Telling Kids The Truth When News Is Scary, Sad, Or Bad.

Recently, someone I love shared news with me that I experience as difficult and painful.

In our conversation, we chatted about how others she told received the news and she shared that it went as expected, with the other person taking the lead from her. She said she was honest but optimistic, and that led us to a conversation about how telling the truth, even when hard — and maybe especially when hard — is so very, very important.

There are times when we receive difficult news, “bad news”. Other times, it’s we who have to deliver news that is painful, difficult, or scary and when we do, what we want most is to make it the least of all of these things as possible — and as a result, well-meaningly, lie. This is mostly the case with our children. We do our best to make things lighter or easier by fibbing or lessening the news: I’m going to be just fine, there is nothing to worry about, mommy has a little cancer, Buddy the dog went to a farm where he was really needed, your sister’s life is going to be just a little different than yours.

So how do we tell our kids the truth when the news is scary, sad, or bad?

When our daughter, Téa, was diagnosed and I learned that sudden death, early death, and major cardiac and gastrointestinal issues were all likely with Rett Syndrome. I must have had a reaction but I don’t remember what it was. I think it’s buried…and probably good that it is. I do remember having to answer the question her sisters asked me: “Is Téa going to die?” The strongest temptation for any of us as parents is to lie and as many of us have learned over time, lies thin out and eventually expose the truth leaving mistrust dust in the air that never quite settles.

This is true for any kind of news, by the way. We often want to minimize giving kids the news that their sibling is sick or has a disorder. There is a wish to make it seem as palatable as possible, and in working to achieve that, we end up actually creating a larger issue because when we look for ways to say something without actually saying it, information becomes blurred, questions cling to air unanswered, and the trust we’ve built begins to ebb away.

Being honest with our children has always been the only way to be. Whether to convey information or when responding to their questions I answer in relation to their age, which means being truthful in the answer but also using the correct language. “Yes, Téa might die like all things and animals and people die, but she’s strong and healthy and we will all be part of her team with doctors and nurses to keep her health as strong as it can be just like we do for you and your sister.”

Acknowledging and Addressing

My goal isn’t to assuage their feelings about death or take the scare away; it’s to acknowledge and address it.

When we told our other kids that Téa has Rett Syndrome, she was quite young. I did by the way, also tell Téa that she has Rett. Think about that; I had to tell my daughter that the reason she was falling over, not being able to use her hands and that the horrible shakes she was having are seizures. I told all three that her condition will make it hard to do the things she wants to do and sees other kids doing. That she was going to have to work harder, deal with bigger emotions and challenges than her sisters would. Have you told your child the name of their condition? Do you wonder if they wonder about it or about themselves?

In the last four years, I’ve had two friends diagnosed with cancer and both of them had to tell their children who were all under twelve years old. Both of them told the truth to the extent of the knowledge they had. That’s brave and it’s hard. We don’t have all the answers at once, usually, information unfolds in time — and this is as true for a disease as it is for a disorder. And that’s a great place to start: telling them that we don’t have all the answers but that we will share them as we get them. Let’s go deeper into how to give difficult news.

One: Break the news down into pieces

  1. Introduce that you have news: I/We have news to share. It’s difficult/sad news and we are going to tell you the truth and answer your questions
  2. Invite questions: That’s a good/interesting/thoughtful question. I’m not sure yet, but I will tell you once I find out.
  3. Empathize: I feel scared too. I think it’s natural to feel scared and the way to feel better is to talk about it. Do you want to tell me more about what you’re scared of?

Two: Give them a plan

When my 10-year-old was worried about what would happen if her dad and I die I told her about our plan. I told her we have a plan in place and shared that they will live with a relative and that aside from feeling sad, everything that they are used to being taken care of will continue to be taken care of. That likely their school wouldn’t change and there would be the necessary money for things they count on to continue: soccer, birthday parties, outings. I assured her that they would miss us but also feel good again too. Also, that I would haunt them…but that’s just my humor and thankfully theirs too.

Kids are going to follow your lead and believe you, so if you lie even if it’s with the very best of intentions it will erode bits of the trust they place in you. This is true of any topic, any news, any questions they are seeking answers for. If they know they can believe you, they can relax and trust you. Break that trust, and you won’t ever get it back fully intact.

Three: Be transparent about your own feelings

Being transparent makes you believable and trustworthy. When we let it be seen that we are experiencing difficulty with a situation, we are showing our children that it’s natural to feel confusing, big, scary and even contradictory feelings.

It’s what being vulnerable is about. It signals to them that they’re not alone in whatever feelings they may have and increases the likelihood that they’ll open up and be able to work through how they feel in healthier ways.

Checking In

I check in with all three of our girls about what they think and feel. Because Téa uses assistive technology with eye-gaze to communicate what she needs, wants, thinks and feels I model expressing feelings. What does it mean to “modeling expressing feelings”? It means that I use her device or a companion device (pictures, words on a page or another tablet) to describe how I feel about something going on in my life. I might tell her about a frustrating experience at Costco where I wanted to ram everyone with my cart and model it by tapping the words “frustrated” “very” “too many” “people” as I speak. It allows her to see me look around her device for different ways to show what I mean. Sometimes I ask her, “Téa, where can I find the words for feelings?” The more I show her that it’s safe, positive and even wonderful to talk about feelings, and the more I show how to do it, the better.

Several months ago she was struggling to eat and couldn’t keep anything down. It wasn’t a gastro or food poisoning. It was something else (which we still haven’t figured out but seems to have resolved) and we got a same-day appointment with her pediatrician. She and I arrive at the office only to discover I took us there a day early — the appointment was for the next day and I lost it, crying and gasping that I was so worried and we needed to see her doctor even if it was the wrong day. Assured we were being worked into a spot that day, I steered the wheelchair with Téa laying back, eyes closed, to the waiting area took a seat and let out a muffled sob and heard“sad-mom-crying” to which I look up surprised and reply, “yes! I’m having big feelings today, sad feelings” and as I proceed to attempt to show that it’s okay to have big feelings and it will still be okay she interrupts me with the best use of the word I have come across: “Drama Queen.”

That cracked me up — all of us in the waiting room burst out laughing. I had put that word on her computer because her sisters had been driving us nuts and I thought she might want to say something about it. I hadn’t even modeled it or explained it — she just knew. And she said it to me.

On days that I struggle with her condition, it’s obvious. And so, to make sure that there isn’t a question mark over my kids’ heads as to why I’m short with them I tell them that I’m struggling but that I’ll get through it. I check in with them, give them permission to swear about how they feel. For my 12 yr old, the swearing is the F-word. For my 10 yr old it’s darn.

It’s not bad news for everyone

In the anecdote I shared above, the situation was bad for me and not bad for Téa. For her, she was possibly (likely) feeling unwell and that was it. It was hard for me to understand, much less accept, that news could be received in a way that differed from the way I took it. If I thought it was bad — it was automatically universally bad. Time — and marriage, to be honest — has shown me that what something means to me isn’t necessarily what it means to another person, nor does it shape the same feelings.

News is simply information we have to share. It can be excellent, exciting, anticipated, difficult, scary, unpleasant and many of those things at once, even. But what it will be experienced as or to what degree differs for each of us, which is why when we share it, it helps to say we have news and not qualify it.

Perhaps, your child will take the news with more ease than you anticipated. When we categorize the information as scary, sad or bad it can cast doubt about how they interpreted the news: should I be more upset/worried/scared than I am? I am missing something? Siblings, in particular, need to know what the disease or disorder will mean in the context of their lives, how it will possibly affect them; if you have a plan in mind or see your schedule unfolding with appointments, fill them in about it. Book time specifically with each sibling and always tell them the truth.


The Disability Primer: How To Tell If Something Is A Big Deal Or Not

How to tell if something is a big deal or not has most of us second-guessing ourselves, and I’m no exception.

There has been many a time when I made a fairly big stink about something that wasn’t necessarily as big a deal as I felt it was at the time. To be fair, like you, there is a ton that I am accountable and responsible for. A lot of people depend on me making the best decisions possible, and there are times I have stepped in the proverbial pile with both feet…no doubt, I will again. Though my guess is having learned what I am about to share with you will help me do it less often and not up to my knees.

The question of whether something is legitimately a big deal when it comes to advocacy and parenting of a child with complex medical or developmental needs, sensory disorders, or behavioral ones is difficult to answer; but we’re an old hand at “difficult”, right? So let’s get to it.

Big Deal or Not?

There are times when something that isn’t really a big deal feels as though it is. At others, big deals become so common-place that they feel like nothing at all. It’s part of the relativity in this complex and difficult parenting experience… like a fun-house mirror, except it is far scarier than it is entertaining.

So how can we tell whether something is a big deal or not? Are there criteria to help us identify whether something should go in the BIG bag or the LITTLE bag of deals? And, if there is, what is it and does it change for each of us? For families of children with needs that extend beyond what one typically deals with as a parent, these criteria differ and fluctuate; so developing a gut instinct and an internal pause button are pretty important.

Let’s take a look at what it takes to develop that gut instinct and hone it over time. For me, it is distilled into four parts:

  1. defining my criteria for what falls into the BIG bag of deals or the LITTLE one,
  2. learning to press pause,
  3. expressing my concerns, and
  4. applying the business concept of a post-mortem once the issue has been concluded. I say concluded because that can mean resolved or it can mean that round one is over, and it’s time to ready yourself for round two.

I’ll start with Defining Criteria because that’s the foundation for the rest.

Defining Criteria

A solid place to begin is to ask ourselves this: is this my criteria or someone else’s? One of the more difficult things to sift through is ownership of how we feel and why we feel it. It isn’t work for things that are common complaints of others to become our own, if others are worked up it tends to work us up. It is work to realize their concerns don’t have to be ours. By no means does this mean we can’t feel empathy or show sympathy, but it does mean that we can listen and not make it ours. And this brings us to the next question that helps us define our criteria: is this (whatever it is) possibly not a big deal to me and I’m getting wrapped up in it for reasons that are unrelated? Is this something that would be a big deal by most people’s standards, or, if you’ll pardon my expression, something that can pass like a fart in the wind?

It’s usually hard to tell the difference but is possible when you give yourself a moment of pause to consider how you genuinely feel or interpret an occurrence. To generalize, our criteria here is defined by several things in varying degrees of importance to each of us: laws and regulations, values, beliefs, expectation, and damage. How each of us defines these is unique, though there are likely similarities. So rather than prescribing what the precise criteria ought to be, I invite you to consider the following questions as you think about something that is now (or recently was) a big deal to you. As you go through this short list of questions now and over time, you’ll find that you can tell the difference between “their” and “your” concerns and your criteria will emerge.

Q: Is what has occurred against the law, any regulations or any guidelines?

Q: Is what I am observing or what is being reported to me aligned with my values about dignity, respect, and the treatment of individuals (in particular the most vulnerable)?

Q: Is what has happened or is happening aligned with my beliefs about my child and who they are/can become? Does it match my philosophy for raising my child and how they can grow to see themselves?

Q: How greatly does this differ from what my expectation is for how it will be or needs to be? Is there a problem with it differing — does it cause a problem or is it simply different than what I thought it would be?

Q: What damage is this action/inaction/issue causing to my child’s safety, well being, development, education, mental health, ability to socialize and interact?

Pressing Pause

This is the skill of all skills to master. It applies to every single scenario — good or bad; BIG deal or LITTLE deal. Pressing pause gives our brain a chance to catch up to our visceral system. It can be a super brief pause or a couple of days pause but it will always be an excellent skill to hone into a reflex.

Pressing pause buys us the time we need to apply our criteria and gather the information we need to have a clearer picture. It will give us a very important opportunity to check in with our child about what occurred and reach out to any additional support system we need to connect with be it friends, a support group, or professionals.

I admit, I like the fuel that the fire of anger gives me. It feels real, honest even and there is definitely a place for it. Experience has shown me that I do better for my child when I press pause anyway. Doing so won’t diminish the power you have in expressing the concern and it won’t pale your frustration; it will help channel the fierce rage or profound concern you have into actionable steps that shift other’s perception of you from “nut-job parent” to “strong advocate”; that change in perception will move mountains for your kid. Make sure your pause button is connected to your mouth. Once you’ve paused, you’re ready to express the concern.

Expressing The Concern

There are two big parts of expressing the concern that cause most parents added-stress when dealing with an issue. It certainly did for me when I started this aspect of my parenting journey eight years ago. These are: being scared to do it and knowing how to do it. It’s natural to be scared to do it, most of us don’t like confrontation. Many of us like to please others or fear being disliked and, regardless of whether that’s the case for you, you may not be sure how to go about affecting the best outcome.

I’m in marketing and business development. My specialty is conveying things, engaging others in authentic ways that result in desired outcomes. What I’ve learned is that you have to market your child to everyone who works with them and supports them. The likelihood that the people in your child’s life do what they do because they love it is moderate to high, so their intentions are good and their actions well-meaning. Doesn’t mean they are going to get it right even 80% of the time, forget about 100% of the time. Nor should they be expected to.

So how, if you’re not a marketer by nature or by profession and you do dislike confrontation express your concerns so that things change the way they need to? I suggest four steps that I noticed I started doing that work really, really well:

Step 1: Ask questions. Make sure you heard or saw correctly. Find out who was involved and who needs to be involved to resolve the issue.

Step 2: Be direct and polite. Being direct means getting to the point of the issue, not describing your anger about what you saw. If it is a safety issue (that must go in the BIG deal bag every time, by the way), here is an example of how to be direct and polite: I saw [blank] which is dangerous because [blank]. We need to make sure [blank] doesn’t happen again. I have ideas, when can we explore them?

An important part of this is setting a timeline for the issue to be addressed. Is it urgent or can it happen over the next couple of days? Is a multi-step approach satisfactory or does it need to be addressed completely all at once and extremely soon?

Step 3: Model. It is very, very common to have individuals working with your child who never received the necessary training to properly work with them (and yes, this is in and of itself a big deal issue). This means that the supporting behavior or even physical positioning of your child or their devices needs to be modeled and demonstrated. Do it yourself or ask to bring in a specialist that can teach them. This is admittedly harder in many public school districts, but I’ve learned through experience — both mine and my readers — that there will be a person in the mix who is willing, and the key is onboarding that person. A good place to start with that is by asking: Are you the person who can help make this happen, and if you’re not, would you please introduce me to the person who can.

Step 4: Define Success. What outcome will feel acceptable to you? Knowing what is a must-happen and what is a would-like-to-see-happen makes the process of solving the issue smoother because everyone has a sense of where the end goal is and it makes it measurable.

Post-Mortem The Criteria

Sounds dark, I know. But it’s not only a medical examination, it is also a concept applied in business at the end of an event or program or launch. So, now that you have a better sense of what your criteria are or how they are taking shape, we need to examine them: are they still valid in force and application?

Sometimes, we respond to things habitually. We are too busy to check-in with ourselves as to whether something still matters to us or even still applies, and this isn’t something unique to our conversation here…I think this is true about everything in our lives. It has been in mine: friendships, ideas, routines that stopped serving me long ago I kept going because I was too consumed by other things to even consider that they needed to shift. Conducting a post-mortem (an examination to determine causality) gives us a chance to explore whether what felt like a big deal and met the criteria no longer does. When that happens, it’s perfectly alright to toss it out the metaphorical window.

The Takeaway

Invariably, we will all get tripped up from time to time on the question of whether or not something is a big deal. It will depend on how we are feeling or the week we’ve had. Applying criteria, pressing pause, expressing our concern according to the four steps above and checking in with ourselves to see whether or not the criteria still matter or apply will go a long way in helping us a) understand whether something is a big deal or not, and b) articulate the concern that is a big deal with greater success.

One of the most important contributors to the development of my approach to this topic was considering the cost of inaction on my daughter. In his book, “Tools Of Titans”, Tim Ferriss (@tferriss) talks about fear setting and overcoming the obstacles we think are present or even place ourselves. He suggests considering the “atrocious cost of the status quo” be it emotionally, physically, financially, and so on. As a parent of a child with special needs, the cost of inaction has a truly significant negative impact on my daughter’s well-being and it also, as it happens, has a significant impact on mine because, as you’ve read in my other articles, I am her Champion. It is my privilege and my duty to safeguard as much as it is to inspire. And if I fail to do that, what will be the cost of my inaction to her in 6 months, and one year, and in three years? But also, what is the cost of that inaction on me? Can I look at myself in the mirror and like/respect/recognize the person staring back at me? Does my idea of myself align with the reality of how I act such that I live with integrity?

Finally, there are times in our daily routine when we forget that our children are autonomous if not independent; when parenting gives way to care-taking and it doesn’t occur to us that perhaps we are projecting our concerns onto our children, or vice-versa, and at the very least equally damaging – though press me and I’ll tell you it’s far more damaging – failing to listen and acknowledge that something is a concern or struggle or for them; falls into their BIG deal bag even if it didn’t even register as a deal at all to us.