December 2010


It’s cold in sunny Central Florida.  I’m off to see my husband in the hospital and to spend the morning and early afternoon with him.  My arms are loaded with lots of presents and surprises for him.  In his confused, after surgery, state he doesn’t even realize that it’s Christmas day. 

 Our children and grandchildren will be coming in a few days to visit their ailing (grand) father and to play with their mother and grandmother.  I would like a hamburger for my Christmas dinner and go to see the Disney’s, Voyage of the Dawn Treader.  Think I’ll call my friends living in the Gillespie group home who have no family living and no place to go.  I know that the staff has planned a Christmas lunch so we can take a late-afternoon movie and then grab a hamburger at MacDonald’s for supper. 

Sounds like a great Christmas day plan.  On days that I’m alone, I know that I have good friends within the mentally challenged community who will always welcome a visit and a Christmas day adventure!  Charge!

One popular speaker within the disability circuit speaks withdistain about the “Three F’s” to explain where the mentally challenged community is routinely delegated in the work force.  They are food, flowers and filth.  It has been seen as a blight on our community that more creative positions have not been offered or sought for them.  However, as our nation experiences a booming jobless rate, it appears that the jobs usually held by our population remain interestingly secure. 

While I’ve not done any real research, in our area, it is the high-paying construction jobs that have disappeared.  Real estate excesses vanish as the housing market  makes a necessary bubble adjustment.  Politicians encouraged–and even demanded–that bankers make mortgage lending more accessible to lower-and-lower-income clients.  People with little experience or education purchased houses with the expectation that their inflated wages would remain the same; and now our entire nations faces a new, painful reality.

But jobs working with food, flowers and filth chug along at a steady pace, unaffected by the inflation excesses or the disastrous job market.  Employers need people who are willing to take part-time jobs which pay minimum wage.  Those are the positions that we fill. 

  •  Food–While the high-end restaurant business may be hurting, the fast-food chains and moderately-priced eateries are booming.  That’s where our members work best.  Additionally, people are buying more groceries and eating out less.  Grocery stocking, bagging and even cashiers are positions that mentally challenged people fill with skill and delight.
  • Flowers–The increasingly-influential green movement encourages planting and gardening.  Also, people who need to cut their food budgets may be growing their own fruits and vegetables.   This means that the nurseries and garden shops aren’t going out of business but seeing an increase in their sales volume. 
  • Filth–Cleaning up messes made by natural and man-made disasters will always be jobs that are needed.  Whether a man-made disaster is a dirty, road-side bathroom maintained by the county or clean-up from a snow storm, filthy jobs will remain secure unless there is a total collapse in our economy.

The reality is that what seemed like a curse for our population only a few years ago has become a blessing.  In the past year, I’ve spoken openly and honestly to our members about the economy and the budget deficits that all of our states and federal budgets face.  I explained that even though the our economic pictures are gloomy, God is in control of our lives–not the politicians, the legislators, the executive branch or even our parents and families.  We can trust God. 

Our members see the news.  They may even read the papers and connect on the internet.  They understand what is happening in our country.  As our nation slips deeper into debt, as federal, state and country budgets are dominated by red ink, we must be the voices of encouragement and hope for our members.  They are fearful of the future.  We should explain the truth that things are bad.  However, the greater truth is that God love us and he will embrace us with his love, protection and care.  The three F’s are a primary example.

A friend attended the NACDD conference in Orlando. The Commissioner for the Administration on Developmental Disabilities (Sharon Lewis) spoke.  At a private meeting with a several others, policy was discussed.  Ms. Lewis said she thinks we are going to end up with “Global Waiver.” That we will see DD Waivers go away. That a state will have one waiver that applies to DD, TBI, Aids, etc. She also made reference to mid-class families not getting what they get now.
 
My source will check with the other people at the meeting to see if they heard the same thing.
 
Lewis also said in her speech (Informant did not know if she was talking about DD Councils or the DD population), that now that Kennedy was dead we had problems.

It appears that my husband’s dementia has advanced to the Sundowner’s stage.  According to the website, SundownerFacts.com:

Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down.

Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause.

Last evening, when I arrived at the Rehab Hospital where he is currently recouping from surgery, my husband was extremely agitated and confused.  He believed that we were living somewhere together.  He didn’t know where the somewhere was; but he did know that he wanted to go home.  I tried to explain that we were in the hospital and that we could not go home until the doctor gave him the okay.  That didn’t satisfy him.  “You will never want to go home!  You would stay gone forever.  Take me home now!” he demanded. 

Over the years, I’ve fought the battle of keeping a balance between home, ministry and my relationship with the Lord.  I’m fully aware that my ministry can easily become my god.  As I drove to my next appointment after leaving the hospital, I still had Frank’s pleading words ringing in my heart, “You will never want to go home.”  As I drove in the cold silence, I began to review the past years.

In reality, I believe that I’ve kept a good balance between home and ministry.  Over the years, I’ve done this in different ways, depending on the needs of my husband and family.  Nevertheless, some things were pretty basic.

  1. Meals were always family times with china plates and napkins. 
  2. I asked people to never call me after 5PM when the family began to gather for the evening. 
  3. I’ve kept my evening appointments to a minimum. 
  4. Evening ministry was always my husband’s ministry efforts, not mine.  I supported him.  Sometimes I did more actual work than he did; but it was only to support what God had called him to do. 
  5. While our children were at home, I did not bring my work home but kept family time, family time.

However, I’m always cautious and concerned about keeping a balance between ministry and my relationship with the Lord.  The differences are subtle.  Yet, the subtleties can be deadly for our spiritual growth.   Here are some keys that I’ve learned from others who have helped me to keep on guard.

  1. I recognize that I am as vulnerable as the next person in allowing ministry to be my god.
  2. I keep ministry and my relationship with the Lord totally separate. 
  3. I allot a set-aside time for prayer and studying my Bible.  I pray in the morning and read my Bible in the evening.
  4. I keep my personal Bible study separate from my ministry study.
  5. Of course, I should be open to hearing from God during my private devotions about my ministry; but I don’t allow this time to be a part of my ministry.  In my mind, I build a barrier between the two.
  6. I keep my prayer and Bible study a private and personal meeting with the Lord.
  7. I’ve learned to listen to family and friends and their complaints regarding my ministry time.
  8. I really try to never fall into guilt regarding ministry time; but to be realistic regarding the time and energy I spend on ministry details.
  9. I’m continually looking  for ways to simplify ministry tasks, especially the ones that leave me exhausted.
  10. While I pray daily for The Special Gathering during my prayer time, I keep myself detached from the emotions of the ministry during this time.  I pray for all the Pastors of Special Gathering daily; but my prayer for myself is no different from my prayer for our South Carolina Area Director or our Executive Director. 

Can we always succeed in keeping our ministry from becoming our god?  Of course, not.  We will stumble into that trap at times.  Can we always keep our private devotions detached from our ministry needs?  No.  But God honors our efforts and our heart’s desires.  In fact, He may even allow us to fail so that we will see how dependent on Him we must be, even in our need to keep ministry and relationship separate.

Today, I was reminded by Os Hillman the truth and importance  of Exodus 16:4.  “Then the Lord said to Moses, ‘I will cause food to fall like rain from the sky for all of you.  Every day the people must go out and gather what they need for that day.  I want to see if the people will do what I teach them'” (New Century Version).

When God takes us into the wilderness, we find that we must depend totally on the Lord.  Imagine, no way to purchase steak or after-school snacks.  No grocery stores, 7-11 stores.  No farms, plowing or harvest.  No orange groves.  No Macy’s to purchase a new Christmas sweater or shoe stores to satisfy our inherited shoe genes. 

The wilderness always means that we are dependent on the Lord, totally and completely. 

The reason I was impressed by this verse, however, wasn’t because of my dependence–though it is vital for my spiritual growth.  It is because of the mentally challenged community.  Often when I speak and teach about depending on the Lord, I see from our members’ smiles and other expressions of understanding that this is a principle they understand and accept.  Even our lower functioning members comprehend this dogma. 

The mentally challenged community are people who are totally dependent on others.  There are very few things that they can do completely on their own.  Even when they are gifted in one area, like Michael, our members may be captured by emotions and stresses they cannot understand, much less explain to others. 

Over the years, I’ve come to know and love Michael because of his sweet, giving spirit.  I’ve also come to appreciate and depend on his talents and giftings.  Nevertheless, there are times that Michael slips into an agonizing funk.  Trying to probe and examine him, only makes his pain more extreme.  As talented as Michael is, he is not completely verbal.  Perhaps he does not even know what brings on his pain.  Everyone who knows him has learned to leave him alone and to allow him to work out his emotional crisis.  Only God can deliver him from his hurts and suffering and it takes time.

Frank, one of my closest friends, has an off-the-charts IQ.  Interestingly, he suffers from the same type of funk.  Even though he is extremely verbal, he is not able to explain why or how these awful fits of gloom come on him.  Like Michael, only God can release him from these times of hurtful suffering. 

This morning I was reminded of Michael and so many other members who must totally depend on the Lord.  Simple tasks, like buying groceries, are overwhelming ordeals without the help of another person.  Daily, practical living leaves them grasping for someone else’s assistance.  Their times of acute pain, however, are days that we must all allow God to do His supernatural work releasing them from their hurts and anxiety. 

“Isn’t there anything I can do to help Michael?”  I asked his caregiver, yesterday over lunch. 

“Pray.  You know our members all respond to prayer” was her wise answer.

All of us wander through the wilderness.  All of us share times of perplexing uncertainty when we must totally depend on the Lord.  Perhaps we can learn from our members during these anxious times of distress.  They are veterans of this lonely, foreboding place.  They understand God’s leading and grace in ways I only wish I could comprehend.

Just because our members are mentally challenged does not mean that they are not able to manipulate.  There was times that our members are able to be even more cunning than any person with a genius IQ.  Therefore, a teacher or pastor whose mission is to help disciple people who are developmentally disabled needs to try to decipher if a person is trying to pull a fast maneuver.  We have two choices.  1)  We can give a member the benefit of the doubt; or 2) we can call his bluff.

Several months ago, I was faced with an interesting situation in which a faithful member got an awful attitude because a close friend had hurt her feelings.  I was puzzled and confused about the behavior that she exhibited.  When it came time for her to help with a program we were presenting, she was not able to lose herself from those haunting and negative feelings. 

It was an important part that she was to play and the rest of the performers needed her.  I was not sure that others could do the performance without her.  Even though it seemed detrimental to the program that we were to present, it was as though she fully understood the awful situation her bad mood had put us all in and she was daring me to discipline her. 

I had time to pray about the situation, as we prepared for the performance.  I simply asked God to help me make the right decisions at the right time.  As we approached the stage for their time to present the Gospel message, I realized that her attitude had not changed.  Quickly, I knew that I must make a decision. 

I believed that it was more important to her personal growth to pull her out of the presentation than to allow her to participate in her present state of mind.  You could say that I chose to “call her bluff.”  I asked her to sit down and not be a part of the presentation.  At first, the other presenters were so shocked that I would take that stand that they were visibly moved and questioned me with their eyes.  They knew that by pulling her from the presentation, they were all in a more vulnerable spot.  However, they quickly recovered.  The presenters  not only finished their performance but filled in for her with amazing grace. 

After the dust had settled and I was alone to contemplate what had happened, the Lord spoke to my heart.  “Why do you constantly try to depend on someone other than me?”  Wow!  Where did this come from?  Was God calling my bluff?  It was true. I had come to depend on this  talented, young woman to bring success when we made presentations.  I felt the Lord was saying that I must continue to depend on Him not people who are gifted. 

More often than I want to admit, I slip into an attitude of depending of people, rather than God.  Most of the time, God gives me the benefit of the doubt.  That day He decided to “call my bluff.”  By pulling the person on whom I was depending, I had to depend fully on Him.  Of course, the Lord again proved that He is more faithful than I could ever hope to be.

Learning how to introduce the ministry of Special Gathering has actually been a long process for me.  Sure, within the first month, I learned the two sentence intro that I can give most people which “sort of” explains Special Gathering.  Yet, it took me some years to learn how to explain Special Gathering to people who showed a passing interest. 

Here are some things I’ve learned about introducing a ministry whose mission is evangelism and discipleship within the mentally challenged community.

  1. Most people–even those who are interested–don’t actually listen when you explain what you do.
  2. Many folks have a difficult time getting past their pre-conceived idea of housing and social work when they think of ministry within this field.
  3. Even after I explain the ministry of Special Gathering in specific terms, someone will ask if I also live in the group home or if I just manage it.
  4. Even family members may have a problem with this concept.  One sister from another state held the pre-conceived notion that I ran a group home because I was helping the family get a placement in a home in our city.  Even after great explanation, she said, “I don’t care what you say.  I KNOW that you are running this home.  I work in this field.  I KNOW how these things work.”
  5. Patience is needed in explaining the model of your ministry.  It may take months to get across the concept of community-based ministry that is not involved in any form of social work, but evangelism and discipleship.
  6. Learn the necessity of repeating your mission and your goal.
  7. Keep your presentation to a group as short as possible. 
  8. Look at the faces of the people to whom you are speaking.  Blank stares are not a good sign but they don’t always tell the entire story. 
  9. Tell snippets of stories that will illustrate a point. 
  10. Show/don’t tell about your ministry.

Of course, this isn’t a complete list.  What are some things that you have learned that are important?

Yes, I must admit that I get a bit weary of the youth culture. It isn’t that I don’t like young people. In fact, they are my favorite age group. However, it seems that they are the people who learn the quickest and adapt the best.

Who could imagine that they would understand how powerful texting could become and explode into the written word just when the rest of us were getting used to having a cell phone? They even adapted their own language to simplify the process.

Naturally, the older generation reacted with appropriate disgust. After all, wasn’t Pig Latin good enough for these up-starts? How dare they form a new language to make things easier for them to communicate?

When I was a child, there was great out-cry against comic books. My mother laughed and said, “If you are reading, I don’t care whether the words are in a bound book or a paper book.” Often, those of us in the older generation become proactive in countering every move that young people make. Then we cannot understand why they rebel.

Working with people who are mentally challenged adults, we often joke they are much like junior high without the attitude but not without the creative juices of that wonderful age group. Sunday evening during our Christmas play, I was fascinated with how Debbie captured what I had seen as a simple part of the angel who appeared to the shepherds and stole the hearts of the audience. Brian, who has been a lacidasical participant at practices, woke up to the importance of telling that about the miracle birth through song. He sang with gusto and great joy.

For me the miracles of the Man from Galilee have begun to manifest themselves in the gifts and creativity of this simple but amazing population. Thank you, Lord, for coming to live with us and change us into children of God.

You are invited to attend

God is With Us

A Christmas Canata and Play Presented by

The Special Gathering of

Indian River

on Saturday, December 4 at 7PM

Tabernacle Ministries Church

51 Old Dixie Highway

Vero Beach, Fl

and

Sunday, December 5 at 7PM

First United Methodist Celebration Cafe

110 E New Haven Avenue

Melbourne, FL

Come and invite a friend!

My approach to directing a choir of people who are developmentally disabled is very traditional.  I beat out the timing in the familiar directing patterns. (Others have told me that they find my method to be too complicated and they use a signing method.)  I’m left handed so I’m a bit backward, I beat out the timing with my left hand and give directions with my right hand.  Additionally, I’ve worked out several hand signals that speak clearly to the choir. 
 
For example, a closed fist means stop, be quiet or “shut your mouth.”  I tell the choir members that if they shut their mouths, it is impossible to sing.  I point to the choir member who is to sing a solo.  I may tell one person or the entire group to be quiet with this hand signal. 
 
I use my fingers and trumb to make a three-sided rectangle to tell the choir members to sing more softly.  I use this mostly for an individual who is singing too loudly.
 
When a soloist is to sing I put my fist to my mouth (as though I am holding a mike) to let her know to put the mike to her mouth.  I point to the individual to indicate that s/he is to sing.  To que the person that it is time to take their mikes’ from their mouth, I pull my “imaginary” mike from my mouth and put it to my side. I practice a great deal with the choir with the mikes.  I train them to hold the mikes to their mouth (like a lollypop or ice cream cone) so that the sound person can adjust the volume. I tell them that if they can’t hold the mike to their mouths, I understand completely and my feelings are not hurt. BUT they will not be able to sing a solo because they must be heard to be able to sing a solo.
 
Perhaps the most important thing that I do is to try and pick music that has longer musical breaks between the vocal phrases so that I can mouth the words to the choir before they sing them.  In this way, I can refresh their memories before they sing the words.  I also use simple signing for more complicated or longer musical phrases.
 
If a soloist or the choir has a tendency to sing words too quickly or too slowly, I will use my forefingers to punch my cheeks as I move my mouth to the correct timing of the words and music. 
 
In addition to mouthing the words before they sing them, I also mouth the words as they sing them.  I use exaggerated mouth motions to help them see the words more clearly.  Because the quality of my voices are very different from most of the choir members, I usually do not sing with the choir during a performance.  However, I sing at the rehearsals when we are learning a song, and I slowly wean them from my voice, as they become familiar with the words, by singing more softly, then stopping and only mouthing the words.  It is vital to wean the choir from my voice so that they learn to depend on each other, rather than my voice.
 
I emphasize the importance of looking at me at all times.  (This is the hardest thing most of our choir members have to do.) I also practice going on stage and off stage.  I tell them they are to walk on and off like a banana peel, not a bunch of grapes.  I feel this prepares the choir and the audience to take the choir seriously.  I don’t allow them to wave to the audience or make other hand gestures to the audience.  I want them to have the feel of an adult, professional choir that is competent in what they do. 
 
I have what I call my strength triangle.  These are the strongest, best quality voices.  I put them in the center of the choir.  This works several ways.  It disperses the voices that are of bad quality and it allows every person to hear the better quality voices as they sing.  They triangle voices encourage each other to sing with more volume and they keep each other on key.  (I don’t EVER talk about this with the choir.  However, they all know when they are moved into the Triangle).