My daughter is no longer thriving after returning to school

When we’re at home, Avery is just Avery. But when we enter the world, go to school, or attend organized activities where age-appropriate social interactions and behaviors are the norm, Avery becomes someone who exists outside the norm.

Avery is my 10-year-old daughter who has Dravet syndrome. Because of this diagnosis and the seizures it causes, she doesn’t present like a typical 10-year-old. She has a mild intellectual disability.

Her brain often gets overwhelmed, and she struggles to process the world around her as quickly as it moves. Her muscle tone is low and weak. Her speech and communication are often difficult to understand. These are all real barriers to interacting with the world around her.

But at home, she is just Avery. There is no expectation that she would behave like a typical 10-year-old; in fact, I often forget what “typical” even looks like.

At home, she thrives. She plays, sings, and dances. She lives in a world of make-believe that the rest of the family goes along with. She helps in the kitchen. She interacts with her older siblings both positively and negatively, as in any sibling relationship.

She swims every day in the summer and helps me harvest the vegetables in the garden; tomatoes are her favorite. We play with baby dolls all the time and then open YouTube to watch other people play with baby dolls — because that’s what she loves.

She lies down with me to nap every afternoon. She asks me to pick up her lanky, tall body and hold her, like one might hold a toddler, and I do it, without even thinking how strange that might seem to other 10-year-olds.

At home, there is no comparison, no keeping track of milestones missed. There is no fighting for acceptance or worrying about how someone will respond to her. When we don’t understand her speech, we play charades until we figure it out. When she struggles to keep up with directions or plans, we slow down.

Heading back to school is difficult

As I observed her this summer, I was in awe of how amazing she is, of how she thrives. But now that we’re back at school, she has to get out of bed, put real clothes on, and get out the door by a certain time. Now, she has to walk in the hallway, not run. She has to be quiet, not sing. There are adults she doesn’t know who greet her every day in the hall, and she is expected to greet them back.

She has to do things that are really hard for her, and on some days, that seems like almost everything. Yes, remembering sight words and doing math are hard, but so are the things that are supposed to be easy. Doing a situp in physical education? That’s hard. Interacting with friends at recess? Hard. Participating in extracurricular activities? So hard.

Everyone and everything moves so quickly, and her brain is often fighting to catch up. I look at her this week and see a child who is no longer thriving. She is just trying to survive, keep up, and be a part of a community. Trying … and struggling.

As I watch her struggle, I find myself struggling, too. I know there are things she has to learn to do to function in the world. I know I would be doing her a disservice if I didn’t at least try to help her learn boundaries, schedules, and rules. In my heart of hearts, I know many good things have come from immersing her in our world. There have been so many positive interactions because she participated in school, church, and the community.

Still, my mom-heart understands why people choose to isolate and stay at home rather than venturing out into the world. Because at home, she’s just Avery.

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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.