Note: Advice in this article is based on my family’s personal experience telling our children about their PTSD Diagnosis – I am not a professional and as such, nothing written below should be considered medical advice.
For a couple years, when my kids acted out in unusual or aggressive ways, they’d often try to explain their behavior with the following heartbreaking words:
“I’m just bad.”
“I can’t help it.”
“I don’t know what’s wrong!”
“None of the other kids are like this!”
You’ve probably heard your kids utter a similar phrase or two, even if you have neurotypical children with no trauma histories. Most kids say things like this during their early childhood as a means of seeking comfort from their parents who swoop in with kind, loving words of that reassure them they’re not bad or weird, that everyone loses their cool every now and again, and that certainly the other kids have their moments, too.
If a child has a secure attachment with his caregivers, then that precious little one believes his parents and he rebounds quickly. He can then go about the rest of his day knowing that his parents love him even when he makes mistakes. He’ll know that bad behavior doesn’t make him a bad kid, and more often than not this will give him the security he needs to make positive choices as often as he can.
But when kids with disordered attachment fall into this negative thinking pattern, their parents’ comforting words fall far short of what they need to move away from those self-defeating beliefs so deeply ingrained in their psyches. Kids with Reactive Attachment Disorder, Disinhibited Social Engagement Disorder or other attachment-trauma disorders develop an “internal working model” based on the lessons they learned from the abuse and/or neglect they endured.
Our kids were so young when those paradigms developed – they did not have any life experience to counter those lessons. So, when they cried for hours and no one came to help, or laid hungry in their cribs waiting far too long for infrequent feedings, or were screamed at instead of comforted when they were upset, they jumped to the only conclusion they possibly could come to – that they were bad little things unworthy of their caregivers’ love (check out Attachment & Loss by John Bowlby, Building the Bonds of Attachment by Dan Hughes, and The Body Keeps the Score by Bessel van der Kolk for more info on this subject).
Both Little and Middle struggle with this negative thinking pattern. Just yesterday, Middle made an error on some schoolwork and I could almost see the hateful thoughts about herself that started running through her mind as she started hyperventilating and pulling her hair. And though he no longer spends hours crying out that he’s “a bad boy,” Little often announces he is “stupid,” “dumb,” “bad,” and “horrible” when reprimanded.
We finally managed to help them realize that they weren’t bad and that the thoughts they had that insisted they were bad weren’t true by telling them about PTSD, RAD and DSED. We told them about this diagnosis to normalize it (especially since Husband has PTSD, too!), to move them away from the idea that they were bad kids who would never do the right thing.
Though I understand why some parents choose not to share diagnostic information with their kids, Husband and I think it’s incredibly important that our kids know the proper terms for their mental health issues and the effects of their disorders because that gives them a sense of agency and they can learn to combat those negative thought patterns with positive healing techniques.
If you’re thinking of telling your kids about their diagnoses, I encourage you to do so! But before you do, you might want to read on to find out how we told our kids, what I wish we’d done differently, and one major complication I failed to consider as a possibility when we shared that information with our kids.
How We Explained PTSD
Husband and I learned about the “hand model of the brain” at ATN’s Refresh, Renew, Reframe Retreat in October 2016.
We decided to teach the kids this hand model of the brain when we returned from our fabulous little break the retreat provided us.
Husband and I sat the kids down and showed them the model, replacing words like “amygdala” with a more kid-friendly term (we chose the phrase “wonky brain” because when something sends your amygdala into overdrive you get all wonky!). We told them that when they get upset, their wonky brain starts wiggling around and flips their lids. We also told them that their wonky brain sometimes flips their lids by tricking them into thinking they’re bad kids or that we don’t love them when they’re not and we do.
We explained that Husband has PTSD from his military service and from his marriage to Bio Mom, and told them that lots of people have similar diagnoses that they have to live and cope with.
Dan Siegel is amazing and his video up there is a fantastic explanation of “lid flipping” that anyone past the age of five or six can understand, as he says. However, a few weeks after we taught our kids the hand model of the brain, I came across the following video:
As you can see, this is a much better video explaining the process of lid flipping to younger kids. So if I could go back in time, I would have popped this Zen Den video on for the kids to let Miss Yoga Suit explain the function and interactions of the amygdala and prefrontal cortex. It’s much simpler than using the hand model and the video is much more entertaining than Siegel’s explanation. If you’re going to explain trauma-related disorders to young children I suggest showing this video to get the discussion going.
What Happened After We Told Them
After teaching the kids the hand model of the brain, we’ve noticed a few positive things. Middle and
First, both Middle and Little have stopped screaming that they’re bad every time they get into trouble… And that alone makes me happy we told them about PTSD and its effects on the brain and body.
Now, they’re much more likely to let us know they’re upset. Middle is now even able to notice when her body jumps into self-defense mode and take steps to calm herself when needed. Little still struggles more than Middle in this regard, but he is improving, too.
In fact, a few weeks ago we went to a family party with about 3o other people. Both kids became overstimulated, of course, but where that would have led to aggressive behavior or total meltdown a few years ago, they held it together. Middle was even triggered at one point during the party and instead of resisting the calming techniques she sought me out for help in using them. And Little asked to go to a quiet room when the noise of all the fun started to overwhelm him. They understood that their PTSD was trying to trick them into thinking they were unsafe and they asked for help to get out of survival mode so they could enjoy themselves.
Obviously, that’s a huge win! even provided us with a sign to give each other – when the kids are feeling “wonky,” they’ll sometimes hold their fists up and flip their fingers to tell us they’re feeling triggered… And sometimes we give them that signal when they’re starting to spin out of control. That sign tells all of us that we need to find somewhere for the triggered kiddo to go and calm down with some breathing exercises or heavy work.
Teaching the kids the hand model also provided us with a super-secret sign… Now, when the kids are feeling “wonky,” they’ll sometimes hold their fists up and flip their fingers to tell us they’re feeling triggered… And sometimes we give them that signal when they’re starting to spin out of control. That sign tells all of us that we need to find somewhere for the triggered kiddo to go and calm down with some breathing exercises or heavy work.
But A Few Problems Have Come Up Since Telling Them…
We have run into a few issues since telling them about their PTSD diagnoses, and I think most of our issues can be tied to the fact that we forgot to tell them that everyone has an amygdala and that everyone has to learn how to tame their wonky brain. This led to two major problems:
- In forgetting to mention that little tidbit, we initially failed to meet our goal of removing the stigma of their mental health needs. Sure, we labeled their condition and explained how it worked, but that was not enough for them to feel less strange in their skin, less “odd” when interacting with their peers. We simply gave the “weirdness” they feel a name.
- By failing to mention that every brain has a wonky part, we inadvertently gave them a simple way to excuse their behavior without working to rectify it.”I hurt the cat because I have PTSD.”
“I threw my toys at your face because I have PTSD.”
“I wiped boogers on the wall because I have PTSD.”
“I punched my friend at school because I have PTSD.”
Even Oldest, my child with no trauma-related diagnosis, started using this excuse!
“Oldest, why did you push Little over?”
“Because… You know… My brain told me to!”
::Insert eye roll here::
You see the problem here.
We had to rectify this, and quickly. We sat them back down and told them how everyone has a “wonky brain” and having PTSD just means their brains get wonky more often than it should. That they’re still responsible for their behavior. That they have to work a little harder to keep their wonkiness under control than their friends, but that they can do it if they use the self-regulation tools they’ve learned at home and in therapy. That they are responsible for paying attention to their bodies and thoughts and taking the steps they need to take to get “unwonkified.”
Unfortunately, they operated under the assumption that PTSD meant they could get excuse their behavior without working to change it for seven whole days before we caught our omission, so it took a while for them to shift out of that mindset.
If you decide to tell your kids about their diagnoses, learn from my mistake and make sure you include language that tells them they don’t have an excuse to go bonkers with the behavior just because they now know the name of their condition!
One Major Thing I Failed To Anticipate
When we decided to tell the kids about their diagnoses, I never could have imagined some of the negative responses from medical professionals and school staff.
When Middle was hospitalized for nine days after her tonsillectomy (a rare abscess formed after her surgery, then she started refusing to eat and drink), I was accused of having Factitious Disorder by Proxy. There were many reasons for that, but one of the reasons was Middle sadly (and randomly) saying to one of the nurses, “I have PTSD.”
Apparently, the hospital took that as evidence that I was off my rocker and causing Middle’s problems.
I know this because “monitor mother for Factitious Disorder By Proxy” is in her medical record.
When they finally called for a psych eval and confirmed with Middle’s therapist, the psychologist wrote in her medical records, “Factitious Disorder unlikely. More likely burnout or caregiver fatigue.”
We’ve also been given the raised eyebrow from school staff with regard to telling the kids about their diagnoses… because the kids were using it as an excuse for poor behavior (like I said, make sure your kids understand that they are still responsible for their actions and misdeeds, PTSD or no, if you decide to tell your kids!).
::Insert super angry face here::
The really absurd thing about this incredulity from others, though, is that we have mental healthcare providers who vouch for us, who agree with our telling the kids about PTSD and how their brain works isn’t a bad thing, who easily could have debunked any ideas they had regarding me or Husband and Factitious Disorder By Proxy simply by calling our mental healthcare providers!
I had no idea anyone would balk at our decision to tell the kids about PTSD, but I sure wish I’d been prepared for that backlash, which is why I’m sharing our experiences with you all… I’d hate for anyone to be caught off guard by questioning professionals as I was!