Coming to Terms: Down Syndrome and Grief

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #13: Caring for the Caregiver). Click here to download the full magazine.

The LowDOWN: A Down Syndrome Podcast recently welcomed Samantha French to discuss grief and Down syndrome. Samantha is a clinical family counselor who specializes in children with neurodiversities. She has worked with the Lumara Grief and Bereavement Care Society since 2013, attending and facilitating annual bereavement camps. Samantha is also an advocate for her twin brother, who has a developmental disability. This article is a lightly edited transcript of a portion of The LowDOWN Podcast episode, produced by the Down Syndrome Resource Foundation. The full conversation can be found here.

Trigger Warning: This interview touches on some very difficult issues. Grief and loss can be triggering for everybody. Be gentle with yourself and, if necessary, give yourself permission to stop reading and return to it at an appropriate time.

The LowDOWN: Can we begin by defining what grief is, and how it might be experienced by a person or a family?

Samantha French: Grief is a heavy topic, but it’s one that is common to every human being. The reality is, every one of us will experience grief in some way, shape, or form – probably multiple times throughout our life. And yet, a lot of people are very afraid of grief.

Grief is essentially our response to the loss of something. It may be a person, it may be a job, it may be an ideal, or something that you had in your mind that was going to happen, and then it didn’t. It’s anything that you had a very strong connection to that has now ended.

Because grief encompasses many different experiences, it takes many different shapes. Everyone grieves differently. And, though a lot of people think that grief happens all in your mind, what we know about grief and loss is that we experience it with our whole body. Grief has physiological, emotional, cognitive, and behavioural impacts.

LD: And grief can be recurring, right? You may feel like you’re absolutely done dealing with it, but then it comes back out of nowhere.

SF: One of the things we say is that grief is a lifelong process, especially when you’ve lost a person who’s very close or experienced a major trauma. Throughout your life, when memories of that person or situation pop up from time to time, it’s going to be a reminder and it’s going to re-trigger a little bit of that loss. Depending on how you’ve dealt with it and the process you’ve gone through, it’s not always going to look the same throughout your life. And that’s one thing people are really worried about in that initial phase of grief where it feels really heavy and really hard: they’re worried that it’s going feel like that for the rest of their life. The good news is, even though grief is a lifelong process and something that we always carry with us, it won’t be so acute forever, if we deal with it in a healthy way.

LD: You mentioned at the outset that grief isn’t only related to death. This is a complex and sensitive topic, but we have found that parents almost universally experience a form of grief when they receive the initial diagnosis of their child with Down syndrome. What might grief be like in that instance?

SF: So, this is a situation where you had an expected life for yourself, and for your child, and then you suddenly learn that your future and your child’s future is going to look different than you thought. It’s not that you stop having a life for yourself or your child, it’s just going to be a different life than you imagined.

People respond to this kind of news in different ways. It can often be something where we see a lot of anger. There’s definitely some sadness with it. Sometimes we see significant bodily reactions in those first moments, with a little bit of withdrawing or numbness.

As people move through the stages of grief, they usually move beyond the anger and sadness, into a place of advocacy. They turn it around and realize, “I have some control here in what I can do.” They discover resources and supports that help them through that process, give them a clearer idea of what to expect, and what they can do to help their child have the best life possible. But that takes time, and there will still be moments when they may slip back into sadness or even anger.

LD: It sounds like a sort of anticipatory grief, as though there is a mental highlight reel of what we’re going to do as a family. We can picture it and it’s going to be awesome; it’s going to look like this. But then that gets taken away with a diagnosis. Perhaps that’s why the diagnosis conversation stays with people for a very long time, if not forever: because that is the moment when the plan exits the room.

SF: Absolutely. You’re starting over again. You’ve lost your footing, and now you’ve got to figure out this new terrain.

And yet that terrain has changed dramatically over time. Back in the day when you received a diagnosis, often the parent had to come to grips with a doctor basically saying, “You’ve got to get this child into an institution, and their life expectancy isn’t going to be that long.” That created a sense of anticipatory loss: the child has just been born and you’re already dreading the day they are going to die.

Thankfully, that is not the case anymore. Now what we’re seeing is anticipatory grief from caregivers. Their child is going to have a significantly better life, which is obviously fantastic, but it brings additional complexities and worries. Parents quickly start to wonder, “What’s going to happen to this child when I am gone?” People are getting a diagnosis and immediately thinking 30 years, 50 years, 60 years ahead when usually we only think five to ten years into the future.

I’m all for planning ahead. Providing parents with lots of information up front is helpful, especially when the child is going to have developmental milestones that are a little bit different than a neurotypical child. But that doesn’t mean it’s not going to hurt. It’s not a substitute for the grieving process. And I think that that’s a misconception with anticipatory grief: if you just prepare enough, if you research enough, you can keep the feelings of grief at bay. That’s not how it works.

LD: That’s a great segue into coping mechanisms. We’ve all heard terms like avoidance, deflection, minimization. Can you walk us through a few of those?

SF: The wonderful seven stages of grief? Yes, let’s talk about that.

When it comes to processing grief, we’re still learning. We started out with a very rigid model: you’re going to go through these steps in this order. But we quickly came to realize that this isn’t the case, actually: it doesn’t reflect how grief works in the real world.

It is common to experience certain emotions as part of the journey (sadness, anger, bargaining), and ultimately move into an acknowledgement and acceptance phase. But it doesn’t often go in that order, and it doesn’t often stay in that order. It’s not linear.

I like to compare it to walking through a meadow. Sometimes you’re walking through the flowers, sometimes you’re just walking through grass, and sometimes the grass gets really tall. Sometimes there’s something under that grass and you step in it and get a bit stuck. Then you might get out of that muck and keep walking, but there’s still something stuck to your foot. Then it dries and you wash it off and you keep going. You’re constantly in that ebb and flow, up and down. It changes with every step, especially in the first year. It’s very, very common for you to go through all those different phases many times.

LD: Many of our families have an additional diagnosis on top of Down syndrome. Often it’s autism, but there are countless others. And that can be so hard to deal with. They tell us, “Okay, we just got our footing with Down syndrome, and now the rug has been pulled out from underneath us again.” It’s just layer on top of layer on top of layer, and they’re like, “How do we get out of this hole?”

SF: And the people around them, friends and family, may not understand. In our society, we have this idea when it comes to loss or any other type of negative stimulus: suck it up. Get over it. As if anybody could.

I’ve heard well-meaning people tell parents, “Well, at least you know now, and you can do something about it.” Well, that’s not always the case. And even if it is, it doesn’t change the fact that life is now more of a struggle.

LD: Let’s talk about grief from another angle. Parents may notice changes in their relationships with other parents in their social circle. If friends of the family also have kids, and those children are developing more typically, this can be a painful reminder of the differences and can lead to isolation and withdrawal. What are your thoughts on this aspect of grief?

SF: That can be so hard. You may all have kids that are two, three, four, and you’re all on the same page, more or less. Then as time rolls on, there begins to be a more noticeable difference, and it increases with every year. You may start to feel left behind, and you drift apart.

It was challenging for me personally, as I grew up with a twin brother who had special needs. At times I had to take him with me, be his caregiver and his sister, and still be my developmental age and engage in social relationships. I watched my parents trying to figure out how to do sports, how to manage family functions, and how to set both he and I up for success. It didn’t leave a lot of time or energy for their own social life. It’s a very challenging thing for any family to go through.

I think that’s why it’s so important to find your tribe. Find those people who will accept your family for who you are, and who want to be a support. In many cases, it’s a small tribe, and it may not include the people you thought it would. That can really be difficult. But it’s about quality over quantity.

LD: As adults, we often don’t expect to have to change our social circle. We may think, “I have my friend group and I’m not planning on switching that.” But then these changes happen and it’s a whole other unexpected shift. And it’s not just friends, either. Family dynamics change; family members may not understand what you’re going through, or how to relate to your loved one with Down syndrome.

SF: Exactly. That’s why those people who do understand are essential. They are a lifeboat.

LD: Let’s close by talking about what to do when two people have different grieving styles: in this case, the two parents. We’ve talked with families who are heavily grieving, and one person really wants to share openly and widely with others and talk through all the details because that’s how they process it, while the other person doesn’t want to talk at all. That’s not how they cope. It creates a point of contention between the two people who, ideally, should be on the same team and moving forward together.

SF: I think that that’s probably one of the most difficult areas that I deal with when I’m working with families who are grieving as a family unit. I try to help them understand that everyone goes through their own process individually, and it’s not wrong. It’s okay for this person to want to talk openly and this person to want to be quiet.

It is so hard for people to understand others’ grieving styles. When you are deep in grief, it feels like that’s the whole world. You look outside and go, “Oh, the world is still moving around me. How is that possible? Don’t they know what’s happening in here?” Or you look at your partner and say, “How can you have moved on already?” You may even know that everyone does it differently, but saying it and feeling it are two different things.

Sadly, we have seen relationships between the parents not last because it becomes such a point of contention. We need to learn how to grieve in a way that gives space to ourselves and others. We have to accept it and say, “I’m going to give myself permission to grieve the way I need to grieve, and I’m going to give you permission to grieve how you need to grieve.” There will be pain points, for sure, but if we can be honest with each other and keep this mindset, we can work through them together.