July 2010


Because copyright laws have changed radically over the year, I’ve not worried about copyrighting this blog.  As you probably know, about 20 years ago, the laws governing copyrighting changed.  Now, a work is copyrighted when “it comes from a person’s typewriter.” 

Of course, most people no longer use a typewriter but the same applies for any work that is written.  Using and reusing any parts of this blog is permitted and even encouraged as long as you give us credit for any parts that you use. 

This change in copyright law actually came because many Christians, especially the Mennonites, were freely giving their written materials and songs away during the Jesus movement in the 1960’s.  However, later others were copyrighting the songs and trying to charge the authors with the privilege of publishing and using their own artistic property.  When the people who copyrighted the material had the gall to take the authors to court, the courts ruled in favor of the true authors. 

Thank you for the courtesy that I believe you will give to this weblog by giving credit for any material that you use.

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My father was an amazing person.  It was well-known that he could do anything.  When we were entering our teenage years, he designed and built a boat, then a set of water skis so that his three children could learn to ski.  He repaired TV’s and bicycles.  Working for months in the cellar (that he built himself), Daddy built, repainted and repaired toys, sports and other equipment for our Christmas gifts.   After he retired, he built a two-story house from the ground floor.  The finished inside work, he contracted out; but everything else was done by a crew of one, him. 

I always thought that my father did all those things because he wanted to do them.  Now, I realize that much of what he accomplished was out of necessity, not desire.  We weren’t poor but that was because my parents were frugal and inventive.  Plus, they were constantly being creative and expanding their skills and developing talents.

This week, I’ve written our 2010 Christmas play.  It is still in the polishing stages.  However, I put a deadline to complete the play this week–minus the finishing touches.  A parent, whose child is new to Special Gathering, said to me after I explained that I had completed the play, “You do everything.  I didn’t know you were so talented.”

After delivering their son back to his house, I got back into the van and thought, I can only do these things because I have to do them.  Anyone in disability ministries will understand this need for increased creative juices.  He will probably find himself pulled beyond his normal skill sets in order to be successful in ministry. 

David never thought he could lead a choir but he did it for almost five years.  Debb, who believed she had absolutely no musical skills,  successfully conducted a handbell choir for three years.  Richard writes Christmas plays.  Renetta and Laura became clowns.  Dan is a puppeteer.  Diane has learned the skills of table decorating for the seasonal parties in her program. 

The important thing is to understand that you can expand your talents and skills only by experimenting and trying to do more.  Don’t be afraid to fail.  There is so much that can go wrong that you can expect to really foul up more than occasionally.  However, becoming more than you can become is only accomplished by trying and trying again. 

Amos was a herdsman and a fig farmer but he dared to go to Israel to prophesy.  Isaiah was probably a government official.  Many Bible scholars believe he may have been a prince.  But when God called him, he said, “Here I am.  Send me.”  Was preaching his talent?  Probably not.  But we read and marvel at his prophetic utterance.  God expanded his abilities.

A  Jack-of-all-trades in ministries may be moving out of necessity.  She may be experiencing new talents as she inches through the will of God into obedience.

This week I’ve been continually blessed as I remember the statement that Jonah made after God had forgiven Nineveh.  In Jonah 4:2, we read, “Jonah prayed to the Lord, “When I was still in my own country this is what I said would happen. and that is why I quickly ran away to Tarshish.  I knew that you are a God who is kind and shows mercy.  You don’t become angry quickly, and you have great love.  I knew you would choose not to cause harm…”  (NCV)

I’ve been captivated by the wonder of this God who loves boundlessly, who is kind and shows mercy–to me as well as Nineveh.  Of course, Jonah was asking God to kill him because Jonah’s mission had been successful and God had proven to be good, gracious and forgiving.  Often I’ve zeroed my attention toward the warped statement Jonah used to describe his faith and overlooked the magnificent truth that he expressed.

This side of eternity, we will not be able to explain why our members have been born with disabilities.  Yes.  We know and acknowledge that God can “strike a straight lick with a crooked stick.” He can orchestrate amazing blessings drawn from tragedy.  However, can we ever rest easily knowing that innocent babes are born to great suffering and distress.

Yet, we can be assured that God is good and loving.  Today, I was talking with a woman almost 50 years old.  She had been rushed to the hospital a few days before because of hemorrhaging.  “I must re-evaluate my life,” she confessed openly.  I’ve been visiting her work place for almost a year.  Today, she was speaking to me because she knew that I know the God who is loving and forgiving.  And she wants to know Him, too.

I heard her say, “I don’t know why I’ve resisted the Lord for so many years–wasting almost a lifetime.”  I walked away thinking.  It isn’t merely the mentally challenged community that needs and desires a loving God.  There is a song, “People Need the Lord.”  I found myself humming the chorus the rest of the day.

Nevertheless, I’ve never encountered a population of people, like the mentally challenged community. They are people who want to know and understand God’s ways and love.  It is a great privilege to be called to minister to this cloistered sub-culture who want God’s forgiveness and desire to live godly lives.  At the close of the day, my prayer is I know that you are a God who is kind and shows mercy.  You don’t become angry quickly, and you have great love.  I know you will choose not to cause harm.  Continue to make my heart grateful for the calling you’ve placed on my life.

  1.  Able to discern the central theme of a scripture text.
  2. Able to find one central idea that can be applied to the lives of members who are developmentally disabled from the scripture text.
  3. Able to find an attention getting device that will apply to the central theme.
  4. Able to explain or describe the scripture passage with clarity and brevity as it relates to the central theme.
  5. Able to give instructive points that can be applied to the everyday life of a mentally challenged person.
  6. Able to end the message with a clear direction or a clear statement of God’s purpose in the scripture as it applies to the life of the congregation.
  7. Able to deliver the message within the allotted time period–usually no more than 15 minutes.
  8. Able to deliver the message with simplicity and clarity of speech.
  9. Able to enunciate clearly so congregation can understand the thoughts presented.
  10. Able to preach the given text rather than preach to a certain person or about a certain failing or sin of the congregation or individual.
  11. Continually striving to fully identify with the hurts and needs of the disability community.
  12. Able to interject humor within the context of the scripture.

These are 12 point that Special Gathering believes are needed to be able to preach to people who are mentally challenged.  What are others that you believe are important?

When it was learned that Lisa had the disease Moya Moya, her mother knew that their lifestyle would change.  Born with Down’s syndrome, this single mother and her daughter had lived 30 years together.  Much of their time was spent seeking ways to make Lisa’s life easier.  Now they stood at a cross roads again.

When a person with disabilities slowly declines, family members adjust their lives in minute increments.  It is when the effected person plummets downward quickly that the family and caregivers are thrown into a cross roads situation. 

There are no easy or pat answers.  Each family unit must find their own solutions.  However, there are some things that you can do which will help.  Here are some of them.

  1. Allow the caregiver to vent without trying to give easy answers.  Slowly, give them time to debrief.  Even with close friends, the family will assume that you aren’t truly interested in hearing about their fear, needs and concerns.  They will not open to you quickly.
  2. When the caregiver gives you a flippant answer with a big smile and you know that the caregiver is facing a crisis, don’t allow the facade of happy contentment  bluff you. 
  3. Probe a bit.  Ask questions. 
  4. Show genuine concern; and the person will respond to your inquiries.
  5. Expect and extend yourself beyond the self-pity of the caregiver.  There are many conflicting emotions that a caregiver is wading through.  Self-pity is one of the least attractive ones.  She knows it; but self-pity will rear its ugly head when you scratch beneath the tough exterior of the caregiver.
  6. After a time of listening, don’t be afraid to give answers.   However, you should assume that the caregiver has probably already exhausted most of the obvious avenues.
  7. If you have a contact person or organization that you believe will help, look up the phone number yourself, write it down and give the caregiver the number.  If you merely, drop the information (even extremely valuable)  in his lap, it will seem like just ONE MORE THING he must do.  Even a small task–like looking up a phone number–can seem like an insurmountable effort to a person who is drowning in other details.
  8. Don’t offer to do something unless you really mean it. 
  9. Realize, if you offer your help, that you will be needed at the most inconvenient time.  Therefore, be careful how you offer your help.
  10. Don’t be disappointed if your advice is not followed.  If it is sandwiched between genuine concern and love, it will be appreciated. 
  11. Pray for the family as often as you remember them.  Prayer is the one sure answer to this perplexing concern.

No one likes standing at a cross roads without a road map to follow.  Yet, most caregivers don’t have anything to guide them.  One of my favorite teacher, Os Hillman wrote recently, “The way of the cross is not paved with lilies; it is paved with grace.”   As you extend God’s grace with your understanding, help and prayer, your goodness and love helps to give a family or caregiver the ability to see the direction God desires for them to go.

The ADA Effect

            When the Indialantic One Condominium was constructed on the oceanfront in Indialantic, Florida the structure seemed to be built around a wheelchair ramp which graces the entire façade of the condominium.  This attractive entrance is an accommodation made by Architect Jim Mayes, Sr. which meets the requirements of the Americans with Disabilities Act (ADA).  Unless a person is involved in human resources, construction or architecture, he may not realize how much The Americans with Disabilities Act has changed the face of the US. 

            It has been almost two decades since President George H. Bush signed the ADA into law.  Since the ADA was imposed on the business community, the American economy has been greatly affected by this Congressional mandate.

            The disability community applauded the enactment of the law.  Briefly stated, ADA calls for “reasonable accommodations” for persons with disabilities.  This takes on many faces, from public transportation that is accessible for everyone to larger bathrooms in public buildings. 

            Sandra has been wheelchair bound most of her life.  She is young and agile.  Nevertheless she knows that crossing a busy city street without curb cuts in the sidewalks puts her in imminent danger.  Getting that chair over a curb before the green light turns to red is potentially a suicidal act. 

            For Frank, a NASA engineer and stroke victim, maneuvering in a bathroom not covered by ADA means a loss of dignity in more ways than one.  Brett cycles emotionally.  He knows the anguish of trying to hold down a job during the torturous days of instability.  With the enactment of ADA, persons with disabilities began to move more fully into the workforce.   Thus they could become contributing, tax-paying members of society, rather than a continuing drain on the good graces of humanity.

            However, I had not recognized the cost involved in implementing and maintaining the law until a conversation with a local business man about 12 years ago.  Art Evans, Chairman of the Board for Fort Macaulay Development Consultants, helped me see the enormous drain this law could have on business.  Evans reported in a matter-of-fact, unemotional statement, “ADA is the most expensive unfunded mandate ever imposed on the business community.”  I made no attempt to defend the law because it was clear from his lack of emotion that the business community had reached an uneasy alliance with this mimesis impacting their bottom line. 

            Yet, his statement set into motion the investigative part of my brain. How would the business world handle this intrusion?  Over the years I have observed multiple ways industry and business have used innovation and imagination to employ the directives of the ADA to their advantage. 

As our population has become more elderly, the number of disabled residents has mushroomed.  The US Census reports that 17 percent of our population is disabled. The investment of an elevator in a second story building is an important necessity for an aging people.  Wheelchair ramps are no longer considered an unsightly nuisance but ramps are incorporated to enhance the beauty of the building, frequently replacing steps. 

            Picture menus are routinely used in restaurants.  The value meal at the Burger King on US1 in Melbourne–and all of the fast food restaurants–is a direct result of the “reasonable accommodation” for persons who may not be able to read.  People who are mentally challenged (mentally retarded) can see the picture and recognize the numbers.  Restaurants began coupling meals together and putting up pictures so that persons with disabilities could order more easily.  Now all of us find it convenient to order from the picture menus.

            The larger bathrooms required by ADA have become important to everyone, especially the fastidious shopper.  I overheard one young mother say, “I spend too much money at Barnes and Nobles on New Haven.  Though I usually go in just to use the restroom.  Their bathrooms are the best in town.”  Shoppers are no longer required to escort their children to a closet-sized restroom.  Again, the business community took a negative and turned it into an attractive drawing card wooing customers.

            No doubt, ADA is still an expensive law.  Yet, industrious businesses have succeeded in turning a negative into a positive for themselves, the public and their bottom line.

Please see the e-mail below and distribute it to families who meet the
 criteria and would like to participate in this national electronic survey.
 Thanks, Susan

 Susan J. Redmon, RN, MPH, CCM, CRRN
 Florida Department of Health
 Children’s Medical Services
 4052 Bald Cypress Way, Bin A06
 Tallahassee, FL 32399-1707
 Ph: (850) 245-4200, ext. 2246
 Cell:  (850) 728-1092
 Fax: (850) 488-3813
 E-mail: Susan_Redmon@doh.state.fl.us

 CMS Network Mission:  Champion excellence in the delivery of health care
 to children with special needs through a comprehensive system of care.
 For information regarding CMS please visit our website at:
 http://www.doh.state.fl.us/cms/index.html
 

 From: Nancy Bailey [mailto:baileyn@paec.org]
 Sent: Thursday, July 22, 2010 8:21 AM
 Subject: Request for Survey Participants
 Request for Participants

 PACER Parent Survey

 http://www.fastfamilysupport.org

 Parents or primary caregivers of young people with disabilities 12-22
 years old are invited to take part in a national research study by
 completing the National Family Support Survey, conducted by the FAST
 Project. Answers to the questions on the National Family Support Survey
 are confidential and will help the Administration on Developmental
 Disabilities, parent centers, and researchers understand the information
 and supports families need to prepare for moving into adulthood. This
 information may help to inform program development for youth with
 disabilities in the future. The survey is available in Spanish also.

  Brenda Clark

 Florida Center for Inclusive Communities (UCEDD)

 Louis de la Parte Florida Mental Health Institute (FMHI)

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