Surviving the Hard Days

This week researchers from University California San Francisco and Boston Children's Hospital released a study based on data from the PCDH19 registry . The researchers looked at several areas of our kids lives to see how they are impacted by the disorder. They found that seizure clusters are still the hallmark of PCDH19 and sleep issues are common, as are intellectual disabilities. They also discussed the behavioral challenges that many of our kids face and noted that for lots of parents these are more of a struggle than the seizures. This is definitely true in my house.

When we are faced with seizures, I know exactly what to do. I have a protocol from her doctors explaining what medications to give when and at what point to go to the hospital. We have a whole system down. Seizure clusters are still terrifying and exhausting ordeals for everyone involved but at this point we understand how to react. The behavior issues we face regularly are not so clear cut.

Many of the other parents I speak to with kids who have PCDH19 describe behavior issues as overwhelming. Good kids can have violent rages and behavior can spiral out control. When I say that, I don’t mean that our kids get sassy occasionally and slap their siblings once in a while like most neurotypical children. I mean that I have been bit, kicked, hit and spit on. I have patched holes in walls, caught a run-away, and been the mom in WalMart whose child is screaming that she’s an f***ing b****. Especially during auras, the time when the brain is chaotically building up to a seizure, sometimes the behavioral effects of PCDH19 can completely hide our beautiful daughters. As a mom, I feel helpless when this happens


There are interventions that can help. Our kids can benefit from therapy to help them cope with big emotions and the limits they face. Many parents also find tricks to help their children avoid meltdowns when possible and to help them walk through rages safely when it’s not.* Some days, I use all those tricks and they work and we have an almost normal day. Some days I try my best and nothing helps. Other days I completely fail at this. Occasionally, it feels so overwhelming that I just want to hide or scream or run away on a 4 wheeler.

I think to many, the exhaustion from coping with difficult behaviors can be surprising. We fight so hard when our kids are in a seizure cluster that we see the times between as a break. When behaviors make that time an emergency too, we can get so tired, physically and emotionally that it feels like there is nothing left. It can feel devastatingly lonely in those moments but the truth is I don’t know any special needs parent who been on this journey and long hasn’t felt so desperate they briefly fantasized about running away or hiding in the closet with a bag of butterfingers at some point.

We’ve all been so tired or overwhelmed that we acted outside of our normal. Those days happen. The trick is to take care of ourselves so they don’t happen too often and so that they don’t cause any real damage when they do. In therapy, we call this self-care. Basically, we’re talking about the stuff that nourishes your soul. We want to be sure to distinguish this from numbing behaviors which can be similar but exist only to keep us from feeling anything. You know something is probably self-care if you feel sustained afterwards or more connected to the people in your world. So, staying up late on Thursday night to watch Scandal, drink wine and pretend I'm Olivia Pope might be self-care but watching Friends reruns till 4:00 in the morning while downing a bottle of tequila would qualify as numbing.

I recommend focusing on one small act of self-care every day and a big one every week, plus extras during meltdowns or when we’re going through hard times. It’s best to have some ideas of what you can do before the crisis hits and to focus on self-care even when things are going OK. That doesn’t mean we have to spend a fortune; good self-care can be cheap or free. Here’s a few of my favorite ideas:

During the crisis:

Whether you are in the middle of a cluster or trying to survive a violent outburst, it’s important to keep your cool.

  • Practice deep breathing. If you aren’t hyperventilating, stick a peppermint in your mouth and focus on how the cool air feels in your throat.

  • Grab a stress ball and squeeze as hard as you can.

  • Create a mantra to chant during the hard moments. This is a short, meaningful phrase that you can cling to when everything feels chaotic.

  • Imagine something fantastical. Sometimes I take a cue from the old TV show, Scrubs and imagine something wild happening in the midst of the chaos. Maybe the person screaming suddenly starts to shrink until they are two inches tall, and thus mu