The Big Move

One hurdle after another, he overcame.  Through every hoop, he jumped.  Through the grief of mom’s unexpected death, he moved.  Joey plowed ahead, keeping his eye on the target:  independent living in a Supports for Community Living (SCL) house on Wendell Foster’s Campus (WFC). Every delay moving forward Joey addressed and conquered.  Joey persevered through it all, and the day he waited and worked for finally arrived.  His dream finally came true! Joey’s Independence Day happened on May 14, 2012!

Joey’s new address was the SCL house fondly known as “The Bachelor’s Pad” where his new housemates, Brandon and Roger, welcomed him.  Joey was so stoked he could hardly contain himself.  I go over to “The Pad” where Joey and his boxes of personal belongings had arrived.  The Direct Support Professionals (DSP) change shifts at 3 p.m. so Misty comes in to report for duty.  Joey greets her with his flirtatious coolness, “Hey girl, how ya doing, whassup!” Everyone laughs and Joey eats it up.  I ask how he is feeling about his big move, and Joey bursts in response, “Awesome!  I’ve waited for this for a long time. I’m super pumped up and excited. Me and Brandon are gonna be looking at all the girls!”  Brandon, who’s with us in the kitchen, chokes up laughing.

Joey, the girl-chasing twenty-something-year-old charmer and flirt that he is, practices his “pickup magic” on his DSP. “Misty, I love you with all my heart!”  Misty laughs as she goes about her business of the shift-change paperwork.  Joey, a rabid Adam Sandler fan, says, “I couldn’t be more happier than I am right now” and breaks out into singing Sandler’s “The Hanukah Song.”  Misty joins in with him and the two of them sing their hearts out as Brandon smiles in amusement.  Once the musical number is over, Joey tells me he had a lot of fear about not getting into SCL. He wanted it so bad and he did not want to mess it up.  We take a few photos of Joey in his new place, then with his new housemates on the front porch.  I leave him with Brandon to do whatever young twenty-something-year-old men do in bachelor pads. 

Fast forward to May 2013.  It has been over a year since Joey’s mom died, and he tells me, “I still miss her.”  He tried working but decided he did not like the job.  He made a few “horror” videos with the help of WFC’s Western Kentucky Assistive Technology Center staff, and has even done a little dating.  Joey enjoys more freedom to make his own choices, such as staying up late at night to watch movies or to participate in scheduled activities or not.  He still gets up early in the morning because other SCL residents get up and go to work, or to a day program, to volunteer, to run house errands, and/or ro social activities.  Joey doesn't like that he cannot stay at the house by himself all day when everyone else was gone, primarily because of safety and personal care concerns.  Efforts were made to give Joey this opportunity but with a DSP present, leaving this twenty-one-year-old feeling like he was “babysat.”  Despite these disappointments, Joey enjoys his freedom to roam the Campus visiting former Cottage C peeps and administrative staff.  He likes hanging out with his SCL friends, going out to eat, and shopping at Wal-Mart where, he adds with a twinkle in his eye, he likes to flirt with the girls.  Oh, he does get to sleep late on the weekends.

At a recent annual plan of care meeting this past June, Joey reiterated his desire to be more independent, wanting to stay home by himself whenever he wanted without DSP supervision. Recognizing how important it is to Joey to live life like that of other young men his age, SCL staff worked out a plan that provides him the opportunity to stay home whenever he wants.  To ensure he gets his personal needs met and for his safety, Joey agrees to check in with another on–site SCL DSP every thirty minutes, to let him or her know he is okay and/or if he needs anything. At this writing, Joey has never been happier since arriving to WFC.  He enjoys hanging out at the Bachelor’s Pad watching his movies, playing on the computer, and comes and goes whenever he pleases.  Joey never gave up on what he wanted, and accomplished his goal of feeling truly independent, on his own!

Many thanks to everyone at Wendell Foster’s Campus, and especially to Joey, for helping us share this inspirational story of perseverance.

In the Next Blog Entry: TBA

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A Voice of Choice!

Joey was on a mission for greater independence.  Fully aware of the state’s bureaucratic hoops, he was willing to jump through them with support from Wendell Foster’s Campus (WFC) staff.  One major and unexpected hurdle took everyone by surprise.  This hurdle threatened another thing that was important to Joey:  having the case manager of his choice.

You know how it is when you want something, yet things keep getting in the way of your getting it.  Joey really wanted this move into a Supports for Community Living (SCL) house.  So much that he could taste it.  Everyone on Campus knew what Joey was doing and how badly he wanted it.  Joey talked about it all the time, sharing whatever latest news he had, and his excitement.  Everything was going along nicely until the state agency, Money Follows the Person (MFP), threw a wrench into the process.

MFP offers financial support to people with disabilities who are shifting from living in a medical facility to independent housing.  Joey needed this financial support to purchase accommodation equipment for his new home.  This unexpected hurdle occurred thanks to a recently proposed, not yet approved regulation proposal by the state SCL program preventing caseworkers employed with a service organization from managing cases of clients receiving services from the same organization.  While the intention is to eliminate conflicts of interest, this proposal did not consider Joey’s personal choice of Lindsey, a case manager with SCL.  Worse, this proposal did not give Joey a voice in deciding who he has looking out for his best interest.

Since his arrival to WFC, Joey developed an instant friendship with Lindsey.  When Joey decided to make the move into SCL, he knew he wanted Lindsey to be his case manager for a number of reasons.  Aside from feeling comfortable with her, their personalities matched, which is an important facet of our person-centered organizational culture.  Second, Lindsey was accessible to Joey for whatever he needed leading up to and after his move into SCL.  Since her office was on Campus, Joey could see her whenever he needed.   Regardless of these reasons, MFP took issue with Joey’s selection of Lindsey, given the proposed regulation.  If Joey wanted financial support from the state’s agency to get the equipment he needed to make this transition into SCL, he would need to find another off-campus case manager. 

Joey and staff got busy resolving the issue.  Wes, Centre Pointe Cottage C program director, called several agencies in the Owensboro community to schedule case manager interviews for Joey.  Out of all the calls, only one person responded to Joey’s request for interviews.  Joey met the case manager and discussed many things, including her accessibility and availability to meet with him.  He learned that at best be she would able to meet with him once a month given her client workload.  Furthermore, if Joey wanted to see her more than once a month, each visit would require permission from her employer, which was not a guarantee!  This news did not set well with him.

Joey wrote a letter to MFP expressing his concerns about his case manager situation.  He outlined his efforts to find a new case manager, and the outcome of the one interview that responded to his request.  He explained her lack of availability was not acceptable to him, and re-expressed his choice that Lindsey be his case manager.  Signed, sealed, and delivered, the state agency backed off the demand for a non-WFC case manager, and approved Joey’s request! 

The news brought Joey great relief.  He felt a sense of control over his destiny, and ultimately, his own choices.  Regulations are a part of our world; and sometimes we have to work with them to work around them.  Joey jumped through the state’s hoops, made his case to them, and won.  With this roadblock removed, Joey had access to the funds he needed to support his move into the SCL house!  Once again, it was full-speed ahead towards his “Independence Day.”

In the Next Blog Entry: The Big Move!

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I’m Gonna Take That Mountain

Reba McIntyre sings a song called “I’m Gonna Take that Mountain” about overcoming challenges in life, and the power of perseverance.  Joey faced a mountain.  Filled with excitement about his goal of living in a Supports for Community Living (SCL) house becoming a reality, Wendell Foster’s Campus (WFC) staff and Joey met on the morning of February 8, 2012 to discuss making it happen.  The best day of Joey’s life suddenly turned into the saddest day when he received news his mom unexpectedly passed away at home.

Joey and his mom (pictured, left) experienced some rough patches over the last two of years but they talked regularly, even two days before she died.  Joey shares, “She was supportive and excited about my move into SCL.”  Joey was understandably upset about his mom, and needed time to deal with the loss.  What was an exciting time in Joey’s life suddenly became overwhelming. Joey needed more support than ever to get through life’s latest hurdle before him.  WFC staff asked Joey, what do you want to do, how do you want to proceed?  Despite the staggering setback, Joey wanted to move forward with his move into SCL.  Both Joey and WFC staff carried on, making the best of a difficult situation.

Distractions can often provide temporary relief from grief.  One WFC staff member took Joey, ever the entertainer who enjoys being the center of attention, to a McDonald’s drive-thru window.  There, Joey sang his food order with The McRap song, a hip-hop YouTube song that was all the rage.  The unsuspecting McDonald’s clerk did not get the joke, expressed confusion, thus prompting Joey to repeat the entire McRap order again!  The prank offered bright spot of laughter in the midst of Joey’s grief.

When people are down, God has a way of lifting you up.  One day, the pastor, a deacon, and another church member from the church Joey’s mom attended came by the Campus to see Joey.  They were concerned about him, asking if he had any unmet needs now that his mother was gone.  Over the next several months, they would visit Joey often, checking on him and reassuring WFC staff that whatever he needed, they would see to it financially and otherwise.  Joey eventually returned to the church he and mother attended, for support and in memory of his mom.

Meanwhile, Joey’s efforts towards SCL independence experienced unexpected hiccups, which made an already difficult situation even tougher for Joey.  These glitches frustrated WFC staff.  Says one staff member, “giving Joey any more bad news broke their heart,” leaving them feeling as if they were kicking a man already down. 

Whenever we go after what we want, challenges pop up and they did in Joey’s quest for independent living.  Frustration happens.  The key is to plow through the challenges with perseverance and patience.  WFC staff knew this goal was important to Joey and they did everything possible to empower him as he moved through the jungle of bureaucracy to reach his goal.

In the Next Blog Entry: My Voice Speaks my Choice! - "You know how it is when you want something, yet things keep getting in teh way of your getting. . . Everything was going along nicely until the state agency . . .  threw a wrench into the process."

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I’m Moving on Up!

When you are eighteen, and the legal age of adulthood, the last thing you want to do is hang out with little kids.  Joey wanted nothing more than to be an independent adult since graduating from high school and moving onto Wendell Foster’s Campus (WFC). When Joey moved to WFC, the only room available on Campus was in Cottage D.  Centre Pointe’s Cottage D serves primarily our younger population.   Upon Joey’s arrival, the youngest resident was eight years, and most of those living in Cottage D were not as verbal or interactive as Joey.   This sociable fun-loving young man was not getting his social needs met the same way he did with his high school friends.  Joey did not mind his Cottage mates; he just did not relate to them, being the oldest kid on the block.  Staff recognized that a strong social network was important to Joey, himself a social butterfly.  So when an opening became available in Cottage C less than a year after his arrival, staff and Joey worked together to make the transfer.

Excited about the move, Joey recognized the opportunity to hang out with other grown-ups closer to his age; but Joey admitted he was nervous about the move.  Again, another adjustment took place as he developed new friendships, and worked with new staff that had to orient themselves to Joey’s personality, his care plans and needs.  His homesickness eased as he settled in at Cottage C.  Joey did not like having a roommate, which prevented him from staying up all night and watching movies.  Joey still did not like the daily structure that comes with living in a healthcare facility, but dealt with it.  He kept busy with recreational activities and his therapies.  This transition was less stressful, and while Joey was grateful for the move, his free spirit was still unhappy.  Joey did not have the independence he imagined he would have after leaving home.
This nineteen-year-old bright young man was aware of another WFC program called the Supports for Community Living (SCL).  This program has eight houses that offers 24-hour staff access.  They focus on promoting the independence and maximum potential of each individual, which appealed to Joey.  He saw SCL as an opportunity to get the independent life he wanted.  Living in an SCL house would be like how friends his age lived:  with roommates verses a “healthcare” setting with fifteen other people.  The idea appealed to Joey, and he envisioned this program offering him the kind of independence he found elusive at WFC.  Joey relentlessly pursued his new goal with fervor and passion.

Joey spoke to SCL’s “powers-that-be” about moving into one of the program’s eight houses.  At the time, no openings were available, nor would there be unless WFC built a new SCL house, or unfortunately, someone passed away.   Joey made his interest well known with the SCL staff that he wanted to fill the next available opening.  He continued to inquire about it, reminding SCL staff of his interest.  Sadly, an opening became available a year and a half later when one of our long time SCL individuals unexpectedly passed away.  The Campus and SCL took the news hard, but the loss created an opening for Joey to transfer into the program.  His journey of moving into a house of three, to greater independence he began. 

Mind you, there are oodles of state regulations to meet, and hoops to jump through when moving into a SCL house.  The process is nothing like moving into an apartment.  Many, many team meetings would take place with WFC staff, Joey, and a state representative from the Money Follows the Person, a state transitional agency that supports individuals with disabilities in independent living.  These meetings discuss the process, the plan of action, and progress in working with the state agency to clear any hurdles to facilitate Joey’s move into a SCL home  Stoked, Joey was willing to do whatever it took to make his dream of living in a real “grown-up” house happen.  The first meeting was set for the morning of February 8, 2012. 

Unfortunately, what was an exciting day became dark and gloomy as Joey got bad news later in the afternoon.  Little did anyone know how windy the road would be for Joey as he began his quest for his independent living. 

In the Next Blog Entry: I'm Gonna Move that Mountain - "Joey sang his food order with the McRap song. . . The unsuspecting McDonald's clerk did not get the joke."

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Reality Sucks

Joey was excited about his move to Wendell Foster’s Campus (WFC).  Graduating from high school in six months, this transition offered Joey an opportunity to leave the nest and stretch his wings in the sweetness of independence.  Independence to Joey meant staying in bed all day, getting up whenever he wanted to, doing whatever he wanted to, going wherever he wanted to go.  Joey’s ideal day was watching movies, playing video games, and simply hanging out.  After moving into WFC’s Centre Pointe Cottage in November 2009, Joey’s idea of independence – carefree, “have fun and goof off” all the time – experienced a head-on collision with WFC’s idea of independence.  Within the first few weeks, Joey wants to go home. 

Everyone experiences an adjustment upon settling into life at WFC, a new environment, new routines, and a new way of living.  Many individuals coming from homes where a parent or a family member has been their primary caretaker tend to experience the greatest adjustment.   The most common reason: caretakers in their genuine interest to provide the best care possible sometimes enable their loved ones by doing everything for them.  Sometimes, it is out of unnecessary guilt, or because it is easier when juggling other responsibilities in their life.  Well-meaning, genuinely caring, but not always empowering.  Joey’s mom took great care of him, giving him whatever he wanted.  She was overwhelmed with juggling a new marriage, a new baby, and a growing teenaged son with cerebral palsy.

We all are responsible for our lives, and as adults, we have daily tasks we need to do, such as getting up for the day, making our bed, getting dressed, personal hygiene activities, meals, etc.  Wendell Foster’s Campus teaches and empowers the people we serve, to be actively involved, responsible and participating in life as much as one can despite cerebral palsy.   Our staff creates care plans that support this mission, the individual’s quality of life, pursuit of interests, and engagement within our Owensboro community.  Everyone actively participates as much as possible in his or her personal care, cottage and room chores, and recreational activities.  We provide support of physical, speech, and everyday living skills through therapies and assistive technology.  When staff placed these expectations on Joey, a struggle for independence ensued.

Joey’s idea of independence didn’t include getting up every morning, helping make his bed, or picking up his room, and being involved in recreational activities.  Joey’s idea of independence conflicted with that of WFC’s, and he did not like not getting his own way.  Just as any normal teenager would, Joey made his feelings known with both the staff and his mom.  You and I grumbled when our parents asked us to clean our room.  I once threatened to run away from home at such injustice! Joey wanted to run away from WFC and go home to his mom.

Unfortunately, going home was no longer an option for Joey.  His family had already moved on with their life.  All the equipment they used for Joey’s at-home care had been removed.  Mom was still chasing after a toddler who occupied a great deal of her time.  Finally, mom knew that WFC was the best place for Joey. In time, Joey adjusted to Campus life, though not always happy with it.  He still yearned to be a “grown up,” but being the oldest living in a cottage that serves a younger population did not help.  Both Joey and WFC staff recognized it, and worked together to figure out another living situation for Joey so he could be living with adults. 

In the Next Blog Entry:  I'm Moving on Up! - "Stoked, Joey was willing to do whatever it took to make his dream of living in a real 'grown-up' house happen."

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18 Going on 40

Do you remember when you were eighteen, nineteen or twenty? The ideal of becoming an adult and the freedom that accompanies it gives youth a false sense of reality about what independence means. This idealism motivates you, leading you to believe you can take on the world! That the world offers more of what you have known as a “teenager” living at home – no responsibilities, no chores. Freedom! For Joey, this exciting time was no different than it was for any of us his age living without cerebral palsy.

A smart, twenty-two-year-old, Joey is a creative young man who loves to be the center of attention, entertaining anyone who will listen. The first time we meet, Joey breaks into song, The McRap song, a popular YouTube video that raps a McDonald’s order in the drive-thru. Everyone in the room is cracking up, which encourages Joey to break rap it again. Joey loves Adam Sandler and can recite one of his comedy bits. This lady’s man also fashions himself to be a Romeo, flirting with every pretty girl he sees. Fashion is important to Joey, so he wears the best name brands available to young adults. A huge movie buff, Joey has seen hundreds of films. The scarier and the gorier they are, the better. His favorite flick is Nightmare on Elm Street. Joey is a “Movie Quote Master” with an uncanny skill of quoting lines from any movie title you give him. He wows staff members and volunteers with this amazing ability. Joey’s sense of humor has seen him through tough times in his young life. In addition to his cerebral palsy, he has experienced more “adult-life” than most young men his age should. After his parents’ divorce, Joey and his older brother lived with mom. Joey’s dad died in 2008. His mom remarried and started a new family, giving Joey a younger half-brother.

Taking care of a child with special needs is a full-time task, one many parents take on out of love and commitment. Over time, the task becomes overwhelming for a variety of reasons. As parents get older, and/or their children grow up, the physical demands of moving their child to and from wheelchair to bed, bathtub, etc. becomes difficult. Sometimes, the medical care becomes difficult to manage, or beyond their ability to administer. The home environment may interfere with the care of and safety to a child with developmental disabilities.

In Joey’s case, this small frail boy grew into a tall and lanky teenager, making it physically difficult for his petite mother to transfer him from wheelchair to bed. Joey points out, “she couldn’t hardly lift me.” Joey’s mom was also raising a toddler that demanded a great deal of attention and care. It all became too much and something had to give. Joey would soon graduate from high school, which for him meant moving into the next rite of passage: being an adult on his own. He and his mom began conversations about the possibility of his move to the Wendell Foster’s Campus (WFC). Joey became excited about the idea. He would be on his own, out from under his mother’s wing

I do not know about you, but as an eighteen-year-old going off to college to live on my own, to do whatever I wanted, the rubber of reality hit the road for me; and it was not what I expected. I thought life was a huge party with no responsibilities, no curfew, and no expectations from anyone. I, and many fellow freshmen, quickly learned we were wrong. We had to do our own laundry, see to our own meals, get ourselves up and dressed to make classes on time. We actually had to participate in our lives! Take responsibility for ourselves! We realized how much we took mom for granted when living at home. Joey living “on his own” at WFC would not be what he expected either. He most likely expected it would be similar to going away to college where you “party all the time,” and life is carefree and “fun.” No different from what you and I expected when we went away to college. For Joey, reality quickly set in, and within two months of his arrival, he wanted to go back home.

There was only one problem: going back home was not an option

In the Next Blog Entry: Reality Sucks - "Joey's idea of independence  . . . conflicted wtih that of WFC's, and he did not like not getting his own way."
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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Fist-Bumps, Hugs, and Tears

With our first “test” presentation out of the way, Shelly was beaming with greater confidence than she’d shown thus far in this new adventure as a volunteer Campus Advocate.  Prior to the test-run of our No R Word presentation, local Evansville Channel WFIE 14News came to the school to interview Shelly about her mission to spread the word, which later aired on the evening news. Additionally, the Messenger-Inquirer came out to Wendell Foster’s Campus (WFC) the next day to take a photo of Shelly for an article they were doing on the No R Word campaign.  We also did a video promo with Shelly promoting the presentation, and emailed it to all elementary schools in six counties. We even arranged for her storybook reading and our No R Word presentation to be video-recorded, as well as a one-on-one interview with Owensboro Career & Technical College – TV, which later aired on its television cable channel!

All of this hit at once, and Shelly was instantly a superstar!  And Shelly loved it all!  The staff teased her not to forget us little people, which just got her giggling that infectious laugh she has.  Shelly had fun with it, and teasing us.  One morning after three presentations in a row at one school, she announced with a mischievous grin to everyone within earshot that she was going home to “rest her voice.”  The room broke into laughter, as did Shelly.

Our presentation schedule for elementary schools was booming – which culminated into fourteen school appearances in a five-week period! Shelly even accompanied me on a few of the Power Point presentations for the older kids.  I would speak for forty-five minutes, Shelly for five, and after we were done, you would have thought I’d never been in the room!  The kids LOVED Shelly, and Shelly loved the kids.  The younger students asked the funniest questions, such as "Do dogs get cerebral palsy?" and "How fast will your wheelchair go?"; all of which Shelly graciously responded to with pleasure and compassion.

And there were fist-bumps and hugs all around!!  After our presentation, students would leave, passing by Shelly with a “thank you,” “hello,” and fist bumps.  Some children showed their appreciation more deeply with hugs that made Shelly beam in gratitude.  Says Shelly:  “I really enjoyed it, the kids’ curiosity; their facial expressions as they looked at me, and their questions.  I realized I was empowering them to feel comfortable in asking questions about my disability, in talking to someone with a disability, and to feel comfortable approaching and interacting with someone like me.”

At one school, a little girl asked Shelly if anyone had called her the R word.  When Shelly answered, “yes,” the little girl’s empathy overwhelmed as she responded through welling tears that she didn’t understand why people would be so mean to do that, and that people shouldn’t do that.  This young student’s compassion brought tears to my own eyes, and Shelly herself felt emotional.  “I realized then that I was getting my point across because if someone gets that emotional when I’m talking to them, then the point I’m getting across is hitting home, reaching their heart.”

Watching the apprehensive looks of uncertainty as Shelly entered the classroom before our presentation morph into the warm embrace and acceptance afterwards was heartwarming to experience as I witnessed this woman demystify disabilities for the children.  The show of love and acceptance for Shelly and her efforts was visible after each presentation from the students themselves to the dozens of thank you notes, letters, hand-drawn pictures and cards that were sent to us (mostly for her) afterwards.  I found it touching to see Shelly grow into this new community role, and to witness the her confidence boost as she came to realize she truly does have a significant contribution to make as a voice for those with disabilities.

If non-profit programs had agents such as Jerry Maguire involved in these sorts of activities, Shelly would have him negotiating a life-long contract to do the No R Word presentations for the duration of our Spread the Word program!  She’s already informed me she plans on doing it again next year, and there’s no reason for her not to do so, especially since we’ve already received requests from schools to come back and visit.  Through this program, she discovered more fully her own voice, and that she wants to volunteer with children, having already inquired with one local school about the possibility.

I couldn’t be more proud of Shelly who not only took a risk to step out of her comfort zone to make a difference, but who developed as a person in going after what was important to her:  to be of service and make a difference in our community.

In the Next Blog Entry: To Be Announced

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Show Time!

“I didn’t think I could do the presentation, and now I realize I can do most anything I want to.” 

Shelly admitted after the campaign was over that while she wanted to participate, she wasn’t so sure of her ability to do it.  During the course of our working on our presentation, Shelly often would criticize herself when she flubbed up, and later she confided that she was hard on herself because in life, others had been hard on her, and she felt like she needed to prove something.  I coached her to be okay with making mistakes, to be okay if she reworded a presentation line differently than what was on paper.  I also reassured her that if she jumped ahead in our presentation that I had her back and would get us back on track.  With this encouragement, Shelly relaxed more, but continued studying her presentation part until she had it cold.  The once self-critical Shelly began patting herself more on the back as she recognized progress in her knowing her part of the presentation.  And when I screwed up, that made her feel even better!

Together, Shelly and I decided she’d read a book about a little girl with Down syndrome which would help students understand an intellectual disability (which we briefly discuss in the presentation) while nicely complimenting the very issues of fear and uncertainty we address in our talk to the children.  It also highlighted the importance of focusing on what we have in common rather than focusing on differences, a subject important to Shelly to be addressed in the presentation.  Once done with the book, Shelly would then share her story, and immediately engage the children in asking who liked things she liked, such as hanging out with their friends, and macaroni and cheese, and how they have these things in common.  Then, she asked the students how they are different from her, receiving expected answers, such as she’s in a wheelchair, and they are not, she’s older and they are younger, etc.  Shelly would then tell them there are other differences, asking the kids who could brush their teeth, dress and feed themselves, to all of which the students would raise their hands.  At this point, Shelly would inform them that she cannot do those things and why, thus introducing the subject of cerebral palsy.

From here, together, we continue the conversation to explain what cerebral palsy (CP) is, how people get it, and how it affects the body.  Shelly demonstrated her limitations, while explaining how others with CP have different limitations than her.  She then explained that while she may look different, she is unique, just like they are unique and how despite differences between each other (i.e. better at sports than at drawing), we are all unique, yet have things in common.  We also help students understand it’s okay to be curious, and that it's okay, not rude, to ask people with disabilities questions.  We also briefly explain the difference between intellectual and physical disabilities; and, how to approach individuals with disabilities.  Finally, Shelly shared that people aren’t always nice to her, discussing the R word and how it’s used to be mean, and even jokingly to mean that someone is “stupid.”  Shelly gets "real" about her feelings with the children, helping them understand that it hurts when she’s called the R Word, and how she feels about people who use it, pointing out that people who call her that don’t think she can do anything when she can, and that they are not nice people.  She then helps the children understand how to treat people with disabilities:  be nice; be respectful, and don’t be afraid to ask questions, because she’d rather people take the time to get to know her than misjudge her because of her cerebral palsy.

Our first “test” presentation took place in February at Burns Elementary School before a group of older elementary students, 4^th & 5^th graders (right).  Shelly admitted to being nervous because she was unsure about the school environment, how the kids would take to her, and how they’d respond to her message.  Well, let me say that nervous or not, Shelly hit the presentation out of the ballpark!

How do I know?  During the Q&A portion of the presentation, one little girl raised her hand to ask the question, “Shelly, will you be my friend?”

Uh, Kleenex please!  Shelly said she felt an emotional feeling of happiness deep inside because “I touched them deeper than I realized I could touch them, and that gave me chills.”

A Superstar is born!

In the Next Blog Entry:  Fist Bumps, Hugs & Tears - "At one school, a little girl asked Shelly if anyone had called her the R word.  When Shelly answered, 'yes,' the little girl’s empathy overwhelmed as she responded through welling tears . . . ."

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A “Dog and Pony” is Born

Shelly came down to my office one chilly January afternoon after work to discuss her involvement with a No R Word presentation that was brewing in the creative hopper as planning began for the 2013 Spread the Word to End the R Word campaign.  This meeting would become the first of many over the next three months as we hammered out our plan to educate elementary students about not using the R word in a mean or joking way.

My interactions with Shelly up until this point had been mostly in passing so I was excited to actually sit down with her and really get to know her.  Shelly was wonderfully open, and touching as she shared very personal life experiences with cerebral palsy, heartache, fears and anxieties, as well as her goals in making a difference in our community.  We laughed a lot, and she made me feel comfortable to ask even more questions from the point of view of an elementary student to see how she’d respond to unfiltered, even awkwardly asked questions youngsters can ask.  I learned a lot about Shelly in this hour-long conversation, and from it, our presentation was easily born.

Together, Shelly and I agreed that while she needed to share her personal story of life with cerebral palsy, we needed to help the young students understand what cerebral palsy (CP) was, why it happens, and what it looks like.  Because Shelly had no previous speaking experience before groups, I decided to create a scripted outline for our presentation that would serve as our starting point.  Most of the content within ended up being Shelly’s very own words from our conversation.  I learned when and how she was diagnosed with cerebral palsy, and what living life with cerebral palsy meant, what she could and couldn’t do, and how she managed that.  I learned about all the things she liked and didn’t like, such as TV shows, foods, UK, sports, etc. I learned more about how CP affected her physically and what that meant to her and her abilities.  I learned that she preferred people ask her about her disabilities than make assumptions about what she can and can’t do; and finally, I learned how she felt about the R words and being called a “retard”, and what she thought about people who use them, jokingly or not.  Everything we discussed became a part of our presentation, added into the mix a few opportunities to interact directly with the children so they may connect with her, and small bites of information that help them understand cerebral palsy, how it happens, and what is happening when they see people with excessive oral secretions or heads drooping. 

Together we looked at the first draft, and Shelly really liked it, recognizing her own voice within it.  Over several weeks of meeting two, three and four times a week, Shelly and I read the presentation outline aloud dozens of times and then some, an exercise that allowed us to make tweaks, reword some things, and fine-tune it to where both she and I were comfortable with the words flowing from our mouths.  Shelly brought simplicity to the CP explanations, and further found her voice through edit suggestions of her part.  With some encouragement, Shelly began to take co-ownership of this presentation, and full ownership of her message she wanted to share.

We discussed “memorizing” the half-hour presentation, so that we could present it without needing to read from our outline.  Shelly physically wasn’t able to hold the outline, so she understood the importance of knowing the presentation cold.  I held myself to memorizing it, but reassured her I’d have the outline in hand so if she got in a memory pinch, I’d help bail her out; but Shelly was fully committed to learning her part, and knowing it better than me!  There were practice sessions in which I struggled with my part and she nailed it, which became very important in boosting Shelly’s confidence in this process.

In the Next Blog Entry:  Show Time! - "Shelly admitted to being nervous because she was unsure about the school environment, how the kids would take to her, and how they’d respond to her message. . . . nervous or not, Shelly hit the presentation out of the ballpark!"

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.

The Female Dynamic Duo

Preparations for the 2013 Spread the Word to End the R Word campaign were well underway in late fall 2012.  In planning for the campaign, I wanted to find a way to reach more elementary schools, in which we really didn’t have a presence.  We offered an hour-long power point presentation used in the middle schools for 6^th – 8^th graders.  One Wendell Foster’s Campus (WFC) community member was already going into the elementary schools to read a couple of storybooks, usually to Kindergartners and 1st graders, using her communication device.  I wanted a similar presence in the elementary schools with the No R Word campaign.

Shelly’s consistent offers to help with whatever we had going on in the Marketing & Development department jumped to the front of my brain as I pondered this challenge.  The idea of involving someone from our Campus in a shorter classroom presentation came to me, inspired by the dynamic Handicap This! duo of Mike Berkson and Tim Wambaugh who recently came to Owensboro to do a show.  I was unsure about a number of things, including whether Shelly would feel comfortable talking before a group of people AND whether Shelly even liked kids or not!  To find out, I struck up a conversation with her one day while she sat at the receptionist’s desk asking her about whether children came up to her with questions about her wheelchair or her disability, and how she felt about it.  Her enthusiastic answers reassured me that Shelly was the right gal for the job to help us spread the word in the elementary schools.  She acknowledged and respected children’s curiosities, pointing out she didn’t mind answering their questions.  She said she liked children, and that she’d rather they ask her questions than stare at her and wonder.  I left the conversation feeling we (WFC and its Spread the Word Campaign) were on the verge of something huge and exciting!

After taking some time to discuss my idea with my supervisor and the Supports for Community Living folks who would be actively involved in supporting Shelly in this endeavor through transportation, I approached Shelly with the idea of helping me with a No R Word program for elementary children.  To my pleasured surprise, Shelly excitedly latched onto the idea, and we agreed to get together after the first of the year and talk about what our “dog and pony show” would look like.

It would’ve been very easy for me to decide everything – what we say, how we say it, what we do – in this new No R Word presentation, and it was very tempting!  But, it wouldn’t have been person-centered.  As an organization that is challenging itself and its staff to be more person-centered, I had to temper my “creative” self to ensure this was truly a JOINT project with Shelly.  After further contemplation, I realized that this task wasn’t just about creating a presentation to do in the schools, it was giving Shelly an opportunity to have her voice; and more importantly, to be a voice for all of those on our Campus, and within our community who can’t speak up for themselves.

In January Shelly and I sat down and just talked. What about? Simply put, Shelly.  I wanted to know why she agreed to take on this gig, what excited her about it, what her apprehensions were.  I wanted to know who Shelly was, get to know her life story, what made her tick.  More importantly, I wanted to know what was important to Shelly that people understand about her, others with disabilities, and her feelings about the R word.

Out of this meeting, our No R Word presentation was born!

In the Next Blog Entry:  A “Dog and Pony” is Born - "Shelly brought simplicity to the CP explanations, and further found her voice through edit suggestions of her part.  With some encouragement, Shelly began to take co-ownership of this presentation, and full ownership of her message she wanted to share."

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.