October 2012


Worship is the apex of all the many things we do at Special Gathering.  Therefore, it is vitally important to us that things go smoothly but there are weeks that are beyond interesting and border on bazaar.

A couple of years ago, there was a Sunday at our Melbourne program that was “beyond interesting.”  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, Criss began to yell, “Don’t do that!  Stop it!”  Criss and her twin always sit in the back of the room.  They have a friend/volunteer who sits with them because even though Criss 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, Criss was frailing and trying to hit her friend.  Because this is totally out of character for Criss, I knew that she must be seizuring.  Without changing the tone of my voice, I said, “God wants to honor each of us.  Time it,”  However, everyone 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 Criss’ 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 David to go to the hospital with Criss.  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 Criss 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 HERrequirement, 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?

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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.

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 losing 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 ofpunishment 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 even 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 several years ago. 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 eight programs are sponsored by approximately 110 local churches in five 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 BaptistAccess 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?

God can give us the power to go

Acts 1:8–Teacher Appreciation

Central Theme:  God wants us to tell people about Jesus not matter where we are.

Introduction–I can tell where I have been last week by the receipts in my pocketbook.  Pull out a couple of receipts and tell about where you were.  Even if I did not have these receipts to remind me and as a record, God knows what I was doing.  He has a record.  Every place I go I need to realize that God was with me and there were people there who are hurting.

                  Have a member read Acts 1:8.

I.     Tell the story of Paul and Barnabus

A. They were missionaries who went from place to place starting churches and telling people about Jesus.

B.  There are several books written by Henry Nowen, a Catholic priest who went to live with mentally challenged people.

1.  Everyone loves these books.

2.  But there are not many people who are like our teachers, Sam, Danielle, and Dan.

3.  They have gone to live and work with people who are mentally challenged.  Then they come each Sunday to teach you about the Lord.  All of our teachers are people who take your well-being seriously.  Doing what our teachers do will change people‘s lives.

4.  It will change the people they serve and their own lives.

II.     God wants us to reach to others and help them.

A. We can reach out to our family.

B.  We can reach out to our friends and people we know on the bus or the van.

C. We can reach out to the professionals who work with us.

A. They have lives and they hurt sometimes too.

B.  Pray for them.

III.     We may not be able to go to foreign countries; but we can pray for the people who are working with us.

A.  Sometimes they are giving up much to help us.

Conclusion      We should be willing to go and willing to pray for those who are ministering to us.


October 2012


*Please feel free to forward this message to colleagues and other interested parties.
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Consent, Alternatives to Guardianship, and Supported Decision Making – AAIDD Aspire Forum
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UPCOMING EVENTS

The Arc 2012 Convention: Achieving Inclusion: Across the Globe – AAIDD Exhibiting
October 25-28, 2012, Washington, DC 

12th Annual Coleman Institute Conference on Cognitive Disability and Technology – AAIDD co-sponsored
November 2, 2012, Westminster, CO

2012 ANCOR Technology Summit: Implementing Innovative Solutions – AAIDD co-sponsored
November 3, 2012 in Westminster CO 

2012 State of the Art Conference on Postsecondary Education and Individuals with ID -AAIDD co-sponsored
November 29-30, 2012, Fairfax, VA

AUCD 2012: Innovating Today, Shaping Tomorrow – AAIDD Exhibiting
December 2-5, 2012 in Washington, DC

National Leadership Consortium on Developmental Disabilities – University of Delaware Leadership Institute – AAIDD co-sponsored
January 13-18, 2012 in Newark, DE

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Recent Research Published in AAIDD Journals 

Measuring Physical Activity With Pedometers in Older Adults With Intellectual Disability: Reactivity and Number of Days
A paper in the August issue of Intellectual and Developmental Disabilities by researchers affiliated with Erasmus Medical Center (Netherlands) and University of Gronigen (Netherlands) describes a study to indentify the minimum number of days of pedometer wear required to secure a valid estimate of average weekly step counts. Authors report that any four days of pedometer wear is sufficient to validly estimate physical activity in older adults with intellectual disability. (Full text access available at no cost with member subscription to IDD)

Social Interactions of Students with Disabilities Who Use Augmentative and Alternative Communication in Inclusive Classrooms
A paper in the September issue of American Journal on Intellectual and Developmental Disabilities by researchers affiliated with Illinois State University, Vanderbilt University, and University of Wisconsin explored the extent to which ACC-using students in a general education setting engaged in social interactions. Authors report that few interactions were initiated by students using ACC, and that such students relied more heavily on facial expressions and gestures than their devices. (Full text access available at no cost withmember subscription to AJIDD)


For any questions and comments, contact Jason Epstein at jepstein@aaidd.org

For me, one of the best things that happened at the Disability Leadership Gathering that I attended this week at Sonrise Retreat Center in Anderson, Indiana, was that I was griped with the amount of passion shared by the leaders who have a genuine concern for the Church.  They have a consuming desire to help the Church to understand the great gifts that the intellectually disabled community brings to local congregations.

In honesty, this is not my passion nor the prevailing passion of Special Gathering.  Our one goal is to evangelize and disciple people who are mentally challenged.  All our efforts and passion revolve around that concern.  I am deeply grateful, however, for the many ministries around the US who feel an equal passion for educating the church regarding the needs of this important culture.

However, Special Gathering does feel the need to communicate with the local churches or with congregations.  The divide–as I see it–comes with the people with whom we communicate. Most of the disability leadership attending the gathering in Indiana desire to communicate with the people in the congregations as individuals.  On the other hand, The Special Gathering purposely does not communicate with the individual members.  We speak at local churches when we are invited.  We bring our choir to sing.   But we don’t solicit finances from the individual congregants.  We solicit funding from the missions committees or pastors.  We desire to become a part of a church’s budget.

Over the years, this has proven to be a consistently stable way to raise funds.  It may not, however, be the most financially beneficial way to raise a ministry budget.  In addition, there was a great passion for the Church communicated by these men and women who have a more direct contact with individual members that was extremely appealing.

Perhaps this is a discussion that needs to be held by pastors and ministry leaders.  Which method benefits the local congregations most in raising a budget for para-church ministries?  Does it seem best to by-pass the church’s budgeting process and make appeals to individuals?  Or does it make sense to seek out pastors and missions committees for funding? Or should a parachurch ministry–such as a ministry to people with intellectual disabilities–seek to do both?

It’s only the beginning of fall in Central Florida.  The temperatures remain in the 80’s. I cannot even find a sweater, much less an insulated jacket.  Tomorrow, I’m headed for Indiana for a disability meeting.  The tempertures there are in the 40’s and 50’s.  It won’t be that cold until January or February where I live.  Then the cold will only last a day or two; and we complain bitterly.

For me, cold is a great distraction.  Over the years in meetings, I’ve learned to concentrate during sermons, teachings and presentations, unless I’m cold.  That is why I constantly take a sweater with me during the winter.  Even in the summer, air conditioning can m some rooms too cold for me.

Face it.  We all fight distractions.  Ministering to the mentally challenged community, we work exceptionally hard to minimize distractions.  There are most many things we do to try to eliminate or downplay distraction.

1.  We try to be sure that  the room is clear of visual distraction.  It’s important to move equipment, books and all other objects out of the view of our members.

2.  If  there are things that cannot be moved out of site, we will try to make them as attractive as possible.  Meeting in an attractive room isn’t always an options.  Therefore, we use barriers to cut away from the starkness of an exposed and empty area.

3.  Try to minimize the distracting effect of the things you cannot hide.  I not only do the praise and worship; I also operate the sound system.  This means that I need to have the sound equipment close to me.  In Vero, I can hide the equipment and still have it in an accessible place.  That isn’t true about Melbourne.  Therefore, I must have the sound board behind me.  Each week I try to set up the equipment in an orderly manner.  Everything is put in the same place.  Routine can give us the illusion of order.

4.  We try to keep our appearance or mannerisms from becoming a distraction.  Each week, I dress in a professional manner–suits and good shoes.  Black suits are always a good choice for a woman Our executive director, Richard Stimson wears a white robe or a business suit when he preaches on Sunday.  He will dress down a bit for our programs during the week.

Whatever you do and no matter how much you “minister” recognizing distractions are important.  Keeping yourself focused is equally vital.  Christianity is building a relationship with the Lord.  All of our lives are filled with distraction.  You may not need to carry a sweater; but we all need to recognize what keeps us from concentrating on the things of the Lord and do our best to minimize or eliminate it.

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