May 2011


Special Heart

The Autistic Child and Discipline

Although I have had two children with special needs, and although one of them had some autistic tendencies, I have never raised a child diagnosed with autism.  But I have observed from afar what the parents of such a child are faced with, and it is often a daunting task to raise, nurture, and seek to have this child’s gifts be appreciated by the rest of society.

And to make matters even more difficult, it’s hard to discern how to correct, discipline, and establish boundaries for the autistic child, knowing that he or she is “wired” a little differently from most kids.  What is fair?  What is effective?  Is there a different standard for children who are on the autism spectrum?

There are many sides to these questions.  Let me offer first the side of compassion:  When I was very, very ill with an autoimmune condition several years ago, there were symptoms that were amazingly similar to those experienced by many autistic children–severe food sensitivities and allergies, environmental sensitivities, intolerance of man-made fabrics, of florescent lights, and a hyper response to strong smells and loud sounds.  As a result, I can somewhat relate to and definitely sympathize with the child who endures these disturbing sensations.  I could hardly handle it as an adult.  I really do feel for any child who struggles in this way.

At the peak of my illness, God directed me to a kind doctor who said, “You are very fragile, like a piece of fine china or crystal. We need to treat you with this in mind.” How relieved I felt that he saw me in this way rather than as a person with imaginary problems! Thankfully, since then, my hyper-responses have calmed.

Looking back at my experience, my doctor’s words can be advice to parents of the autistic child:  to treat him or her as a piece of fine china.  Don’t be afraid to parent and guide with boundaries, accountability, and the kind of structure that all kids need.  But do it all with an extra dose of care and gentleness.

So that is one side.  The other side is two-fold and has to do with discipline.  First, God’s standards, commands, promises, and blessings apply to all children. For example, God says,

“Children obey your parents in the Lord, for this is right.

Honor your father and your mother (which is the first commandment with a promise) so that it may be well with you and that you may live long on the earth.”  Ephesians 6:1 NASB

Notice that God’s intention for having standards for children is so that “it may be well” with them. They may even live longer, according to this verse!  So God’s commands do apply to the autistic child, although getting to the goal of obedience and a sense of “otherness” will without a doubt be a longer and harder road than for the more typical child.

The other factor in disciplining the child on “the spectrum” is that although she may not know intuitively how people around her are responding to her behavior, she can be taught and can learn through rules, or you might call them “guidelines.”

Temple Grandin, in her book, Unwritten Rules of Social Relationships, emphasizes that although as an autistic child, she had trouble understanding appropriate social behavior, she did benefit from consistent expectations and consequences.

When I was a young child, everything pretty much got me equally upset.  My thinking patterns were more rigid, more black and white than shades of gray.  I was fortunate that  our home life was structured and Mother and the nanny were consistent in their expectations of me and the consequences they attached to my behaviors.  That sameness was calming to some degree, it allowed me to experience a sense of order and control.

Throughout the book, Temple describes that she had to learn things, particularly things that were social in nature, that other kids might know intuitively.  However, she did learn, as she describes it, like putting data on a hard drive on a computer.  But it did take time.

Sean Barron, Temple’s coauthor who, like Temple, demonstrated “classic autism” at a very early age, writes this about manners and how he had to learn about being others-aware:

The rule of displaying good manners extends beyond please and thank you.  It’s not enough to make good eye contact and be sure the shirt is tucked in. Good manners also incorporate  inclusive conversation. 

Realize that Sean was quite language delayed when he was young, so any conversation was hard for him!  But he eventually learned  to say things like “Well, I’ve talked enough about myself.  I’d like to learn more about you.”

All of this progress was slow in coming, but the end result was that Temple and Sean are now able to bless others with the gifts they possess, and able to enjoy the satisfaction of being a very positive contribution to the society in which they live.

I’ve noticed that parents of kids with autism are often able to see beyond their “condition” to the giftedness that is within them.  A combination of compassion and discipline, will help to draw out that treasure that is assuredly there for all to see and experience.  I encourage you to not give up.  Your child has so much to offer, and your labor of love will eventually be a blessing to you, to your child, and to the many others who benefit from getting to know him!

Bev Linder

Comments or questions?  I’d love to hear from you!

Bev@special-heart.com

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Memorial Day is the last day of The Special Gathering’s annual camping experience called Camp Agape. Each year we take more than 200 people to a camp ground for four-days of fun and fellowship.  We return Memorial Day and those of us who have served as staff are totally and completely exhausted.  Our members are mentally challenged and most of them have a secondary physical disability.  As uplifting as this adventure into our cloistered sub-culture may be, it is also filled with mental stress and bodily exertion.

As a result for the last 24 years, Memorial Day has been a day observed but not a day of remembering.  Nevertheless, as the years of war have grown into almost a decade, I am more deeply aware of what these young men and women have given to us.  My heart is moved remembering the sacrifice of our youngest and best adults.

I am blessed to be old enough to remember the Korean War and the resolves made after World War II.  Again and again, we were told by our elders, “We must never again let tyranny and oppression threaten the world with destruction.”  It is the result of the horrible lessons learned during war that we weep at the horrors of battle but continue to send our young adults marching into the face of the unknown.

We pray for peace in the world.  However, we remember the history of the world.  Therefore, we are eternally grateful for the freedom we enjoy.  I always thank God when I read the slogan of a bumper sticker of a rusty and battered truck, “Freedom is not free.”

Read more: http://blog.beliefnet.com/simplelife/?p=625#ixzz1NMobbFU3

Jesus is the Rock

Central Theme:  Jesus is the foundation and stable person in my life.

Introduction–Tell about doing a hard project.  Tell about how it had to have a firm foundation.  Tell some of the steps that you used at the beginning of the project.  This was the most important things about the project. Have a member read Ephesians 2:20.

I.     Jesus spoke to Peter and told him that on a foundation of rocks he would build his church.

A. The Bible tells us that Jesus is the chief cornerstone

B. Jesus said that Peter would be part of the foundation stones.

C. It is important that the church have a good start.

II.     As part of the church, SPG is to have a good foundation.

A. Special Gathering does not own any buildings.

B. But our foundation is built on some rocks.

1.  We have rocks of people, like Peter and Jesus.

2.  We have elders who are our teachers.

3.  We have deacons that we elect from our members.

III.     God wants our lives to be built on a good rock.

A. Jesus can help us to build good lives.

B. We can be people who trust God.

C. Jesus will be sure that our lives don‘t crumble every thing have something to do with Him .

Conclusion  Jesus is the best foundation for our lives.

Loving As God Loves Me

by Michelle Demeree

Do you know your inner self?

Do you love YOU as Jesus loves YOU?

To love as Jesus loves, I must find faith

I must find faith to pray to God.

I  must work on being the person God wants me to be.

Try to know your feelings.

Then let’s go with God and trust his love for us.

Then we can love ourselves as God love us.

Shelly Demeree is a member of The Special Gathering of Melbourne.  She loves to express herself in writing. Her poetry and writing has appears in several publications.

Read more: http://blog.beliefnet.com/simplelife/2011/05/loving-as-god-loves-me.html#ixzz1NMq4aKzH

By 7:30am this morning, I will be heading to First United Methodist Church to set up for luggage pickup for Camp Agape.  Because we also provide transportation to our camp, there is the additional struggle with luggage.  By 11:30 we will be at camp and herding folks into the chapel area so that we can set up the cabins with luggage on their beds and pillows in place.

Most of you know and understand the stress of camp.  You also know the need for prayer.  Therefore, my main concern is prayer for the health and safety of our members and volunteers.  Please pray for us.


Several times a year, the Volusia County locals are treated to lots of tourist traffic because of the Daytona speedway.  For more than five years, my full-time position with Special Gathering, a ministry within the intellectually disabled community, was in Volusia County.  I worked primarily in Daytona and DeLand.  These are racing cities.  NASCAR rules the city of Daytona because of the income it provides.

Every resident of Daytona understands what it means to drive a marathon.  Driving 500 miles at top speeds of 150 to 170 miles per hour is not a sprint.  It’s a gut-grueling marathon.  Paul tells us that our lives in Christ are to be viewed as a marathon, rather than a sprint.

I was reminded last week of how our life-long marathons should be run.  During the time that my husband’s life was being gently pulled from us, our family gathered around the table waiting.  Conversations about life and lives wove in and out.  Carefully threading the warp and weft of dialogue, we found our family’s lives being woven into the lives of others.
One life was South Carolina’s former Lt. Governor Andre Bauer.  Cheryl, my husband’s sister sat with us and started talking about our wedding.  Slightly changing the subject, she asked, “What happened to Jill Westbury?  She was really kind to me in your wedding.  I always wondered what happened to her.”
The Westbury family had been our next-door neighbors most of my childhood.  Jill and I were playmates until high school.  When Jill married, she began using her first name, Sandrea.  She became Sandrea Bauer.  Relating what I thought was an interesting twist, I shared, “She and her husband moved to Columbia.  And Jill’s son was best friends and college roommates with my neice’s huband.”
“Her son’s name was Andre; and,of course, he became lieutenant governor of South Carolina,”  I topped my story with what I thought was an interesting tidbit.
My husband’s family had lived in Columbia for many years; and I knew that Cheryl would be interested in this hometown trivia.  My sister-in-law, Cheryl, laughed.  “Oh, the story doesn’t stop there,” she chimed into the discussion.  ”Remember the teenager who mowed my mother’s lawn?”  she asked.
Sure, I remembered.  An extremely handsome young man had started mowing Mrs. Howard’s yard when he was a young teenager.  She was a widow by then and this teen was very kind to her.  She was disabled and found it hard to walk.  The teenager began running her errands also.  He did all her grocery shopping.  By the time he was in college, the teen was driving a new sports car; but he continued to pop into her house to make sure that she was all right.  Because none of the family lived in Columbia, we were extremely grateful but equally leery of this college student who seemed to have more than a passing interest in Mrs. Howard.
Was he taking her money?  The daughters often checked her banking accounts to insure that nothing was wrong.  Nope.  The teen was paid for the lawn but not the errands he ran two or three times a week.  He seemed to be genuinely interested in her well-being.  For more than ten years, he took a caring. active interest in my mother-in-law.
Cheryl smiled with satisfaction, pressing both hands against her upper legs to give her statement more emphasis, she reported, “That young man was Andre Bauer.  We found out that he did similar errands for all the elderly folks in the neighborhood.  By the time, he was in college, he was doing their grocery shopping, without charge.
“Later, as lieutenant governor, Andre’s signature issue was helping the elderly and disabled in the state of South Carolina,” she said.  “He took what he learned from the neighbors he served as a teenager and used it to benefit all of the state.”
His is a true Good Samaritan story.  This is the kind of marathon life that Christ expects us to live.  Andre Bauer has lived his life helping and nurturing others–not for political gain; but as a man who genuinely cares about his neighbors who need his help.  Of course, he has made mistakes and verbal blunders but flat tires are expected in a marathon.
Sitting that night with family and friends, everything became a bit of a blur for me. Yet, the marathon race of Andre Bauer’s life is notblurred at all.  This is a man who understands the meaning of the marathon.

Regarding special needs ministry, there must be the marathon mentality.  Our lives can no longer be short-term mission trips but long-term commitment to the communities we serve.  After telling the story of the Good Samaritan, Jesus asked the religious leaders, “Who was the good neighbor?”  We must answer the woman or man who helped those in need.  The one who ran life’s marathon while stopping to reach out and touch those in need.

Read more: http://blog.beliefnet.com/simplelife/2011/05/the-marathon-of-life.html#ixzz1NAbp6ddW

After the devastation in Joplin,  Missouri, another tornado has ripped through Oklahoma.  It is important that we remember the victims of these horrific storms.  While it has not been a feature of the news, there must be people who are mentally disabled who are misplaced and disoriented.  Here is my prayer taken from various verses in Romans 12.

Lord, we bless those who are hurting and wounded from the storms in their lives.  I pray especially for the weakest among us.  I ask that you will bring the best out of all the people who have been adversely affected by this terrible event.  We place before You as an offering the men, women and children who are in pain and despair.

Lord, bring from this tragedy Your peace that is not effected by circumstances, Your stamina that does not burn out, Your compassion that does not overlook even the smallest details. 

Help each one to discover beauty in everyone they meet,  to find release in  laughter when the stress and hard work is more than they can bare.  Give them friends who will share tears with them when they’re down.

Most of all, I pray, that each person will find the joy of a true friendship with You, and give themselves to You as an offering.  Lord, let it be that in the middle of their heartache, each person will be able to fix their attention on You and Your great love.  In Jesus name, we pray.  Amen.

At Special Gathering, which is a ministry within the intellectually disabled community, we take our members on an annual retreat called Retreat Agape.  It is located in Vero Beach at Life for Youth Camp.  It is a  youth summer camp but we rent the entire facility for Memorial Day weekend each year.

While Retreat Agape  isn’t located “in the woods,” it is a rustic area and there are bugs.  In fact, it is rural enough for red bugs.  These tiny insects live in secluded, wooded areas; and they invade people who dare to invade their territory.  Red bugs crawl under the skin and cause little red bumps that itch and itch.  Many of our members are not exposed to wooded areas; and they aren’t used to these creepy crawlers that cause itchy bumps.  Occasionally, someone will come up to me to announce that they are never coming back because “there are bugs out here and one of them got on me and it’s itching me TO DEATH!”

My comment is always, “We are at camp.”

In every experience in life there are good things and bad things that happen to us.  Hopefully, the good will out weigh the bad.  Yet, I’ve learned that most important element in this equation is our attitude.  Like a light shining in the darkness, a good attitude will break the back of a bad attitude everytime, thereby turning even the most awful experiences into joy.

I came from a large family with many in-laws and out-laws.  Funerals were part of my childhood memories.  I remember massive numbers of aunts, uncles and cousins serving our plates from the feast spread over the large dinner table, with desserts spilling into the living room.  The aunts, uncles and cousins balanced their plates and iced tea while roaming outside into the front yard.  We sat under the trees, sharing a meal, family gossip and lots of laughter.  Always, there was laughter.  Even out tears were sprinkled with laughter.

As a child, those times were a lot like having a red bug come to dwell in your skin.  I hated and loved the tickle.  The itch was horrible but scratching the itch was wonderful.

There is no doubt that death is our enemy.  The legacy of  The Garden haunts every moment of our earthly existence.  But the Holy Spirit miraculously works the wonder of scratching the itch, turning that which should be horrible into a wonderfully mysterious experience.

A friend shares that on a recent vacation she met a couple who were as different as soup and walnuts.  The husband was having a marvelous time experiencing all the delights on the resort island where they were staying.  Yet the wife was miserable.  Nothing had gone right for her.  The food was too rich.  The A/C was too cold.  The ocean was too salty, leaving her sticky.  The pool was too warm.  Their room was too elegant and sterile, making her uncomfortable.

The husband seemed to find his wife’s complaints and antics mildly amusing and he laughed a lot.  The wife was frustrated by her husband’s lack of sensitivity regarding her discomfort.  While the husband didn’t appreciate everything that was happening, he had learned to enjoy “scratching the itch. ”

Each day and sometime moment by moment, we decide how our life will be lived.  Jesus said, “Blessed (or happy) are the peace maker.”  I’m sure that he had also learned to enjoy scratching the itch.   What are some of the ways you have learned to scratch the itch.

Okay!  I admit it.  I didn’t think that the current doomsday upheaval deserved any more attention than it was already getting over the airwaves.  The Scriptures are pretty clear that we won’t know when the Lord will return.  Therefore, May 21 at 6pm was not my biggest concern one week after my husband died and two weeks before Special Gathering ministry takes 200 special needs people to Vero Beach for a four day retreat.

However, it was a concern for many of our members who are intellectually disabled but who watch and understand TV news.  As I stood in front of our Melbourne program on Sunday morning, I laughingly said, “Well, guess you know we are all still here and the rapture didn’t happen.” When I noticed that most of our members weren’t smiling, I asked, “How many of you were concerned?”  Most of their hands went up in the air.

Because few of our teachers and chapel leaders were concerned or knew about the coming news hype regarding this issue, it had not been addressed last week at our weekly chapel services.  However, as the week had waned and Saturday approached, I became increasingly interested in the reaction of many people I know who are not Christians and who knew that I am committed to Christ.  ”What do you think?” I was asked several times.

Trying to calm the fear that was etched on their faces, I said, “Jesus said that we would not know the day or the hour.  He said that he didn’t know and the angels didn’t know.  Only the Father knows, therefore, this preacher cannot know.  But,” I continued to explain, “we can be ready no matter what happens.  Jesus wants us to realize that he loves us enough to forgive our sins and make us God’s child.  All we need to do is ask him.”

While I knew this was a big hoax, I also know that this is the thing that we, as Christians, have been living to happen.  Christ’s return will be a great and glorious day for us.  We have no need to fear or be concerned regarding his return.  Given the choice of eternal paradise and living here with the hurt, fears and concerns of life, is there really a choice.

Read more: http://blog.beliefnet.com/simplelife/2011/05/im-still-here.html#ixzz1N8pwFLHX

We are to share love with all our brothers and sisters

Romans 12:10

Central Theme:  Jesus will return to earth and take us home.

 Introduction–My brother is a jerk but I love him.  My sister is bossy but I respect her and she is my best friend.  Families are important to us and we should know that we should share love with them–all of them.  Have a member read Romans 12:10

I.     Tell the story of Jacob and Esau and how they came to love each other as found in Genesis.

A. These two men were very different.

B. They set aside their differences and chose to love each other.

C. Our family is more than our physical family.

II.     As Christians we have many people who are our brothers and sisters.

A. You will not get along with everyone in your Christian family.

B. There is not problem with that unless we become bitter and hateful.

C. We should show every person love and not show them spite or criticism.

III.     Each of us have people that are our family and affection is a part of our relationship with them.

A. We are to be loving and show affection to these people

B. Affection means touching in love.

C. We all need affection and touching in our lives–and we need to give it to others.

Conclusion     God wants us to relate to our family and our Christian family with love.

How we live

by Michelle Demeree

We live through each other.

We take moments in our lives

Then we give it to someone we love.

We give to those we love.

For then, when we have a need

They give to us.

In time, as we pray

Moments are given back to us

As we all pray in Christ.

Shelley and friends at Special Gathering

You cannot imagine how much my family and I appreciate the many cards and memories that you have shared with us, regarding my husband and their father. We especially appreciate the love shown to us from the special needs community.  Thank you so much.

Rob Kerby, Senior Editor at BeliefNet, a faith-centered Internet site with 20 million subscribers, wrote a lovely tribute to my husband, Frank Howard.    To view it, click on his name.

Subject: Next White House Monthly Disability Call
Date: Thu, 19 May 2011 08:30:46 -0500
From: White House Disability Group <disability@messages.whitehouse.gov>
Reply-To: White House Disability Group <disability@messages.whitehouse.gov>

In order to help keep you more informed, we are hosting monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the Federal government.

Our next call will be Thursday, May 26 at 3:00 PM Eastern.

I would encourage you to call in about five minutes early due to the large volume of callers.

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit our website at http://www.whitehouse.gov/disability-issues-contact and fill out the contact us form in the disabilities section.

This month’s call will feature:

Secretary of Transportation, Ray LaHood

Assistant Secretary for Civil Rights, Department of Education, Russlynn Ali

Director of Federal Contract Compliance Programs, Department of Labor, Patricia Shiu

The call also will include updates on civil rights, health care, and fiscal/budget issues.

We strongly urge and ask that you distribute this email broadly to your networks and listservs so that everyone has an opportunity to learn of this valuable information.

The conference call information is below.

Dial in for listeners: (800) 230-1085

Title: White House Disability Call (use instead of code)

Date of Call: 05/26/2011

Start Time: 3:00 PM Eastern (dial in 5 minutes early)

This call is off the record and not for press purposes.

For live captioning, at the start time of the event, please login by clicking on the link below. Please only use this feature if you are deaf or hard of hearing.

http://www.fedrcc.us//Enter.aspx?EventID=1745291&CustomerID=321

Again, please distribute widely.

We went to the beach early so the children could play a bit before the final launch of the space shuttle Endeavour.  It was Monday morning.  The launch was scheduled for 9:23AM. 

On Tuesday the week before, Frank, my husband of 49 years had died.  Because of his commitment to Christ, we knew he was running through heaven.  The week had been a blur of tears and laughter.  Family and friends came by the house to drop off food or cards. They all lingered for a moment making sure that I was all right.  Bitter-sweet times washed through our home like a reoccurring flood of healing balm.

Our children, three grandchildren and I had spent much of Saturday sorting and dividing things that the grandchildren wanted to have as a remembrance of their Grandpa.  He and I had often talked about what each child would want to have.

My husband was a NASA scientist who worked for 45 years on the space program.  A good friend of Frank’s had called to accept our invitation to speak at his memorial service.  His colleague said, “Frank was a true engineer. He always came with concrete numbers and mathematical proof for his conclusions.  There was no guessing or using his instinct when designing systems that related to the space program.”   Therefore, this final launch of the Endeavour held more significance for our family than for some of the people dotting the beach.

It was a perfect day and the bird lifted from its perch, ascending into the blue sky without a hitch.  The rest of the children and grandchildren had to return to their work.  But my daughter, her husband, their two children and I walked the two block to the ocean to view the spectacle.  And we were not disappointed.  My daughter had wrapped her arms around both of her children as we walked and said, “This is an important moment in history.  But it is even more important for our family because Granddaddy devoted most of his career designing and working on piping that fuels the shuttle.”

As we watched the silent speck rise effortlessly into space, my eight-year-old granddaughter said in a loud voice, “Goodbye, Grandpa.”  Then she repeated it again and again as tears traced my cheeks.  I quietly wept for the loss of the man and engineer that I love. 

God is so good to his children and He knows what is best for us far better than we know ourselves.  For me, there was no greater tribute to my husband than that lovely voice speaking tender words as the vehicle disappeared, “Goodbye, Grandpa.”

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