Supporting Siblings After Losing a Child to Cancer

Supporting Siblings After Losing a Child to Cancer

Jennifer Lemisch: Hi, my name is Jennifer Lemisch. I am an employee at Children's Hospital Philadelphia where I am an art therapist and licensed professional counselor on our Pediatric Advanced Care Team. We are a

consult service at the Hospital that will be consulted by family and/or medical team members at critical decision-making junctures in a patient's medical treatment. Today, we are here to discuss supporting siblings after losing a child to cancer. And we are sponsored in part by the Arms Wide Open Childhood Cancer Foundation.

I have to get used to switching the slides, my apologies. So, unfortunately, the live moderated chat feature is not working. It's down. It has been removed. You can still please ask questions, just use the email link that you see on your screen, and the live chat will not be possible, but we will be able to answer your questions that you submit via email. We're going to go right ahead and get started.

We're going to start with this quote: "Anyone old enough to love is old enough to grieve." And in our country, we have … we don't always have a great response to people dealing with a bereavement or grief. I'm going to separate out those two terms and tell you that bereavement is experiencing the death of someone and we all have done that in our lives, I'm sure.

And our grief is the response that you have to the loss. And grief is … it's really unique to each person and the lost relationship that you had with that person. And there is not … while there are resources and support and a lot of things out there to do about your grief, I'm going to use the air quotes to say there's no treatment for grief and that it is not a disorder or a diagnosis that there is a medicine for, unfortunately — I guess I want to say.

So, it is for example … to use an example that some people may have heard of, it is a post-traumatic stressful reaction, but it is not actually a disorder. Now, at times, people do develop something called "complicated grief." We are not here to go into that today, and that is grief at a disordered level. But the idea and the process of grief is not something that should be seen as something that shouldn’t happen to someone. You should grieve over a lost relationship.

OK, so we're going to talk a little bit about the process. And in the beginning, there is an initial response. It's intense and it is all encompassing and that is known more as the acute grief phase, and that is immediately usually following the death of someone. And what we are looking for, for people to have is a more integrated response to the grief.

So, it is an adaptive response to the loss. It appears in people, sometimes after healing. And say “healing” because how do we heal? And we're here today to talk about how to support siblings in their healing. I would also like to say that supporting other children who in their healing will in turn, I have found, support parents and grandparents and other caregivers as well, although today we are focusing on siblings.

The mourning is the process that people will go through to go from this acute grief stage to the integrated stage. And basically, it helps … once you are more integrated, or when your grief has been more integrated into your life, it's like you feel a little more reactivated into the life that you're leading. It sounds like a lot of words but we're going to break it down more.

So, the tasks of people who are grieving, and these are not necessarily specific to siblings, but I think they really speak to what everyone goes through after they've experienced a loss. And while again, we are focusing on the siblings today, many things are universal no matter the age in grief.

So, to understand and to begin to make sense of what has happened, and to express in constructive ways the reactions to the loss, to learn to go on living and loving — that one's very important — and to commemorate the life that was lived, also so very important. I believe they're all important, but I really feel like the process of integrating the grief really focuses on the last two.

So, for children, learning to understand the finality of it, that's a very big deal and also learning how to envision your life in a new way that still has purpose and meaning. Many people feel after a child dies, there's nothing else worth living for and it is a huge loss. We are not used to losing children in our society. We're used to burying our elders, and so we hear lots of comments, "Life has no purpose, life has no meaning," and that is really a struggle for people to try to make sense of why that happened.

When people are grieving, they are going to go back and forth between confronting the pain and pushing it away, and it'll happen in spurts. You might do OK for a period of time and then something will happen and it will be a struggle again. And it's … the whole process, you're kind of dealing with the back and forth — you're dealing with the loss and then you feel a little bit restored. And then something else is going to come up, and it happens in both times. There might be some things that you really are more able to feel restored about and then other things you're dealing with the loss more.

Again, not a diagnosis or a disorder that you are going to get over. It's a process and it will be with you forever. Although I do think the idea that the loss will be with you forever is also healing because people, siblings have told me a lot, "I'm worried about forgetting my brother and sister." Well, you're not going to forget them. You're just going to remember them in different ways.

And so that raw pain that people feel during the acute grief stage, that is going to subside hopefully. We want that too so that you can have a more integrated grief reaction and really again, go on living and loving and be able to commemorate the loss that happened.

OK, so, and to go a little bit back to society and grief. We’re more … we sort of fear our grief in society. We sometimes get afraid of all the energy that is activated, and that's why we push away the feelings, and again, that's OK. You have to get up in the morning. You have to go back to work. You have to send the other children to school.

The children have to go to school. They have their friends’ birthday party. They have activities to do. And so that's why the whole process happens while you're actually also going on with real life and the back and forth and the push and the shove. And not really to use this saying, but that two steps forward and one step back feels like it happens a lot.

Now, we're going to start to focus more on the children. So, there's a lot of major factors that will influence a child's response to loss and death. Firstly, their chronological and developmental age, also the availability of the family, social and community support that everyone has, any previous experiences with death and/or loss. Sometimes, it's not just loss of people. Many children have experienced loss of pets, and that often, I've found in my work with families, children are often trying to equate it with that, and many terms get confused with that because we say things like, “We're putting our dog to sleep,” and children then might be afraid to go to sleep. And so we really have to be aware of previous experiences with death and not just again, of people who have died.

Even also experiences of death they may have seen on the news. We all know that watching the news has lots of loss and death in it and terms that children may not fully understand. And really, the behavior attitudes and responsiveness of the parent and caregivers in the child's world. So this is sort of where you're … you as parents, if you're parents watching this, and all the supports that you have in your extended family and community are the most important.

Some really common things I hear from children a lot are, "Will this happen to me?" Even though they know that the disease that their sibling had is not something that they can necessarily get, they still wonder if it will happen to me. There's a lot of questions about who might die next; this person's sick or this person went to the hospital or even a doctor's appointment, and often they might feel that they're being punished for thinking something.

Now, when you’ve had a child being treated for cancer, we know that a lot of times, the siblings have a lot of mixed feelings about maybe extra attention on the child who's sick, and so they might feel a little negative towards their brother or sister sometimes. And then they can feel like they helped cause it, and so it's really our goal as professionals and also as family members to really support brothers and sisters in understanding why this happened.

There are lots of pictures of artwork in this presentation in that as an art therapist, it's my sort of go-to way to work with patients and families and siblings. So, some of the examples are going to show artwork, but there's also … I also have plenty of things in here on how children can be supported. Everything does not have an art activity.

But I put these slides in, or these photos in, to share more about what siblings often say to me in my work with them. And in my role on the Palliative Care Team, I often will work with brothers and sisters after a child has died, and then by virtue of working with the child who lives in their parents' home, I'm also following up with the families at the end of home visits and talking to them about how to best continue to support the child.

So, some of the things we're talking about today, I've taken from experiences in working with children in their homes.

So, we started to talk a little bit about the sibling relationship. We know sibling relationships in general have the — we'll call it the love-hate relationship. So, when there have been negative feelings at times about a sibling who maybe got extra attention from being in the hospital, there's … all that might come flooding back, and after the child dies and so it's really important for parents to — and professionals — to explain to the children about the facts of what happened … or the facts versus sort of metaphorically speaking about it.

And also including the children — I can't advocate for this more. So, if you see the top left picture on there, it's a treasure or a memory box. It's a task that I often do with siblings where they get to create a box, a container, to keep special things in that remind them of their brother or sister that died. And on the top of that box, you can see the surviving sister writing about all the people in the family that she loves; it has her sister first, but it has all those adults for balance. I mean so much so that it trails off at the top of the picture into the bottom of the box, and I think it just speaks to the fact that the family really surrounded this child with love to tell … so she knew where she could go to when she needed to talk about things.

Sometimes, I've had siblings say comments to me that say something like, "I see mommy go into my brother's room every day and cry, but then when she comes out, she's not crying and so I pretend that I didn't see her go in." Or, "I'm not allowed to go in there anymore, but I know that mommy and daddy go in there," talking about their brother’s or sister's bedroom.

Sometimes siblings talk about things that parents used to do with them, and more immediately after a death, they may not do all those activities with them, and they think they're trying to really spend time with the other brothers and sisters who are still alive. It really goes a long way even if it's just a few minutes a day to really focus the attention on them. You also need time to grieve yourselves as parents, but again, I think doing things with the surviving children also really helps your own grieving process.

Children often think they can't talk to their parents about how they're feeling because it makes the parents too sad and or makes them cry. And sometimes I hear from parents that they feel like they can't cry in front of their children because you can't cry in front of your children. Well, something really sad happened and it's OK to cry if you're sad, and I wish that I could wear a sign around my neck that says that. But again, this is another thing I feel like in our society that we don't really teach people to experience their emotions and it's something sad that happened and it's OK to show how you're feeling.

And it's really important because then they know that the fact that they want to be sad or angry or disappointed or all those feelings that come up over a loss, then they know that others feel the same way that they do.

The mosaic tiles that are the two pictures on the right, the top one was created by a sibling before his sister died and it shows an activity that he liked to do, and the behind it … while he wasn't eminently angry, it really — after he was done, he said, "Wow, it really looks like fire and flame," and he sort of attributed to how he was feeling. There was a lot of unknown going on, every night was a different night with his sister not feeling really good. And then the next mosaic tile that he created was after his sister died and that is a beach at sunset, which was one of her favorite places to go.

And I just think the … it really shows how he was supported by his family because it just looks a lot … it looks so much more peaceful and not really even interpreting the artwork, you can look at it and see the orange and black flames just look like there's a lot of emotion and feeling. And afterwards, while there's a lot of emotion and feeling, it looks very calm and peaceful.

So, learning from the parents and guardians that I work with, I really like to say that every family that I've worked with in my 10 years on this team, I learned something new from everyone, and there's not always a right or wrong answer. But a lot of things that I hear from parents and guardians are that their questions are so real. They almost can really be biting, so to speak, and they're difficult. And parents are afraid to answer with the wrong thing.

Again, losing a child is so unnatural. It's not the way we learn what happens in this world. And so, how do you explain that without sending your children to the self-help section that talks about why bad things happen to good people, because I feel like I've quoted that title a lot.

It's just … people don't always discuss it, like the loss of a child, it's out of the normal for grief in our world. And so, because it's not right or it shouldn’t be happening, it's often not discussed. And I think that even saying that to a child, you're right, it shouldn’t have happened. We always want to bury our grandparents and our great grandparents, and there's something wrong with this, and you're not the only person who feels that way. And often, just acknowledging that what they're feeling other people are feeling is really helpful.

I have the lifetime of grieving on there just to remind everyone that it doesn't go away. It just changes its shape and form and it … I mean it decreases in its intensity, but the same way that we always mourn the loss of older people in society, it's the same way we're going to mourn the loss of a child. And for a long time, it's going to be with you.

And then the boundaries and attachment I have on there because people, parents hear a lot, and caregivers, they'll … and they might say to us, "What's the right way to do something?" Well, I'm going to tell families, there's a lot of different ways to get to feeling comfortable about talking about something, but if you were not a family that did a group hug every night after dinner, then you maybe don't need to start doing that. You want to do what works for your family.

So, if you were not a family that talked a lot but maybe you were a family that did a lot of activities, then maybe that's the way that's going to help your family and the other children in the family bounce back. You really need to find what is comfortable and works for your family.

So, these cards were taken … I added this in and it's from the website griefwatch.com, and there are also … it's listed again at the end of this presentation when I have a lot of other resources. But they are a little bit, for lack of a better word, snarky on these cards, and they are available to be ordered. But what I like is what they say. I like when families are able to tell people, "This is helping me," "This isn't helping me."

When I go visit families and meet them or meet siblings, I always say to them, "I want to support you in a way that works for you." So, if talking about your brother or sister for the first half of the time that you spend with me, say it's an hour long for a half an hour, is what really helps and then not talking about them at all for the next half an hour, that's the way we'll do it.

And so, I think that families and parents and children alike need to learn to tell people what is helpful. And there are also lots of people who come in when you're grieving and say like, "Today, I'm going to make you smile." And it's really great to smile when you're grieving. However, that's not going to fix you forever and you're allowed to be sad. I really like that the card says, "Let me be sad. Listen to me."

Don't minimize the problem because you're not going to take away the sadness. People just need to learn how to cope within it. And I love also that it says, "Mention my loved one's name," because really, you want to keep talking about them. You want to keep them alive in your memory. You want to have the brothers and sisters remember their times with them as well, and I think that that's really important.

This slide I put in, this is not something that I did with the sibling. This is a sibling that I worked with, and she was 6 years old when she created this. This is on a … I want to say an Etch-a-Sketch, but I'm aging myself. It's on a Magna-Doodle. And the parents really struggled with how much to include a 6-year-old in funeral and all the events. You know, parents get to go before the funeral service back behind the curtains and see the body and, "Do we include her in that, or do we not?"

We have a lot of resources at the Hospital and one is a booklet that we often give parents called, "What Will I Tell the Children?" And this mom sent me this email with this photograph attached, and told me that she kind of was using the "What Will I Tell the Children?" like her own personal Bible, and really included the big sister in all the planning for what they were going to do at the funeral.

And if you … and so this child — this big sister came home from the funeral and created this picture on her Magna-Doodle and then brought it to her parents and said, "Look, here we all are saying goodbye," and I'm leaving out names of course, and when she described the picture to her parents, she said, "We're mommy and me and my sister we’re wearing the crowns and we're all smiling," because it's hard to tell in this picture, but she depicted the fact that she and her sister that they buried traded their most prized-stuffed animals, and the big sister let her little sister be buried with the prized-stuffed animal and she then carried around the one that the baby sister carried around.

And the mom said … and I remember in this email, she said, "I would not have believed how well this could have worked out if she didn't come to me with this picture and I'm emailing this to you right now, and we're about to sit down to dinner and we have a high chair at the table now that the stuffed animal that did belong to the baby sister sits at the table with us."

And she was worried about how much she was carrying it around and she said, "Do I draw the line at bringing it to school?" And I thought maybe not bringing it to school is a good idea because if it gets lost, that might be an even bigger, more upsetting than we could — we couldn't recreate that stuffed animal.

So, but again, I think that erring on the side of trying to include siblings in discussions in how you're truly feeling can really only help them.

We're going to spend a little time just talking about children's understanding of death so that it can hopefully help supporting siblings after it happens. So, birth to 2 years, obviously there's really not a cognitive understanding of death. They are … and they don't have any language yet to express their emotions. They just use their behavior to show how they feel.

So, the really most important things are the bottom two bullets, where you know, they might react to caregiver distress. So, they might notice that you're sad. I don't know that they're going to necessarily respond with tears, but they're going to notice sadness by caregivers. Again, I think it's OK. They're not necessarily going to remember sadness in a caregiver's face. But really the … trying to avoid lengthy separations from their significant others and trying to maintain some consistency, and I know that's often easier said than done.

People have to go back to work, people are busy. But as long as there's consistent caregivers and some … we all know that little babies will sleep anywhere, so you can take them with you, or we try to have them sleep anywhere. And so, I think that the routine and the consistency is the most important part for birth to 2 years. And they learn from their environment. We know that babies just are taking everything in and learning from that.  

When a child is more in preschool, they might use the word death. They really probably don't understand it as a permanent thing, and that can be very distressing for parents and caregivers because they might ask repeatedly, when is so and so coming back, and then you explain what happened and they really don't quite get it. And that's very developmentally appropriate and it's expected. It's really tough on parents when they ask — they — you know, I talked a lot about children needing repetition for mastery over a situation, and the same holds true for understanding the concept of death.

And it's really, really tough and they might … you might start explaining something to them and they go off and play with their toys and then they come back and ask you again and they switch so quickly, it's really tough. It can be really tough, and you often have to repeat yourself a lot. And they, again, they can really shock adults with their bluntness in discussing death because they might not even have the right words for it also.

I highly recommend that you explain … just try to keep explaining it to kids and try to be very literal. So, I know that we're used to saying things like, "So and so passed away," but that's hard for a child to understand what that mean. And even things like, "They went to sleep and they didn't wake up again," because that can also cause fear of children falling asleep. So, I think trying to be literal and explaining how their body didn't work anymore. If you can use physical terms, that is sometimes able to be understood.

And again though, you are going to need to re-explain it. And it's OK to say to them that talking about it makes mommy and daddy — I'm going back to my soapbox of, it's OK to explain that you're sad too, and that you're sad when you're talking about it but it's OK and that you can keep doing it. Look, I'm even choking up saying it to you right now.

They often do things like even … another thing that happens in preschool is even though you've explained it to them and they think they understand death, then they might come out with a statement about, "When so and so grows up," or "When they come back," so again, it's again needing that repetition. And we cannot forget that a lot of this magical thinking can come from all the … we see movies and people come back from death in a lot in movies, and it's really hard to understand what's a cartoon is not a reality.

So for school age, they are beginning to understand the idea of death. They don't really think it happens to them. And we also may find that they might not completely understand how they feel, but they might talk about "my tummy feels funny," and that could be more like butterflies or anxiety versus an actual stomach virus or something.

And school-aged children really need, in fact, just like preschool, they need this balance of talking about it and playing. And so there's going to be a lot of, "I want to talk about this, but I want to go ride my bike out in the street," and it's often really hard for parents and caregivers to switch so quickly, but that's what a child needs. And it's hard for the parent or the caregiver to bounce back after that. Their kids outside, "Come out and ride your bike with me right now," but that is the way that children really cope well with their feelings.

And again, there are still some … they still have some literal thinking, and so for example, a 6-year-old sibling once said, "You know, I don't understand. People keep saying that so and so's with God but I saw him at the funeral home." And so they … and so explaining that, that is the body that you saw and whatever. You can use religious terms. A lot of people talk about heaven, but some people don't talk about heaven. It's whatever your family's beliefs are.

Some people talk more that the body doesn't work and the soul lives on and that kind of leaves … if you don't really want to go into religion. And again, it's … you can answer their questions without always — the difficult questions, they don't always really need the answers to, and saying something like, "It must be really difficult to miss your brother or sister and not be able to see her anymore," might get them talking more about what they're thinking or feeling without actually answering one of those really tough questions like, "I don't understand, why did God take so and so," or, "Why couldn't they find a medicine that fixed my brother or sister when I saw this other patient who got all better?"

And really being available and validating their feelings. Really saying, "We're all asking these questions and we wish that medicine worked on your — on so and so more than you know."

The older school-aged children, they're really understanding it more and they might be more interested in the details of the dying and also the cultural and religious traditions. They're getting bigger and they're wanting to do more of what people are supposed to be doing. And they can often identify that cause and effect relationship in that, "Oh, you know, they couldn’t give any more medicine because it wasn't working, so that's why it happened."

But they really need help from adults to explore their emotions and have a place to put all these feelings. They need the support from adults, but at this age, peers are also becoming important and they need their peers for a source of comfort and support as well. You may find that children can act out in their play some funerals or deaths. You may see it in artwork, they might write stories about it, and that's how they get their feelings out. That's how they're going to be able to share it. So again, it can be unnerving to be in the other room and listening to children practice having a funeral. Or, if they spent a lot of time at the hospital and were … learned more about things that happened at the hospital, maybe acting out a code, so to speak. But again, that's the way children really process their feelings at this age.

So, they might allow you to watch it, but they may not be able to discuss it with you after. So again, it can … making, validating what they're experiencing is really a good way to deal with this age.

Now, we're going to talk about the teens. And again, their cognitive skills are more advanced. They really have the ability for abstract thought, and so they're … the teen years are difficult as a whole anyway, and they might need to spend a lot of time discussing stuff. There will be a lot of existential questions. There's too, sort of competing thoughts on here. It says they might view religious beliefs as comforting, and then the next bullet says they could reject adult rituals, which are sometimes religious rituals.

So, it's not easy to figure … I mean you'll have to figure out teens in your own home sort of how they're dealing with it. Are they rejecting … or do they feel that your religious institution is a source of comfort because that might be somewhere they can go and be in a teen group or meet with a religious figure, or is it something that a lot of children and adults get angry at God when something like this happens and question their beliefs. So then maybe encouraging more involvement in your religious institution might not be the best way to do right at first until they're feeling better about this stuff.

One thing that's challenging in teens is that they might engage in their own high-risk behaviors. "My brother or sister died and now I'm really going to test the fates too." And so, that's why seeking out support for teens is really important.

Now, we're going to answer some questions. I'm going to take a moment to read them. I'm sorry, I have to put in my glasses for this handwriting.

[Silence]

OK. Some of these questions we're going to also address later on in the slides, but I'm still going to answer them now.

So, the first question asks if I recommend celebrating the anniversary of my child's death, and they're worried about how painful that might be for the adult but maybe it's important to the sister. And this is not the first time that … let me take these off, I'm sorry — the first time that I have been asked that question, and I think it really goes back to what is comfortable for the family, and that there is not a right or wrong answer. Many families struggle with, "Do we celebrate the child who died's birthday and or the anniversary of their death?" And I, most recently a mom had called on the phone and said, "We decided that we all want to go out to so and so's favorite restaurant on her birthday, that's where she always chose, and is that really morbid that we're going there?"

And I think it's not because the family took a vote and they all decided to go. So if that is something that is a source of comfort for everyone involved, then I think you should do it. I'm concerned that it says that it's going to be really painful for the parent to celebrate the anniversary of the child's death, and so maybe then, if it's going to be too painful for the parent … for you as the parent to participate in, then maybe it's something you could say to the sister … I don't know the sister's age, so — but maybe it's something that you could ask for help from another adult to support with if you think it's going to be too much for you.

And maybe the first anniversary is too much, but maybe the second or the third or ongoing ones are OK. But this is a really important question because it goes back to the part about how once people start to integrate the grief and are doing a little better, quote unquote, I'm going to say, then things are going to happen the first Christmas, the first school dance that you see friends going to that, that child doesn't get to go to.

So, there's going to be many significant milestones that are going to become a source of struggle for siblings and parents. And really trying to figure out which ones are going to be comfortable for you to acknowledge and celebrate, I think is the way to go. I wish … I mean I don't know that I'd wish there was a right or wrong answer, but if it's too painful for you to participate in, I think you might want to — but you think it's important for the sister, then you might want to find someone who can help you find a way for the sister to celebrate the anniversary of the child's death.

The next question says — I'll just move it far away, "My son was only a baby when his brother died and too young to remember him. When and how should I tell him about what happened?" Again, there's not a right or wrong answer for what age you do it. I potentially would recommend waiting until they could really understand. So, do you tell a preschooler that they had a baby brother or sister that died?  Maybe not, because you maybe repeating it so, so much that they wouldn't understand it.

But maybe in school age, especially when they're old enough to start really listening to other adults talking. You know, sometimes parents say, this is a little bit of an aside, but I'll get to my point, parents will say, "Oh," say to someone, "How many children do you have?" And a parent who's lost a child doesn't know, "Do I say two?  There's only one still alive. Do I say one?" But in talking about that with someone, that child could overhear it. So, when they're old enough to hear other people talking about a brother or sister that died as a baby, I think that it would be important for them to know that … to know about it and that they did have another brother or sister.

And then the last question, "How do you know when acting out or writing stories is just coping versus something to be concerned about?" I think expressing your feelings is always a good thing because if all that stuff is being kept bottled inside, it's going to be more harmful to the child who is just keeping it inside instead of expressing it.

I think when it's more of a concern is if they start saying things or writing things or acting out things that they could potentially be a danger to themselves or others. You want to keep children safe and you want them to feel like they can share their feelings, but not then engage in something that could be dangerous for themselves.

For example, if they're writing about their sister dying but then also saying, "I want to die, too," that really should be explored. That doesn't mean that they really want to do something about it, but it could mean that they're very sad and they could be repeating what they've heard adults say because we've often said — adults often — we often say things and we don't realize that kids are overhearing it, and you may not really mean that or we could in our own sadness. But again, I think it's something that could be explored, and does that mean that they need to go to a psychiatrist right away?  Not necessarily.

I think really, first-line resources could be their school counselor, if they're in school, or the principal, or if your child … if the child that died had … if you had hospice services in your home, they're a great resource. We're going to get to some of these things and resources. The pediatrician is also a great place to go as well, lots of first places to start. Or getting them assessed if you think that it is at the point where it's something to be really concerned about. Also, utilizing the mental health services on your insurance is also a way to go.

Now, we're going to move on. We're going to get more resources and everything. So, I'm going to start with now, some communication strategies, and we've gone into some of these a little bit just because this kind of work is very grey. So, we have gone back and forth on some stuff. But again, when you're talking with siblings or other children, you really want to know — sometimes the question they're asking is not what they really want the answer to. So, you should clarify what they're asking, especially those tough, difficult questions that are throwing you for a loop and you're not prepared to answer.

And again, back to the honesty part, the unknown is, I really believe, is really more anxiety. I wrote “usually,” but I would just like to say that it is more anxiety provoking that the reality. And if you're really covering over things, children realize that more and they might think it's actually bigger than it is. And again, a lot of people who are potentially watching this now, I'm assuming the funeral has already occurred, but just using that as an example. The idea … you know, parents often say, "What if these young siblings don't act the way they're supposed to at the funeral?"

Well, they're the brother and sister of the child who died. They can act however they want, in my opinion, and if any people attending the funeral have a problem with it, then they really shouldn't be there. Now, does that mean you should let them run around willy-nilly?  No, I'm sure you would have people in place to support you on the day of the funeral and … but, you know, I think that keeping them away from something like a funeral or a memorial services is just going to build up in their mind that it's a lot different than it actually is, the way that we grieve or the way that we say goodbye to children. I'm using the funeral as an example, again, even though I realize that it's already occurred.

So again, I would really use correct words to explain the death. Use literal terms versus concepts. So, I know that we have lots of words that we say aside from, "So and so died." And a lot of them are so beautiful, like who does not want to hear that, "So and so earned their angel wings"? It's a lovely concept, but it's not something that a child can understand who is 6 years old. So, I think explaining how the body was not able to get all better from the medicine, and you know, things that are very concrete, they will understand.

And as they get bigger, they can learn all of our other terms that we use, but it can be very confusing to people. So, you really want to, again — sometimes these fears and misconceptions happen from when they hear adults speaking, and speaking around them, or don't realize that they're listening. So, that's why it's really important to reassure children and give them lots of opportunities for play and for ongoing talks. So maybe there's not time to talk about this right now, but let's make a time when we can talk. And again, you really don't have to have all the answers. There's often not a lot of answers, but reflective listening skills are very important. So, bouncing that back, so saying, "I'm wondering why you're asking that today?"

And again, the community can be really an important source of support for families at this time. And it doesn't have to be grief and bereavement specific places, although there's plenty of wonderful places in the community that do have that. But pre-existing important relationships, I think are important to keep up. So, you know, the nanny that maybe isn't coming as much but maybe the child really talks to that nanny.

Or again, your school counselor, and my experience has been that if you have had a child under cancer treatment, your school counselor has already been involved with the siblings because you need to check how the patient and the siblings are coping with the treatment. So, keep them in the loop about how they can help support your family as well.

Now, I'm going to get into some actual things that we can do, and not just me, but families can do this. It's wonderful to have someone, a professional, to do it alongside with you if you're able to, but these are also … there's a lot of resources available for families to do what is most comfortable to them. So, reading books, and I have … on another slide, I have a list of a lot of good children's books, and even though some of them are very preschool and early childhood oriented, I like them for big kids too.

There's a lot of workbooks. I also have some of them listed on later pages. Scrapbooks — families take a ton of pictures, so why not take the time to look at all those pictures on your iPad and your phones and on the computer that you’ve never printed, print some out and have a family scrapbook day. Again, going to favorite places of the child who died — this came up in the question, doing their favorite activities together, celebrating the child's birthday, commemorating the anniversary of death.

Really reminiscing together is important. And a lot of families, I have added this bullet last, but a lot of families like to give back. They felt like they received a lot of support during the course of their child's cancer treatment, and so they like to give back. Maybe they volunteer or some families create a foundation to try to do something nice for other families. And that can become a really positive outlet for families to put energy into doing and really remembering the child who died.

The photo in here is a balloon release that I did with a family when it was the last day for our home visit, but many families do these balloon releases, or I have a later slide with lanterns as well.

So, here's some — and I'm also looking at the time — here's some books and workbooks that we like to use as resources here at the Hospital. And I am … I'm pretty sure all of them are available on Amazon. And I think that even Barnes and Noble will have sections … will have some of these in the store if you like to look through the actual pages before you purchase, and there is that aspect on Amazon where you can look in the first few pages of a book anyway.

The thing about books is — story books — books with stories, you can read them over and over again. And so, I think they're helpful. I really like the "I miss you," because it talks about ways that people say goodbye in lots of different cultures and it's very universal. "The Healing Book," and "When Someone Very Special Dies," are actually workbooks and … workbook's a good word for it — and memory books, and they can be completed in steps. You can skip pages that you don't like. You can put … you can go back to them later. You can leave them blank.

Sometimes, parents like to use them as bouncing off places or the book can be completed as a whole. If you notice on the cover of "The Healing Book," it actually is a picture frame because the child can put in a picture of the loved one that dies in there.

Then, there are other books that I didn't have the covers of that are on here that are sometimes … are books for parents to read, but help you support your children. And again, you can look … if you sort of Google that or look at it on Amazon, you can find them. But some of these are called, "The Grieving Child," and Helen Fitzgerald also wrote "The Grieving Teen."

There's a book by Katherine Donnelly called, "Recovering from the Loss of a Sibling," and that's actually could be … an adult could read it and who's lost a sibling, but it also has very helpful things in there for adults to use with siblings who lost a sibling. And there's another book, "Parenting after the Death of a Child," and that really helps the parents find ways to support their children.

This page has a lot of different tasks and activities on it. I am going to give the caveat, because these are photos taken from families that I've worked with, they are very art-based. However, on the bottom, you can see that any games and music and almost any activity can be adapted into a way for you to lead a discussion. So, if dancing and singing is what your family likes to do, then find a way to do to that, and then also talk about how people are feeling. Maybe it's … when the music stops, we all have to say our favorite memory of so and so. And then the music goes on and we dance again. You can adapt any game, really. And oftentimes when I meet with siblings who really do not feel supported by using art as an outlet, I might take a regular game and adapt it.

So, for example, Jenga can be used … you can write questions on the side of it, or you can just have questions on the side that if you successfully pull out a piece, we're going to ask a feelings question, and we’re going to try to support you that way. But some of these pictures show journal making is really important, so decorate the front and back of a journal and that way you can put any thoughts and feelings you have in there.

I love doing those with siblings because immediately before and after losing a brother or sister, granted, parents are busy and they may not always have the time to answer your questions, but encouraging them to write stuff down so they can get the support later. So it doesn't just get forgotten.

Picture frames, again if a whole scrapbook is too overwhelming for families, there can be picture frames, and there's lots of very decorative ones. The one in the bottom right slide is actually a little star with a wire. And so, families often do those and then use them to decorate their house for either a Christmas tree or hanging things around the home.

The Love is All You Need box is another memory or treasure box, and the clay-like looking pieces are memory stones, but they were made with cookie cutter shapes. So, they're not that complicated because it was Model Magic, and they got painted and decorated. And those siblings actually made them for all different people in their family to remember their sister. And they really enjoyed making some for themselves and making some for other people, which then was a source of discussion with all the family members.

People like to do the lantern release, that's why I have that up there. And that top middle picture is actually a garden stone, and those are really nice and commemorate and people like to put them in their yard, and siblings can make them about themselves or about their brother or sister or a combination of any type.

I'm not going to read all the community resources. Just remember that this … the slides from the webinar will be posted if not — if it's not immediately, I think it's soon after. So, you can come back and find these. You can also look a lot of these up and … but I tried to do a smattering of places from all over families that might be watching this to show that it's not like in this immediate area.

And an important note is that your family does not necessarily have to have had hospice services to be able to contact a hospice for grief and bereavement follow-up. Many hospices offer programming and support for families even if they didn't have a hospice patient before the child dies.

And here are some web-based resources as well. CHOP actually has some really … I don't mean actually, but CHOP has a lot of good health info resources that reviews a lot of the stuff I read off today. The AChildInGrief.com website is really great because you can click on the state that you're in and get a PDF downloaded of all the grief resources in your state. Some of these are organizations that offer support and some of these are websites that offer different grief resources and things.

And they'll be lots of information. I just need … I have looked at all these websites, so I'm not going to say that there might be anything inappropriate on these. But just be aware of … look at the website that you're looking at when you're looking for resources because we all know that there's some websites out there that might not really be monitored well and might not have great information. So, I just need to put that in the caveat.

We're doing one more set of questions. OK

[Silence]

Very tough questions for the end.

So, the first question talks about a 12-year-old child didn't really believe that her brother could die until it actually happens, and the parent is wondering whether she thinks that the sibling feels guilty because she didn't think it would actually happen and then it did. And what's a good way to ask about whether she feels guilty?

So, I think that a 12-year-old is going to have very conflicting feelings no matter what. I don't know that coming right out and saying, "Do you feel guilty?" is … might put that feeling in her head if she didn't feel that way before. I'm pretty sure that there is probably some guilt there because most siblings say like, "Why them?" and "Why not me?" And so adding … or maybe putting that word in her mouth may not be a source of support for her.

But it could though because she might be waiting for someone to say it. But I think just maybe asking, just questioning how are they feeling, and what are they thinking? And … instead of more open-ended questions, instead of putting a label on what they might be feeling, and then trying to figure out what she's thinking and feeling together.

But that is pretty age appropriate to think like that it's not going to happen because of course, we want everyone to get all better. So … and that's a pretty normal feeling to have.

This question is about the siblings being twins and the surviving twin is having trouble in school, and are there developmental delays to expect?  I think that being a twin and … it offers a whole other ballgame. Sorry, I'm looking at the other people in the studio. But because everyone automatically assumes such the close relationship. And I think that potentially, the developmental delays might not be because of the loss of the sibling, but maybe struggling with the emotions that they're feeling is contributing to being behind in school.

And so potentially, finding a … we all talk about some people don't like to think about getting someone into counseling or therapy, but personally, I would love someone to listen to me and talk about how I feel for an hour every week or every other week. So, potentially, it sounds like the sibling might also have struggles at school and with their schoolwork and stuff, which can bring up also issues … issues with self-esteem and stuff. So, potentially, possibly finding a place for them to talk about all these feelings could be helpful. I don't know that expecting a developmental delay because of the loss of the sibling is necessarily the case. I think, in the immediate loss, they might get more behind on their schoolwork, but I don't know that in the moment, in the imminent acute stress of grief. But again, I don't know that the delay is there because of the loss.

And the toughest question for last, "What if one parent is not coping as well and checked out of their surviving child's life, leaving the survivor with the feeling of double abandonment?" And that's really tough. I mean that's a lot of what we … I have been saying in the slides that you are struggling with your own grief, and then how do you support still being a parent. And I would like to advocate that the … hopefully the checked-out parent can find a place to cope with their own griefs so that they can become a parent to their surviving child again.

That's really tough, and I would say that the surviving child probably needs a place to talk about those feelings, because if they are feeling any of that sort of sibling guilt back and forth of, "I survived and my brother or sister didn't," then it's going to be compounded a little bit by the parent's inability to actually be involved in their life. So, I would say that child probably use some support. Hopefully, that has been helpful.

Now, I'm going to say thank you and just say that I have my email and phone number on the last slide because I know that sometimes questions might come up after or you want clarification about some of the things that were said today. And that's why I listed them on the slide in case you feel the need to reach out. And please don't forget that there will be a follow-up email that you will get that will have a link to watch the recording and I believe also a survey about today's webinar.

And thank you.