Learning to go with the flow of my daughter’s needs

Jay-Z once said, “Don’t ever go with the flow. Be the flow.” And while I love Hov and his music as much as any self-respecting ’90s kid, that advice doesn’t always work when your child has special needs.

Just before Christmas break, we made the decision to move Austen, my 7-year-old with Dravet syndrome, from her special education classroom to a general education classroom full time. Before that, she’d only been in a gen-ed classroom for roughly 30-45 minutes each day, so I knew this transition would be big for her. But I didn’t anticipate just how big.

Since we returned to school in January, Austen has had three infractions in school after her teacher asked her to correct her behavior. When students don’t do this, notes are sent home to parents.

Once, Austen got frustrated with her work and wadded it into a ball, then threw it on the floor and yelled, “I don’t want to do it.” Another time, she got frustrated with a friend and tore up their eraser (I assume with her teeth) when they made her mad.

Recommended Reading

January 31, 2023 News by Andrea Lobo, PhD

Dravet Children’s Behavioral, Emotional Gains Tied to Fintepla

After a talk with her teacher last week, we realized that these behaviors seem to be happening around the same time each day, after lunch and before it’s time to go home. We brainstormed and theorized that Austen might be getting tired and becoming harder to redirect at this time, sometimes simply refusing to go along with what her teacher is asking of her.

Although it was a hard decision to make, we decided it might be best to give Austen some more time in her special education classroom. She’ll still go to her gen-ed class until about 12:45 p.m. That covers all her core classes, physical education, recess, and lunch. But she’ll have the afternoon to unwind and decompress in her old classroom.

I’m not going to lie, I cried when we made this decision. It wasn’t an easy one to make.

As parents, we assume that our children’s accomplishments will be linear, that they’ll always continue to build on their milestones one after the other. But with a special needs child, that isn’t always the case. I potty trained Austen three separate times after her seizures made her regress.

But even if we know this, it still hurts. It’s just another reminder that our lives aren’t normal, that this disease can still rear its ugly head, even when she’s not seizing. It will never go away, and it will never let us forget that.

I try to remind myself that the life Austen is living is so much better than the life I imagined she’d have only a few short years ago. During those dark days when she was seizing day in and day out, I wasn’t sure if she’d ever be able to go to school, much less learn to read and write. But here we are. She did it.

I know I’m doing the right thing by allowing Austen to take this step back. We can add in more gen-ed time when she’s ready, or we can keep her schedule as is. I’m going to try to just go with the flow and let Austen set the pace. It’s her life, after all.

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.

Print This Article