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THE GRIEF CHILDREN EXPERIENCE FOLLOWING THE DEATH OF A LOVED ONE IS OFTEN OVERLOOKED.
There is a common misconception that children cannot process death or that they need to be protected from the realities of death and the grief that follows. The desire to protect children from this experience actually isolates them, and they become disenfranchised or overlooked grievers.
As parents facing a prenatal diagnosis of a life-limiting condition, you are navigating so many complicated and emotional experiences. It is perfectly valid and understandable if the idea of talking to your children about the diagnosis and impending loss of their baby brother or sister is overwhelming and heartbreaking. There are no perfect guidelines to follow when talking to your children about the diagnosis and helping them navigate their grief. As their parents, you know your children best. Only you know what they are capable of handling, understanding, processing, and coping with. However, be sure not to underestimate your children’s abilities to understand and navigate this experience well with your support.
You may be wondering how to even begin the process of telling your children about the diagnosis affecting their baby brother or sister. Know that there is no perfect set of words when it comes to this experience. What your children need is no different than what you and your significant other need from your doctors: empathy, clear and plain language, and space to process and ask questions. Carefully consider the words you choose, and avoid clichés, euphemisms, and unclear phrases like “born sleeping,” “the baby is going to a better place,” or “the baby will pass away” because these abstract statements only cause more confusion for children.
Discern whether your children- based on ages, developmental stages, and reasoning- would be best told together or separately. Think through how your children have handled hard or sad news in the past. What helps them process? Are there any comfort items or a familiar place that would help them feel safe and protected? You are the foundation for how your child will understand, perceive, and process death and grief. Be honest. Be sensitive. Consider who your children are and what they each need individually.
As with an adult, a child’s grief is a highly individualized experience. No two children- not even siblings- will process and handle the diagnosis and loss the same. It is important that you allow each of your children to grieve how they need to, with support, on their own timeline. Grief in children varies tremendously based on personality and temperament, age, understanding, connection to their brother or sister, and the reactions of the adults around them. Be aware of the fact that their grief will likely not look like your or your significant other’s grief. Children process and perceive the world around them differently than adults, and sometimes their responses to grief can make it seem as though they are not grieving at all.
So, be mindful of who your children are and the developmental stages each child is in. Seek professional guidance to help them cope and process in age-appropriate ways as needed throughout the carrying-to-term process. Though you, as parents, are the biggest advocates for your children’s grief, it is okay if you do not feel fully capable of navigating their grief while navigating your own. Seeking the support of professionals and organizations specifically trained to help children process and experience grief is healthy, loving, and supportive.
Just like with adults, children experience grief at each step of the way. Throughout the carrying-to-term process, the greatest gift you can give to your grieving children is to simply acknowledge and support their grief. To help you do this well, we have created the ALLOW model. ALLOW stands for advocate, listen, learn, observe, and welcome.
“ALLOW stands for advocate, listen, learn, observe, and welcome.”
ADVOCATE
Parents are the greatest advocates in their children’s lives. Parents, you advocate for your children every day as you raise them to function in the world around them. You teach them to find their voice and speak up for themselves. As advocates, it is important to ensure that you are advocating for all aspects of who your child is and how they experience the difficult realities of this world. Death and grief are just that: difficult realities of this world. In some way or another, we are all affected by death, and we all experience grief. Children are not exempt, as much as we might wish they were.
We, unfortunately, live in a society that is death and grief averse. As a result, the topics of death and the realities of grief are often taboo, and this is particularly true when it comes to children. Again, children are some of the most disenfranchised grievers because their grief is so often unrecognized or ignored. It is easy to assume that children are less perceptive or capable of processing hard things, but the reality is that we can learn a lot from children about the concept of death, the experience of loss, and the grief that follows.
Children do not navigate emotions the same way adults do. Children are more inclined to just feel their feelings as they happen, without judgment, analysis, or self-criticism. Children are less likely to hide the realities of what is happening in their world. They speak their truth and reality openly and honestly. Anyone who is a parent has experienced their child saying something they would rather their child did not say, despite the inherent truth of the statement.
Children are naturally present-minded. They focus more on the here and now, rather than the past or the future, so they tend to balance grief and their present well. They laugh when something is funny without worrying about the implications it has on their grief or their love for the one who died. Children process through creative outlets, and they are not afraid to ask questions about things they do not know or understand. As a result, children integrate their grief easier and quicker than adults.
“As advocates, it is important to ensure that you are advocating for all aspects of who your child is and how they experience the difficult realities of this world. Death and grief are just that: difficult realities of this world. In some way or another, we are all affected by death, and we all experience grief. Children are not exempt, as much as we might wish they were.”
Fundamentally, children have a lot to teach us about the grieving process, self-care, grief integration, and resiliency. So, advocate for your child’s right to grieve and their needs as they arise throughout the carrying-to-term process. You can advocate for your child’s grief through your support, permission, assurance, communication, demonstration, and consistency.
Support is a key component for grief integration. When someone feels supported and heard in their grief, they are less likely to experience complicated grief- a persistent grief that does not lessen and inhibits a person’s ability to function and move forward. This is true for children, too. Support your children by always being honest and providing them with age-appropriate and clear information. Help your children process and cope with their experience and their emotions by providing opportunities for art, writing, play, and even professional support like specialized counseling. There are licensed professional counselors, clinical social workers, and child life specialists trained to navigate and support children in grief. Utilize these resources.
Permission is a powerful thing, especially for children. They may not feel as though they can express their grief, feelings, or experiences because no one has asked. Ask questions, open the lines of communication, and hold space for their emotions and experiences.
Assurance is important for children because they need to be reminded and assured that they are safe and that the death of their brother or sister does not mean that anyone else in their family will die as a result. Assure your child that they carry no guilt for what has happened. They are in no way at fault, and this experience is completely out of their control, even if they did not want another sibling.
Communication– open, honest, and clear communication- is key for children. Use age-appropriate language and give them information about the diagnosis and what is happening to their sibling. Prepare them for the pregnancy, death, and the future after the death of their sibling. Talk to them openly about feelings and thoughts, both yours and theirs.
Demonstrate healthy grieving by practicing self-care, expressing emotions, asking questions, and seeking and accepting help. This is important because you are your children’s role model. You are how they learn to navigate grief and loss. Children are incredibly perceptive, and they are watching how their parents are reacting and processing in order to know what they should do. Children learn and imitate what is modeled for them.
Consistency provides children with a sense of security, helps them manage expectations, and teaches them to navigate their environment. Children need routine and structure, so when possible, try and maintain as much of their routine and sense of normalcy, while also giving yourself grace when you cannot. When plans have to change last minute due to the realities of carrying a life-limiting pregnancy to term such as doctors’ appointments and your own grief, communicate it clearly. Explain the reasons for the change honestly, and allow the child time to process and ask questions as needed.
Just as with your own grief, there is no timeline for a child’s grief. Children tend to grieve in short bursts, punctuated by normal activities, emotions, and routines. Children are easily distracted, so be careful not to assume that your child is done grieving simply because they are still able to engage in normal play as they did before the diagnosis and loss. Just because the grief is not visible does not mean that it is not being felt and experienced.
LISTEN
Listening is the greatest form of permission you can give to your child. When you hold space for them to express their experiences and feelings, you are giving them permission to grieve freely in a safe space. When you listen to your child as they share, engage in active listening. Active listening is simply listening actively. It is fully engaging with what you are hearing and making an effort to hear more than just the words being spoken. Seek to listen for the entire message your child is or is trying to communicate.
When your child talks to you about the diagnosis, their brother or sister, the pregnancy, the death, or their grief, listen to the language they use. The words children use to communicate these experiences can tell you a lot about how they are processing, coping, and feeling about what is happening or has happened. Listen for underlying fears being communicated to you.
Do not be surprised if common ailments like a headache or a cold cause your child to become anxious about death. Depending on their age and developmental stage, children cannot always conceptualize that not all illnesses result in death. Grief in children can also manifest itself in physical symptoms like a stomach ache, sleep disturbances, regressions in skills like toilet training, and acting out.
Listen for clues that your child might be wrestling with guilt. Children often mistakenly believe that things out of their control are actually their fault. Psychologically and developmentally speaking, children are highly egocentric beings until about the age of 7, when they begin to be able to see situations from the point of view of others. Prior to that stage, children’s thoughts and communication are centered around themselves, their experiences, and their feelings. In this cognitive developmental stage, children often assume that everyone is experiencing, perceiving, and feeling exactly as they are. As a result, they may not understand that the guilt they are feeling is unique to them and wholly not theirs to carry.
Because children do not always understand that grief is highly individualized, it is incredibly important to investigate how your children are thinking, perceiving, experiencing, and feeling the effects of the diagnosis, pregnancy, loss, and grief. You can best assess your children’s understanding by actively listening to their responses when you ask questions like:
- Do you know why mommy and/or daddy are sad?
- How do you feel?
- What do you know about what is happening with mommy and your baby brother/sister?
- What do you think happened to your baby brother/sister?
- Why do you think people die?
- What happens when someone dies?
- Where do you think people go when they die?
- Do you know what a funeral is and what happens at a funeral?
- Do you have any questions?
This is in no way an exhaustive list of questions, but the point is to ask open-ended questions designed to hold space for your children to communicate their perceptions and understanding. These questions and the answers your children provide can help you know how to proceed with information, see where clarity and expectations are needed, and discover what kind of professional support might help your children process.
“Because children do not always understand that grief is highly individualized, it is incredibly important to investigate how your children are thinking, perceiving, experiencing, and feeling the effects of the diagnosis, pregnancy, loss, and grief.”
LEARN
Just as death can teach us a lot about life and living, children can teach us a lot about what we do and do not know and understand about death, the experience of loss, and grief. Children ask questions as a way to explore, navigate, and process their environments, and this carrying-to-term process is a new environment.
The inquisitive nature of children in the midst of such a hard environment can take parents to places they did not consider going to or would rather not explore. Do not be surprised if your child asks a lot of questions about what is happening and about death, some of which may be considered morbid in nature. It is not uncommon for children to go through stages in which death is a concept they focus on intensely. Fear of death, curiosity about it, what happens after, and attempts to take such an abstract concept and make it concrete are normal, developmentally appropriate processes for children to go through. This focus may be heightened or happen sooner for children experiencing the personal and difficult loss of their baby brother or sister.
As a parent, you do not have to know the answer to every question or concern your children may raise throughout this process. Your children will look to you for answers because they trust you, and just like for adults, knowledge is power for children. The unknown can be scary for children because they often engage in magical thinking, a normal cognitive stage where the boundary between reality and fiction is blurred.
This kind of thinking and imagination affects a child’s perceptions of the world around them, and it changes the way they process adult concepts like the death of an infant. Children are not logical or rational in this stage of cognitive development, so it is easy for children to confuse reality with what they think and imagine in their mind. When children do not have concrete answers to abstract concepts, they tend to fill in the blanks with their imaginations. This can be incredibly stressful and anxiety-inducing for children navigating grief. So, seek to learn together, explore their questions, and find age-appropriate answers to their questions.
“Death is scary and hard to come to terms with, for both children and adults, but that does not mean adults should shy away from the topic with their children. By providing your children with a safe place to process, understand, and learn about death and grief, you are shaping how they will perceive, process, and cope with it over the course of their lives.”
You can help your children learn and understand such abstract concepts by using clear, plain language without euphemisms or confusing phrasing. Sugarcoating death through the use of words and phrases like “sleeping,” “passed away,” “resting,” “left us,” “didn’t make it,” “not with us anymore,” or referring to death as going to a “better place” can be incredibly confusing for children who have no concept of the context and permanency you are associating with those phrases. When explanations are not clear, children fill in the gaps with their imagination, associations, and perceptions.
Your children may have their own ideas or concepts of where their sibling went or will go after death. Help them process and understand by not dismissing the afterlife they imagine. Help them by talking through what they imagine, how they perceive it to be, and what it will be like for their sibling there. If they have no concept of it, and they are desperately trying to find one, help them by sharing your concept or by learning about what your faith or culture says about what happens after death. Art and play are also helpful ways for children to process, imagine, and express their feelings and concepts of death, the afterlife, and grief.
Remember that children are far more capable of handling and processing difficult concepts and experiences than we often give them credit for. Death is scary and hard to come to terms with, for both children and adults, but that does not mean adults should shy away from the topic with their children. By providing your children with a safe place to process, understand, and learn about death and grief, you are shaping how they will perceive, understand, and cope with it over the course of their lives.
OBSERVE
To observe is to take notice of something and recognize that it is significant. As a parent, you observe your children all the time. You see how they engage with their environments and the people around them, and you offer guidance and support based on what you observe in your children. The process of grief is no different. As parents, it is imperative that you observe- take notice, and recognize the significance of- your children’s grief. It is equally as important that your children be allowed to observe you and your significant other as you process, grieve, and cope.
Children are incredibly perceptive beings. They are constantly absorbing information through sight, sound, feelings, thinking, and imagining, but they are unable to fully process what they are perceiving. The worst thing we can do for grieving children is to deny the realities of what they are feeling or perceiving. If your child sees you crying, do not dismiss your own tears or attempt to hide them.
You are shaping your children’s perception of emotion in loss and grief, and you are writing the narrative they will carry for their lives. Help your children learn by being open with your own grief and emotions. Give sadness, grief, and loss accurate names and explain the forms through which they can express these feelings. Your child is already perceiving and probably experiencing them. Help them by giving them the language to accompany those big feelings, both theirs and yours.
Watch how your children are playing, communicating, and expressing emotions. Common reactions to grief and loss in children are:
- separation anxiety
- mimicking the emotions of their parents, either out of concern or as a means of distraction for the parents
- confusion
- nightmares and sleep regression
- clingy behavior or attachment issues
- regressive behaviors like bed wetting, temper tantrums, withdrawal, self-soothing or comfort measures from infancy like thumb sucking
- stranger anxiety
- searching for the deceased due to a lack of understanding of the concept of forever
- guilt or believing it was their fault (magical thinking)
- overly cautious behavior
- putting their experience in the context of cartoons, books, or stories they are familiar with
- repetitive questioning
- expressions of feelings through play rather than communicating verbally (themes of death and loss may be evident in their play or art)
- acting out in anger
- physical responses like aches, pains, and loss of appetite
- fear or increase in general anxiety
- difficulties in school or a lack of concentration
- indifference or avoidance
- short, intense bursts of grief
As you notice these behaviors and reactions, help your children by giving language to their experiences and expressions. When your child acts out in anger, communicate what you are observing. “I can see that you are frustrated, let’s talk about how you are feeling and why you might be feeling that way.” Giving children the language and opportunity to process how they are feeling is empowering, and it reminds them that you are engaged and a safe place to process.
“Children are incredibly perceptive beings. They are constantly absorbing information through sight, sound, feelings, thinking, and imagining, but they are unable to fully process what they are perceiving. The worst thing we can do for grieving children is to deny the realities of what they are feeling or perceiving.”
It is also important to remember that children are often matter-of-fact and direct. You may find that your child is very open with everyone they meet or interact with about their sibling who died. This is not rude or done for shock value. Rather, this process can feel very empowering to a child who does not have the same worries about the world’s perceptions and reactions as an adult might.
As you observe your children’s grief, you may notice behaviors and responses that concern you. When this happens, communicate openly and honestly with your children. Provide them with a safe space to process and express what they are feeling. If you find yourself feeling overwhelmed or incapable of navigating your children’s grief responses, trust your instincts, and advocate for your children by seeking the counsel of professionals trained to help children process grief.
WELCOME
When navigating a carrying to term pregnancy and the loss of an infant shortly after birth, the process and grief are a family experience. Though every member of the affected family will have their own experiences and emotions, it is important that a family lean on one another, support each other’s grief, and process as a unit. This is especially true for children. Children need to be included- welcomed- into the process and corporate grieving.
A loss of this magnitude should not be a taboo topic, as the effects of it are unavoidable. Talk with your children about their baby brother or sister. Include them, when age and developmentally appropriate, in the planning, memory making, delivery, time with the baby after birth, funeral arrangements and service, and life after loss. After the loss, carve out intentional time to share memories and photos of their brother or sister. In the same way that you wish to talk about the child you lost, your children wish to talk about their brother or sister. This process and loss happened to them, too.
As you create a legacy for the child who died, include your living children. Invite them to offer ideas and think through holiday traditions. Teach them and remind them often that it is okay to grieve and feel sad on holidays, important days, and family events. Remind them that it is okay to think of their sibling and that they can always share with you when they do. Let them see you grieve and welcome them to do the same. Normalize the expression of emotions and teach them that crying is a normal and valid part of grieving their brother or sister.
When adults try to protect children from the harsh realities of death, they only further isolate them. Children are incredibly perceptive, and they know that something has happened to make their parents sad. Do not hide your grief or avoid hard topics because children understand far more than they can fully articulate. They can handle far more than we give them credit for. The way adults model navigating, processing, and coping with death and grief shapes the way children will understand and handle death and grief throughout their entire lives.
Suffering is a part of life, and children should be prepared for it, not protected from it. So, parents, allow your children to grieve. Advocate for their grief, rights, and needs. Listen as they communicate. Learn from and with your children. Observe their grief and let them observe yours. Welcome them into the process and include them as you navigate grief as a family.
RESOURCES
We leave you with this valuable resources: Slumberkins is a company that empowers parents and caregivers to teach children social and emotional skills. They create board books, stuffed animals, and other content to help children process their own experiences and difficult life skills and concepts. In partnership with The Dougy Center: The National Center for Grieving Children and Families, Slumberkins created a board book, studded animal, affirmation cards, and a blog to help parents and children process grief and loss after the death of a loved one. To learn more or purchase items from Slumberkins Grief & Loss Collection, please click here.
Additionally, we’d like to introduce another meaningful resource, the book “Our Baby is Loved: A Story for Children Whose Parents or Loved Ones Are Expecting a Baby with a Life-Threatening Medical Condition.” This touching narrative provides support and guidance for families navigating the challenges of a life-threatening medical condition during pregnancy. You can find the book here. Carrying To Term is not affiliated with, nor do we make any commission from purchases made from the Slumberkins website or the mentioned book.