April 2009


Should a mentally challenged person attend a funeral.  This question is often asked especially if a parent or family member has died.  I am not a grief counselor and I certainly don’t claim to be one.  I am not an expert in matters of grief.  However, I have some experience in this area.  For two years before coming to Special Gathering, I published a small magazine devoted to persons dealing with terminal illness, death and dying.

After coming to Special Gathering, which is a ministry within the mentally challenged community, I’ve helped to guide people with disabilities through trauma that results from grieving experiences.  Again, I’m not and I don’t claim to be an expert.  However, I do have some opinions and I would be interested in entering into an conversation regarding this issue.

To begin the discussion, let me say that death, and especially the death of a parent, is an extremely personal matter.  Every person, every family will deal with this issue in a unique way.  There is no correct template that can be applied to every issue regarding death.  That being said there may be some guiding principles.

First,  I believe that if the family has gathered for a funeral, a wake or a dinner after the funeral, the mentally challenged person should be given the option to come. 

Second, the person may not want to attend.  They may refuse.  This should not be taken as a rejection.  One young man I love decided to not attend his mother’s memorial service.  I held a private service for him.  I did exactly the same thing for him that I’d done for the family and friends.  He was able to spend some time thinking about his mother and praying for his family.  HE wanted to do this alone. It was the right thing for him.

Third, if the family is emotional in their reactions to grief situations, the mentally challenged person will probably also be emotional.  This is totally normal.  Of course, there are limits but the family will know those limits. 

Fourth, it the family model is more subdued the mentally challenged person will probably follow suite.  If not, they will be urged by the family to remain calm and not cry.  This is also right for this family.  However, be aware that the mentally challenged person will express his grief in other ways, such as anger.  This is also normal.

Fifth, the person who is mentally challenged should be made to feel a part of the family.  Family members should look for times to include and hug him.  Smile at her and throw her a kiss across the room.  Do something that will insure that s/he knows they are included, wanted and needed.

In short, if the family believes something is a normal passage through the grief process,  allow the person the option to also do it or attend.  Like everyone else, and perhaps, even more than others, persons with disabilities struggle with the insecurities of being wanted and needed, especially with their family during trauma and time of grieving.  Including them in this special family time will help to bond them to your hearts and make their grief passage so much easier.

What are your thoughts in regard to this subject.  Do you agree or disagree?  What are some of the things you have found to be effective?

My husband, Frank Howard, is a scientist who worked with NASA until he retired seven years ago.  He wrote a small manual called The Cryogenic Handbook.  My understanding is that it has become the reference manual for handling and working with cryogenics–which are super cold liquids, such as liquid oxygen and liquid hydrogen.   Over the years, he garnered a reputation that spread around the world regarding his expertise in cryogenics.  However, as he sometimes reminds me, it’s not hard to be recognized around the world doing something that only a handful of people are doing.

While no one wants to be called an elitist, the reality is that there are only a handful of people who do what we do–evangelism and discipleship to people who are cognitively delayed.  When I began calling in Honolulu, a large metropolitan city, to find a ministry or a Sunday school class that taught mentally challenged people, I could find no such animal.  The pastor at First Baptist Church of Honolulu, one of the largest churches in the city, acknowledged, “Wow!  I never even thought about that population.  There is nothing that I know about; but there really should be.”  That experience isn’t unique.

Even more rare are people who are called as pastors or home missionaries to serve the developmentally disabled community in a full-time capacity.  Yet, it doesn’t mean that people who are called to ministry don’t have needs.  I’ve bonded with a small group of pastors who meet each week.  They love me and honor the people Special Gathering serves.  Even more, they support the ministry with their prayers and finances.  However, I am deeply grateful for the relationship that I am slowly developing with man and woman across the US and Canada who are serving–as I am–in full-time ministry.  Finding, like minds and kindred spirits is important. 

After returning from a visit to Joy Fellowship in Vancouver last week, I felt the need to put into writing what I had learned from the experience.  Joy Fellowship is similar but different from Special Gathering.  Some of the things are cultural–they hug more.  Some of the things are physical–they rent a building.  We beg and borrow.  The wonderful thing was that I found almost not spiritual differences.  They are excited to see the mentally challenged population coming into a personal relationship with the Lord Jesus–so are we.  They are concerned that their leadership grows spiritually–so are we.  They are careful about teaching the truths of the scripture–so are we. 

These principles are bonding points and we can learn from each other in regard to technique and practical application.  Who are the people that you trust to teach you what you need to know about ministry to people who are mentally challenged?  Do you have a support group that cares about your spiritual growth?  Does this group help to you weed through the thorny issues you face in ministry?

We are to Love and Obey God even when it is a challenge

Deuteronomy 6:3

Central Theme:  We must obey and love God no matter how hard it is.

 Introduction–Deuteronomy is a book in the Bible.  It is one of those words we use and don’t know what it means.  It means “rehearsal of the law or repeating the Law.”  This book tells us again what God has told us in the Exodus, Leviticus, and Numbers.  It is important book because it tells us again that we are to love and obey God. Have a member read Deuteronomy 6:3.

 

       I.     Abraham was about to die.

              A. They had been delivered from Egypt and had spent 40 years in the wilderness.

              B. Abraham wanted to be sure that the people understood what God wanted from them so he took the time to tell them again and then he wrote it all down, again.

 

      II.     Some times don’t you get tired of hearing the same things over and over again?

 

              A. Clean up your room, pick up your things, turn off the TV. 

              B. The problem is that we don’t do these things and so we need to be told again and again.

              C. Years ago, I got sick and tired of hearing my husband tell me to clean out the car.  SO I starting cleaning out the car and guess what he never told me to clean out the car again.

 

     III.     God tells us again and again in many different ways the same things because we must learn to love God and obey him to live happy and successful lives.

          A. Ask God to put into your hearts his law so you can obey him.

 

Conclusion      Loving and obeying God is so important to us that God tells us again and again.

Florida Developmental Disabilities Council

124 Marriott Drive Suite 203

Tallahassee, FL 32301

800-580-7801 

 

 

ALERT

Please Vote No on HB 371- Planned Residential Communities for individuals with Developmental Disabilities unless the following amendments are adopted:

Amendment 1:  600677 by Rep. Sachs

Create new subsection (3) of section 419.001 to read:
Planned residential communities must by their characteristics be community based and satisfy federal guidelines and state rules regarding the characteristics that distinguish community based settings from institutional settings.

Amendment 2:    530169 by Rep. Sachs

Create new subsection (3) to 393.501 Rulemaking

(3)  Such rules shall also address planned residential communities and define, consistent with federal guidelines, the characteristics a planned residential community must have to be considered community-based as distinguished from institutional.     

Contact your legislator and as many others as you can in the Florida House of Representatives (you can find them by going to our website(www.fddc.org ) and ask them to vote YES on Representative Sachs amendments for HB 371(600677 and 530169) and NO on HB 371 if the amendments fail.

Hurry because HB 371 could be heard as early as this afternoon on the House Floor!
·HB 371 would allow the Developmental Disabilities Home and Community Based Waiver dollars to be used for congregate residential communities that serve, with minimal exceptions, exclusively individuals with developmental disabilities and, as such, segregates individuals with developmental disabilities from the full community and individuals without developmental disabilities. 
·According to HB 371, the planned residential communities that could receive Developmental Disabilities Home and Community Based Waiver funding as a result of this legislation, could be developed with the many of the same attributes as an institutional campus such as Sunland Marianna:  gated, serving exclusively individuals with developmental disabilities, staff living on site with reduced rent as part of compensation, employment provided on site, day programs provided on site, congregate eating on site, and work days required of residents.
·HB 371 would mark a sweeping and far-reaching change to public policies toward people with developmental disabilities in Florida. Many individuals, families and advocates believe that enacting this proposal, particularly using funding that was intended for an alternative to institutional funding would be a move backward toward segregation, rather than progress forward toward integration.   

 

 

 

This time last week, I was on a small tour boat on my way to a tiny island in the middle of the Indian Arm in Vancouver Harbor.  There were 28 people on board. 

I have gone to view how Joy Fellowship, ministry within the mentally challenged community,  in Vancouver, B.C. would conduct their leadership retreat.  We are interested in learning how to better use our members who have leadership qualities.  I would like to take another week to mull over the things I learned but I’m afraid that rather than blending, it could ferment.  So here goes:

  1. In many ways, their leadership techniques are similar to those used in Special Gathering with shades of differences.
  2. Their leadership has complete freedom to contribute a thought, a verse or a song during the worship services.  It was common to have two or three people interject their thoughts during a teaching.  This could be a result in the fact that Joy Fellowship has a worship service on Sunday.  Then during the week, they have their Bible studies.  At Special Gathering, we have our worship time, then a Bible study afterward.  We ask our members to not interrupt the worship time.  However, they are encouraged to ask their questions during the Bible study time.  I’m actually not sure which I prefer.  However, I found the spontaneity of their leadership refreshing.
  3. The teachers taught passages of scripture, rather than one or two verses.  This gives the members an overview from the scriptures of what the main principle is.  At Special Gathering, we read one or two scriptures and teach only one point during each devotion.  During the devotion, we will tell (rather than read from the scriptures) the Bible background of the story we are teaching.  There may be two or three points in the Joy Fellowship teachings.  Because these men and women are higher functioning, they appeared to be able to assimilate all the points.  Because I didn’t attend a regular service, I wasn’t able to see if a passage of scripture is also used in the normal worship services.
  4. They had an interesting combination of preparation and informality.  The entire weekend was presented in written form contained in a booklet of questions and activities.  This gave the people leading the small groups concrete instructions to follow.  These groups were exceptionally easy to lead because of this booklet.
  5. The informality came during the teaching time and praise and worship.  For example, during songs the signing choir knew, they would come up as though on cue, though there were no verbal instructions.
  6. Some of the leadership had become a tad bossy with the other members.  There was gentle instruction and correction given.  This is an issue we also face and we have to address when it occurs.
  7. Last year after their leadership retreat,  a member of their leadership team had collapsed and died on the dock  immediately after the retreat.  Because of this, there was a need for a memorial service during the retreat.  This was bitter/sweet time for everyone.  I was happy to see the teacher hit the issue of grief head-on with tears of remembrance and joy that a friend had gone to heaven.
  8. The ushers and signing choir had been trained to respond automatically to their service offerings, rather than on cue. 

Of course, there was more but my mind is still sorting.  In all, I was impressed with their leaders and their teachers. 

What are some of the things you have learned regarding leadership that you believe are important to share?

Of course, I remember when time dragged by, unless it was summertime or the weekend.  But that was several decades ago.  It’s April and I only begun to feel really comfortable writing 2009.   My mother told me that as she got older and dementia slowed her activities,  time began to slow down again.  That made me a bit sad.

 I visited with a couple who are approaching their eighties this weekend in Canada. They are the founders of the ministry, Joy Fellowship.  They are still active with nonstop phone calls, visits to make, letters and e-mails to write.  They were commenting that the first months of 2009 have flown away.  It was refreshing to hear.

While I dislike the fact that there seem to be more tasks than time, I would hate for the opposite to be true.  I have a close and dear friend who is only a few years older than I.  He has nothing to do but eat, sleep and go to church on Sundays.  While he never complains, he also does not seem to have much interest in his surroundings, except watching the next TV show. 

Chris and Lisa are twins who attend Special Gathering.  They are joyful, peaceful spirits.  Chris is blind but sharp as a chef’s butcher knife.  Lisa is much lower functioning. Yet she radiates love for her sister and life.  I don’t think time passes too quickly for them.  But I know it doesn’t drag either.  Together they share a peaceful bond of love for each other and the Lord.  They sing and laugh during our worship times.  Their caregiver tells me that they are so joyful that taking care of them is a delight, even though it is arduous work. 

Whether time is your friend or your foe, whether it zooms by at lightning speed or creeps around you like a snail, it is the reality with which we all live.  As my hosts showed me this weekend, making the most of the time we’ve been given is the key to conquering the time complex.  And the twins remind me often that the fruit of the Spirit–joy and peace–make our time tasks delightful.

Is time your friend or your foe?  Does it speed along too quickly or creep too slowly for your tastes?  Do you think that activity is the key to redeeming the hours?  Or do love, peace and joy hold the answer?  Perhaps, it’s both?

There are a few people who don’t have to do because they can simply be.   When they enter the room they bring a vital presence of God along with them.  That was my new friend, Joanne. 

Joanne is Chinese-Canadian and more than 80 years old.  She fiercely introduces herself as Canadian but her straight black hair, dark complex, small statue and eyes betray her Chinese heritage.  She barely reaches four feet tall but she is a giant in the faith.  Spending almost 30 years in India doing tribal missions, she was forced to leave her adopted home in the early ’70s and returned to Canada.  Since that time, she has traveled all over the world, doing short-term missions work.  Some of her stays were years.  Other were weeks. 

Her mission field is now the mentally challenged community.  She is the co-director of the signing choir for Joy Fellowship in Vancouver (JFV).  With all her years of experience and training, she meekly says, “I leave most of the leadership of the signing choir up to Shawna, who is my co-director.  We use different sign languages.  And to be honest, Shawna is a much better teacher than I am.”   Shawna is about 25 and a high-functioning member of JFV. 

After spending a few days with Joanne, I admitted to her, “You are what I want to be like when I grow up.”  We had just completed a mountain hike of about a mile.  Joanne had jauntily agreed to go with us.  Of course, we had to wait a bit for her but her laughter and joy made the slight delays well worth our time.

She will travel this spring to a nation which was formally part of the Soviet block.  She will go with a group of educators.  They were invited by the government to teach ethics and moral development.  After four days of the “official” seminar, they will take an unofficial day to teach the scriptures and the ethical applications of the gospel.  In previous years, everyone attended the extra day and almost all of the attendees accepted Jesus as their Savior and Moral Guide.

By the end of our weekend together, Joanne promised to come and visit us in Florida.  “I can’t come this trip,” she said.  “But I’ll be there.”  I look forward to being with her again because I know that I can learn so much from her about teaching and living and humility. 

Pooh, I might as well be honest. I don’t care, if she teaches me anything.   I just like being around someone who brings an almost tangible presence of God with her.  Don’t you?

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