . . . his extensor tone kicks in. His body goes one way, the spoon goes another, and the yogurt, well, everywhere.”

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The Swallow Breakdown

When I first meet Nicholas, the intention was simply to observe his physical therapy sessions.  Upon learning that he had speech therapy following PT, and with an invitation by his mother, Carol, and grandmother, Mimi, I decided to observe both.  I had no earthly idea what I was in for when it came to the speech therapy observation!

Michele Clouse, Nicholas’ speech therapist, has worked with Nicholas on his swallow challenges since he was approximately one year old.   Dysphagia is a Greek word that means “disordered eating,” referring to the difficulty in eating as a result of disruption in the swallowing process.  This condition is dangerous because there is always a risk of aspiration (taking food or water into the lungs) which causes pneumonia, dehydration and malnutrition, and choking.

Dysphagia affects one’s ability to manipulate the tongue. The next time you eat or drink something, pay close attention to what goes on inside your mouth.  Your mouth opens to take the bite of food.  Your jaws operate to move up and down to chew.  Most importantly, and without any conscious effort, your tongue moves the food around in your mouth: to get to the molars that grind tougher foods;  shifting food that’s stuck in the middle or front of your mouth not getting chewed;  pushing food in the front of your mouth to the back molars to be chewed.  Your tongue is constantly in motion but you and I don’t give that much thought to the effort because it’s automatic.  We learned this swallowing process as babies; our swallow is instinctive from when we first take a bottle.  As we moved from bottles to baby food to solid food, our swallow becomes more sophisticated.

Okay, now that you’ve chewed, try not to swallow.  What’s happening?  Saliva is activated by taste, even the smell of food, and begins to accumulate along with the chewed food in your mouth.  If you think about swallowing too much, you may find yourself having trouble actually swallowing!  But if you manage to make that swallow, you’ll notice the tongue again shifts, kind of like doing a wave in your throat, from front to back.  It presses down in the front as it prepares to open the esophageal passageway (because if it was wide open all the time, whatever we put in our mouth would simply slide down with no control, thus the risk for aspiration!) then waves to the back to push the food down the throat.  Crazy, isn’t it?  Our tongue serves as a major muscle in the eating and drinking process.  Without its function, we can’t swallow. 

With only a snippet of familiarity of Nick’s case, I’m going into speech therapy with Nicholas thinking he’s going to get some help with the pronunciation of his vowels and consonants.  Wrong!  What I didn’t realize is dysphagia is a big piece of the verbal interference.  Our tongue, along with our lips and jaws, supports our ability to pronounce and sound out the letters against our teeth, via the form of our mouth, for example, when saying “o.”  I had no idea that speech therapy also involved working with swallowing issues.  The dots in my understanding started connecting into a clearer picture of what all our therapists do at the Green Therapy Pavilion. I’m willing to bet you didn’t expect to learn so much about your mouth, tongue, and swallowing, did you? 

Nicholas, Carol, Mimi, and I move into a small therapy room where Michele awaits his arrival with this big machine.  Little did I know our adventure would gets even more interesting, and eventually messier!

In the Next Blog Entry: The Jaw Jitterbug - “Nicholas stiffens, his body, especially his upper torso rocking backward in response.  This effort causes mild duress, would even upset him . . . .”

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Facing My Kryptonite

I have a confession to make:  the oral secretions, a.k.a. “saliva hangers” have been the most challenging for me in this whole experience at Wendell Foster’s Campus (WFC).  Any bodily discharge has been my “kryptonite” since childhood. It’s why I changed my major from nursing to theater arts.

Drool, runny noses, and throw-up have long been a trigger for my sensitive gag reflex.  Evidently, I take after my mother in this respect; I’ve never lived down the legend of the “finger-painting” incident.  During dinner one evening when I was almost one, mom and dad smelled something afoul in the air.  Upon further investigation, they discovered me finger painting the wall next to my crib with the contents of my diaper.  My dad immediately lost the spaghetti dinner he was enjoying earlier.  A deal was made between my parents right then that dad assumed all throw-up responsibilities while mom handled all affairs of the hind end.  Mom easily gagged when it came to vomit, and even if she had to deal with it in his absence, she struggled with it.  Poo I can do; like mom, like daughter.

I’ve seen some pretty gnarly stuff in my day:  blood; open head wounds; crazy stuff during nursing school.  No sweat.  But my stomach weakens at excessive nasal and oral secretions.  Even when my nephews were babies, cottage-cheesy textured spit-up left me grossed out and heaving, as does dog throw-up and kitty hairballs.  Before and while dealing with it, I have to leave the room several times to calm my gag reflex.  Hocking loogies? Forgeddabout it!  My mom tirelessly tried to get me to do the “hock and spit” technique when I was sick as a kid.  Only in recent years have I been able to cough stuff up from my chest to spit into a Kleenex; my gag reflex still reacts, activating my diaphragm into waves of tight heaves.    

So at WFC, facing my “kryptonite” has been a challenge.  I know many get turned off by drool and saliva hangers, but physically, there’s a logical and understandable explanation for it.  Without the ability to swallow, saliva collects in the mouth, and well, it has to go somewhere!  Understanding this physiological condition of cerebral palsy helped me find greater compassion, though I still must consciously deal with my physical reaction to it.  These therapy observations helped desensitize my reaction to the oral secretions, but I remain ever mindful as to how I respond upon seeing it.
 
As I move into speech therapy observations of Nicholas, I’d have the opportunity to master my resistance to my kryptonite.  Given Nicholas has a belly feeding tube, his speech therapy involved learning to take food orally, how to chew, feel the food in his mouth and essentially, learn to swallow.  This process means he’d lose most of what he puts into his mouth, both saliva and food.  And with God as my witness, I was not going to give Nick any indication I was struggling to watch him in my observation.  He’d look at me with big brown eyes seeking to impress with his valiant efforts and, of course, to make sure I’m watching!  I breathed deeply, a lot, in these sessions.  My acknowledging his effort was important to Nicholas, and I wasn’t going to let this little guy down, no matter the threat of rebellion by my gag reflex. 

Watching Nicholas in speech therapy  at the Green Therapy Pavilion would be my biggest test yet since arriving to WFC, facilitating a show-down with my kryptonite. These next observations also help me better understand the challenges many of our outpatients and Campus friends face with food intake.  And the effort on my part was worth it as I watched our speech therapist Michele Clouse work with Nicholas as he continues his journey towards his ultimate goal:  eating at Chuckie Cheese.

In the Next Blog Entry: The Swallow Breakdown - “I’m going into speech therapy with Nicholas thinking he’s going to get some help with the pronunciation of his vowels and consonants.  WRONG!”

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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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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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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.

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Chucky Cheese or Bust!

When I first meet Nicholas, he’s helping Sue Carder, a physical therapist with Wendell Foster’s Campus’ (WFC) outpatient rehab facility (CORF), make copies by pushing the “copy” button on the machine.  Sue introduces me to Nicholas, telling him that I will be observing him in his physical therapy (PT) sessions.  Upon introduction, I offer my hand to Nick, which he takes and asks if my name is Carolyn, as if he’s logging the information in a databank.  In this first exchange I notice Nick’s speech impairment.  His grandmother Mimi stands close by and “translates” his slurred pronunciation to be sure I understood what he asked.  Sometimes you can make out what he’s saying, other times not so much.  I learn Nick also takes speech therapy which follows his PT appointment, and thus, I am invited to observe both therapy sessions for a few weeks.

Sue has worked as a physical therapist for thirty-two years, fourteen of those with CORF.  Before clients start therapy, evaluations are conducted to assess their abilities and challenges, to discuss client and/or family goals they seek to achieve through therapy, and then to develop a plan.  Nicholas began physical therapy at CORF three years ago.  At this time, he wore braces on his legs that helped support him in standing.  He couldn’t walk without them or without holding on to someone’s hand or something.  Today, Nicholas wears no braces (removed in 2011) and walks, even runs without any assistance!

Nicholas is an amazing little boy with a charming personality.  Despite all odds, he has overcome a great deal to be the active little boy with determined goals to play T-ball in the spring and eating a meal at Chucky Cheese one day.  Nicholas’ curiosity easily distracts him during his physical therapy sessions.  Active and ready to go, he’s eager to learn, to do, and to be.  A country boy that likes to keep up with his big brother Jake, Nicholas abounds with energy, never one for sitting still.  He believes he can do anything despite his physiological challenges, and doesn’t shy from trying.   Nick is sociable and confident enough to do anything, including selling candy bars to women who are on Weight Watchers!  Nicholas seems to want to take on the world.

Some of Nick’s physical challenges include balance and coordination, especially when it comes to climbing stairs and playground ladders.  Nicholas exudes greater confidence in his ability to do so than we adults watching him as he tackles Sensory Park’s Jungle Gym.  His PT goals include: keeping his ankles limber as he grows; further strengthening his leg muscles; greater endurance in running, and; coordination and control in throwing and hitting a T-ball.  All the goals are in effort to physically integrate these typical childhood movements in facilitation towards their being effortless and automatic.  Because of his physical challenges, the process of early intervention in therapy is like “rewiring” or reconnecting the brain’s communication of what Nicholas wants his body to do with the part of his body with which he wants to do it.  With consistent practice, focus, and repetition, Nicholas incorporates into his physical presentation some movements that are closer to what’s natural to children his own age without developmental issues.   He will always be physically challenged, but PT’s ultimate goal is that he functions with little impairment to the best of his physiological ability.

In my first observation, Sue begins by stretching Nicholas’ feet and ankles to ensure limberness as they continue to grow.  It also provides a good warm up for his physical activities.  Knowing Nicholas wants to play T-ball this spring, Sue purchased a T-ball stand, bat and a ball for the young budding baseball player of tomorrow.  The Green Therapy Pavilion has a large open space in the center of the building that connects all the therapy areas:  speech, occupational, hydro- and physical therapy.  Also in this area is a basketball goal.  Yeah, it’s that big!

Sue tells Nicholas she has a surprise, and pulls out the T-ball equipment.  He becomes very excited as the prospect of playing T-ball becomes more real to him.  We move to the large open space to set up the equipment to continue the therapy session.

And it’s here we will “Play Ball!”  Yes, even me, ever the “observer.”

In the Next Blog Entry: Play Ball! - “Initially in my first observation of Nicholas, he’s aware I’m there to observe, and makes sure I’m paying attention to him . . . . ”

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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. . . . .”

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.

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
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.