Caregivers


Leonard is a handsome young man who was separated from him siblings at birth.  The State of Florida convinced his widowed mother that she could not take care of another child, especially one who was intellectually disabled like Leonard.  Therefore, the other children never knew about their brother.

The brothers and sisters were all under eight years old; and they didn’t understand that their mother was pregnant when their father died.  When she left for a few days, they didn’t know that she had a baby.  She made weekly trips to visit him every Saturday; but she never told them about him.

As their mother was about to die, they learned about their brother.  They began a search; but they could not find him.  Finally after 15 years, they simply googled his name and found him.  These are successful men and women who are Christians.

Even though it had been more than 30 years, they arranged a meeting.  Then they began to schedule visits with him.  Several months ago, they moved their brother to another city in our state which is much closer to them.  Reports from him have been discouraging.  Our understanding is that Leonard has tried to commit suicide.

I have no idea that this report is true.  However, this I do know.  It is a tricky thing to move a family member away from their friends and familiar surroundings.  Many times, siblings make promises to their parents that they will take a brother or sister who is developmentally disabled into their homes when the parents die.

Most siblings try hard to fulfill this commitment.  However, there is one factor than many parents and siblings forget to consider–the person who is mentally challenged.  Many times, they don’t want to move.  They have friends and their lives are established.  They must leave their homes, their rooms, all their things.  At times, siblings need permission to be released from an unworkable situation.  Other times, siblings may need added help in finding ways to help their brother or sister adjust to new surroundings.

What have you found that works in these hard situations?

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It’s been too long.  I’ve not had a preteen/teenager living in my home for many years.  Our first child was a boy and his transition from child to pre-adult was quick and violent.  My perfect child exploded in so many ways that I was left reeling in shock, terror and despair.  Later, I learned–but didn’t realize at the time–that an explosion is the only way to venture into the unknown and horrifying land called Adulthood.

Our second explosion came in the form of a daughter.  She was different.  She exploded slowly with fireworks rather than an atom bomb.  However, a continual burst of cherry bombs and fire crackers is equally unnerving after six months or so.

I have to admit the third child exploded in so many different ways that it was almost a relief.  Marked by a passion for Christ and missions, she erupted all over the world (literally) with trips and adventures that took her from Europe to Asia.

But my last venture into this explosive mine field was more than 20 years ago.  My skills in dodging and weaving have not been sharpened in so many years, that I’m out of practice and I’ve completely lost my edge.

This week I’ve been staying with an exceptionally gifted and intelligent young woman whose parents are out of town.  Her manners have been honed by the protective virtues of parents with one child who deeply desired that she have five siblings.  With the only child, there is the tricky jig of monitoring every movement while desiring to show parental love.  Because none of us are perfect, this results in amazingly healthy ways of showing our love spotted with some unhealthy ways, as well.

This young woman thrives on debate.  I believe she came out of the womb thinking of ways to debate the weather, books, toads, God and the universal secrets of life.  Carefully, she uncovers your views by asking a miriad of questions; and then before you can know what slammed you, she takes the opposite side and destroys your position.  For a person like me who loves The Debate, it has been an exciting and exhilirating couple of days.

But I must confess that I’m lost most of the time we are together.  One moment, as comrades, we are battling the unphathanable depths of literature and drama.  Then, within moments, we’ve been thrown into a battle of wits between the two of us.  Everything in me says, “Don’t argue with her.”  I know this is wisdom.  It is  the best and only path. Nevertheless, I seem powerless to resist the pull of the surging waves that hit me.  Then once caught in the undertow, I struggle to swim along the shore to be able to get my feet back onto the ground.

In short, I’m a stranger in a strange land.  Yet, rather than depressing or disappointing me, the opposite effect emerges.  Being with a young, gifted child who is on the trembling edge of adulthood has been excilerating and wonderfully pleasant for me.  As she slammed the door, this morning yelling, “I don’t have time for all this.  I have to go,”  Closing the door, I silently prayed for her and I knew that her time with me has been much more depressing than excilerating.  But that is strange land in which she now lives and she will live here for almost a decade.  Nothing can make it better, except a deep relationship with the Lord, buckets of love and time.

It is difficult to understand how much God loves us.  While few of us will admit it, much of our lives is spent waiting for God to slam the judgment hammer into our skulls.  Working within the mentally challenged community, I’ve come to understand a bit about unconditional love.  I am area director of Special Gathering, a ministry to people whose IQ’s are lower than “normal.”  Our mission is evangelism and discipleship of the wonderful community the Lord has given to us.

Please understand.  People who are intellectually disabled are not immune to sin.  Bad behavior is as common within our community as any other gathering of human beings. Yet, there is a common strain that runs within every part of our cloistered sub-culture.  That is unconditional love.

Wendy knew that I was angry with her because she had deliberately disobeyed the rules at camp this past weekend.  We let it slip the first three or four times; but by the fifth offense, I confronted her regarding her inappropriate behavior.  My voice was stern, firm and steady when I explained that she would no longer be welcomed at camp if her behaviors continued.

Wendy’s head reaches almost to my lower chest.  She looked at me with wide eyes.  “I love you, Linda Howard.  I so sorry,” she said with her eyes welling up with tears.  “Will you forgive me?  I love you, Linda Howard.”

She grabbed me around the waist and repeated, “I love you, Linda Howard.”

Understand, her emotional outburst didn’t loosen my resolve to enforce the camp rules.  She was obviously wanting me to know that she loved me even though I had told her that she might miss coming to camp. I could not help but appreciate her unconditional love.

Once again, I was surprised by the joyful spirit Wendy extended to me.   Sure, many of our members are depressed.  Some of them are even depressing.  However, the over arching surprise package is their joy.

Learning from them has become an easy pill to swallow, especially when I am again and again surprised by joy.

 

I walked away from my conversation with John’s only remaining family, a sister and brother-in-law, wishing I had known him better when he was alive.  But that always happens when I interview a family before attempting to conduct a memorial service or funeral.

John died on a Wednesday.  He was a member of The Special Gathering, a ministry within the mentally challenged community.  An important part of our Melbourne program and a member of the choir, we were often cloistered in the van traveling with the rest of the singers.

Therefore, I probably knew him as well as anyone did, other than his family.  But I realized as I got into my car and sat for a few moments reflecting on John’s life that there was so much more to know about him.  These were important things about his past that had shaped him into the man I admired.

There were vital details that I didn’t know or understand.  John was 84 when he died.  Which means that he was about 74 when I met him.  He was a tall and thin man who always stood straight, proud and erect.  He smiled often but you had to savor his words because he didn’t often share his thoughts with anyone.

John was born and raised on the farm.  All his life, he knew hard, hard work.  Therefore, he was stronger than most men half his age.  He loved to work; but, like many people, he was hesitant to push himself into an unknown situation, concerned that he might make a mistake.

For 65 years, John was a devoted train watcher.  The trains carried coal from the mines of Pennsylvania, running directly through the middle of the farm.  Most of his life, his partner in the fields was his father.  Unwavering, the pair sweated through the heat of the day and pouring rain.   But the men would leave their plow and hoe and straighten up as soon as the rambling or whistle could be heard.  They would take off their hat, pull out a handkerchief and wipe the sweat from their face and neck.  The duo watched every train as the cars ambled or raced through the middle of their crops.

“If Mother caught them, she would scold unmercifully,” his sister reported, but her temper couldn’t keep them from stopping when the next trains rambled past.

After John severely broke his leg at the age of 65, his sister and her husband brought him to Florida.  He lived with them for the next 15 years.  He continued to work, helping with the household chores.  He went to Easter Seals at the Alzheimer’s section.  Though he had not one bit of Alzheimer’s, he delighted in helping to push the wheelchairs of the other more frail members of the troop.

While we don’t ever admit it, there is something wonderful about death, that final passage of life.  Because people stop to remember.  We brace our hoe under their armpit and take off their hats.  Slowly, we wipe our brows and listen and embrace the rambling noise of memories.  And for a brief moment in time, we allow ourselves to rejoice in the past.

Jesus said at the last supper, “Do this to remember me.”  Memory is a vital part of the Judeo-Christian heritage.  The passover is a ritual of remembering.  But somehow we refuse to do it.  Our lives are wrapped tightly in the present and future.  Even our older generations, don’t take the time to remember…or we don’t take the time to listen.

But death abruptly unwraps the cocoons of our present and our future and we come to a screeching halt as the noise of the past slaps us in the face.  The only thing John’s family, friends and I have left are our memories of him.  His quick smile.  The way he said, “I know.”  Consequently, for a few days, we’ll savor and nourish and treasure those memories.  We will remember.

What are the treasured memories you have of your members?  What member would you miss the most?  What memories are you impressing on your family and members?

On Friday, June 3, 2011, there was a web meeting that District 7 Support Coordinators had with Tallahassee Agency for Persons with Disabilities (APD).  This meeting may have included Support Coordinators from around the state.  However, we have not knowledge of that.  Below is a statement that a support coordinator sent to Richard Stimson, Special Gathering Executive Director, about the meeting.

Hey, call me if you have time tomorrow.  The Host home issue is going to be BIG!  They (APD) talked about it in the web training on Friday. Anything to save a buck.  If people are not looking appropriate for Res Hab (residential habilitation) or NOT making progress, they are heading to the host home just like the good ole days of HRS (Health and Rehabilitative Services).  Hate to say it; but I think you were right.

You need to check this out with Support Coordinators you know, but it appears that the state is going to try to move clients that do not want to live in supportive living or who are unable to live in supportive living into host homes (foster homes).

While host or foster homes are not proposed in other states, Florida, like California, is known as a pace-setter across the nation.  This is a move backwards for people who are mentally challenged.  Having served on the Local Advocacy Council for several years, I learned that there is little or no oversight in this type of home.

As a ministry within the mentally challenged community, it is important that we be people of prayer for our members.

For Sam, Cara and George, the large problem looming in their lives on Sunday was if I received their camp forms for the Memorial Day Weekend retreat that we hold each year.  This is an important four-day spiritual getaway and a vacation for our members.  They save their money all year to be able to attend the camp.   

I stood in front of our members making announcements and their minds were pulled toward camp, not the weightier issues that had monopolized the conversations of most of my friends during the week:  labor demonstrations and disputes, mounting federal debt, continuing budget short-falls in every state, the implications of wars in the Middle Eastern countries.  Honestly, it was a jarring and refreshing change.

My small world has been occupied with the declining health of my husband and the increased financial outflow that is needed for his care.  I smiled at the honest and forthright concerns that dominated their thoughts.  I remembered a story that an evangelist from Nicaragua told me about an event that happened one night when the Communist were taking over the government in Managua. 

He was visiting his mother-in-law; and he asked her about the stereo set that she had borrowed from him a few months before.  “It was surreal,” he reported.  “About the time I asked her about the stereo, a gun battle broke out in the streets of the city.  Gun shots from the insurgents began to fill her house.  We dived under the table for safety.  As we lay there with our lives hanging in the balance, my mother-in-law started arguing with me about who owned the stereo.  She insisted that I had given the equipment to her.  I was in such shock.  Bullets were flying around the house.  We were hovering under the furniture.  All she could think about was disputing the ownership of a stereo.” 

It is obvious that the mentally challenged community are not the only people who campartmentalize their lives.  I’ve not done any research on this subject but I wonder if our minds choose to process those things which affect our personal well-being before other issues are allowed to crowd our psyche.  Perhaps that is why we are constantly told from Genesis to Revelation to seek God and His will for our lives. 

The hardest disciplines in Christendom seem to be prayer and meditation.  Without a set time and ordered regimen in my life, I will never do the hard work of prayer.  Even though I cannot imagine that God Almighty wants to have a relationship with me and engage me in conversation, without a disciplined resolve, I will waltz through my day without giving prayer a second thought.

The world’s weighty problems do demand our time and energy in prayer.  Additionally, we need to train our members to look beyond their daily needs, hurts and issues,  seeking God for his perfect will to come into our world.

As I waved good-bye the last group of visitors, new folks were arriving on Friday.  Yesterday, a pastor spoke to a staff gathering about the importance of being willing to have our homes open for visitors. In our society, as ministers of the Gospel,  there are a vast variety of things attached to our job description.  Almost out of necessity, the scriptural mandate to be “given to hospitality” becomes “other duties as assigned.” 

Over the years, hospitality has been one of the delightful aspects of  ministry for my husband and me.  We enjoy sharing our home with others; and we are deliberate to open it to others.  Sure, there are hazards.  Things do go missing.  My husband received many relics from outer space because of his employment with NASA.  These  ranged from slivers of rocks from the moon to pieces of the rope that tethered the astronaut to the vehicle on the first space walk.  These were history-making events and keepsakes.  We treasured them and proudly displayed them on our shelves in the living room.

One day we woke up to realize that almost all of these items had disappeared home along with a few other valuable pieces.  The realization came soon after we discovered a teenager who was a chronic liar slipping one of keepsakes into his pocket.  He, of course, put it back and he never returned to our home. 

We learned to take appropriate precautions; but we also understand the logical risks involved in having many people coming into our home.  Then as the years have passed, at-home hospitality evolved into a pleasant memory of the past for many households.  Perhaps it is because more and more women have entered the marketplace for paying jobs.  A quiet dinner with a couple of friends gathered around our dining room table isn’t as convenient as meeting a few folks at a local restaurant.

However, a few years ago, Special Gathering founder and executive director, Richard Stimson decided to revive the age-old tradition for his programs and suggested that we do the same.  The plan was to invite two families into our home for dinner each week until all the families we serve had been asked to share a meal with us.  He suggested a simple menu and even asked that we take the expenses from the program allowance of our budget.  I believe this may have been one of the most beneficial things we have ever done to garner favor and familiarity with our members and their families.  Even though it’s been years since that initial time, our members still say to me, “Remember when we came to your house for dinner with my mom and dad.”

The scriptures are clear about the importance of the meal and the bonding that happens during the “breaking of bread.”  It is no coincidence that one of the few ordinances that Christ left for us took place during a meal.  More orthodox denominations call it “communion” or by the Greek term, Eucharist (which means “give thanks”).  I was raised in the Christian tradition that called this meal, “The Lord’s Supper.”  I love all these terms because each one speaks of the bonding that takes place over a meal in our homes.

With the demands of my husband’s care, my life is becoming more closed into my house.  Therefore, I’m beginning to look forward to having more people join us in our home.  But my schedule is not ordinary.  Time is such a pressing and demanding commodity in almost all of our lives that it seems almost draconian to say that homes should be opened to our members.  However, the scriptures haven’t changed.  We may need to pray about how we can better implement this important Biblical guide into our ministries.

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