The classroom was escalating quickly. With one, swift kick, the desk that perfectly fit a 9-year-old body crashed over, papers and colored pencils strewn about the floor. For being a thin, slight boy, Gabriel had a lot of strength.
It was a scene that happened every month or so. The teacher and the kids knew what to do: Stand back and give Gabe space until he calmed down enough for the principal to walk him to the office. His parent would be called, and he would go home.
What is wrong with Gabe?
Gabe’s parent is at wit’s end. Home life has been hard the past few years, ever since Gabe’s older brother was killed in a hunting accident. The parents have managed to stay together, and with two other young children, plus Gabe’s growing special needs, the parent is at a loss as to how to help Gabe. The principal is equally as frustrated. These classroom episodes can’t continue because they jeopardize everyone’s safety and learning environment.
Is Gabe oppositional defiant? Does he have ADHD, a developmental disability, or a learning disorder? Perhaps a battery of special education testing or an IEP(individualized education plan) is needed. That thought only increases the anxiety within Gabe’s parent. How will a diagnosis like this impact Gabe throughout his lifetime?
There are millions of grieving children in the United States. With increases in school violence, mass casualty events, and accidents, those numbers are expected to rise. Grief and loss are hard to talk about, and parents and concerned adults often are at a loss for resources.
It’s easy to assume that children who experience a loss like death, or a trauma like a community disaster, are grieving children. Indeed, they are. What about kids like Gabe? Gabe’s brother died years ago … surely Gabe is over that by now. Or is he?
The No.1 mistake
Adults make a big mistake when it comes to grieving children: Assuming that children process their grief verbally.
Have you ever heard a child younger than 14 say, “I’m going through my anger stage,” or “I’ve accepted my loss?” I haven’t, unless they were parroting an adult. Children’s brains are usually not developed enough to process information — traumatic or otherwise — in language. They respond to stressors (e.g., loss and trauma) through their behavior and emotions.
Adults typically recognize the Five Stages of Grief theory developed in 1969 by Swiss-American psychiatrist Elisabeth Kubler-Ross. This approach has been effective to heal grief. It requires the ability to process sophisticated emotions — shock, denial, anger, bargaining, acceptance — by talking about them. Children don’t yet have the brain capability to process their loss this way.
What works best with grieving children
Instead, we need to meet grieving children where they are at, using interventions that work for them. Gabe’s mother, school counselor, or teacher could try these strategies:
Address grief before considering any other diagnosis. This could be done through meeting with the school counselor, therapy outside of school, and/or parent-child interventions at home.
Don’t expect Gabe to verbalize feelings about his loss. Instead, expect a wide range of behavior — anything from behavioral acting out, high anxiety, perfectionism or withdrawal.
Be aware that high-intensity activity might trigger high-intensity emotions. Plan ahead, and have a “Plan B” (an alternate activity) ready if Gabe needs it.
Respond to the feeling behind misbehavior (loss) whenever possible.
Provide materials for Gabe to express feelings about his loss in non-verbal ways. Art supplies, toys, books and sensory objects (e.g., sand and bean trays) are great tools.
The older Gabe gets, the more capable he will be of working through his feelings through reason and language. In the meantime, it’s important that we adults don’t miss the fact that he is grieving. Let’s not call it a behavioral problem, or otherwise mislabel it, until he has been able to process his grief in the way his 9-year-old brain is able to.
Death and grief are natural parts of the human experience, but mourning a loss is also an incredibly complex process.
When a young child loses a loved one, parents often grapple with the challenge of explaining the concept of death and helping their little one through the grieving process (all while grieving themselves).
To help inform these difficult conversations, HuffPost spoke to a number of child mental health experts. Of course, a family’s cultural and religious background may steer the discussion, but there are certain guiding principles that are helpful for everyone to keep in mind.
Here are some expert suggestions for parents and caregivers when they prepare to talk about death and grief with children.
Be Honest And Straightforward
“Tell them the ‘facts’ about the death,” clinical psychologist John Mayer told HuffPost. “Don’t sugarcoat what death is or use ‘baby talk’ with a child. Do not use phrases like, ‘Grammy is sleeping.’ This is an opportune time to teach them about death. Don’t shy away from it.”
Board certified licensed professional counselor Tammy Lewis Wilborn echoed this sentiment, noting that using “cutesy language” and euphemisms in an attempt to protect kids from the realities of death and loss can actually do more harm than good.
“Children tend to think concretely, not abstractly, so when you use language that’s euphemistic, it can actually be more confusing or frustrating,” she explained. When people say things like “Dad is in the clouds” or “Your dad is taking a really long nap,” a young child may not understand the permanence of the fact that their father died and might even look for him in the clouds or expect him to wake up at some point.
Words like “death,” “died” or “dying” may sound harsh, but this is still developmentally appropriate language, Wilborn noted, and it’s important for children to have the language to understand the permanence of death.
Ask And Answer Questions
The kind of conversation a parent has with a child following the death of a loved one depends on the child’s relationship with the person who died. It should also vary based on the child’s developmental age and their understanding of what happens when someone dies. To that end, it’s useful to ask kids questions or offer to answer any questions they might have.
“Starting with questions can be a way in,” said Wilborn. “And you don’t necessarily need to give the specific details of how the person died, particularly if we’re dealing with traumatic grief. They don’t need all of the information, but they need enough age-appropriate details to understand that a person has died and isn’t coming back.”
Sometimes children may have witnessed something related to the loved one’s death, like being present at the scene of an accident or visiting the person in the hospital. In these cases, they need help understanding what they saw, said Chandra Ghosh Ippen, an expert in early childhood trauma and the associate director of the Child Trauma Research Program at the University of California, San Francisco.
Parents should try to shrink themselves down to the size of their child and walk through what they’ve experienced. Seeing someone in a hospital with tubes coming out of them or watching paramedics perform lifesaving procedures may be frightening for a small child, so it’s necessary for adults to appreciate how scary things might look to them.
“Create space for them to share how it might’ve affected them, and try to help them understand that doctors and paramedics were trying to help their loved one,” Ghosh Ippen explained.
It’s an ongoing conversation. “Young children will often come back to you after your very excellent explanation of death and still ask, ‘Am I going to see so-and-so?’” Ghosh Ippen said. “It’s not that they didn’t understand you, but little kids tend to repeat their questions. It’s sort of their way of mulling it over and making meaning. This can be painful for caregivers, but appreciate that the child did hear you and is just having a difficult time wrapping their head around the concept of death.”
Know That Their Emotions Are Complicated
“Grief is a complex process, so it comes with a range of thoughts, emotions and behaviors,” Wilborn explained. While parents may expect their child to feel sad, angry, confused or even guilty about a loss, there are other behavioral changes that can be harder to understand, like changes in sleeping and eating patterns or school performance issues.
Sometimes parents may feel confused about a perceived lack of sadness in their kids. “Young children have a short sadness span,” said Ghosh Ippen. “A child can suffer a devastating loss and feel really sad, and then they can go play. You may be thinking, ‘Were they really affected by what happened?’”
While adults tend to immobilize and sink into sadness, kids often discharge it by running around or trying to do something else. “They kind of go in and out of sadness, and that can put us at odds with them if we’re thinking, ‘Oh, my God, do they not care?’” she continued. “But recognize that they did care.”
Wilborn noted that grief is a long process, so parents should reject the tendency to want to rush past it and wonder when their kids are going to be over it.
“Grief is a process that you cannot go around. You have to go through it. So you need to be OK with the pace of the process,” she said. “It can take some time for a child to return to his or her normal.”
Mayer emphasized the power of this experience and of talking to kids about death as a way to build major developmental coping skills. “This is a positive and helps them cope with loss in their life in the future and even transitions in their life, such as leaving one school to another, advancing to high school or college, and losing relationships.”
“Children need to see that their parents are a resource; home is a resource where grief is welcome,” Wilborn said, noting that parents should encourage age-appropriate expressions of grief.
“For example with a school-aged, play is their language, so you want to lean into ways that children play to promote communication ― things like drawing pictures, playing games, dolls, puppet shows at home,” she added. “With older kids, you might encourage them to journal, draw, write songs, create poems.”
Mayer noted that being a resource for your child creates a sense of safety and security that will serve them in later life events. “They know they can depend on you, and it is wonderful modeling for them.”
Creating rituals around remembering and honoring a loved one who died is another significant form of expression. “Explain that this person may not be here with us, but we can still remember him or her and celebrate their life as a family,” said Wilborn.
“When the death is really traumatic, sometimes caregivers stop talking about the person who died,” Ghosh Ippen explained. “And what’s hard in those cases is that children lose their ‘angel memories’ ― times when they really felt loved and cared for with that person. It’s normal for grown-ups in mourning to find it hard to talk about the person who died, but it’s important to memorialize them.”
Many cultures and religions promote rituals around saying goodbye and making meaning of death. Mayer noted that losing a loved one presents an opportunity for parents who have religious belief systems to explain these tenets to their children.
“Religious or not, it is also very helpful to teach your children that all the experiences and memories you have had with this loved one do not get erased with their death. People always live in our hearts and our minds forever, and no one or nothing can take that away,” he explained. “Say something like, ‘Where’s Aunt Susie right now? She’s not in this room with us right now, correct? That doesn’t mean she doesn’t exist.’ Aunt Susie is here (point to your head) and here (point to your heart). We have to keep our memories and good times with Aunt Susie alive.”
Make Sure They Know It’s Not Their Fault
“Sometimes children have this really uncanny way of assigning blame to themselves for things that have nothing to do with them,” said Wilborn.
With that in mind, caregivers need to help kids understand that the death is in no way their fault, and it’s not their responsibility to put on a strong face or hide their feelings.
Use Books And Other Resources
There are many great resources for parents navigating this difficult topic with their children. Ghosh Ippen and Wilborn both recommend Sesame Street’s online grief toolkit, which provides talking points, videos, activities, storybooks and more. Ghosh Ippen and Wilborn also pointed to the National Child Traumatic Stress Network as another great source of online resources.
Beyond books and online resources, Wilborn emphasized the value of community resources, such as school counseling, support groups, play therapy and peer counseling.
Let Them See You Grieve
The way a child’s parents or caregivers respond to a loss is instrumental in helping them cope. “They need to see you grieve,” said Wilborn. “But they also need to see you taking care of yourself and engaging in self-care, which may or may not include professional help. If you don’t, they may feel like they have to take care of you because you’re not managing grief in a way that’s healthy.”
It’s OK to cry in front of your children and show the value of expressing emotions and having shared emotions among family members. It’s OK to say things like “I’m feeling really sad because my dad died” or “Daddy is sad because he misses his mom.”
“Within our culture, we often have a sense that we have to be tough, so many parents are trying to help their kids by putting on a brave or overly cheery face,” said Ghosh Ippen. “But that can seem really odd and confusing. The child is feeling sad because it’s devastating that this person is gone, but then the parent is cheery ― which can feel eerie and weird.”
Ultimately, it’s about conveying the idea that “Mom is sad, and Mom is also strong,” she continued. If the feelings of grief become overwhelming, parents should seek help from other sources because it’s not their child’s role to help them.
“It’s important for little kids to believe that grown-ups are bigger, wiser and stronger,” said Ghosh Ippen. “We are not going to fall apart, and if we are going to fall apart, other grown-ups are going to help us.”
A “vampire burial” unearthed at a Roman site in Italy is evidence of ancient funeral practices to stop corpses rising from the dead, according to archaeologists.
The body of a 10-year-old child was buried ritualistically with a stone in its mouth, possibly out of fear it would return to spread disease to its community.
Known locally as the “Vampire of Lugnano”, evidence collected from the bones suggest the child was infected with malaria at the time it died.
“I’ve never seen anything like it. It’s extremely eerie and weird,” said Professor David Soren, an archaeologist at the University of Arizona who has run excavations in the region for over three decades.
The remains are the latest unusual discovery to emerge from the Cemetery of Children, a site containing dozens of children’s bodies and evidence of witchcraft including toad bones, raven talons and bronze cauldrons.
Dated to a time in the fifth century when a deadly malaria outbreak swept across central Italy, archaeologists thought the cemetery had been set aside specifically for the babies and young children who would have been most vulnerable to the disease.
The “vampire” skeleton, which is of unknown sex, is the oldest child to be identified so far at the site.
It was one of five new burials discovered there over the summer, and was found placed underneath a makeshift tomb constructed from roof tiles.
“Knowing that two large roof tiles were used for this burial, I was expecting something unique to be found inside, perhaps a ‘double-inhumation’ – not uncommon for this cemetery – where a single burial contains two individuals,” said David Pickel, a PhD student a Stanford who directed the excavation.
“After removing the roof tiles, however, it became immediately clear to us that we were dealing with an older individual.”
The child’s open jaws and tooth marks on the surface of the stone were evidence that it had been placed in the mouth intentionally.
Similar burials have been documented from Venice to Northamptonshire, and along with dismembering bodies and forcing stakes through the heart are thought to be methods of preventing these “vampires” from returning to haunt the living.
“This is a very unusual mortuary treatment that you see in various forms in different cultures, especially in the Roman world, that could indicate there was a fear that this person might come back from the dead and try to spread disease to the living,” explained bioarchaeologist Jordan Wilson, another PhD student who examined the body.
Professoer Soren added: “We know that the Romans were very much concerned with this and would even go to the extent of employing witchcraft to keep the evil – whatever is contaminating the body – from coming out.”
An abscessed tooth, which can be a side effect of malaria, provided evidence that the child had been killed in the epidemic that struck so many of the cemetery’s inhabitants.
Elsewhere at the site, a three-year-old girl had been buried with stones weighing down her arms and feet – a practice also thought to prevent corpses from returning to life.
The researchers said these practices provide a fascinating insight into the thought processes of ancient Romans and their fears about life after death.
“It’s a very human thing to have complicated feelings about the dead and wonder if that’s really the end,” said Ms Wilson.
“Anytime you can look at burials, they’re significant because they provide a window into ancient minds.”
With much of the cemetery still unexplored, the archaeologists intend to return to the site next summer to complete their excavations.
Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.
Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.
“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”
Like many parents of special needs children, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.
And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.
Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”
Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.”
Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.
Into the light
When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome was nonexistent then, Rosemary said.
Three pediatricians examined Kevin and agreed he had the condition characterized by an extra chromosome.
“They called it ‘Mongolism’ back then,” she said.
In those days, there were no prenatal tests to predict it, nor any way to prepare for it, she said.
“We didn’t expect an anomaly with our first baby, but it was meant to be,” Rosemary said.
The “new” thinking at the time was that the couple should take their newborn home, she said.
And that’s where the advice ended. Rosemary could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”
So she relied on her instincts and on training she’d received en route to becoming a pediatric nurse to get through the early years, she said.
“And we just kind of forged ahead,” she said.
The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home and care for the children.
Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.
Those terms have fallen from the lexicon, along with “Mongolism,” but what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.
“Back in 1962,” she said, “public schools had EMH but no TMH.”
The Ryans were living in Jacksonville, Ill., then and Rosemary and another mom decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.
Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.
Changing laws, changing attitudes
While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.
Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest.
SPEED, Tom said, “was the creme de la creme” and Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.
The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.
“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.
Kevin continued attending workshop at Happy Day and living with his parents until 1995.
Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.
Approximately 6,000 babies with the condition are born each year in the United States, Smarto said. That translates to 1 of every 730 live births, a number that seems to be on the rise, she said.
“When my daughter was born 24 years ago, the number was 1 in 1,200,” she said.
“Eighty-five percent of (these) children are born to moms 35 years old and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are older.”
While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. Not everyone with Down syndrome is afflicted with premature aging, Smarto said, but there does seem to be a precursor to that and Alzheimer’s disease.
“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.
The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues.
But, she added, it’s the same concern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.
If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home. “Our goal is to have our individuals either live independently or with a family member,” she said.
Smarto said most of NADS referrals come from the south suburbs.
“We don’t really know why the occurrence of Down syndrome is a little more prevalent there. (Advocate) Christ delivers about 4,000 babies a year and we get a lot of referrals from there. But it’s also a higher level hospital that sees patients who need special care. And they have a special care nursery,” Smarto said.
“But it is interesting the statistics (when compared) to (Northwestern Medicine’s) Prentice (Women’s Hospital in Chicago), which delivers 10,000 babies a year and the commonality is not as much,” she said.
Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, moms and dads who’ve helped usher in change by volunteering, serving on boards and doing the work. Many of the improvements in the special needs community, she said, is credited to parental advocacy.
In the early 1990s, a group out of Galesburg came to Happy Day, now called New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled.
It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.
The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.
But the city of Chicago Heights fought the idea and became “the test case for the nation,” she said.
“Chicago Heights took on the federal government,” she said. “Who do you think won?”
The battle introduced many to the acronym NIMBY (Not in My Backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryan’s home and a picture of Kevin ended up on “Nightline,” Rosemary said.
The city lost and had to pay the agency and the prospective residents, she said.
“Kevin got his check for $1,000 and we took him to Hawaii,” Rosemary said.
In 1992, the Adult Down Syndrome Clinic opened in Park Ridge. Run by NADS, the facility introduced the Ryans to Dr. Brian Chicoine, and what Rosemary calls “a world of support.”
Rosemary calls Chicoine’s book, “The Guide to Good Health for Teens & Adults With Down Syndrome,” the “Dr. Spock for parents of kids with Downs.”
Kevin continues to see Chicoine — these days for premature aging symptoms. His hearing is declining, he’s having trouble with his teeth, he walks with a cane, Rosemary said.
In 2012, fearing their son might encounter early aging issues down the line, the Ryans moved Kevin out of the group home and into Good Shepherd Manor in Momence.
“We got to thinking, if he was left in a group home environment and his physical or mental health declined, their only option is to put him in a (Medicaid) nursing home,” Rosemary said. “We didn’t want that.”
Good Shepherd Manor, Tom said, is the closest thing to a forever home. It serves 125 adults, many of them aged.
“They’re committed to lifetime care, no matter what happens,” Rosemary said. “If he gets dementia, if hospice is needed, they’ll take care of it.”
Now, Rosemary said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here (at Smith Crossing), and so does he there,” she said.
The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling living 1,000 miles away, so, Rosemary said, “If Kevin outlives us, we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”
Raising Kevin has always been about choosing the best path for him, Rosemary said.
Special needs can mean special, or additional, considerations, she said, but the condition can also bring a special kind of joy.
Their son has had many positive life experiences, including participating in Special Olympics, attending Prairie State College, serving as a church usher and holding several jobs in the community.
“He’s truly been a joy,” Rosemary said. “But it is hard watching him age. You almost forget you’re a senior citizen because you’re taking care of a senior citizen.”
Kevin, she said, “is still funny. He’s still a character. He still steals the limelight at family get-togethers.”
And, Tom said, a quiet day is when Kevin calls only two or three times on his cell phone.
“In a way,” Tom said, “he is sort of the person who ties our family together.”
Although Dr. John Langdon Down first identified the condition marked by an extra chromosome in 1866, it wasn’t until the 1970s that “Mongolism” was renamed Down syndrome.
“Some people,” Rosemary said, “like to call it ‘up syndrome,’ because the people who have it are more up than down.”
Dealing with a death as a teenager can be extremely hard. Many teens have lost loved ones, so you aren’t alone!
1 Never be afraid to cry. Crying is good for you. It helps you let go of some of the hurt or anger you may have. You shouldn’t feel weak or silly while crying. After all this shows that you loved the person and that they were important to you.
2 Talk to someone you trust. This could be a parent or guardian, your best friend or if you are religious, a pastor or priest. Talking about the one you loved can help you remember all the good memories you have had with them.
Help yourself to remember them. Listen to their favorite songs, look at pictures, read their favorite poem, plant their favorite flower in your garden. This is a good thing as it means you still have a small part of them with you.
4 Don’t blame yourself. This is a common reaction to the death of a loved one, but remember they wouldn’t want you to blame yourself.
5 If you are religious, find comfort in the fact they have gone to a better place. Remember that they are more peaceful, and there is no more hurt or pain were they are now.
Visit their grave site. This can bring some comfort as you can take care of their grave site. If you do not like visiting a resting place it does not mean you are a bad person, they would understand that maybe you don’t want to remember them that way.
Pray. Sometimes it can sound silly but if you are religious or even if you aren’t this can bring a lot of comfort as you feel closer to the person, you can talk to them and ask them to watch over you and keep you safe.
Have some alone time. Time on your own can help you get your thoughts together. Sitting in silence for a while can be quite comforting and can help you feel better.
Remember the person how you want to. Do not let other people tell you how to remember the one you loved. Remember them however you want. Your love for them could have been different than others.
Remember that they loved you. They always will and by feeling pain this shows you also loved the person.
Say goodbye. Say it however you want. Scattering the remains in a place they loved can bring some closure, also having a service can help you say goodbye.
In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.
These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.
One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.
While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.
Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.
Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.
In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.
Make genuine room for children in discussions
The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.
But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:
Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?
To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.
Accept that children’s grief is no different to ours
They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.
They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.
Honour continuing bonds with the dead
Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.
We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.
For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.
For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.
We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.