A Will and a Way

Through my observations of speech therapy with Kenny, I learn how our society of the past abandoned, even gave up on individuals with developmental disabilities, thus limiting their potential.  I realize the limited resources historically unavailable to children such as Kenny when he was a child, especially in various parts of the state.  I understand how family support, encouragement, and involvement are critical to helping their children successfully overcome the challenges of developmental disabilities.  We often hear the “no child left behind” motto related to educating our children.  When I consider the amazing journey and challenges faced by individuals I’ve met with cerebal palsy, such as Nicholas, and the resources available to them today, compared to Kenny who never received an education or much therapy, I wonder how so many others with developmental disabilities were “left behind” over forty years ago.

Kenny and I are the same age, forty-seven.  I have little memory of “special ed” students (as they were called in my day) in my elementary school.  Were they kept isolated from the rest of us or did they even go to school?  Known today as children with special needs, many are now incorporated into the schools, some in mainstream classes, most others in their own classrooms according to their challenges.  A few schools in our Owensboro community integrate these students somewhat, encouraging peer interaction and inclusion.  Interestingly, I notice a trend in my speech therapy observations where a few Campus members don’t know how to read, leaving our speech therapists to teach them the basics  of English that you and I learned in first grade.

In my observation, Michele Clouse, Kenny’s speech therapist, asks me to “interview” him with simple questions he can answer on his communication device.  The exercise provides Kenny practice using his device and finding the related answers on its menu.  This experience brought home the reality of the patience required when communicating with those who have verbal challenges!  Upon asking Kenny where he lives, I realize the excruciating silence that lingers between us as he searches and considers how to respond on his communication device.  I also realize once again how impatient I am and how I take for granted my ability to easily converse with someone with so little effort.

As Kenny searched for the response, I sensed in him hesitancy, perhaps even a lack of confidence as he seemed to struggle to find the correct menu option on his device.  In addition to his verbal challenge, Kenny has limited left-side vision which impairs him visually when reading the device menu options.  In what felt like an eternity between my asking the question and Kenny finding the answer on the menu option, I realized my naiveté in thinking Kenny and I would have a conversation similar to one I have with friends.  I felt Kenny’s frustration in his ability to answer quickly, his struggle to find the right menu selection, and perhaps, the pressure he felt to “perform” well to please Michele and impress me. Any impatience I had melted into compassion as I waited, listening to Michele gently coach Kenny with clues and reminders of abstract symbols or sight words.  My heart ached that people in Kenny’s life short-changed his ability to learn, and the opportunity of an education.  Then, a pang of anger swells at the injustices by a school system of the past: for not caring enough to find out why Kenny didn’t return to school, and for not encouraging his family to get him there anyway.  And, my heart simultaneously softens as I remember this man chose to face the added challenge of learning how to read after all these years so he may have a more meaningful way to communicate with the people for whom he cares, and the world.

When the human spirit wants to communicate, and there is a will, then there is a way.  Whether through body language, vocal sounds from the throat, behaviors, sign language, communication devices, notepads, you name it, one will find a means in which to communicate.  Parents figure out their newborn’s communication system of crying and each cry’s different meaning.  Helen Keller who communicated through what many misconstrued as unruly outbursts of behavior learned to communicate when given the tool of sign language, the patience and determination by Annie Sullivan to not give up on her until the day silence was broken with simple movements of fingers in the palm of a hand.  Christopher Reeve and Stephen Hawkins found the technology to communicate their life-inspiring messages to the world.

Individuals with developmental disabilities, especially children, simply need the tools, direction, patience, and most importantly, the faith and belief from those who support them in finding their voice - our speech therapists.  In finding their voice, the individuals we serve are empowered people to speak their minds and hearts, to ask for what is important to them and for them, to connect and relate with others, and to share that unique part of who they are with the community, and the world.  Just like you and me. 

Our speech department offers hope to those we serve on Campus and those in our outpatient services; a hope that one day they may be understood and heard.  My thanks to the department for sharing a small piece of their invaluable contributions to those we serve on and off our Campus!

The observations next take me to occupational therapy where I meet two sweet young women named Jamie and Jill.

In the Next Blog Entry:  Job Therapy - "Young Jamie seeks greater independence in all areas of her life. . . . in the several OT observations with Jamie and Jill, it involved bouncing balls, brownies, and a modified version of “Family Feud.”

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A Ladies Man with a Remote

Kenny came to Wendell Foster’s Campus in 2004 and lives in a Supports for Community Living (SCL) house with two other roommates.  Forty-seven year old Kenny received no formal education as a child in Cadiz, Kentucky and very limited therapy before arriving to our Campus.  I’m told Kenny went to school on his first day as a child and never went back.  Now independent in his power wheelchair, Kenny gets around on Campus at a notoriously break-neck speed in the hallways.  He  also tends to "rubberneck” at other goings-on, thus not paying attention to where he’s going, and as a result, run into things!  Kenny also exclusively has in his possession hanging around his neck a special remote control that opens all the handicapped-accessible doors on Campus.  Ever a flirt, this Casanova loves opening the doors for the ladies with it.  Kenny sometimes has his moods and no words are needed to know when he’s in one.  The scowl on his face, or the look he gives you when you sweetly say “good morning” says, “no it’s not” or “bug off.”  Who among us doesn’t have these kinds of mornings?

Upon meeting with his speech therapist, Michele Clouse, he had one desire:  learn how to read. Kenny speaks an occasional “yeah” or “no,” using vague gestures beyond my comprehension to communicate what he wants.  Kenny’s first step towards his goal involved learning the alphabet and their letter shapes, how they sound, then progressing to form simple sight words such as “yes,” “no,” and “you.”  From there, Kenny worked on reading simple sentences such as “How are you?” and “Yes, I can.”  This learning took place over several years, and understandably so.  Remember, therapy is a process.  During their course of working together, Michele realized that Kenny had no concept of time – how to tell it, the seasons, months, etc.  Lately, she’s been working with him on time concepts and learning numbers, which he didn’t know either.  The ultimate goal with this effort will support him in keeping track of schedules for work or birthdays, holidays, etc.

Therapy with Kenny also involves his practicing the use of his electronic communication device so he comes to rely on it more.  To use it, and because he’s unable to read, he’s had to learn a variety of abstract symbols that help him understand its menu options for communication, for example, photos of animals, food, etc.  As he’s learned his alphabet and short sight words, his use of the device expands his opportunity for greater communication.  Another one of Kenny’s goals includes becoming more involved within the community, and to do so he’ll need a reliable means to communicate his needs and wants so that people unfamiliar with his gesturing language may understand him.

During my observation, I interview Kenny, an experience that brings home the reality of the frustration by those who cannot verbalize and those who seek to understand what they are communicating.  As Kenny and I visit, I am quickly reminded how incredibly impatient I am and how much I take for granted my ability and ease in communicating!
But that impatience shifts into anger as I slowly realize the injustices of a society past as I watch Kenny struggle to respond to me, even with his communication device.

In the Next Blog Entry:  A Will and a Way - “I felt Kenny’s frustration in his ability to answer quickly . . . . . My heart ached . . . .Then, a pang of anger swells at the injustices by a school system of the past . . . .”

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Denise the Jokester

Denise’s celebrity long preceded my meeting her during my observations of speech therapy in Green Therapy Pavilion, our comprehensive outpatient rehabilitation facility (CORF). I’d been directed to a video of alocal news story about her and her new communication device, so I knew it scanned her eyes to control the mouse on the computer screen.  I also knew Denise volunteered in Owensboro reading to pre-school and elementary school children.

Karissa Riter, Denise’s speech therapist, introduces me, asking if it was okay I observe and learn more about her and her communication device.  Denise gives me the eyes/eyebrows up response to say “yes.”  At first, I wasn’t sure how to manage my interactions with Denise.  Despite her disability, her personality radiates larger than life for someone who can’t move or talk!  I admittedly felt a little bashful with her.  Once Karissa explained Denise’s method of eye communication when not using the communication device, I could better connect with her; though it took some time for me to trust I was reading her eye gestures correctly.  In her therapy sessions, she primarily used her device.

Karissa graciously explained everything about the device to me in language I could follow; remember I’m a deer in headlights when it comes to technology.  Attached below the communication device (which sits on a stand) is an eye-scanner.  Upon powering the device, the eye-scan registers Denise’s eyes so they are within what I call the “scan zone.”  If the scan zone is off-kilter with Denise’s eyes, she’s unable to maneuver the mouse as easily so occasional adjustments are required to realign the “scan zone.”   Karissa then explains Denise moves the mouse via her eye movement around a menu panel to the option she wishes to select; upon landing on her target she holds her eyes steady, thus holding the mouse in place for approximately five seconds.  The menu is considered selected, and presents a new panel of options related to the topic selection.  For example, an About Me option on the main menu panel offers a new panel of choices with the following options:  home address; family; favorite foods, and; things I enjoy.  Denise once again selects with her eyes via the mouse her next option which offers additional choices of information to choose to communicate.  If she selects Family, a new menu panel appears with photos of family members:  mom; dad; sister; brother-in-law; nephew #1; nephew #2.  If she wanted to tell you about her mom, she’d focus her eyes on the picture of mom, and once selected, the device would say, “My mother is Jane Doe.  She lives in Sweetwater, Texas.” The layering of menus is mind-boggling; they operate similarly to computer file folders which have sub-folders which we create to manage documents.

I learn during my observation Denise has an uncanny sense of humor and loves to tell jokes.  A punster myself, she and I started trading corny jokes.  Humor, thus laughter, truly is the best medicine.  I also learn she’s quite a prankster having pulled a few on our CORF business manager, Kay.  During one session, Kay and Denise got to picking at each other so much that Denise couldn’t catch her breath for laughing so hard.

My understanding continues to broaden as I learn speech sometimes means teaching the basics of communication, such as the letters of the alphabet and their sounds, numbers, words, concepts of time, etc.  Many of those we serve on Campus never received an education for a variety of reasons, and now have the chance to become empowered with a voice through communication devices of all kinds; however, they must learn some basics of the English language that you and I learned in first and second grades.    Remember Helen Keller?  She was blind, deaf and mute yet someone recognized she wasn’t dumb; that she could contribute, she had a voice which had a lot to say, and provided her with the opportunity to learn, to break free of the silence that imprisoned her simply because so many didn’t believe in her. 

Our speech therapists find creative ways to empower our on- and off-Campus patients with their voice.  In my observation with Kenny, I’ll come to realize how the lack of education can add to the height of obstacles in finding their voice; yet these obstacles are not insurmountable.

In the Next Blog Entry:  A Ladies Man with a Remote - “. . . . . independent in his power wheelchair, Kenny gets around . . . at a notoriously “break-neck speed” . . . . . and as a result, run into things!”

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.

Got Voice?

Today’s blog chapter contains contributions from Karissa Riter, a speech therapist with Wendell Foster’s Campus’ outpatient facility for eleven years.

Imagine you cannot speak.  You have no way to say what you need or want:  a drink of water; food; that you hurt.  You cannot verbally tell someone your name or ask anyone how he or she is doing. You must use another means of communication, perhaps gestures or sign language; or maybe it’s a language all your own, developed between you and your caretaker or family member over the years.  You may even be able to write it down, but what if you have cerebral palsy?  You may be unable to do so.  Perhaps you use body language, such as gestures; but what if you can’t move any part of your body?

First, you’d have to gain someone’s attention; remember, you can’t speak and you have limited movement. You may be able to vocalize with a loud sound from the throat that may sound like a cry or yell which should gain a caregiver’s attention.  Oh, and you communicate only through eye movement to answer “yes” or “no” questions; eyes/eyebrows looking up means “yes” and eyes/eyebrows looking down means “no.”  The caregiver comes over, and so begins the twenty, thirty, fifty questions that become part of the guessing game to figuring out what you need or want.  Do you want to talk about hygiene? “No.” Do you want to talk about activities? “No.” Do you want to talk about food and drink?” “Yes!”  Progress!  Well, yes and no, because now we start a new game of twenty plus questions as the caregiver goes through the list of food and drink items until s/he guesses the correct one to generate a “yes.”

Do you think that would be frustrating or aggravating? Would your patience be tried?  For someone who doesn’t have a voice of his or her own, it would indeed.  Meet Denise.

Denise arrived to Wendell Foster’s Campus (WFC) in 2008 after living in Texas where she still has family.  An Owensboro native, Denise returned home to be closer to her sister and nephews.  She arrived to WFC lying in a wheelchair on her stomach; she literally faces the world head on every day!  Denise’s only communication: eye gazes indicating “yes” and “no” responses.   She’d never told her nephews or any of her family members that she loved them. Karissa Riter, her speech therapist, first met Denise through a video which was provided from Denise’s previous residential home in Texas.  Karissa’s first concern anytime she meets a new patient is “how do they communicate?”  Through this video, she learned about Denise’s eye gazes, but also that she had a communication book which required assistance from her communication partner.  When all else failed, Denise would wear a head band with a laser pointer attached and point to the object which she trying to communicate in the book.  Tiring.  Frustrating.  Time-consuming.

Denise let Karissa know upon her arrival what she wanted:  an easier way to communicate. Communication devices were available but to operate it, one uses a finger or knuckle to press a menu panel to select the topic or phrase desired to activate the device to “speak” the selection aloud. Because of the unique wheelchair design and Denise’s severely limited mobility, creativity was required so she could access a communication device that didn’t require touch to make it talk for her.  A unique new device became available shortly after Denise’s arrival to WFC. This device contained a built-in camera that scans the user’s eyes which maneuvers a mouse on its screen.  If there was a body part Denise could control and use the best, it was her eyes! Suddenly, her communication possibilities are limitless!

Denise took to her communication device like a duck to water!  She tells anyone who’ll listen about her family and how she feels.  Denise socializes to find out what you’ve been up to, how the weekend was, and even shares the latest Campus gossip.  And the jokes! An outgoing and fun gal, Denise even expresses her wicked sense of humor through her device. She even volunteers reading to local elementary students, and now, says to her nephews “I love you.”

Denise’s personality shines brightly through her newfound “voice,” a beautiful spirit she shares freely with everyone she meets.  Through my few observations, I enjoy the opportunity to meet and get to know her better.

In the Next Blog Entry:  Denise the Jokester - “Denise has an uncanny sense of humor . . . . . I also learn she’s quite a prankster. . . . “

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 McRap

During my orientation to Green Therapy Pavilion (CORF), I observe a few members of Wendell Foster’s Campus (WFC) working with our speech therapists.  CORF served over 400 outpatients in 2011, but they also provide therapeutic services to those who live on Campus.  One memorable observation I enjoyed was Willie.

Ten-year-old Willie arrived at WFC in 1991 with brain damage caused by child abuse. His handsome face graces our brochure folders, and his smile laced with charm goes in for the kill when you meet him.  Willie lives in our Supports for Community Living (SCL) and works for Hugh E. Sandefur Industries in the satellite office located on Campus.  Willie’s verbal communication consists of one word responses, mostly “yep” and “no.”  Occasionally he’ll say a word he hears in a conversation to emphasize his agreement on the topic at hand.  Willie uses a Vanguard device – a computer-like communication device offering a variety of picture options for conversation for him to push so he may talk to others.  For example, one picture on the screen has the symbol of a person laughing, which is Willie’s jokes button.  Willie loves to make people laugh.  He chooses this joke symbol with a push of his pointer finger which then offers a variety of jokes to choose from and to tell someone.  Each joke or riddle is marked with a “?” on a different color background; and beside each “?” is a picture of people laughing that lets him give the answer.  Most pictures on Willie’s communication device offer several conversation options:  social, dining out, about me (info such as his address, birthday, favorite things, etc.), basic needs (thirsty, hungry), places to go (bowling alley, mall, etc.), feelings (happy, sad, cold, hot, etc.), family and friends, etc.  A speech therapist programs each communication device and its messages for the individual based on his/her skill level, personality, wants, and needs.

In this observation, Kristy Keith, head of our speech therapy department, works with Willie in his practice of functionally using his communication device and to learn the vocabulary or messages on it.  She reminds him what each picture symbol represents if he’s struggling to make a selection.  Because I’ve just met Willie, Kristy asks him to tell me about himself.  Using this device, he must remember which picture on his screen to select, in this case a picture of himself with the words “ABOUT ME” under it.  With practice, Willie builds his memory of each picture symbol and what each one means for him to be able to communicate with another person.  If you’ve ever played piano, it’s the equivalent to practicing a lot:  remembering our hand position; which key represents which note; practicing the scales, and; doing it with such confidence we don’t have to look at our hands.  The more Willie works with his communication device, the greater his confidence in using it and thus his ability and willingness to rely on it to communicate with others.

I’ve learned early in my orientation to CORF to let go of all expectations of what I may see or experience, but I’ve also learned therapy can be fun.  While Kristy worked with Willie, who at this point is telling me a few jokes, Joey comes into the speech department.  Joey is a twenty-one year old preparing to make a move from our Centre Pointe Cottages to a SCL house known on Campus as “the Bachelor Pad.” That in and of itself is a blog chapter for another day!  Stoked about his upcoming move and loving life, Joey breaks into his McDonald’s rap for everyone in the department.  Willie grins at me as he listens, while the rest of us start smiling and laughing.  Willie verbally tells Kristy and me, “crazy”, a “Willie” word meaning funny.  Kristy, ever the speech therapist, tells Willie to find on his communication device what he’d say to Joey.  She get’s Joey’s attention as Willie tells him via the device, “You’re funny.”   Joey eats it up and launches into the McDonald’s rap once again.  Our funny bones respond accordingly.

Communication comes in all forms, not just electronically.  Bobby, another Campus resident, communicates via sign language, spelling out each word he’s saying, and fast.  I dabbled with sign language but cannot keep up with his use of it!  John has a chart on his wheelchair tray that also includes the alphabet.  Recently, he was asked where he was born.  He began to spell out V-E-N-E-Z. . . ., then looks at me as if I should know the rest. I’m thinking there is no such state, and/or he’s misspelling it.  I guess Virginia, then Vermont, and his frustration with me mounted.  Finally, a Direct Support Provider overhears the conversation and clarifies:  he was born in Venezuela!  Shazam!  I did not know that, and it just goes to show you how I still tend to underestimate these folks.  I thought he was misspelling when I was simply clueless!  Next time, I’ll ask him or anyone using this communication method to spell it all out.

Speech therapy facilitates communication – to give those they serve a voice the best way possible.  One gal named Denise finally found hers after she arrived at Wendell Foster’s Campus.  And what an amazing story.

In the Next Blog Entry:  Got Voice? - “Imagine you cannot speak.  You have NO way to say what you need or want:  a drink of water; food; that you hurt. . . . . . Perhaps you use body language . . . but what if you can’t move any part of your body?  Meet Denise.”

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.

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
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.

Weathering Storms Together

Today’s blog chapter is written by Nicholas’ speech therapist, Michelle Clouse.  Michele has worked with Wendell Foster’s Campus for over nine years, specializing in issues with swallowing and eating challenges for those with cerebral palsy. With the family’s permission, she shares her experience working with Nicholas in today’s post.

I first met Nicholas in July 2007 when he was one-year-old. Nicholas was a beautiful little boy who had a tube in his neck to assist with breathing; it also had a special valve that allowed him to talk. He also had a tube in his stomach where he received his feedings.  Nicholas couldn’t hold his head up for very long, sit by himself or maintain his balance without help.  To be honest, when his therapeutic team initially met him, they knew he had spunk but believed his physical capabilities for walking, sitting, talking, eating, etc. would be limited. 

Because I initially worked with Nicholas through the First Steps of Kentucky program, we held his therapy sessions at home.  Upon arriving for our first session together, Nicholas’ dad said, “Don’t sit on the rug.” So we sat on the couch.  Dad later explained other therapists sat on the rug with Nicholas, tipping him off he’d be asked to do “therapy work.”  I realized Nicholas was a smart one-year-old to know he’d be asked to do something challenging and difficult for him.  We’d meet on Tuesday afternoons, and it became a running joke that if I was coming to see Nicholas, it’d rain or storm.  It never failed.  For months, it rained or stormed every Tuesday I’d see him; we even waited out a tornado warning together once.

Nicholas had a lot of difficulty swallowing, and anything he took by mouth would end up in his lungs. He couldn’t even swallow his own saliva, and as a result, was wet all the time.  He wore a large bib that needed changing frequently, with an additional cloth kept close by to catch extra saliva.  To better understand his swallowing pattern, I wanted to get a special x-ray made of Nicholas actually swallowing.  Because Nicholas had been through countless medical procedures in his first year of life, he became upset and uncooperative when we tried to take it.   We tried again a few months later and it was a disaster!  Even with sedation to calm his nerves, Nicholas fought us, spitting food all over his mom, the technician, the equipment and me! 

Despite these unpleasant times and no x-ray, we continued working on Nicholas’ swallowing using neuromuscular electrical stimulation which runs mild electrical current through his swallowing muscles to exercise them.  Nicholas’ day nurse and his family also helped oral muscular stimulation by using a vibrating toothbrush, flavored candy sprays and neck and facial massages at home.  Just last year, four years after our first attempts, we finally got two x-rays of Nicholas’ swallow.  He was a real trooper.  Nicholas also has a movement pattern called extensor tone that causes his body to react by moving backwards and stiffening when something comes towards his face or body, even his own hand.  This physiological challenge continues to be a struggle for Nicholas, but his therapists and family find creative ways to decrease this reaction when he brings a spoon to his mouth. 

In working with clients, especially a child, you become very involved with the family.  Initially, Nicholas had so many doctors and therapists working with him, so it took awhile for us to build a trusting relationship.  Nicholas has a very supportive family.  His mother and I have things in common, such as working in healthcare and both our dads had extended illnesses before passing away.

Nicholas is a very engaging young man.  Even with difficulty talking, he had social skills equal to his age.  One thing Nicholas could say was, “I du” which meant “I good.”  Nicholas continually surprises us with his abilities, and it’s not been an easy road with many challenges along the way.  Nicholas now eats some items but still has a tube in his stomach.  His breathing tube is long gone and he is doing great with his speech. In fact, he was once spontaneously interviewed on a WBKR remote at Shoguns which I happen to hear on the radio.  I clearly understood him and called his mom to let her know I heard Nicholas.  He commented, “I sure am glad I was using my sounds.”

Nicholas, his family and I’ve been on a wild ride as we’ve challenged him to do his best with the things that are hardest for him. It’s been great to help him become a part of a regular classroom at school.  And I’ve enjoyed watching him blossom into a very social young man.

In the Next Blog Entry: Final Days with Nicholas - “I told Nicholas I wouldn’t be coming anymore to watch him do his therapy. His disappointment rang obvious as he kept asking me why . . . . .”

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Good and Not So Good Days

Over several observations of speech therapy (ST) with Nicholas, I come to better appreciate Michele, his speech therapist, and the work she does with her patients challenged in swallowing and eating.  I realize how little I knew about speech therapy, and of course now in hindsight, it makes perfect sense to me. I’d watch Nicholas work to “eat” his strawberry yogurt, or a Pringle, or a goldfish snack cracker, listening to Michele coach him through the process:  Where’s the food in your mouth?  I see food in the front of your mouth – move it to the back where you can chew it.  Use your tongue to shift it. 

In one instance, I remember struggling to swallow myself as I watched Nicholas.  Some may call it a physically empathic experience; others may know it as “sympathy pains.” Whatever you call it, I couldn’t swallow!  As I intently watched Nicholas in his efforts, I silently cheered him on, almost willing his little tongue to operate as God intended it.  Suddenly, as I’m watching with bated breath and hope to see Nicholas swallow, I couldn’t!  I was paying so much attention to what Michele was telling him, I forgot how to swallow in my consciousness of it!  My neck muscles tensed, my jaw locked up and my tongue froze!  While it seems funny to me now, it wasn’t so funny at the time it was happening.  How did that happen?  After a few attempts to do so, and a realization I needed to relax the related muscles, including my tongue, I reclaimed my swallow.  The strange experience woke me up to the reality others face with this challenge.  I didn’t care much for it, and gave gratitude for having the ability to swallow my food, water, and saliva.

Some days were better than others for Nicholas, and from what I understand from Michele, the therapy sessions of late were more challenging because he’d recently had a tonsillectomy.  As a result, the physical changes in his throat alter his sensation of swallowing.  In other words, the procedure was two steps backwards to the one step forward in his therapy work up to that point.  Michele has worked with Nicholas on his swallow since he was a one-year-old.  Nicholas still has a belly tube through which he still takes his meals, but now, after he receives his tube feeding at school, he sits with some of his classmates and eats on goldfish snack crackers at lunch.  It may not seem like a big deal to you and me but for a little boy who wants to run with his crowd, and be involved in the same activities as everyone else at school, it’s a huge deal.

During my last few observations, Nicholas seemed to be less and less cooperative in doing his therapeutic work.  Bad days happen; if he’s too tired, or not feeling well as was the case for one session after being sick all weekend, he's just not that into therapy.  You and I have similar days.  And geez, the little guy is six!  Concerned I was becoming a distraction, I excused myself after several observations.  Later, I learned Michele and Nicholas had a “come to Jesus” meeting because he simply was not focusing on or committing to the therapeutic work needed to make progress in his speech therapy.  As a result, I heard Nicholas was now more cooperative.

I feel for the little guy because we all get weary and discouraged during the “journey” that leads us to our goal, especially when you are not seeing significant progress or results.  You become distracted, and sometimes, simply over it.  I’m unsure if this was true for Nicholas, but I can understand getting discouraged doing the same thing over and over again and getting nowhere.  If your heart isn’t in it, you don’t try very hard.  But that’s when you pull up the boot-straps of determination, which activates the perseverance to keep you keeping on!  

With a little pep talk from Miss Michele, and I’m sure a stronger one from his parents, he’s now back on track and working his tongue and jaw each week in speech therapy.  In fact, I recently ran into Nicholas and he strongly invited me (meaning he wouldn't take "no" for an answer) to come to his speech therapy session.  With Michele's blessing, I observed a very different session.  Nicholas kept his hands in the "no trouble" zone which prevents accidentally pulling out his stim pad wires.  He loves corn and despite missing his two front teeth, he was able to chew kernels off the cob.  He  also ate and swallowed a few spoonfuls of yogurt, but more exciting than that?  Nicholas ate several small pieces of Dorito chips!  Woohoo! It was awesome to see the progress he's had since my last observation several months ago.  And my gag reflex didn't even flinch!

Yes, that was a good day for both Nicholas and me.

In the Next Blog Entry: Guest Blogger Michele Clouse shares her experience working with Nicholas in Weathering Storms Together - “Nicholas fought us, spitting food all over his mom, the technician, the equipment and me. . . .”

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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Saliva Trivia

Nicholas’ speech therapy sessions involved learning how to eat and swallow.  In my first observation, Pringle’s potato chips, strawberry yogurt, and goldfish are on the therapy menu.  I’m sitting in a chair at the end of the table where Nicholas sits, with Michele on the other side of him next to the big electrical stim machine.

You’ve heard people say it; and you’ve experienced it yourself.  Hear about a food you really like and your mouth begins to water.  A research study revealed how exactly the thought of food influences one’s saliva production; get this!  You can’t taste food unless it’s mixed with saliva which is a lubricant that helps to process food in your mouth, actually starting the digestive process.  We generate 1.7 liters of saliva in our mouth each day; our body will roughly produce 10,000 gallons of saliva in an average lifetime.  AND our saliva has a boiling point three times greater than that of regular water, meaning it takes longer to boil.

Now you’re ready for that Trivial Pursuit game or a rousing conversation over dinner.

Nicholas couldn’t wait to eat, and his impatience was growing.  No wonder after working up an appetite playing T-ball earlier!  Michele is having trouble getting the electrical stim pads to stick under his jaw bones, despite ensuring his neck is dry.  After a few tries, and some melodramatic resistance from Nicholas, the stim pads are in place and he’s ready to go.

You know that fact about salivating when you are about to eat?  I believe it.  Our salivating glands go into overdrive when you know you’re getting ready to eat, and/or put food in your mouth.  So when Nicholas takes his first bite of strawberry yogurt (the mysterious pink stuff in the Tupperware bowl), his saliva went into full throttle.  As Nicholas raises a spoonful of yogurt in his hand, moving it up to his mouth, his extensor tone kicks in.  His body goes one way, the spoon goes another, and the yogurt, well, everywhere.  This scene isn’t uncommon, for the coordination of this simple task you and I take for granted three times a day challenges many people with cerebral palsy.  Nicholas fast becomes a mess but he doesn’t care, and frankly, it’s the best he can do given his physical challenges.  Michele reminds him of a technique his family figured out at home in which he rests his elbow of the hand holding the spoon on the table and moves his body to the spoon to take a bite.  Still challenging but with less flying yogurt, Nicholas finally gets the bite in his mouth.

Michele coaches him on chewing, reminding him to keep the yogurt in his mouth, describing how to manipulate his tongue to bring it back into his mouth.  Nicholas faces Michele who’s watching closely what he’s doing with his mouth and tongue, so I’m not seeing what’s going on.  But when he faces the table working on the spoonful of yogurt in his mouth, I’m struck by “kryptonite.”  The saliva hanging from his bottom lip was tolerable; but now . . . gulp. . . . breath in. . . . now it’s milky with pink yogurt.  I feel that familiar feeling in the back of my throat as my neck muscles tense under mutinous threat of my gag reflex.  I take a slow deep breath in and silently talk to myself, Don’t react, Ferber. Do not hurt Nicholas’ feelings!  And don’t get sick and look like a wimp!

I’m holding my own, and rationalize I can’t see a lot of it so I relax; it could be worse.  But then, Michele says to Nicholas who’s been mostly positioned facing her, “Turn around and let Miss Carolyn see how you do with your swallowing.”  AUGH!  I’m mortified when I hear her say it, and I take another deep breath to steel myself as Nicholas proudly obliges with big brown eyes intent on effort and success.  My heart instantly melts as he looks at me to show me what he can do. The milky saliva taunts me. I suppress my gag reflex with my own big swallow and yet another inhale of calming air.  I see Nicholas working so hard at manipulating the yogurt in his mouth, how can I disappoint him?  Suddenly I remember, You have two theater degrees, Ferber!  Show time!  Game face on, I plaster it with a smile as I watch, bound and determined not to give Nicholas any kind of expression that would discourage him or make him feel self-conscious.

I breathed deeply a lot during this first observation with Nicholas, with my biggest breath taken at the end when it was over.  Fortunately, my sensitivity lessened with each session.  My respect for Michele also skyrocketed for her ability to do this job!  And Nicholas conquered yet another step in his therapeutic process towards reaching a goal, while helping me overcome my weakness to the influence of my “kryptonite.”

In the Next Blog Entry: Bad Days Happen - “As I intently watched Nicholas in his efforts, I silently cheered him on, almost willing his little tongue to operate as God intended it to do.  Suddenly, as I’m watching with bated breath. . . . . ”

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.