A Letter from Dr. Anup Patel, President of CNF Board of Directors, and Dr. Bruce Cohen, President of the Child Neurology Society
The end of the school year should be such a happy time for children. But this year, we were tragically reminded that our children are living with a horrific, yet justified, fear looming over their heads – the impact of violence at school.
At the time of writing this, what happened in Uvalde, Texas is still fresh in our minds. By the time you are reading this, the news cycle may have moved on, but we know our children and our families have not.
Today’s children are aware of violence in a way they never have before. They are having discussions that we, as their caregivers and medical professionals, never had to have when we were young. They are learning how to hide and protect themselves from dangers that we do not want to think about when caring for children. And in the news, over and over, they are reminded of what could happen on any given day.
This is a lot for adults to process. It is an overwhelming amount of stress and fear for young minds, even more so for children who are living with developmental or cognitive delays. So, what can we, as caregivers and medical professionals, do to help our children process all of this and minimize the harmful impact of violence they are aware of? Here are some places to start.
We put ourselves in our children’s shoes.Â
When we think about how children with neurological diagnoses perceive trauma and the impact of violence on their minds, we have to think about them in two separate groups: those with intellectual disabilities who experience cognitive symptoms, and those without.
To start with the latter group – those who might experience migraines or epilepsy but whose intellectual abilities are not impacted – depending on their age, will perceive violence and danger differently. Older children and teens will process with anxiety and fear, as they have a greater awareness of what is happening, and more accurate language to describe it. Younger children will internalize and individualize it. They think “If it happened to those little kids, it will happen to me.” And if they are unable to verbalize this fear, it can become bigger over time.
Similarly, in children with intellectual disabilities, it might be harder for them to articulate their fear. They also may misunderstand the specifics of situations. For example, they might think that a faraway threat is much closer to home.
We learn to identify signs of stress, trauma, frustration, isolation, and depression.Â
With children in the neurology community who struggle to verbalize their thoughts, it can be harder to spot signs of stress. But caregivers know their children, and any time anything seems out of the norm, that can be a sign that your child is struggling with trauma. This can include disruptions to their routine, acting out, becoming violent or mimicking violent behavior, sleeping issues, unexplained crying, withdrawal from social activities, etc. When a neurologic condition gets worse, due to stress or poor sleep, this can exacerbate symptoms such as seizures.
Anytime a parent sees something that concerns them, they can reach out to their child’s neurology provider for the proper screening to help clarify the issue and define the next steps to help.
Aside from seeking professional advice, the best thing a caregiver can do is to encourage conversation and maintain normal activities. Talk to them if you can. Also, routines are especially important. If they can communicate and mimic, parents should model good behavior and communication. But the best thing to do is to just keep talking to them.
We educate ourselves with credible resources.
There is so much noise out there, particularly when it comes to breaking news or hot-button issues like violence in schools. But our goal should be to cut through the clutter and rely only on the most credible resources. Here are a few resources that we would recommend:
- Center for Disease Control: The CDC offers several helpful resources for parents and caregivers who are trying to navigate trauma and the impact of violence with children. Here are some examples to get you started:
- American Academy of Pediatrics: The AAP also offers guidance for talking to children after a traumatic event happens to them, or after they learn about it:
- Center for Media Literacy: If your child is old enough to be engaging with social media on their own, it’s important to be aware of what kind of information and images might pop up on their feed. CML offers tips on what to do when your child is exposed to media violence.
- For more on how to communicate with minimally verbal children, watch CNF’s webinar with Dr. Kristina Gerencser, PhD, BCBA-D, where she shares her expertise and helps caregivers expand their toolbox to deal with challenging behaviors and replace them with more appropriate communication skills.
We equip ourselves for hard conversations.
Initiating conversations: If your child has not brought up the conversation, and you feel it is important, then you can be the one to start the conversation. You know your child best. They are likely getting information at school, so we would recommend at least asking them what they are hearing so that you are aware.
If your child is bringing home misinformation: Kids and teenagers are more likely to believe the first sources they encounter, so it is important to be proactive in countering misinformation once you catch wind of it. Ask clarifying questions like “What have you heard about this? Why do you think this happened?” This gives them the chance to speak freely, and for you to listen for clues about what’s going on with them before you start a conversation.
On making your child comfortable: Give them your full attention. Help your child understand that you feel this is an important topic. Sit down, with no phones, and maintain comfortable eye contact. If having an outlet – such as a fidget toy, or maybe going for a walk is helpful, it is ok to adapt to whatever it is they need.
Tailoring for age and ability: If you want to have a helpful conversation about a hard topic, the biggest thing is knowing where your child is in their learning trajectory because this will determine how you tailor the talking points. With teens, you can get more in-depth when discussing the impact of violence. For younger kids, you may want to keep it at a high level.
Above all, we show them we care.
No matter what is happening in the world, your child’s sense of security starts at home and with you. You are probably already doing everything you can to let them know that they are safe and loved. Be an example of how to be aware and informed without living in fear. Hug and kiss them and tell them you love them every day. As caregivers, we already know how much these little acts mean to us. But remember that these little acts can mean the world to our kids too.
The caregivers in our child neurology community are strong, and as much as we wish these conversations did not have to happen, this is just another way to allow that strength to shine. It is easy to wonder whether we are doing the right things for our children – on many fronts – but we have no doubt that our caregivers can handle this conversation and give their children what they need. Continue to be #childneurologystrong!