Ronnie ‘s parent are still alive.  However, for about five years every Mother’s Day, he tried to interrupt our worship with deep sobs crying for his mother because her mother (his grandmother) was dead.  The first year, it happened I assumed that Grandmother had just died.  I went to his mother and told her how sorry I was about the death of her mother.  She looked at me somewhat quizzically, “Thank you but my mother died about 15 years ago.”

As Ronnie continued to attempt to occasionally interrupt our class time with his sobs, I came to realize that Ronnie was using this as an attention-getting ploy. 

Many of our mentally challenged members seem to live with grief for such a long time.  Some, like Ronnie, use grief to get attention but he is the exception.  Most of our members live with deeply embedded grief that haunts them continually. Therefore, I think it’s important to think of ways to help them overcome their grief.  Therefore, I think it’s important to think about ways to empower them to overcome their grief.

First, you will need to ascertain if this is genuine grief or an attention-getting device.  This could be hard to detect.  Most of our members aren’t as obvious as Ronnie.  Here are some of the problems and possible solutions.

  • Appropriate Loss–Pam and her mother had a full life.  They were active in their church.  Twice a week they went shopping together.  It was a day where little money was spent but they had lunch together and they perused the shops for knick-knacks.  Once a week, they went to the $1 matinee at the movie.  They were great companions.  When her mother died suddenly, Pam was moved into her own apartment where her active and joyful life abruptly screeched to a halt.  She had no transportation to church, shopping or the movies.  When Pam talks about her mom, I stop and listen.  Pam may never recover from the deep vacuum that her mother’s death left inside her life. 

In cases like Pam, don’t expect a quick or speedy recovery.  She is not only grieving the lose of her mother but the lose of a lifestyle.  The lose of her home.  The lose of her church family.  After 10 years, Pam is now able to talk about her mother with a smile.  “I miss my mom every day,” she tells me on occasion. 

“I know,”  I tell her as I reach out to touch her.  She needs lots of time and understanding.  I never try to get her to close the door to her past or encourage her to dwell there.  Yet, I think it is healthy for her to look back on occasion and to remember the good times in her former life.

  • Need to Talk–Tommy occasionally talks about his mother.  Once on the subject, her death becomes “the topic of the day.”  Tommy loves to talk but he doesn’t have much to talk about.  Therefore, he picks the “topic of the day” to repeat, examine and analyze.  This is a pattern in his behavior.  Everyone who knows and loves Tommy realizes that Tom’s occasional obsession with his mother isn’t part of his grief process but part of his thought process. 

Tommy’s caregivers have learned to listen with one ear with his processing.  They may or may not respond.  After all, Tommy isn’t speaking to them but working through the “topic of the day.” For Tom, this is a normal and familiar behavioral pattern. 

  • Attention-Getting Device–What about Ronnie who uses grief to garner attention?  The best antidote is to ignore, ignore, ignore.

Nevertheless, while ignoring one behavior, it is also important to understand Ronnie’s need for appropriate attention.  When Ronnie raises his hand to answer a question, I remind him the subject that we are exploring.  “We aren’t going to pray for your grandmother or your mother.”  Ronnie will then answer correctly.  After that, I am careful to praise Ronnie for her remarks or questions.

  • Occasional but Normal Sadness–Norma started to cry one Sunday.  This wasn’t normal for her.  “What is wrong?” I asked her.  She explained that she really missed her mother that day.  She asked for prayer.  I had an elder and a member take Norma to the very back of the room and pray for her.  Norma came back smiling and happy.

There are times that all of us simply need extra attention.  If this isn’t a normal behavior, then some added attention is definitely appropriate.  Prayer and comfort can be the best medicine a weary and hurting heart can receive.

  • Loss of bonding–James is autistic.  When his mother became to ill to care for him, he was moved into a group home that had rotating staff.  Each day, James was greeted with a new person to take care of him.  He began to exhibit strange and uncontrollable behaviors.  His security had be ripped from him and he was given an impersonal bed and a rotating staff to replace the deep bonding he had known with his mother.

James’ astute support coordinator understood that his group home placement had not been appropriate.  He was moved into a home that had house parents, rather than rotating staff.  While there are different staff members who come in the afternoons, James has a consistent presence in his life that he interacts with each day.  Within a week, his behaviors had been replaced with loving and kind gestures, extended toward his new permanent caregivers.  He will always miss his mother and that bond can’t be replace.  Yet, he is able to cope now with consistent and loving care.

  • Need of Attention because of extreme loss–Carolyn is extremely high functioning but she has a great need for attention.  Her life story is exceptionally sad.  As a teenager, both her parents died of cancer.  Her only sister died of the disease at the age of 22.  She has had several severe bouts with several forms of the malady in her young life.  For years, she wasn’t expected to live but a few months.  Now, the cancer is in remission but Carolyn is alone.  While she appears to cope exceptionally well, her tragic life has left her hungering for attention. 

Whenever I am with Carolyn, I try to give her as much attention as I can.  Because some of her tactics to achieve attention aren’t wise, she will push you away, while craving your love.  Love, love and more love is the only thing that I’ve found that works for the Carolyns in our ministry.  The pushing away and pulling toward can be exhausting.  At times, I need to back off and give it a rest.  I ask the Holy Spirit to give me and her care givers wisdom in helping to heal the gaping wounds left in her heart by cancer and death.

  • Not allowed to grieve–Sorina was ignored during the weeks that her mother was in the hospital dying.  She wanted to be with her family but they had been told that they should pretend that everything was all right.  She wouldn’t know the different.  Of course, she knew the difference and she grieved deeply at the lose of her mother and the exclusion she felt by her family.

Sorina was able to work through her grieve because her workshop staff allowed her to walk through her grief in appropriate ways.  They called someone to help her with her grief.  They took her aside and allowed her to cry and process through her grief.  When inappropriate behavior appeared, they jumped onto the situation.  Again, they called a person that Sorina trusted to come and help her through the sadness and anger.  Within a few weeks, Sorina had been able to process the grief.

The basic advice is allow a person to cry and be sad for a time.  This is healthy and right.  The family will know when there is excessive or inappropriate grief. 

What are some of the things you have seen that work in allowing a developmentally delayed person to express grief?

With Mother’s Day comes a plethora of stories from our members about mothers and fathers who have died.  It is predicable who will cry about losing his mother 20 years ago.  While many of these parents died decades ago, the grief is as fresh and real as if it happened yesterday. 

I’ve pondered a great deal about this.  While I’m certainly not an expert or a behaviorist, I’ve come up with several reasons that I feel may explain why this phenomenon may exist:

  1. Many times, our members aren’t allow to grieve in a natural or normal way.  They may not even be told about the death, but they must surmise from circumstances  that Mom or Dad are dead.  The experts will tell us that this is extremely unhealthy and prolongs the grief process.
  2. Our members live with their parents for all of their lives.  They do not separate as most adults do from their birth homes or families.  Therefore, their attachment to their parents is extremely strong.
  3. They may not have a lot to talk about so they resort to the thing that seems to get them the most sympathy.
  4. Like all of us, they want attention and sympathy.  This event garners them the attention they legitimately crave.
  5. After their parents death, they have lost the most significant bonding experience of their lives.  They crave this bonding experience with others.
  6. Bonding with others may be difficult for a number of reason:  a) For any number of reasons, there may be resistance from others to develop a deep and lasting relationship with a mentally challenged person.   b) Their lives become more transient with caregivers moving in and out of their lives.  c)  Their lives become more transient because they are moved from group home to group home.  d) They may be moved into an apartment where they have to whom they can communicate.  They will be lonely.
  7. They are more open and honest about their grief than others.  I still miss my dad even though he has been dead for more than 20 years.  However, I don’t cry about my sadness because I know it isn’t appropriate.  Our members may not understand those boundaries.

Of course, there are other reasons.  This isn’t the final and complete list.  What are some of the reasons that you believe your members continue to express their grief?  Do you allow this?  How have you helped them to move away from this grieving process?

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?