Helping Austen Cope in a World She Can’t Always Understand

Tantrums in the grocery store when too many people are around.

Biting friends and siblings when they don’t want to share their toys right away.

Throwing herself on the ground when someone tells her no, or even not right now.

These are things we deal with raising my daughter Austen on a daily basis — behaviors she can’t help because her brain just doesn’t know how to handle them.

And while I am so excited that we are currently on her longest seizure-free streak yet, it has its disadvantages, too. It seems the longer we go without a seizure, the worse her behavior gets.

It’s a pattern many Dravet parents see in their kids. I actually brought it up to Austen’s neurologist a few years ago, and she said it seemed to be a common occurrence in her patients. As their brain gears up for a big seizure, behaviors start to get worse. Then the seizure happens, and it’s like the brain almost resets. The behaviors get better, and for us there is a large jump in learning new words and skills.

But what happens when you don’t get that reset? How do you deal with the behaviors then?

We rely heavily on skills we learned while doing applied behavior analysis (ABA) therapy before the COVID-19 crisis. Austen qualifies for ABA therapy because she has autism, and her autism is a byproduct of her Dravet syndrome. It’s not a definite cure to the behaviors, but it’s keeping us going until we can restart therapy again.

Please don’t think I’m saying I’d rather have seizures than behaviors, because I’m not at all. I would definitely rather my daughter be awake and biting me than spending her days in a postictal slumber, unable to concentrate or participate because she’s having so many seizures.

But this just goes to show that nothing is easy with Dravet syndrome. Even good things, like not having seizures, come with their own sets of problems. Even happiness comes with questions and heartache. 

When I first started ABA therapy with Austen, some of my peers did not agree with the idea. They thought I was trying to change Austen by making her conform to society’s standards.

I guess that is true, in a way. I’m not trying to change who Austen is on the inside — just how she reacts on the outside. I want Austen to be Austen, but I need her to be able to function in the world. 

I need her to interact with her peers without violence and handle going into a grocery store without a meltdown.

I can handle Austen as she is now, and people in public look the other way most of the time because she’s a little girl. But what if she’s still doing this as a teen or an adult? How will the world react to her then?

What if Austen outlives her father and me? Would other family members be able to handle these outbursts? 

ABA therapy might not be a miracle cure, but it can help Austen learn to cope. Maybe it can help her learn to handle a world she doesn’t quite understand, in a society that doesn’t always understand her.

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Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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