July 2008

Yes. I said that it would take me an entire week of posts to explain this weekend.  Well, I meant it.  It may be beneficial for you to go back to Monday, July 28, 2008, to get a fuller picture of what was happening at The Special Gathering of Indian River during our worship times on Saturday and Sunday.  We are a ministry within the mentally challenged community whose mission is evangelism and discipleship.  Worship is the apex of all the many things we do.  Therefore, it is vitally important to us that things go smoothly but there are weeks that are beyond interesting and border on bazaar. 

Sunday at First United Methodist Church was a “beyond interesting” week.  We were celebrating a birthday.  Then some of our members with autism began to exhibit behaviors.  As I was closing the devotions for the day, Cris began to yell, “Don’t do that!  Stop it!”  Cris and her twin always sit in the back of the room.  They have a friend/volunteer who sits with them because even though Cris is high functioning she is blind and in a wheel chair.  She needs physical assistance.  Her twin is much lower functioning but with no physical disabilities. 

When I looked over her way, Cris was frailing and trying to hit her friend.  Because this is totally out of character for Cris, I knew that she must be seizuring.  “God wants to honor each of us.  Time it,”  I said without changing the tone of my voice.  However, eveyone seemed to be confused about what was happening and no one began timing the seizure. 

I knew I needed to get the attention of our most experienced volunteer.  David is a professional who owns and operates three group homes.  He has been on staff with Special Gathering.  “David,”  I said, “please begin to time this.”  He immediately started to time the seizure and walk toward Cris’ small group.

I closed in prayer and dismissed everyone.  The other volunteers snapped to attention and put their best plans into action.  “We have birthday cake,” Priscilla said loudly.  “Let’s go celebrate.”  After worship we normally go to the social hall for refreshments with the church body.  The other volunteers began ushering all the members out of the gym into the social hall.  David was still timing the seizure, by now it had been 1 minute and 45 seconds.  I called the girls’ caretaker.  After explaining the situation to her, I said, “We normally call 911 after three minutes.  It’s been 3 minutes and 10 seconds now.  I believe that most of the seizing has stopped but we can’t get her to respond.”

“Call 911,” the caregiver said.   “I’ll meet the ambulance at the hospital.”

After my phone call to the caregiver and while I was dialing 911, I asked if David to go to the hospital with Cris.  I gave the 911 rescue personnel the exact address of the church, the details of the situation and my phone number.  The ambulance factility was close by the church.  They assured me that they would be less than two or three minutes for them to get to the church.

By now children’s church had invaded the gym with basketballs and other ball games.  They were not able to move out of the gym because there were too many of them and there was only one person to supervise them during this play time.  Therefore, I thought it would be better to move Cris out to the large hallway that is also used as a lounge.  Normally, you would never attempt to move a person in her condition.  However, she was in her chair and this would be an easy and safer situation for her.  By the time we had moved her chair the few feet into the lounge, the fire department had arrived. 

Before they would take her, they wanted to see her ID and her Social Security card.  This was a new requirement from emergency personnel and Cris didn’t have any ID with her.  We again called the caregiver.  She had the needed information.  Once the ambulance arrived, she wanted to have the caregiver give her the same information.  The ambulance attendant was insistent that information regarding her medication could not be taken from our database that we carry with us accessed from the Internet but must be in writing.  I believe that this was HER requirement, only.  We have never had anyone ask for this. 

I can’t explain how extremely proud I was regarding the performance of our volunteers during this emergency situation.  To review quickly, these were the things that went smoothly and wer done right in the face of a seizure emergency.

  1. Our volunteers had been trained to know what should and should not be done in the case of an emergency.
  2. Timing of the seizure began immediately.
  3. Our staff and most experienced volunteers took control of the members and relieved me of the concern for their safety.
  4. Our senior volunteer knew that it would be expected of him/her to go to the hospital.  Before I asked, he had made plans to be at the hospital until I could arrive, after the program. 
  5. Unlike the shepherd who left the 99 to seek after the one sheep, a program director doesn’t have the luxury to leave the members and rush to the hospital.  However, I can assure that my most experienced volunteer goes.  Then after I have insured that all our members have gotten on the bus and they are on their way home, I can go to the hospital.
  6. After 3 minutes of seizuring, call 911.
  7. Have medical information ready for the EMT or fire department.
  8. According to a group of experienced nurses who have worked with us, you need to have a list of medications, information regarding if there are allergies or seizures for the EMT.
  9. Be sure that you have current phone numbers, emergency numbers and cell phone numbers for the people in your program. 
  10. Members should be moved from the area as quickly as possible.
  11. Do not move the person seizuring, unless they are in danger of being hurt where they are.
  12. Do not attempt to stop the fall.  However, you might cushion his/her head as s/he hits the floor.
  13. Do not attempt to pull the tongue out. 
  14. Try to get the person to respond to you by asking questions.  Don’t hit or slap the person but try to get a verbal answer from him/her.
  15. When you call 911, they will need the exact address of the place where you are at.  Be sure that you have this physical address memorized to the point that it will roll off your tongue.  If the address contains an East or West, this is essential for the ambulance to know.
  16. Remain calm.  Speak in a measured and calm, quiet voice.  In this way, your members will pick up from your cue and they will remain calm.

What are some other things you have learned in dealing with emergencies and seizures?

 This is information received from WaiverProvider.com regarding the tiers:



FYI–The judge has informed APD that the decision will not be made until
the first week of August.

Melanie Mowry Etters, APR, CPRC, CPM
Communications Director
Agency for Persons with Disabilities (APD)
4030 Esplanade Way, Suite 380
Tallahassee, FL 32399-0700
850-414-7551 Office or 488-4257
FAX 850-922-6456/SC 292-6456

Yesterday, July 28, a judge was supposed to give his decision on the Tier lawsuit that was brought forth by the
The Advocacy Center for Persons with Disabilities, Inc.
WaiverProvider.com has was told by Melanie Etters from APD Central office in Tallahassee FL. That the decision that was supposed to be made by a judge on 07/28/08 but has been postponed. Unless some other unforeseen problem arises, the Final Order should be issued the first of next week.  




Turning your back on behavior may work

Turning your back on behavior may work

What do you do when some of your members become agitated and cause confusion in your services?  That is what we faced at The Special Gathering of Melbourne on Sunday morning.  Special Gathering is a ministry within the mentally challenged community, doing evangelism and discipleship.  We meet at First United Methodist Church in Melbourne.  They allow us to use their facilities.  We kind of zig when they zag.  In that way, we aren’t in each others’ way but we are still a vital part of their Sunday worship program.  And they are a vital part of ours. 

Over the past several weeks, Johnny has become increasingly agitated during the worship time.  He is on the autism spectrum and mentally challenged; normally, there are no problems.  He sits quietly rocking and humming.  Yesterday was different.  For some reason, he became excited and confused.  His humming was almost at the volume of yelling. 

In addition, it appears that another member, Lawrence, is on a new behavioral program.  He is also on the autism spectrum.  His caregiver put him in the middle of the seating area and walked to the back of the room.  The Lawrence and his caregiver have always sat together in the back of the room because of Lawrence’s behaviors. 

About every five minutes Lawrence would stand up, talking in an agitated way to no one in paticular and point repeatedly and extravagantly to his companion.  Like troopers, all the members ignored Lawrence’s behaviors trying to concentrate on the sermon. 

At Special Gathering, we have several rules of thumb when dealing with disruptive behaviors.  We aren’t behaviorist and we don’t claim to be but we have found certain techniques that seem to work. 

  • It is always wise to chose your battles.  Decide what behaviors should be ignored and which ones should be confronted.  When I first came to Special Gathering, I would always error on the side of confrontation.  I believed that if behaviors were allowed, it would erode the authority I needed to establish for myself as the leader of the group.  However, after years of loosing battles,  I now prefer to error on the side of ignoring.  As long as you are completely and totally ignoring the person, it will be evident to everyone that you are choosing to not become a part of the scene.  Because this was a totally new behavior for Larry, I chose the totally ignore him and so did our members
  • Behaviors that are best ignored are those that are part of a person’s disability.  I would never stop Johnny’s quiet humming and rocking.  It gives him comfort and he only does it on the days that he is deeply disturbed.  When he becomes loud, there is one volunteer who is able to calm him immediately, with only a gentle touch on the shoulder.  She has trained herself to be acutely aware of his moods and to move quietly to Johnny when the noise level gets to a certain point and gently touch his shoulder. 
  • I also find that our members monitor each other.  As long as it is done without condemnation and in a polite and appropriate manner, allow the members of the class to do the correction.  A simple “that’s not appropriate behavior” from a peer is almost always enough to get someone who is acting out to cease.
  • Try to determine if the behavior is an attention-getting devise.  If you believe it is, then totally ignore the person or put the person in a place where they will not get the attention they crave. 
  • Asking the person to sit in the back of the room may be the worst kind of punishment for an attention-starved individual.  Charles has starting echoing my sermons.  Because it’s his tenth year as a member and he has never done this before, I felt it was an attention-getting behavior.  When I saw him looking at me, trying to get my attention, I knew that it was. 
  • Try giving the offending person a small amount of added attention.  Charles loves sitting on the front row.  Each week Charles and I have a short talk.  “Charles, if you are going to repeat me during the devotions, you need to sit in the back of the room,”  I tell him.  “I’ll be good” is always his answer.  I assume he just needs that few minutes on undivided attention to reassure him of his place in the program.
  • Become sensitive to your volunteers. If there is one volunteer who seems to have a good repore with a certain member, casually pair them and encourage them to hang out together.  This will help to eliminate some, if not most, of the concerns. 
  • Prayer works wonders.  After asking permission, you may find it effective to gently lay your hands on the agitated person.  If the person is autistic, ask him/her if s/he would like to hold your hand.  Hold your hand out in space but don’t touch.  Allow her/him to reach over and take your hand, don’t initiate the touching. 
  • Should the situation really get out of hand and there appears to be danger, the volunteers must remove the members from the room or area of danger.  You may also want to remove yourself from the room.  Allow the person to work through his agitations and be sure the room is quiet before returning in to the room.  Remember you can replace furniture.  You can’t replace a person.
  • It is best to have one person (the person who holds the highest position in the organization) deal with the problems while all the volunteers and staff offer assistance and comfort to the rest of the members.
  • Calling 911 should be an option.  Before a person is allowed to hurt someone or themselves, calling in professional help may save a broken bone.

Again, we aren’t trained behaviorist and we don’t claim to be.  However, these are some helpful techniques that we have found that work.  What are some of the things that you have found which work to calm down a person who has become agitated?

Birth, Birthdays and Death are important times of blessing

Birth, Birthdays and Death are important times of blessing

Some weeks you wonder how everything comes in bunches.  “Amazing” is the only word I find appropriate to describe the events of many Saturdays and Sundays at Special Gathering.  We had such a time this weekend. So much happened–good and bad–during our chapel services on Saturday and Sunday that it will take a week to chronicle.  However, I’ll begin with God’s providence in our daily lives and in the lives of our members.

Special Gathering is a ministry within the mentally challenged community.  We are a community based ministry with the mission to evangelize and disciple people who are developmentally disabled.  Combined, our nine programs are sponsored by approximately 100 local churches in six counties from two states.  We draw our material from a variety of places.  Currently, we are using the Southern Baptist material, Access, because overall we have found that it is the most convenient to us that is continually updated.  It is also consistently faithful to the scriptures.  

I have been told that the series of lessons that are used in the Unified Lesson that most denominations use as their text for each Sunday is planned four years in advance.  Which means that the text for our July lesson was planned in 2004.  I know that the Southern Baptist Access curriculum plans and writes their material a year in advance.  Therefore, the lesson for July 25 was written in 2007.  Once I received that material, I take the scripture text and the lesson material and do my sermons about a month ahead of time. 

Our lesson for July 25 was taken from Genesis 47 when Jacob blessed Joseph on his death bed.  My lesson centered around that event.  I spoke that it was a great blessing of God to be able to have our family and friends with us for important events in our lives.  (The Bible tells us that Jacob’s greatest desire was to have Joseph close his eyes in death.) I talked about how our family and friends should bless us with prayer during these important events in our lives.  I highlighted three events that I felt are important in every person’s life:  birth, birthdays and death. 

I planned as my attention-getting device to have a balloon from my husband’s recent birthday party.  But I forgot to put it into the car while preparing to go to the Saturday program.  As I was traveling to Vero (a 50 mile trip from my SpG office), I was aggravated with myself that I’d forgotten such an important part of my sermon.  Then I realized that I didn’t need a balloon from a party that happened a couple of weeks ago because we had planned a small birthday celebration for one of our volunteers.  We had also planned a birthday celebration for her on Sunday because she is our supervisor in Melbourne.  We would have a birthday cake for each service and we could sing Happy Birthday and honor Joanne.

Reflecting on God’s guidance in our lives was overwhelming to me as I traveled in my car to our Saturday program.  Four years ago, God planned to surprise this wonderful Christian with a birthday surprise.  And he planned to bless our members by giving them a tangible, up-to-date example for the lesson. 

What an amazing God we serve.  What detail.  What intricate planning and bringing together of circumstances to be able to show His love for a servant who desires no recognition but only to be able to go about doing her job with excellence.   Of course, we know that he is constantly working our these kinds of events, adventures and misadventures for us.  However, it is marvelous when God graciously opens heaven’s doors and lets us see his hand moving in our lives.

Happy Birthday, Joann.  You are greatly loved by God and by us!

What was one time in your life that you knew that God had divinely worked out circumstances to bless someone you know?

Leaders Are Important to the Church

Acts 13:2

Central Theme:  Deacons must be leaders.


Introduction–Call the deacons up before the group.  (SpG deacons are elected from our membership.)  Explain who the deacons are and how they were selected.  We look for people who are spiritual leaders and popular with the chapel program.


       I.     Have a member read Acts 13:2. 

              A. God calls men and then he gives them favor with His people. (ex: Moses and Joshua.  Ref Joshua 1)

              B. There have always been men and women that God has had his   hand on in a special way.

              C. But in order for these people to be able to do the work God has called them to do, people must like them. 

                   1)  These people should be popular.

                   2)  They should be liked so people will follow them.

      II.     We talked about our deacons not being a popularity contest but they must be liked and respected to be leaders.


     III.     God has an important work for our deacons to do.


              A. We must pray for them and follow them.

              B. BUT we must also like and respect them.

     IV.     Ask the teachers and the deacons to come up.

              A. Have one of your teachers pray for the deacons as the elders lay hands on     them.

Conclusion–Deacons, I promise you that I will pray for you.  I thank you for your willingness to lead us and work for us.

Last evening at First United Methodist Church of Melbourne, Special Gathering of Indian River had our first Fun and Games Night.  It was a whopping success.  While Special Gathering is a ministry within the mentally challenged community that does evangelism and discipleship, we firmly believe that part of discipleship is fellowship and fun.  We had over 50 people who attended. 

All of this began because the Brevard County Recreation Department has its summer camp in July and August.  The rec employees are tied up doing a day camp for children with disabilities.  Therefore, they aren’t able to do the Friday night socials.  Special Gathering of Brevard and Indian River decided to pick up some of the slack and have a party.

Of course, parties are the best thing I do.  And this one was great fun.  We began with pizza and salad.  Then one of our wonderful SpG volunteers, Barbara Kenney, led us in more than a hour of line dancing.  Everyone got into the action and we learned or refreshed our skills in step/toe/heel. 

After more than an hour of this aerobic exercise, we played games.  While they were fun, it ended up being a bit confusing because we hadn’t allowed enough time to organize them properly. 

Lessons learned from this event:

  • There were more than 15 members/parents/volunteers who helped with set-up, tearing down, serving and clean up.  Without a good number of helpers, the night would have been impossible. 
  • Serving food was great.  Pizza is the easiest thing.  With church special discounts given by Domino’s Pizza, the cost was only $2 a head.  Everyone can eat for that amount of money.
  • Serving food was a big pain.  Many more volunteers are required to make food service advisable.  Praise God, people were willing and able to help serve.  We had seven people who were dishing out the food and pouring drinks.  However, there was an additional five or six who were helping people who are physically disabled to get their food.  Most of these helpers were SpG members. 
  • The line dancing was perfect.  Even our parents loved the music and our members loved the fun.  I, being extremely straight-laced, loved the movements.  It was heel, toe, step forward, step backward, spin.  There are no touching or holding.  Perfect for a church event.
  • To do the games, we needed to allot much more time to organize properly.   I would say that at least 5 to 10 minutes was needed to organize the members into groups. 
  • There should be about three or four people to each group with a helper person in each group.  The helper could be a member/leader or a volunteer.  (Unfortunately, because of time restrains, we only had three large groups and no leader of the group.)
  • We had three games going at the same time.  Each game had its own table and one person stationed at the table who helped the members to play the game.
  • The games were the simple standards.  First, eat three crackers and the first person to whistle won.  Second, blow soap bubbles.  The person who blew the most bubbles on the first blow, won.  Third, everyone got a piece of bubble gum and the first person to blow a bubble, won.  Each winner was given a colored card.  Each game had different colored cards.  In this way, we knew who won which games.  We were to then have the winners of the individual games have a tournament.  (We ran out of time and we weren’t able to do the tournament either.  However, we had enough game prizes to give each person with a card a prize.)
  • Our members in Melbourne are pretty high functioning but they weren’t able to whistle or to blow bubbles with bubble gum.  They were all able to blow the soap bubbles. Your members will all be different.  We played the same games in DeLand where the members are much lower functioning and they were able to whistle and blow bubbles with bubble gum but they weren’t able to blow soap bubble. 

    Blowing soap bubbles was the best game we played

    Blowing soap bubbles was the best game we played

  • Soap bubbles are such fun for our members that I plan on incorporating them into more of activities in the future. 
  • We also had two games of Dominos going for those people who didn’t want to play the other games. 

Have you been able to find games that your members especially enjoy?  What are some of them?

Shelly Demeree is a talented young woman who attendes our Melbourne Special Gathering. 

Shelley and friends at Special Gathering

Shelley and friends at Special Gathering

She is a writer and some of her work can be found on Specialgatheringstories weblog.  She has her own page on this blog.  I also hope you’ll go to read one of her poems I entered as a post on the main blog for today.

Next Page »