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

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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
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.

Why Won’t You Look at Me?

A trip to Walmart with Connie and Lisa would be an eye-opening experience as I realized not everyone is willing to include, connect with or acknowledge individuals like Connie and Lisa.

If you are unfamiliar with individuals who have developmental disabilities, the sight of their physical abnormalities can be startling.  Cerebral palsy (CP) affects a person’s ability to move and maintain balance and posture; it makes it difficult to hold one’s head up and many will slouch or slump in their wheelchair.  Cerebral means having to do with the brain; palsy means weakness or problems with using the muscles.  CP is caused by abnormal brain development (during pregnancy) or damage to the developing brain affecting a person’s ability to control his or her muscles, even weakening them.  CP also results from oxygen deprivation during birth, or brain injuries from Shaken Baby Syndrome or a head injury resulting from a car accident or a skateboarding fall.  The damaging results vary from person to person, and may or may not affect one’s intellectual, physical or emotional capacity.

Upon first seeing and meeting the men, women and children we serve at Wendell Foster’s Campus (WFC), in what someone called “broken bodies”, I decided to stop bitching about my lower back and neck issues and crackling knees.  Some individuals with CP are non-verbal, and completely dependent on another for basic care, such as toileting, feeding, and other personal hygiene needs.  Others, though physically challenged, are intellectually smart, engage easily in conversation and independently mobile in their electric wheelchairs. Still, others communicate with communication devices, gesturing, or signing.  Some are verbal with the mental capacity of a child, and mobile on their feet, but fall-risks thanks to balance challenges.  We cannot lump all individuals with development disabilities into one category.  Each one is unique in his or her personality, intellectual capacity, physical ability, or communication capability, just as you and I are unique in our personalities, body and physical ability, emotional maturity, and intellectual capacity.

Now, imagine yourself in Lisa and Connie’s wheelchairs.  You can’t hold your 8-12 pound head up, so it drops and tilts to the right.  Your lower jaw hangs open because CP causes dysphagia leaving your jaw, throat and neck muscles weakened; but your saliva glands work well, and saliva pools in your mouth.  You can’t swallow, thanks again to dysphagia, so it spills over your bottom lip, leaving you drooling.  Your arms are constricted inward towards your body, at the elbows which are bent but stiff.  Your hands are stiff, even curled into fists so tightly that extending your fingers is not an option.  Your arms look as if they are in a permanent state of a charley horse. You are confined to a wheelchair, and sit in the same position for hours, unable to shift or move until someone does so for you.  Got the picture?

Now, imagine yourself in this unique physically contorted body moving in your wheelchair down Aisle 9 of Walmart. You are pushed by someone who supports you with all that you can’t do for yourself.  Another Walmart shopper approaches as you come down the aisle.  She sees you.  You see her see you.  Then you see her quickly look away, pretending to search for something on a shelf or look for something in her purse.  She says nothing in response to your effort to vocalize a “hello” or “hey” (which many use to say hello), once again pretending she doesn’t hear you despite your loud effort to greet her as she passes you by.

Feeling ignored?  Overlooked and dismissed?

I have a simple request of you:   I invite you to render a simple gesture of kindness to the next individual with any kind of disability you encounter.  Directly look him or her in the face, in the eyes, simply smile and say “hi.”  You may feel awkward, and it may even be hard to do, but I know you can do it if you are willing to do so.  I also assure you, even promise you this:  Your simple gesture of kindness will make that person’s day.  I’m pretty sure you’ll feel pretty good about it too.

In the Next Blog Entry:  Danger Will Robinson - “One well-put-together woman saw us coming down her aisle, and immediately looked away as if searching for something . . . “

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.