"Life is like a box of chocolates. You don't know what you get until you bite into the center."
Forest Gump

Monday, July 30, 2012

Passing the baton.


                          Brett and his partner, Ryan

I am certainly not going to act like I have all the answers on this journey, but I am pleased to have a son, Brett and his partner, Ryan who are making plans for Barry to eventually transition into their lives.   How exciting for Barry to be included into their lives on a transitional basis, and to know he always has a home.  Besides - who wouldn't want to live with two fun guys versus staying home and watching the old folks eat tapioca?

Even though I am fortunate to have this plan in place, perpetual parents experience some exceptional challenges.  Experts predict that the number of people age 60 and older with developmental disabilities, cerebral palsy and autism will double to 1.07 million by the year 2030.  Some 80 per cent of these adults are currently living with relatives or their parents.  Parents at this stage of their lives are already facing the challenges of:
  •   health-related problems and emotional worries that are derived from the cumulative stress of care giving demands.   
    • effects of care giving can negatively impact the parent's own health at a time when perpetual parents are beginning to experience their own age-related declines.
    • as families attempt to save money for retirement, perpetual parents also struggle to retire with the additional expenses of a child with disabilities (medication, equipment, special clothing)
  •   in coming years greater numbers of older parents will require not only assistance for their adult children but also for themselves.  Services that support families are ever shrinking with long waiting lists.

    Where can I begin to get informed?

    Let's start in your own community with local service providers for adults with disabilities.   With their support visit all options that exist in your hometown and also in neighboring towns as well.

     Is it important:

    • that your child live in the same town as you?
    • that your child seek employment?
    • that your child have his/her own room and private space?
    • that your child is able to go into the community and select activities that interest him?
    • how often will you visit, how often can your child visit you?
    • what transportation options do they have?
    • how often could you child come home for extended stays?
    • what would your role look like?
    • what is the agency's vision and mission statement?

     Is it time to bring everyone to the kitchen table to begin a dialogue around a "proactive plan vs. a reactive plan?"   

    Next mini topic:  What if I don't want an agency involved in the care of my child?

     
     


                                                 Learning to let go.


Over the weekend we sadly had to put Swiffer to sleep.  He has been with our family for the past 13 years.  I acknowledge that not everyone is a cat lover, infact, my husband would be happy to wear the button.  But Swiffer was a people pleaser.  He sought you out, he comforted you when you needed support, he answered every question you asked of him, and he woke me every morning at 6:05 am by tapping my shoulder.  Today is day 3 without Swiffer and I am still waking at 6:05 am with the first thought being that I am facing another day learning life without him.

Death is a strange concept for Barry.  Death is a strange concept for most of us.  We have lost two grandmas and one grandpa in the past ten years, and although he understands death means they are not coming back to us, I'm not sure he grasps the concept.  This is a topic I work on.  I want Barry to understand that death is a part of life, and it is our belief that we will see each other again, even Swiffer.

So I'm wondering, how are other parents and caregivers prepare their adults with disabilities to face this topic? 
To Infinity and Beyond!

Developing a Blog                                                  
            If I were asked to give one statement that rings true as I moved through the classes to secure a degree in communication, it would be “know your audience.”  As we moved into this Capstone class we have been asked to develop a blog and I am taking that information to heart when I selected Perpetual Parents as my topic to blog.   “Write about what you know” allows me to pull from years of experiences and to blog about a topic close to my heart.  This also allows me to identify a “target audience” and because I live in that audience, I find it easy to write from what I know and live.
            Some of the tips from researching the development of a good blog might include having a voice.  Who is writing this and what is their passion?   A good blog shows folks where you are taking them and encourages them to stay tuned.  It assures the reader that there is a story that will support them.  Some great blogs might be creative and only use photos and videos.    Good blogs make you want to give it a try yourself.
            This was my first adventure into blogging so I followed my own research:  “Know your Audience” and “Write about what you Know.”  Being the parent of a young man with disabilities who lives with us has given me over thirty years of life to pull from.   It is my assumption that many parents of children with disabilities have a belief that the State will provide necessary living for their children as they age into adulthood.  “If anyone who has a disabled child expects the State to come up with a residential home, they’ll be out of luck,” states Lorraine Phifer, 67, a Chicago mother of two disabled adults.   With a current annual price tag of $124,090 per person for the State; it becomes clear that State institutions can not be the only answer.  State run institutions are not an option for many families who want quality care.   Because of this need to be planful, a blog for parents and siblings of adults with disabilities could be very helpful.  Adult service providers would also be able to glean intimate information from the dialogues within the blog.
            Robert evaluated my blog and encouraged me to remove the cover page from the last assignment, which is an easy fix.  Robert also encouraged me to use a different title that might be larger.
            Barbara asked me to look at my blog for functionality.  I appreciated her encouragement to “interact with the content.”  “A good blog is much more than a diary with comments. It allows for you to interact with the content, and makes your experience much more enjoyable.” (Martin, 2012).   I have struggled with how much content is too much and how much content is not enough.  This can be a heavy content area; and I have been questioning whether readers want a blog to remain light or to give them heavier information that will benefit their children’s future.
  If I were to continue to write a blog, I believe I would “chunk” pieces of content through-out the daily blogs.  It is my assumption that parents who are also raising adult children have very little personal time in their busy schedules.   I would appreciate mini topics.  I believe I would become invested in a blog if mini topics were easily identified and could be accessed quickly, contained data/research, and also brought a personal touch to the blog.   It is documented that the average blog reader stays 96 seconds per blog.   Opinions vary according to length.  Article I have read vary from 100 words to 1000 words, although both writers felt a post of 400 was pushing the limits.
According to Tracy Gold, “Some of the best blogs use unusual formats, employ only photos and video, or utilize the list format to artistic effect” (Gold, 2011). As I work to finish my blog for this final project, I want to make it eye catching, appealing, have content that informs and supports.   Most important to me is that my blog includes a call to action.  It is easy for families to “bury their head in the sand” and expect someone else to care for their child when they get older.  It is a dark hole that exists for us and one that needs to be brought to light.  Families need to have information and begin dialoguing as a whole family about what to do with “Barry” when mom and dad simply get to old.  My wish is to honor the families who are taking on this perpetual parenting role, inform, education, and connect.  Families can learn from each as we face this wonderfully exhausting fulfilling challenge. 

Resources:
Gold, T. (October 11, 2011).  What Makes a Good Blog Post:  10 Tips for Corporate
            Bloggers.  Downloaded from http://www.whatmakesagoodblogpost/htlm
Martin, M. (June 26, 2012). 7 elements to make your blog look great. Pro Blog Design.

Monday, July 23, 2012

Some Assembly Always Required!

Some Assembly ALWAYS Required:

As our children grow up and move to all parts of the world, I try to stay connected.  Thankfully, we are blessed with computers, Iphones, Skype and blogs.   As we continue to parent Barry in our home, we all partner to find time to come together - no matter the miles. 

This past week we traveled from Chicago to Oklahoma...half way to Dallas....to visit with Brett for three days of boating!  These frequent visits help Barry stay connected with Brett, and for Brett to know and understand Barry.  The highlight of the visit was an afternoon of tubing on a lake.  The boys used a large float built for two and we loved hearing Barry belly laugh as we attempted to dump them.  We finally rolled Barry into the lake; and watched as Brett jumped from the float to swim back to his brother so that he was protected in the lake until we could bring the boat back around to pick them up.

It's so nice to see children protecting each other.  We will not be here to protect our children forever, so instilling that quality in all our children is a small gift to celebrate!

No Such Thing as a Diplomatic Hand Grenade

            As much as we enjoy sharing good news; we also are called upon to deliver difficult news.  No matter how we attempt to sugar coat difficult information, the “hand grenade” is still going to do damage.   Try as much as you like, there is no way to hand off a hand grenade.  But there are communication skills and strategies to support you in sharing difficult information.  The skills are learned and need to be practiced to be facilitated well.  This assignment will outline the skills and strategies I would draw on to deliver difficult information to an employee who has been performing at a substandard level, displays confrontational behavior and attempt to outline a plan for improvement.
            The Harvard Negotiation Project, who wrote Difficult Conversations:  How to Discuss What Matters Most, would remind us in every difficult conversation we need to have three different conversations:  The “What Happened?” conversation, the “feelings” conversation and “what we can’t change and what we can change” conversation.
            The “What Happened?” Conversation is where we spend much of our time in difficult conversations because we usually have different stories we want to tell.  We both feel our story is the most important and usually, the most correct.  We struggle with who is right, who is wrong, and who is to blame.   It is imperative that we clarify the different stories in order to improve our ability to have a deeper conversation.   Many times we spend do much time jumping to who is right and who is wrong, that we do not have a fluent dialogue around the data.  Before coming into a conversation with an employee I would spend a good deal of my time making sure the data was correct.  I would be gathering information on dates, times and employees involved in any situation that I wanted to dialogue around.  If there are customer service reports or co-worker reports; I would have those reports as data so that we could look at each.  I would have a copy of all written data for the employee, as well as myself.  Having the data allows you to use “Third Point.”    Michael Grinder would explain that “third point” is a strategy that established a triangle, with the facilitator at one point, the employee at a second point and the data at a third point.   Having the data separated from the two individuals in the conversation allows for safety, it separates the information from each person without eye contact, which helps to depersonalize the data.    This makes it much easier to talk about the data because its just data (Tipton & Wellman, 2003).   Having all the data validated and prepared to share allows the dialogue to be about facts instead of personalities.
            Once I had the data prepared and I felt secure in understanding the data; I would find a time and place for this dialogue to take place.   I would invite the employee to come into my office and explain that we needed to find a time to meet and dialogue around his performance.  I would offer several times that would allow the employee to also gather his data and thoughts, and within a time frame that accommodates both parties.  The location for this meeting should support both parties in time, location and amount of time set aside.  The location should always provide privacy and the climate should be positive.  Conflict management fails to produce constructive and positive results when it suffers from a harmful conflict climate (Shockley_Zalaback, 2009).    I would want to be assured that the meeting did not consist of threats of power abuse, competition, distrust and defensiveness.   The climate should be nurturing and consist of a balance of power, cooperation, trust and supportive behaviors that encourage dialogue, and mutually satisfactory outcomes.  My outcome would be to have better understanding of the data, and to collaborate on a plan to achieve better outcomes for the employee as well as my company.   Dialoguing with the employer should also open up the opportunities for both parties to reflect and discover who each might want to change their own behaviors.   Being very planful in preparing for the meeting and having positive presuppositions for positive outcomes for the meeting will build a foundation for success when the actual meeting takes place.
            Harvard Negotiating Project would say the second phase of this conversation could be the “Feeling Conversation” (Heen, Patton &  Stone, 2000).   Once my employee and myself had reviewed the data, and come to a basic mutual understanding around the facts, we would move to a conversation that involves emotion.    In the presence of an emotional meeting, many of us work to stay neutral.  Bringing up feelings and emotions can make us feel vulnerable.   Difficult conversations do not just involve feelings – they are at their very core about feelings.   Harvard would explain that “engaging in a difficult conversation without talking about feelings is like staging an opera without the music!”   Engaging in a conversation without putting your feelings forward may save you time and reduce your anxiety; but if you do not share your feelings, what have you accomplished without sharing your feelings and addressing them.
            In order to put your feelings on the table, we need to be very mindful of the emotion that comes with those feelings.  We would need to practice some basic Adaptive School Skills:  pausing, paraphrasing, probing for specificity, inquiring, assuming positive presuppositions, putting ideas on the table and being watching of our behaviors (Garmstron & Wellman, 2009).   We would want to be mindful of our body language.  Remember that over 80 percent of our communications are read through body language.   Am I giving my employee my full attention?  Am I offering an inviting voice?  Am I using welcoming body language, nodding my head, smiling, and listening intently?  Am I paraphrasing when the emotions are running high so that my employee knows I am attending and want to understand him fully?  Am I asking my employee if he needs additional information, or if he has questions?  Am I pausing, so I am giving both of us time to have a deeper richer conversation?  Am I providing an atmosphere of trust and support?
            The third stage Harvard explains is the  “Identity Conversation.”   This stage may be subtle and the most challenging because it asks us to looking inward.  This phase asks you to look at your own self-esteem, your self-image and who you are in this world.    As we enter into the third stage, we begin to understand the errors we might have all made, and hopefully we will be entering into a conversational shift.  We would have a better understanding of the data, a common understanding of the issues from both perspectives and we would have heard each other talk about how this issue affects our feelings.  We are now ready to shift to how we take that information and collaborate in developing a plan that supports both parties.  What does each person need to do to reach shared outcomes?  This could be an opportune time to ask the employee, “What would you like to see change?”  This allows the employee to offer his own resolution.  This may also be a time when both parties may need to break.  Some people require more reflection.  Would it be beneficial for both parties to “take a balcony view of the situation” and suspend the dialogue?  Could you agree to come back together in a few days to complete the dialogue?  When conversations are intense and stressful, taking a break and allowing each party to reflect and soul search gives each party an opportunity put themselves in each other shoes.  Putting the opportunity to “suspend” the dialogue may be a very positive opportunity.  Allowing additional time could support a shifting in our stance to invite each other into the conversation.  The conversation moves from “me-ness to we-ness” in how “we” can improve our work to reach positive outcomes for everyone.
            Conflict is good, if it is managed appropriately.  Conflict is like waking up every morning; it is part of our everyday life.  Learning to deal with the conflict and how to “fight gracefully” is a skill that enhancing our communication with family, community and work (Shockley-Zalaback, p. 295).
            “Conflict was like having a big wave come at me on the beach.  If I moved fast enough, I might be able to dive under it.  Sometimes I could just stand my ground against it.  And other times, it knocks me on my rear.  But until recently, I didn’t really think I could ride that wave, to turn it around into something productive” (Managing Conflict Through Communication, pg. 2).    All communication is processual; conflict resolution is a kind of communication situation that has particular characteristics, which, if not handled effectively, can make an interpersonal relationship problematic and even end a relationship.  It is essential that we recognize this as a part of our life, develop the skills we need to facilitate those conversations with our families, co-workers and our community.

                                                                          References:
Garmston, R. (2009).  The Adaptive School:  A Sourcebook for Developing
            Collaborative Groups.  Christopher-Gordon Publishers, Inc.  Norwood, MA.
Heen, S., Patton, B. & Stone, D. (2000).  Difficult Conversations:  How to Discuss What
            Matters Most.  Harvard Negotiation Project.  Penquin Books. 
Lipton,L. and Wellman, B. (2004).  Data-Driven Dialogue:  A Facilitators Guide to
            Collaborative Inquiry.  MiraVia, LLC.  Sherman, CT.
Managing Conflict Through Communication.  VitalSource eBook for Ashford
            University, 4th Edition.  Pearson Learning Solutions.
Shockley-Zalabak, P. (2009).  Fundamentals of Organizational Communication. 
            Knowledge, Sensitivity, Skills and Values.  Seventh Edition.  Allyn & Bacon.



           



Friday, July 6, 2012

Who are "Perpetual Parents?"

"Perpetual parents" are mothers and fathers who find themselves parenting adult children with disabilities.   We have been advocates for our children from "womb to tomb" and as we begin to look toward retirement, we also continue to parent adult children who require our support seven days a week, 24 hours a day.  When the boys were 4 and 7 (picture below) parenting was part of the "deal." 




 Today I am 58 years old, and I continue to parent two amazing young men.   I am the mother of Brett, a 35 year old veterinary specialist who lives in Dallas, Texas.  I am also the mother of Barry, a 32 year old wonderful man who continues to live with my husband, Rich and I in Peru, Illinois.



Unlike Brett, Barry was unable to experience college and to establish himself in a profession due to his disability.  Barry has cognitive challenges and is non-verbal; which doesn't stop him from rooting for the Green Bay Packers, Chicago Blackhawks, enjoy Bruce Springsteen, collecting more movies than Blockbluster or working his regular shift for the past twelve years stocking ice cream at our area's largest grocery store.


What are the challenges of being a "perpetual parent?"

  • Because of the baby boom and medical advances, experts predict that the number of people age 60 and older with developmental disabilities, cerebral palsy and autism will double to 1.07 million by the year 2030.   Some 80 per cent of these adults are living with relatives or their parents now.  What will happen to these adults when their caregivers are unable to care for them or die?
  • If you do not have a family member designated to provide support for your adult child, who will?
  • Research has documented that older parents experience health related problems and emotional worries that are derived from the cumulative stress of care giving demands.
  • Services to support families are ever shrinking due to budget demands at the state and federal levels.
  • Additional costs add up for families who parent their adult children.  (Clothing, food, diapers, medications, and adaptive equipment just at the time perpetual parents need to be saving money for their own retirement.
  • Free time?  How do you find the time for yourself to recharge your batteries?