The Show Me's Lunch Experience

The Show Me’s staff and manager were attentive to the need for space accommodation as five male customers from Wendell Foster’s Campus (WFC) entered their restaurant to have lunch with the “Show Me” Girls.  Our dining arrangement was set up in two long tables next to each other in the back room where several TV’s were.  Kalinn, Mark, Dempsey, Mike and Lawrence sat at one table.  Ashley, Jerry, Rex and I would sit at the other table.  Once settled we began our meal like anyone else would – reviewing the menus.

Initially, having these guys review the menus struck me as odd.  I’m aware many of the folks we serve have special dietary needs requiring their food be pureed, so the idea never occurred to me these guys would actually order off the menus!   Duh!  They could choose what they wanted “a la pureed!”  Additionally, I would soon learn each man’s dietary requirements are unique.

Ashley gave Jerry a menu, setting it in front of him.  Rex, a fairly independent guy, had one of his own to review.  The Direct Support Providers (DSPs) ask each person, except Rex who was perusing the options for himself, what they wanted to eat through a series of “yes” and “no” questions.  Ashley asked Jerry what he wanted, mentioned a few choices until he said “yes” to a cheeseburger with fries.  Jerry requires his food be pureed, and interestingly, needs all liquids thickened, to reduce the risk of swallowing either of these into his lungs.  Because of Jerry’s sudden involuntary muscular movements, he would also need help with eating his meal.  I incorrectly assumed each individual would, so I would learn the various ways the DSPs would offer meal support.  For example, Mark needs his food pureed too, but is capable feeding himself.  Michael can eat food like you and me, but in smaller manageable bites, as does Dempsey.  Rex will eat his meal as it comes prepared on his plate but with one exception:  he ordered crab legs and would need Lawrence, his DSP, to crack them open and pull out the crabmeat.  Otherwise, Rex feeds himself just like you and me.

I continue to be surprised how differently developmental disabilities impact someone’s ability.  No one individual is alike; each has unique physical, mental and emotional challenges, different needs for different areas in his or her life.  To compartmentalize a person with a developmental disability into one category is a huge mistake made out of ignorance.  To assume what one person can or can’t do, can or cannot understand negates, discriminates and discounts one’s ability and potential.  We are all each unique in our own personal health challenges, physiological challenges and mental challenges.  We can’t assume one’s disabilities, or his or her lack of ability, just as we can’t make assumptions about a particular race or ethnicity, what they do, like to eat, or their character or values.  These types of assumptions stem from ignorance, which breeds stereotyping which breeds discrimination.  In recognizing the uniqueness of each individual with a developmental disability, we can begin to eliminate assumptions and step into the role of supporting their empowerment, while showing respect.

Once our lunches arrive, meals are blended in the food processor, crab legs are cracked and picked clean, and small bites are created so all may enjoy their Show Me’s meal.  The DSPs tend to their charges first before enjoying their own meals.  There’s no ravenous consumption or “pigging out”.  There’s no rushing through the meal with the shoveling of food into mouths.  The dining process for those with developmental disabilities plays out as a methodical process, ensuring all bites are chewed well, and/or effectively and safely swallowed.

During this particular lunch, I become acutely aware of how fast I eat my food.  I decide to slow down and enjoy my meal one bite at a time, the company around me, and the ambiance.  Um, well, as well as one can enjoy it when sitting in a sports bar with several TV’s flashing sports at you.

In the Next Blog Entry:  A Green Bay Packers Fan - “As we were beginning to leave, he became very excited, which became evident by his erratic body movement.  Jerry was motioning towards the wall . . .”

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.

Mall Rats

With the day’s plan unexpectedly changed (Change Happens), we arrive at Towne Square Mall and found handicap parking that allowed us to more easily unload the Three Gents of Wendell Foster’s Campus (WFC):  Mark, Dempsey and Jerry.  As we moved through the parking lot to the mall entrance, I found myself again being a protective Mother Hen with Jerry.  I suppress the urge to “pitch in” to help him along.  With Jerry and the others, there is no getting in a hurry to do things; a change of pace for me and my lifestyle.   I would have the opportunity to practice greater patience as I hang out with these guys today.

Still too early for lunch, we wander the mall, stopping at Jerry’s favorite store, Game Stop.  Jerry loves playing video games on his PlayStation 3.  Watching him shop the games in the store was a fascinating experience.  Jerry carefully perused the shelves like you and I would when shopping.  He moved along to the back where more games were displayed, including the newest releases.  He took his time to carefully scan the wall of possibilities for a gamer.  The rest of us moved about the store, leaving Jerry to his business of shopping.  I entertained the waiting group with my pathetic Wii skills on a tester game at the front of the store.  Eventually Jerry finished, and we moved back out into the mall.

Mall walkers were busy making their rounds.  My previous trip to Walmart with Connie and Lisa (Walmart or Bust!) allowed me the opportunity to experience firsthand people’s reactions to individuals from our Campus.  Today, walkers maneuvered around us, not really giving our group a second look as they focused on their exercise.  We would be in a few people’s way once in awhile, and one of the Direct Support Providers (DSPs) or I would say “Excuse us” to which they’d nod and move on.  A few folks looked at the guys and smiled as they passed.  I didn’t notice anyone turning their heads to avoid us, nor did I hear anyone say anything disrespectful.  I was glad for it.

As we moseyed through the mall, we ran into Rex and Michael, two other folks with Supports for Community Living (SCL) folks, along with Lawrence, another DSP.  Michael, a tall man that seems out of place in his wheelchair, is a quiet type who paints.  In fact, his self-portrait was selected for display at the Smithsonian’s Reynold’s Center for Art and Portraiture in Washington, D.C.  I didn’t get a chance to spend a lot of time getting to know Michael on this trip.  Rex, on the other hand, is quite a character.  He's very outgoing, never at a loss for words, and independent in his power wheelchair.  Rex and I would visit some over lunch.

As the clock neared 11:00 a.m., we decided to head over to Show Me’s for lunch.  This newest restaurant in town, with pretty waitresses in short shorts and low scoop-neck tops, has become a favorite among the men from WFC.  Imagine that!  Men with developmental disabilities are the same as men without disabilities, but with one exception:  the former are better chick magnets, and these guys I’m hanging out with today got a lot of attention!  Show Me’s restaurant is very accommodating with table set up and electrical needs whenever WFC folks visit.  Today, we lunch in the back room where there’s less smoke.  Show Me’s is also familiar with the fact that WFC customers may need their food to be pureed for consumption.  I was very impressed by their accommodating service. 

Once settled in, we were ready to have lunch, and this experience would be my first full understanding of the meal time routines for those we serve.  It also provides a greater appreciation for my ability to enjoy a meal.

In the Next Blog Entry:  The Show Me's Lunch Experience -“Once our lunches arrive, meals are blended in the food processor, crab legs are cracked and picked clean, and small bites are created so all may enjoy. . . .”

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.

Change Happens

“CLOSED FOR MAINTENANCE” the sign read on door at the Owensboro Science and History Museum.  “We’re not going to the museum today,” explained Ashley and Kalinn to Dempsey, Jerry and Mark.  We stood in front of the doors, like deer in headlights, a bit thrown off by the agenda change.  After a few minutes, we decided we needed to head back to the van to figure out what to do now, since it was a cold and windy day. 

Now, take a moment to think about a time you had your heart set on something, and you’re all set to enjoy it and then BAM, you can’t.  A tourist sight you were jazzed about seeing is closed for renovations.  A favorite restaurant you are craving has a two-hour wait.  A friend you’ve not seen in a long time cancels travel plans.  Were you disappointed?  Bummed?  Upset?  Frustrated?  You might express your feelings, verbally by complaining, or emotionally with tears or anger, or physically by throwing things around in a huff.  Sometimes, individuals with developmental disabilities are unable to verbally express their disappointment, but may show it in other ways.  To an outsider unfamiliar with those we serve, this expression may appear to be an "outburst" or “fit”, which many frown upon and judge.  Wouldn’t you be “fit to be tied” upon disappointing news?  Isn’t venting verbally, tossing things around, or cussing “having a fit?”

Dempsey was very upset the day’s plans had changed; he was looking forward to the Museum visit.  So as Ashley and Kalinn were loading him into the van, Dempsey expressed his upset the best way he could: a vocalized yell (because he can’t speak to say the curse words you and I might say), grasped Kalinn’s hand and his wheelchair wheel (throwing things around, slamming your fist onto something), and became uncooperative in the van loading (I don’t want Plan B, I want Plan A as planned!). 

I knew Dempsey was upset, and as it was happening, I remembered thinking, Man, what do you do with that?  Then I watched in awe as Ashley and Kalinn went to work.  Ashley started talking to him, positioning in front of him to get his attention, gently asking him to listen to her for a minute.  He resisted; she persisted.  Ashley and Kalinn both talked to Dempsey, asking him in calm, rational, and compassionate voices to let go of Kalinn’s hand until he loosen his grip so Kalinn could free herself.  They never raised their voices, threatened him, or showed impatience.  Ashley continued calmly talking to Dempsey, asking him to calm down so he could tell her what he wanted to do instead. After less than a minute, which felt longer, Dempsey calmed down and listened.  He wasn’t happy but he wasn’t throwing a tantrum anymore.  Ashley explained they didn’t know the museum was closed, apologized to him for his upset, and asked him to help them figure out where he would like to go.

Knowing Dempsey well, and since Jerry and Mark indicated they wanted to hang out at Towne Square Mall, Ashley mentioned the others wanted to go to the mall, then asked if he’d like to have lunch at Show Me’s, a sports bar infamous for its “attractive, model quality” servers.  That got Dempsey’s attention!  Ever the ladies man, he perked up some as Ashley shifted his upset to a place of empowerment to make a choice.  Her efforts to redirect his frustration succeeded; Dempsey confirmed he’d like to go to Show Me’s.  As Kalinn stood there with them, Dempsey reached out to her to give an apologetic hug.  He knew he’d not handled himself well, and he let her know he was sorry for grabbing her hand.  He also gave Ashley an apology hug.

Ashley later explained Dempsey likes to know what’s going on, and when the unexpected comes up, he’ll let it ruin his whole day.  They were making every effort to offset that, even asking him to not let it ruin his day.  Dempsey would be mildly uncooperative a couple more times during the day, but they again redirected him.  In one of these instances, I went over and started talking to him, asking him about his lunch and how he was enjoying the scenery of Show Me’s; he calmed down and engaged with me.  Yeah, I can be as smooth and charming as Dempsey when a situation calls for it.

With Plan B for the day’s agenda in place, we headed out to Towne Square Mall for a new adventure.

In the Next Blog Entry:  Mall Rats - “Yeah, men with developmental disabilities are about like men without disabilities, with one exception:  they are better chick magnets!”

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.

Going with the Flow

My day with Dempsey, Jerry and Mark started at 9 a.m. with a trip to the Museum of Science and History in downtown Owensboro.  After conquering the downtown parking situation, we headed to the Museum, which involved crossing a street at the light.

Ashley and Kalinn pushed Mark and Dempsey ahead in their wheelchairs.  I stay behind with Jerry as he slowly moves himself along the sidewalk in his electric wheelchair. The crosswalk light changed to “Walk”, so the others begin to cross.  Jerry and I arrived at the corner of Daviess and Second Streets just as the light changed, so we’d wait for the next “Walk” signal.  Despite Jerry’s independence, I fought the urge to help him along.  Doing so would disable him in his ability of mobility, and I realized I discounted his ability by thinking he can’t get across the street on his own.  I remembered Shellie and her “I can do it” attitude, hoping for a paradigm shift in my thinking.  Let him do this, Carolyn, I heard in my head.

When the crosswalk light signaled the all clear, I said, “Let’s go, Jerry,” but noticed he was struggling to access the joystick on his wheelchair.  Some individuals with developmental disabilities experience uncontrollable, involuntary and inconsistent movements in their body, a condition called athetosis.  Jerry experiences these involuntary movements, and in this moment was challenged to access the joystick on his wheelchair with his hand.  I suddenly felt a sense of urgency as the pressure of the crosswalk light blinked at us:  “WALK WALK! WALK!”  Annoyed with its nagging, I thought, Damn it!  We’re working on it!  My mind started racing:  We’re holding up people who want to turn right or left onto the street. We’re not going to make this crosswalk light again.  I want to help but I need to let him do it! AUGH!  

I took a deep breath, and suddenly, Jerry was moving ahead of me into the crosswalk!  Following alongside at what felt to be a painfully slow pace, my thoughts started yammering again.  We’re going too slow!  We’re not going to make it!  Crap, the crosswalk warning is flashing!  At this point, we’re in the middle of the street and cars are still waiting on us to turn.  Then I thought, What are they going to do, run over us?  I took another deep breath and decided if anyone wanted to run over Jerry, they’ll have to go through me first!  We reach the opposite corner, and I admit I felt a huge sense of relief.

This one simple activity taught me to relax and stop worrying about what everyone else was thinking or whether we’re inconveniencing anyone as we slowly made our way across the street.  I wondered if Jerry or anyone else in his wheelchair worries about people hitting them.  Do they feel vulnerable?  Or that they’re inconveniencing others as they move through a crosswalk?  Did Jerry feel me being a mother hen?  Did he sense my self-consciousness?   I decided I’d ask these questions when I spend one-on-one time interviewing him and some of our WFC Peeps.

Upon arriving to the front doors of the museum, Ashley and Kalinn inform us the Museum was closed for maintenance on Mondays.  You’re kidding me!  I thought.  All that effort to find a parking spot, to cross the street, and we have to turn around and go back?!?   As Ashley and Kalinn sorted out Plan B, a little voice mocked me.  Yeah, Carolyn, you’re really inconvenienced here.  I’m not the one who faced the obstacles and put forth the effort to overcome them, get around them to come to the museum.  I decided not to complain, but I did feel bad for the guys.  They were excited about their museum visit and their disappointment was evident.  How I felt in this situation really didn’t matter.
I realized how invaluable Dempsey, Mark, and especially Jerry are as teachers on the importance of going with the flow, a lesson this recovering "Type A - Perfectionist" gal has spent several years learning to practice in her life.  I’m realizing time spent with those I serve at Wendell Foster’s Campus is a huge classroom for learning.  My stroll with Jerry across Second Street would be the first lesson for the day, taking my understanding of “going with the flow” to a whole new level.  Dempsey would soon remind me of another annoying lesson and simple fact of life: change happens.

In the Next Blog Entry:  Change Happens - “We stood in front of the doors, like deer in headlights, a bit thrown off by the agenda change.  After a few minutes, we decided we needed to head back to the van. . . .”

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 Three Gents of WFC

The time came to spend another day with the folks from the Supports for Community Living (SCL) program.  Today, I’d be hanging with the guys.

Dempsey bakes goodies every weekend to take to his church to sell, the money he then uses to purchase more baking supplies for his next baking venture.   He also has a reputation on Campus for being a ladies’ man.  Upon introductions, I offered my hand to Dempsey to exchange a handshake, which he took and proceeded to bring it up to his mouth.  Unsure of where we were going with this introduction pleasantry, one of the Direct Support Providers (DSP), Kalinn, quickly explained he was going to kiss my hand.  Oh the chivalry!  I thought flattered, even touched.  I quietly mused that a man is a man, regardless of any physiological or mental challenges.  Dempsey has a killer smile, and charm to boot; and I fell for it hook, line and sinker!  I even blushed as I felt my cheeks warm up upon completion of his greeting.  Slightly flustered, I smiled with red cheeks, said thank you as I feigned (or was it real?) the swoon of a woman being swept off her feet.  Dempsey liked my reaction to his genteel manner.

Next I meet Jerry, or as the DSP’s call him, “Jerr Bear.”  Jerry came to WFC in 1997 and has a quiet nature about him until he warms up to you, then he’s more sociable.  Jerry is a handsome young man with beautiful blue eyes.  With his reddish hair and beard, he reminds me of the young Kris Kringle in the children’s claymation, Santa Claus is Coming to Town.  Jerry is independently mobile in his electric wheelchair, cognizant and responsive to what’s going on.  Jerry was a bit aloof upon first meeting me, but he did take my hand as I introduced myself to him.  He seemed unimpressed when I told him I was spending the day with him.

Last but not least, I meet Mark.  Mark is quiet and seems to keep to himself.  He showed great patience as the DSPs, Ashley and Kalinn, prepared to load the three into the van.  Mark didn’t say much to me, other than to answer “yes” or “no” questions.

The DSPs that work closely with the folks in SCL are familiar with the quirks, the personalities and the challenges of each person they serve.  We all have unique personality characteristics and traits, but these may not always be obvious upon first glance.  Just as we get to know our co-workers, friends, neighbors, and family members over time, so do our DSPs get to know those individuals they work with through direct experience, trial and error, and wisdom shared by others who’ve been around for a long time.  Whether it’s a personality characteristic, such as needing consistency, or nutritional requirements, or their communication methods, the DSPs are responsible for the well-being and quality of life for those to whom they are assigned.  I will come to recognize this importance during my time with Dempsey, Mark and Jerry.

The day’s agenda includes a trip to the Owensboro’s Science and History Museum, then lunch.  Our first challenge of the day is finding a handicapped parking space in downtown Owensboro.  We settled for a spot near a parking garage across from the River Park Center where we could unload everyone safely onto a sidewalk.  The sidewalk was busy, and it was interesting to watch people move by us.  Granted, we took up a lot of room – think about it, three men in wheelchairs, a van ramp that extends out approximately four feet, and three women.  We created a bit of a maze for some pedestrians, and we all apologized or said “excuse us” as people maneuvered through our group.  Thankfully, most graciously walked by us with nods or a smile.

Parked.  Unloaded.  Organized.  We were now ready to head to the museum which involved a half block walk and crossing a busy one-way street.  I wasn’t sure about how this would go and felt a little nervous as we headed that way.

In the Next Blog Entry:  “We’re going too slow!  We’re not going to make it!  Crap, the crosswalk warning is flashing!  At this point, we’re in the middle of the street . . . ”

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.

Unconditional Hearts

Wendell Foster’s Campus (WFC) offers upon hire, and throughout employment, extensive training for Direct Support Providers (DSPs), empowering them to offer the highest quality of support for and services to those we serve.  DSPs offer our clients a variety of support depending on each individual’s needs. 

Consider every little thing you regularly do each day.  You prepare a bath or shower to clean yourself then dry off.  You wash, dry, brush and fix your hair.  You use the bathroom, number one and two, and all that goes with that task!  You flush and wash your hands, hopefully! You clean your ears, trim your nails, floss and brush your teeth.  You moisturize with lotion, clean your face, and ladies, put on your makeup, and men, shave.  You dress putting on undergarments, pants, shirt, socks and shoes.  Now imagine you cannot move your arms, have little to no mobility, no motor coordination, and no voice.  Many individuals with developmental disabilities can do most of these tasks themselves.  Others can voice decisions around their personal care but require assistance.  Some individuals are completely dependent on another person for every personal and hygienic need.  The task of intimately caring for another requires a patient, caring and compassionate individual.  I also believe it requires someone who’s capable of unconditional love.

I returned to Owensboro in July 2009 to care for my mother in the last two months of her life.  I had no idea what would be involved, or what I was capable of doing for her until I was in the thick of it.  I fed her, brushed her teeth, and brushed her thinned hair.  I saw to her toileting, which included changing her adult disposable and cleaning her after bowel movements.  I cared for and cleaned her catheter to prevent infection.  I did things for my mom I never believed I was capable of doing, because she couldn’t, she needed someone to do it for her, and because I loved her.  This humbling experience taught me the meaning of unconditional love.  Every little thing I did for my mom was a gesture of love. Yet, my heart ached because I knew she felt helpless and a level of humiliation in this process.  We involved Mom as much as possible to give her dignity and personal power through choice, out of respect for her, until she eventually could not verbally communicate because of the countless tumors in her brain.  Then, her care and quality of existence was left completely in our hands until she passed.

I remember this experience whenever I see our DSPs supporting our clients.  Could I do this for another human being that isn’t my mother?  I honestly don’t know, but a couple of DSPs have told me they didn’t believe they could do what they do either, and yet they do.  The DSPs do it with care, respect, and with as much dignity they can afford to the individual.  WFC policy emphasizes respect.  Even if an individual is completely non-responsive, DSPs show respect by informing and involving the individual in whatever activity, regardless of that person’s level of cognizance.  The effort facilitates a sense of acknowledgement and a feeling of humanization.  Last October, an assessment reported our DSP team “illustrated a caring staff who appear to have positive relationships with the people they support . . . .” Off the record, one consultant shared our DSP program was one of the best they’ve observed in their work.

Being a DSP is not glamorous work, and not without challenges.  Our staff quietly and willingly takes on their responsibility with grace, compassion, commitment and heart.  If any staff member fails to do so, they do not remain a part of WFC for long.  The individuals we serve on Campus trust and rely on our DSPs; bonds are developed, many that root deeply into the heart.  The work is difficult at times, but I’m told for every challenge they face, the rewards far outweigh the negative, making those few tough moments forgettable.

In the Next Blog Entry: My Day with the Fellas - “Upon introductions, I offered my hand to Dempsey to exchange a handshake, which he took and proceeded to bring it up to his mouth.  Unsure of where we were going with this . . .”

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.

A Facebook Folly

Before the Mercer County incident, a Facebook exchange missed the sensitivity and awareness marker by a light year. 

A Facebook post perpetuated a stereotypical perception our society holds of those with intellectual and developmental disabilities:   I don’t care if you lick the windows, take the special bus or occasionally fall over, you hang in there Sunshine you’re special.  Recognizing the intention wasn’t to be hurtful, the Wall post nonetheless demonstrates the thoughtless, insensitive things people say to be funny at the expense of individuals with developmental disabilities.  A Google search revealed this quote as a popular t-shirt and greeting card for purchase.  This Facebook post generated an additional comment:  “with crayons and a helmet, maybe.”

Committed to advocacy, I decided to respectfully raise awareness to this attitude and behavior which demeans, diminishes, and disrespects individuals with developmental disabilities.  With a gentle apologetic opening, I explained these individuals aren’t a joke but victims of Shaken Baby Syndrome, hypoxia, epileptic seizures, and severe head injuries.  Despite some mild defensiveness, my point was made and an apology offered.  Things could have, should have ended there.  Unfortunately, it didn’t.

Another Facebooker announced she worked with special needs kids and thought the quote was funny, as if her job provided the credential to deem it a “thumbs up.”  She commented how one of her kids screams all day and she thinks about taking him for a “for a long walk off a short pier!!”  She further explained it takes a lot of patience, but sometimes she doesn’t have it, especially on that day when “I got popped.”  She had to count to twenty because her fist was clenched in a reflex motion to hit “the kid” but didn’t because she knew “she couldn’t do that.”

I wonder how the parents of these children would feel about these comments.  I have no doubt it requires great patience, that it’s frustrating and stressful work, and there are days when patience runs thin, tempting a knee-jerk reaction to lash back.  I’m unsure what upset me more:  the utter insensitivity within the comments, or the individual’s rationale for not hitting the child verses recognizing s/he is a defenseless, vulnerable child.

Some children and adults with disabilities cannot express their feelings the same way you and I do.  I’ve witnessed our staff compassionately, patiently, and respectfully manage emotional upset with redirection; it involved no clenched fists, no hard feelings towards the individual or defensiveness.  Anyone taking personally such behavior from an individual, especially a child, with intellectual and developmental disabilities lacks the very understanding of those disabilities of those they serve, and perhaps, needs to consider a new career.  Perhaps teachers and their assistants need greater training to understand the behaviors of those with special needs and how to effectively redirect their students’ behaviors.  If teachers are overwhelmed, perhaps more staff is needed and more training on coping skills to prevent burnout.  Stress and burnout are major precursors to the abuse and maltreatment of those vulnerable in our society.

I made one final comment on this Facebook thread to clarify my point is about showing respect and compassion for people who’ve lived a history in the face of discrimination, and who have been the butt of jokes in the name of light-heartedness.  

The sister of a former Campus resident once eloquently shared with our staff:  “I hope that you . . . . truly understanding what a tremendously important job that you have; when you are tired, weary, frustrated – I would suggest that you try to put yourself in their position, and really try to imagine what it would be for you to live . . . . . . . in their body, mind and spirit.”

In the Next Blog Entry: Unconditional Love and Care - “I remember this experience whenever I see the DSPs supporting our clients.  Could I do this for another human being that isn’t my mother?  I honestly don’t know, but. . . .”

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.

No Bagging Kids Here!

Autism affects social and communication skills, with symptoms appearing within the first three years of life, ranging the gamut from extreme to mild.  Asperger’s Disorder is a milder form of autism, often referred to as “high-functioning autism”.  A neighbor of mine in Colorado has a son with more severe symptoms.  She’d describe her son having moments of logical and productive communication, and other times, he’d “check out” to be “in his own world.”  There are no conclusive causes for this complex developmental disability which generates great controversy, and spurs many research studies leaving the medical community with more questions than answers.

In observing our Wendell Foster’s Campus – Kelly Autism Program (WFC-KAP), I became more intrigued by autism.  WFC-KAP offers an after-school program for children diagnosed with autism; a safe and nurturing environment to learn socialization skills and management skills of their sensory challenges within a social setting.  A few students appeared to be typical teenagers, leaving me to wonder why they were even in the program.  With further observation, I recognized the subtleties of the social and communication challenges. Another student would become mildly disruptive, repeating a statement, then talking gibberish.  I watched WFC-KAP staff redirect this young man with patience and consistency, shifting him out of his sensory disconnection to focus on the class discussion at hand.  I later learned that upon first entering the program the previous year this child did not communicate at all, and remained withdrawn; what I observed was actually progress.  I was impressed by our staff’s ability to understand the sensory complexities and what tools a child needs to calm his or her “sensory challenges.”  Redirection is the main technique with consistency being the key in behavior modification.  Repetition supports the shifts in the behavior.  It’s like when we start a new habit - we do it twenty-one times before it sticks in our brain to do it regularly, without thinking about it.  WFC-KAP staff explained it takes children diagnosed with autism approximately 214 repetitions before the new behavior “clicks and sticks” in their brain.

Meet Beau, a “clicks and sticks” success.  After a confirmed diagnosis of autism at the age of five, his family began early intervention:  behavioral and diagnostic therapies outside of Owensboro; traditional speech and occupational therapy to address developmental delays, and; instruction he received at his elementary school.  After hearing about Wendell Foster’s KAP program at a fundraising event, and one family’s success with it, Beau’s parents enrolled him.  According to his mom, blogger and author Jaime Rafferty, “WFC-KAP offered Beau a place to go where he was ‘normal’.”  Three years after enrolling Beau, his parents talk about the remarkable improvements of his social and behavioral skills, noting behavioral problems in social and academic settings have dramatically dropped.  Beau has learned how to be a friend, how to help with chores around the house, and proper etiquette in public, for example, when ordering from a menu or dining at a restaurant.  Despite his initial adversity to extracurricular activities, Beau looks forward to seeing his "KAP" friends.  According to his mom, “Beau’s participation in the Kelly Autism Program has awakened untapped possibilities.”

You have to wonder if the folks at Mercer County’s Intermediate School understand how to work with a child diagnosed with autism, or the nature of this complex developmental disability.  Their effort to admittedly “punish” the child rather than take the time to redirect his inappropriate behavior with effective behavioral modification techniques begs the question about teacher training:  Are teachers properly trained to work with children with developmental disabilities?  Are they sensitive to the uniqueness of these children’s special needs?

Unfortunately, Mercer County wouldn’t be the only Kentucky school with staff serving children with special needs in need of awareness and sensitivity training, as demonstrated through a Facebook exchange prior to the child bagging incident.

In the Next Blog Entry: A Facebook Folly  - “She commented how one of her kids screams all day and she thinks about taking him for a “for a long walk off a short pier!”

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.Bottom of F

To Bag or Not to Bag

Recently in the news, Mercer County Intermediate School in Kentucky came under fire for an incident in which a teacher’s aide placed a child diagnosed with autism into a “duffle-like” bag filled with balls for unruly behavior in class.  According to the child’s mother, she was summoned by the school to get her son because he was “acting up” and upon arrival found him in the hall, stuffed into the tied bag, head and all.  After demanding his release, upon which the aide struggled to loosen the knot of the bag, the mother was told by school officials this was not the first time her child had been put into the bag.

I’m not a therapist, nor am I an educator of children, but I have enough intelligence, never mind common sense, to know that stuffing a child with or without special needs into a duffel-like drawstring-tied bag full of balls is wrong.  Supposedly the bag is a therapy bag, and the teacher’s aide admitted they’ve used it as punishment with this child in previous incidents.  Our professionals who work with our Kelly Autism Program (WFC-KAP) are not aware of a “therapy bag” where an entire child, head included, is placed into it.  I also understand from WFC-KAP that punishment is not a therapeutic practice, especially for children diagnosed along the autism spectrum.

This news report stirred controversial discussion, prompting an online petition calling for better training and increased awareness of those working with children who have special needs in Mercer County.  Children diagnosed along the autism spectrum require supportive sensory alternatives in the management of their environment and behaviors.  The methods of behavior management used in our WFC-KAP’s afterschool program involve positive reinforcement and redirection along with limited negative reinforcement.  I’ve watched it effectively used in my observations of the afterschool program.

Is it Mercer County’s practice to stuff any misbehaving child into a bag?  Children diagnosed with autism deserve no less respect than a child without a disability. They require behavior modification, a process which identifies a behavior in need of changing, then asking the child how s/he wishes to change it when the unacceptable behavior occurs, and what positive result the child wants to reinforce the new behavior.  This process empowers the child in making his or her own behavioral choice, and with consistent application on the part of the adult, the child shifts the modified behavior into an appropriate behavior s/he uses in everyday life.  Our WFC-KAP program director says it takes a child diagnosed with autism approximately 214 repetitions to integrate the new behavior.  I watched this process during my observation of a WFC-KAP class, and the parents of those in the program remark on the results from this consistent approach.  This process puts the students and families in control of the behavior modification, giving the child a choice, never for punishment of any kind.

Anyone diagnosed along the autism spectrum, or with an intellectual and/or developmental disability requires special needs, greater patience, and compassion from those who work closely with them, whether they are direct support providers, therapists, volunteers, medical staff, special education teachers, teacher aides, parents . . . . . the list goes on.

The president of the Mercer County Education Association, Wilma Thomas, stated, “. . . putting special needs children in bags is not unheard of in certain cases . .  .” and “if it is at that school, that is an appropriate method of restraint.”  Our WFC-KAP program director states she’s never heard of this method being used as a form of restraint, also noting her certification training taught that one only restrains when the child is a danger to himself or others.

Time will tell what really happened, as this Mercer County mother is understandably upset and pursuing the matter further with an attorney.  What concerns me is the seemingly lack of respect shown for her concerns and that of her child by the Mercer County School Board.  This impression was further cemented by Ms. Thomas’ request of the Board, “I challenge you to support our schools; do not allow them to be targets of disrespect or rumor.”

In the Next Blog Entry: No Bagging Kids Here!  – “. . . . after enrolling Beau, his parents talk about the remarkable improvements of his social and behavioral skills, noting behavioral problems in social and academic settings have dramatically dropped.“

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.