When I started this job, I really thought I would be writing about seizures each week. So, I find it kind of baffling that I barely write about them at all anymore.
But the biggest “symptom” of Dravet syndrome we are dealing with right now is not seizures. It’s autism and the behaviors that stem from it. Our days are driven by routines and rituals.
Sometimes, they drive me crazy — such as when I have to sneak away a pink dinosaur costume to wash it overnight. After being worn for five straight days, it kind of stinks.
We’ve learned how to handle some obsessions. My daughter Austen has her own Christmas tree that she can decorate, so that she will leave my tree alone. And I’m fine with her playing “pouring water” for as long as she wants, as long as she uses her designated bucket and puts a towel down on the kitchen floor.
I’m hoping to curb other behaviors, such as her tantrums and meltdowns when she can’t deal with the world around her.
But some rituals — well, I have to admit I kind of hope they stick around for a while.
I usually try to wake up before Austen does in the morning. This gives me a little time to drink a cup of coffee and get some reading in. On those mornings, I sing our “morning song” when I hear her little feet pad down the hallway. She sits on the couch with me and we cuddle. She’ll wrap a blanket around the both of us and snuggle up to my neck. It might last a minute or maybe 20, but it eventually ends when Austen decides she’s ready for her morning glass of milk.
On weekends, I tend to try to sleep in until Austen wakes up. It’s not really sleeping in, as the latest she’s ever gotten up is 7:15 a.m., but it’s later than normal. On these days, she wakes me up with a little kiss to the cheek and whispers in my ear, “Mom, it’s morning, the sun is shining!” It’s the sweetest way to begin my day and makes my weekends a little brighter.
These are the rituals we will not try to curb in applied behavior analysis therapy. They make a positive impact on Austen’s life and on mine. These are the rituals I miss the most when Dravet syndrome rears its ugly side. When the seizures are rampant and Austen spends days on end in a postictal state. When I’m sleeping on a bed in the pediatric intensive care unit, or lying awake all night ensuring her oxygen mask stays in place.
These rituals have become as much mine as they are Austen’s. When they are in place, I know our life is back to normal — as normal as it can be with Dravet syndrome, at least.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?