Hidden Sorrow, Chronic Sorrow

Grief not shared or acknowledged by others can be the hardest to bear. Christopher Pramuk's "A Hidden Sorrow: Praying through Reproductive Loss" brings to the Christian Community's awareness the piercing sadness of stillbirth or of infants who day shortly after being born. Although the support of God working through human families and friendships can be comforting, it is clear that one never gets over a loss such as this. Professor Pramuk recalls his 103-year-old grandmother, who until her last days recalled five of her siblings whose lives never reached adulthood.

There are often two incompatible notions we hear about grief, both from professionals and common lore: one is that grief is time-bound, while the other is that is is chronic. Although each person grieves uniquely, persons and families experiencing what Professor Pramuk writes about may share aspects of grieving with parents who raise children with genetic anomalies or who suffer from mental retardation. One father wrote about how his experience as the parent of a retarded child did not fit with the view of parental adjustment suggested by the professionals:

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Parents of retarded children, the theorists tell us, learn to live with their children's handicaps. They go through stages of rejection, moving through shock, guilt and rejection to the promised land of acceptance and adjustment.

My own experience as the father of a retarded child did not fit this pattern. Instead, it convinced me that most people seriously misunderstand a parent's response to this situation. The standard view does not reflect the reality of parents' experiences or lead to helpful conclusions.

Professionals could help parents more--and they would be more realistic--if they discarded their ideas about stages and progress. They could then begin to understand something about the deep, lasting changes that life with a retarded son or daughter brings to parents. And they could begin to see that the negative feelings--the shock, the guilt, and the bitterness--never disappear but stay on as a part of the parents' emotional life.

Most parents, I believe, never fully resolve the complexity of feelings. They don't 'adjust to' or 'accept' that fact, at least not in the way psychology books describe it.

This parent was quoted in the classic article "Chronic Sorrow Revisited: Parent vs. Professional Depiction of the Adjustment of Parents of Mentally retarded Children" by Lynn Wikler, Mona Wasow, and Elaine Hatfield [American Journal of Orthopsychiatry, 51(1), 1981, 63-7]. They sought to discover just how "time bound" and "chronic" aspects of sorrow were experienced "by the parents themselves." An interesting discovery was that—while sorrow might be chronic—it was often not continual or continuous but rather was evoked or exacerbated by certain developmental experiences.

There were ten specific developmental crisis points for the parents of retarded children where grief and sorrow were experienced intensely: 1) diagnosis from a specialist; 2) time when child should have begun walking; 3) time when child should have begun talking; 4) younger brother or sister overtakes the retarded child's abilities; 5)serious discussion of placement outside the home or actual placement; 6) beginning of school attendance; 7) management of crises (behavior problems, seizures, health problems) unique to the retarded child; 8) onset of puberty; 9) 21st birthday, which for others is a milestone of independence and entry into adulthood; and 10) serious discussions about guardianship and care for retarded child when parents die.

Within each Christian community there may be parents who experience hidden sorrow, chronic sorrow. This may be brought about by having experienced a stillborn child; it may be due to infertility or it may be due to raising a child who is mentally retarded. While others in the community may think that grieving has been dealt with, these parents themselves know that hidden sorrow becomes chronic sorrow and can become sharp suffering or even incapacitating grief at future times far removed from initial grieving.

William Van Ornum

 

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we vnornm
6 years 9 months ago
Hi Jim,

You bring up an issue that's really important and really important to find the right balance  for each person. Within the term "mental retardation" there's such a range of abilities and personalities. For many individuals and families group homes can be wonderfully affirming and can be the right choice. New York, too, is one of the "good" states-perhaps some of this is in response to the Willowbrook scandal of the early 1970s. We also have very high state taxes. best, bill
6 years 9 months ago
Jim,

You are so right about the lack of knowledge, expertise and services for the developmentally disabled at the time of your sister's birth and growing up years.  In Minnesota, a progressive state, where I grew up at the same time as your sister, there were only two alternatives for parents.  Caring for the child at home as your parents and then your mother, alone did or placing the child in one of the large institutions in the state.  It was later learned that the residents were involuntarily sterilized in a eugenics movement to rid the state (country) of "imbeciles and idiots".  You might find the history of families of retarded members banding together and fighting for change in laws effecting education and placement to be very interesting.  Then, of course, there was the work of St. Eunice Kennedy and all that flowed from her founding of Special Olymipcs.  It was the power of families working together that effected change.

In CA where I now live, a legislator and father of a retarded child sponsored and helped pass a law that established regional centers for the developmentally disabled throughout the state.  The philosophy that underlies the law is:  the least restrictive environment for the placement of the person.  All ages from birth to death are served by these agencies, although it does help to know how to access services for your child!  Conservatorship through probate court is also available and gives parents control over planning for their over age 18 yr old child.  Since the state is in such dire financial difficulties, no one knows what will happen to all the programs now in place.  My daughter now works in a supported employment program at an AMC theater as an usher.  As my children are considered high functioning the plan worked out with the state social worker (#10) is for them to remain in our townhouse with supervision by independent living skill counselors.  For the present they each have an ILS worker twice a week.  Our social worker is always after me to take another trip so they can practice their independent skills without me around.  :-)

I'm happy that you and your sister were able to work out such a great placement for your sister.  In Iowa, of all places!
6 years 9 months ago
I think this blog is so wonderful.  It's providing readers an opportunity to share their pains/concerns so generously.  I can see and feel that the interaction among the bloggers is the incarnation  of God's love and concern for all his people.  Thank you again, Mr. Van Ornum.
we vnornm
6 years 9 months ago
Norma,

You are welcome, and thank you and all readers and those who write comments. bill
Janice Feng
6 years 9 months ago
Learning about family dynamics of families with members who are mentally retarded have always been a topic of interest to me. Reading this article allowed me to see how the parents of a child with mental retardation may feel. It bewilders me when I read of such information/beliefs from professionals that really do not at all describe the circumstances in which they pretend are true. Life in general is not cookie-cuter, and especially when it involves something like mental retardation. I have a family member who is mentally retarded and I understand what this posting was about. Grief is definitely something constant, and those specific stages certainly do not exist the way the professional said. I wonder though, you wrote this posting on how the parents of a child with mental retardation feel, but very rarely do I read of how other members of a family may feel. I'd be interested in hearing how an older or younger sibling may feel, or the kids of a parent who is mentall retarded, etc. The feelings of grief and "acceptance" would definitely be drastically different depending on the role. Thank you so much for sharing this post, especially knowing it is something personal to you.
we vnornm
6 years 9 months ago
Janice,

Thanks for writing. I wish persons in the Church could do more. So many times concern is expressed over situations thousand of miles away in other continents when there is caring to be done right in the parish. Yes, #10 is a very difficult one. bill
6 years 9 months ago
Norm,
I am very touched reading about your parents and their raising a large family with two retarded members.  They were truly heroic.  I think they were probably a generation or so ahead of my own famiy.  By the time my children were born , there was a federal law mandating a free and appropriate education for all children and in CA where we live, the state has regionally located agencies for developmentally disabled children and adults.  Having a social work background I know how to access services and how to teach others to do so.  That has made a great difference in the growth and development of my children.  They have done ever so much better than anyone years ago could have imagined.  And as Bill said about his son, they are the joy of my life.  I have never wished not to have them, although I'm glad to have occasional respite!  I've learned to have a life apart from them doing the things I most enjoy and they have become more independent because of that.

You mentioned your parents staying together.  How difficult that is to do.  The stresses on marriage are enormous.  As too often happens, my marriage ended in divorce.  I was blamed by my husband for the childrens" disabilities.  He wanted to remarry and have "normal children".  So you see, some bitterness remains many years after the fact.  When I get into a self-pitying mood, I allow myself a limited amount of time to be angry and then I move on to do something enjoyable with them or by myself.  I realized early on that sorrow is and will always be a part of my life.  Lent, the Passion of Christ and Easter are particularly meaningful for me.

Bill,
I do think the church needs to do much more for our families.  And I don't think it should be dumped on the clergy.  These are issues of social justice and culture of life.  I'd like to see the folks in both these parts of the church get together and figure out how they can live out their beliefs.  Too much fighting and not enough getting done.  Our laity is ever so much better educated affluent and in powerful positions now as compared to the 50's when I was a young person.  During that time there seemed to be so much promise in the church's laity to effect change in the light of Christ in society.  That promise has yet to be fulfilled.
Jim McCrea
6 years 9 months ago
I have a mentally handicapped sister who was born in 1942 – not a time with great expertise in dealing with these situations.  After getting as far in school as she could she spent the rest of her life living with my parents.  When my father died my mother had developed cancer but she kept on taking care (literally) of my sister:  seeing that she kept herself clean, washing her hair, laying out her clothes – everything for her.  Mom was a sick older lady with sick older lady friends, so my sister emulated them.
 
When Mom died in 1978 my other sister rather reluctantly took over the care.  We then realized how good it had been to have had our mother available all of those years, and how bad it was!  My sister was totally dependent on someone else doing everything for her.
 
We finally got her into a group-home program (in Iowa – one of THESE best states for these programs!) and it took about 4 years for my sister to become about as self-sufficient as she would ever be.
 
It is hard to take the position that too much family sheltering and care is bad for developmentally disabled people; that sounds cold and cruel.  OTOH, more independence for my sister earlier on in her life would have been better for her and for the transition from living at home to living in an environment that fostered the best within her and developed her to the point that today she lives on her own in an apartment complex that is monitored daily.
Megan Walters
6 years 8 months ago
I think this is a very interesting topic because I agree that hidden sorrow is chronic sorrow. The more people keep their troubles inside, the longer is lasts. It is important to find closure so you can move forward. However, I disagree with the way the first sentence states "grief not shared or scknowledged by others can be the hardest to bear." Later in the article, you stated "...each person grieves uniquely" therefore, maybe some like their sadness to be acknowledged but others may like to be left alone. It gives them a chance to think to themselves. Personally, when I am upset about a loss of a family member, for example, and somebody comes up to me asking me if i'm okay or if i need anything, it almost makes it worse. I will be fine one minute and then they try so nicely to help and I will be upset all over again.
I immediately thought of Bill Joel's song "only the good die young" when Professor Pramuk disussed how his grandmother recalled five of her siblings whose lives never reached adulthood. Dealing with losing a few people who never reached adulthood, two even twenty years old, it is the hardest loss and it will never be easy to get over.
I actually agreed with the professionals parental adjustment when they stated "...learn to live with their children's handicaps." I understand I am not a parent of a retarded child, however, I think no matter how hard it will always be, parents do learn from their children. It's a lot of handle but they learn how to deal with their everyday life, what they can and cannot do, alternatives, etc. It is a big adjustment in the parents life and they need to accomodate their lives to meet the child's needs. The parents will always except and love their child no matter what, hopefully!, no matter how difficult it can be.
I can imagine how upset parents must get sometimes realizing how much help their child might need or how tiring it may get, however, they can always discuss with a friend so they are not building up this sorrow and have it on their mind each day. They should be able to clear their head so they can continue helping their child.
6 years 9 months ago
The psychological theory of 5-stages of grief (from the 1969 book On Death and Dying) that has become accepted as fact in mainstream society has recently been revealed as a sorely lacking in evidence.

http://www.amazon.com/Truth-About-Grief-Stages-Science/dp/1439148333


Such generalizations of human emotion and behavior would seem to be obviously  unreliable, and yet we turn to them time and again, self-help book after self-help book, theory after theory.  Grief is complicated; unique for each individual, each set of circumstances.

we vnornm
6 years 9 months ago
Hi Michael,

I agree with you that the 5 stages of grief have caused confusion and may even mix people up. One thing I liked about the chronic sorrow article and Professor Pramuk's article was that each involved very active listening and accurate empathy rather than theorizing. It's surprising that it can be so rare to just "ask people" about their experience. bill
Alyssa Moirano
6 years 9 months ago
This article was extremely emotional to read.  I have been a substitute at BOCES schools on Long Island, and I have come into contact with all types of children: those who are mentally retarded, those with cerebral palsy, muscular dystrophy, etc.  It seems ridiculous to think that at any time the parents of these children would ever stop grieving.  I am sure that every day when a parent has to help dress his/her 18 year old child, he/she feels bitterness.  When a parent is changing a diaper on his/her fourteen year old child, how can he/she not?  How can a parent ever come to terms with a situation described above; every day would seem to be a constant reminder.  This can be proven true especially after reading the ten specific developmental crisis points for the parents of retarded children, as outlined in the article.  The initial diagnosis only marks the beginning of a never-ending journey of grief and sorrow.  I cannot speak from experience, but I would assume that with time it becomes easier to function day to day, however, it is naïve to say that the grief goes away.  Maybe these parents become better at hiding their feelings?  Maybe it would appear to an outsider looking in that a parent has reached this “promised land of acceptance and adjustment” when in reality, this is far from the truth.  I’m not sure, thoughts?
we vnornm
6 years 9 months ago
Alyssa,

I think many parents learn to find the positives in the situation. And many parents learn to ENDURE. Hard to generalize. Maybe a good point is to remember that each will grieve differently. Some will want to talk, some won't. I think when you become a teacher it will be great that you are aware of this and will be open to listen to a parent if they are inclined to talk about it with you. But I do believe that the "promised land of acceptance and adjustment" is a fiction. best, bvo 
Lia DeGregorio
6 years 9 months ago
I can't even imagine the pain one would feel from losing a child, especially after 9 months of waiting. For most people, having and raising a child is a huge deal and often a life goal. They probably imagine their future with children, planning future events and becoming excited for future milestones.

I completely understand and agree with the following quote, ''An interesting discovery was that—while sorrow might be chronic—it was often not continual or continuous but rather was evoked or exacerbated by certain developmental experiences.'' Everyday life is only one part of the challenge. The other part of the challenge comes from missing out on many of the big events that should occur. These developmental points would likely cause the most sorrow for parents, since these were the things that parents were anticipating. The whole course of human life is altered and that is most likely the hardest adjustment to make.

I give these parents a lot of credit for the strength and versatility they exhibit. Many of them successfully focus on the positive aspects their child has, rather than dwelling on their differences. From my experiences with these types of families, I have come to find that as difficult as having an intellectually disabled child may be, hope of having a happy life should not be lost.
6 years 9 months ago
Thank you Bill and Professor Pramuk for your insightful articles on sorrow, hidden and chronic.  I noticed that the date of publication of the research article in the American Journal of Orthopsychiatry was 1981.  There is a great deal of wisdom in what you have quoted from the article and yet the old stages of grief theory is still promoted. 30 years later.  I can relate to these issues from my experience and I heartily agree with the research writers.  I grieved after learning that my son has developmental disabilities and was emotionally devasted when my daughter at age 3 was diagnosed with aphasia and later with autism.   I was very angry with God at the time and asked a priest friend why God could allow this to happen to us.  The priest's answer was that we would never know why.  I learned that the proper questions to ask were:  what do we do and how do we do it, for our children.  As an older person now, I can look back and see the many ways that God in his mercy and providence acted in our lives.  But, going through the years of struggle -getting correct diagnoses, engaging in various treatments, special education , one crisis after another-life was often a nightmare.  Sorrow was and is an intermittent part of life for me. 

I would add to the authors' developmental crisis points a personal one for parents.  Any significent loss, even those unrelated to the child, can bring forth the unresolved grief of that earlier loss of the fantasied child.  For example, the loss of one's parents, siblings or as for me, the recent loss of a precious friendship can unleash mountains of grief. 

Th?e? ?d?e?v?e?l?o?p?m?e?n?t?a?l? ?p?o?i?n?t? ?t?h?a?t? ?my family is in is #10:  planning for my children when I am incapacitated and die.  Over the years I've looked to the church for practical (never financial) and emotionally supportive help and have found very little.  Church members and friends who love me and enjoy being with me , say they pray for my children but never offer to take them out to a sporting event or some way give me respite.  I have always had to pay to get respite.  There has been no religious education for either child.  My daughter is not confirmed and neither child wants to go to Mass with me.  I think that this unwillingness on the part of people who have not experienced  raising a child with disabilities to engage with the children was exacerbated when 17 yrs ago my son was diagnosed with schizophrenia.  I have often had to reassure friends that my son is gentle and compliant, not a threat to anyone.  Still, every time there is a tragedy involving a mentally ill person being violent, the thought is there about my son.  Is he dangerous?  At this stage of my life I ask myself what will happen to my children when I die?  Will the church be involved in any way?  I'm not counting on that happening, sad to say.?
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we vnornm
6 years 9 months ago
Norm,

Thanks for the story of your family. It is somewhat easier now for many families with all the services. I know one father* who has a son with Down syndrome-and that young man is the joy of his life, from the time he held his son in the birth room till now, 26 years later. So there can be positive stories, too. best, bill

*me :-)
we vnornm
6 years 9 months ago
Lia,

I am glad you will be working with children and famlies in the future! best, bvo
JAN STIVERS PH D DR
6 years 9 months ago
Alyssa, I am the mother of a 23-year-old son with disabilities that limit his ability to live independently.  I  find it helpful to remember something a counselor once told my husband and me when Kevin's disabilities were becoming apparent (and when we were simply terrified much of the time).  She said we had to remember that Kevin's disabilites were only one part of him - that he had many endearing traits that would continue to exist independent of his disabiliites.  This wasn't Pollyanna-ish pablum to encourage us to make the best of a bad situation - it was excellent advice that provided a balancing perspective we needed.  I hope you will keep it in mind when you are a teacher working with families of children with disabilities.
we vnornm
6 years 9 months ago
Janice and Norm,

I think there is great potential in the Prayer of the Faithful each week to bring to the community's attention the needs we are discussing today. Too often there are general phrases such as "Let us pray for those with physical suffering, psychological dysfunction, or spiritual malaise" when a specific petition would be more powerful. best, bill
we vnornm
6 years 9 months ago
Jan,

When my son was only a few months old we consulted with Dr. ian Porter, geneticist at Albany Medical Center. He held my son in his arms and declared, "What a splendid baby!" I will always remember this. It was not, as you say, pablum, and teachers and doctors and others can do a great deal to help parents and children in short interactions like this one. Thanks for writing! Hope to hear from you again here. I'm really proud of the comments of our students here and know your classes have helped them immensely. bill
6 years 9 months ago
Norm,
I would have liked to have known your parents.  They were models of what bill calls endurance and they did it all together.  Have you ever thought about writing on your experiences as a sibling in a family with disabled members?  With your background in psychology and writing skills, I think you could make a significent contribution to this field of study.  I believe that personal testimony has great potential for teaching and sensitizing people who have had little or no expereience with disabled persons.  It is difficult to do for people like me who are normally reserved and private, but as the older priest wrote in a recent "America" article, the ego has less importance as we age.  And one must be careful not to hurt anyone who may have been involved in one's life.

Thank you for Rabbi Kushner's quote.  I read that book many years ago and it has had a lasting impact on my spirituality.  Through very hard times in my life there have been caring people to help me on my way.  Recently, a dear friend who knows I'm struggling (with #10) brought me a bouquet of my favorite flowers, lilacs, which are rare in this climate.  A person that I know who has a life as difficult as mine is a continual source of inspiration.  God does provide. 

I frankly don't believe in resignation or acceptance.  Not when we have a God of infinite love and mercy who waits for us to call on him for help.  There are no bounds to what he can accomplish in us.  Sometimes it is a matter of us putting aside our feelings of unworthiness and in humility, asking.

Bill,
I love the stories of you and the doctor holding your baby boy and seeing what a beautiful child you had.  It reminded me of the time I worked for spec ed in the SD schools as a parent facilitator.  Our instructor, who did not have a disabled child, told us that whenever we went into a home that we should always first notice something positive about the disabled child and relay that compliment to the parent.  Well, this was pretty laughable considering that she was talking to a group of young mothers of children of various disabilities, who would have no difficulty at all finding loveable, positive things to say about any disabled child.  For your doctor this lovely comment came naturally from his heart.  Caring people such as the doctor are a blessing.  Thank you too for bringing this subject up for discussion.
Janice
Cheryl Benjamin
6 years 9 months ago
The five stages of grief has always been an interesting part of psychology for me. I find it interesting how even though one does not exhibit these stages, they still exist within. I believe that these stages do not only happen in death but happen alot in life when each individual questions, does not believe, bargains and then accepts any negative experience they may have encountered. These hidden and chronic sorrowas cross each individual at some point in their life  and I believe that its these experiences that makes or breaks a person. These experiences either hinders or motivates and strenthens the person
Lauren Orichio
6 years 9 months ago
I had always known of the stages of grief as they applied to coping with death, but I had never thought to apply them to the process of coping with having a child with a developmental disorder. The stages at which parents might grieve I found were thought provoking, as I had thought that at some point parents would reach a state of acceptance which would carry through the child's life. This article has opened my eyes to the lifelong struggle these parents have with their children at each and every milestone. 
This article has given me some good things to think about in my future teaching career, in how I could be a support to parents of my students who may have such developmental disorders. It provoked me to want to look more into support for the types of issues these parents will face. I would not only like to be teaching special education students and helping them to reach their unique potential, but I would also like to be a support to their parents as much as I can in my role.  
Lori Bertolina
6 years 1 month ago
Dear Bill,

Thank you for your wonderful insight on this very deep and painful subject.  May God Bless all of us that struggle with a child that is "different" and give us the strength and insight to open the eyes of those in the world whom are blind and comfort the parents of these wonderful children.

At times, sorrow may feel like an endless river of tears.  Yet, there is light in this journey.  God has chosen us to love and protect these children and it is an honor to do so. 

Each of our souls may be challenged in different ways, at different times.  This is a gift from God that enables us to grow spiritually.

With my love and prayers,

Angelori

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