“Remember, nobody likes a brat.”
I think I might have started a column with that same statement before, but the reason I do so is because it’s one of the most memorable things I’ve been told during our family’s journey with Dravet syndrome.
It was told to me by a special needs mom I have known most of my life. Her son was born with Down syndrome, and I borrowed strength from her just to keep going when I was trying to process all that the diagnosis of our daughter Austen meant for our future.
She told me we could do this. That we would tackle each bump in the road as it came, and that we should always remember to treat Austen in much the same way as we do our other children. No one likes a brat, she said, and that’s what we would create if we always babied her and failed to give her any responsibility or boundaries.
I’m here to say that I think we might have created a brat.
I’m not sure when it happened, perhaps during that year and a half of seizure after seizure. We started with Austen having age- and ability-appropriate chores, just like her siblings. She would help pick up her messes and put her clothes in the hamper. She put her shoes in her closet and coat on the hook when we came in the door.
It happened so casually I didn’t even notice at first. But then it hit me like a ton of bricks a few weeks ago, when I heard her tiny voice demand, “Addi, it’s time for you to clean my room!”
I must admit I was a bit mortified, not only because she was so comfortable with the idea that someone else needed to pick up her mess, but also at how much I had been leaning on her older sister to help — so much that Austen was comfortable demanding her sister do the job.
Once I picked my jaw up off the floor, I knew we had to do something. That very day, I sat in Austen’s room with her for a long time, not making her clean her room, but making her help me do it. I wouldn’t pick up a toy until she did. And I praised her with every toy she picked up. It took over an hour and started with a lot of tears and tantrums. But eventually, we got the room clean.
We are slowly getting back to having Austen do her chores. And while we often still have tantrums in the beginning, they are becoming shorter. I’m still helping to pick up her toys, but she’ll pick up two or three toys to my one, and it takes us less time to accomplish our task than previously. She’s also taken on making sure the dog and the cats have water each morning, and she wipes down the chairs after dinner during our family kitchen clean-up.
I know that Austen will have some limits and that she might not be able to do everything her peers do as she gets older. But that doesn’t mean she can’t do anything at all.
Just like any child her age, Austen will only do what I insist. It is up to us as her parents to push her to see what her limits are.
It might take her twice as long to pick up her room as another child her age, and her delays in fine motor skills make it harder for her, but she can do it. And she will, as long as I insist.
I believe it is obvious I am not a perfect mom. I make mistakes, and I question every choice I make. Some of my choices have led me to create a brat.
But one thing my almost 13 years of parenting has taught me is that I can’t dwell on my mistakes. It’s not the mistakes my children will remember, it’s what I did to correct them.
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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