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."

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.

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.

“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.