My Daughter Is Getting the Help She Needs at School

Meagan Cheney avatar

by Meagan Cheney |

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I sent my two youngest children back to school earlier this month. While their oldest sister, Addi, 13, returned to school in November, neither my son, Atlas, 8, nor his younger sister, Austen, 6, had set foot in a classroom in 22 months.

We took them out of school in March 2020 because we were terrified of Austen getting COVID-19. She has Dravet syndrome, and her seizures weren’t very controlled at the time. Austen has had a status seizure from just an adenovirus, and we had no idea what this new, unknown monster could do to her.

But sending her back to school meant tackling another monster: the dreaded individualized education program (IEP) meeting.

In my experience, IEP meetings tend to go one of two ways. Either the parents tries to convince the school that their child is struggling enough to require services, or the parent is told that their child is worse off than they thought. The parent then has to process the information and decide what kind of testing to allow and which resources to accept or decline. Either way, it’s not fun.

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Last week, I received notice that Austen’s IEP meeting had been scheduled. I knew it was coming, but my throat still sunk into my stomach at the thought of it. Austen’s first IEP meeting, when she had just turned 3, played out like the first scenario I described. I was able to get her into preschool with the help she needed, but it was an uphill battle convincing the district she really was delayed. 

But right after that meeting, our world fell apart. Austen’s seizures went from bad to worse. In six months, she went from a big seizure roughly every three weeks to up to 10 big seizures a day, with countless small ones in between. It was a terrifying time for us as parents, and we found ourselves on autopilot just trying to keep her alive. We couldn’t even think about whether she was on track academically.

In July 2019, Austen started Fintepla (fenfluramine), and slowly her seizures became less frequent. For the first time in more than a year, we found ourselves out of survival mode and able to assess the damage that all those seizures had done. We were happy to see that her regression was minimal, but we were also faced with the realization that Austen’s learning had almost completely stalled during those dark times, and she had lost out on about 18 months. We knew we had a long road ahead to get her caught up.

The following March, the pandemic hit, and our 22 months of home schooling began.

Given our history, it’s probably easy to see why I was worried. My degree is in elementary education, so I sometimes take Austen’s delays personally because I feel like I should be able to catch her up.

I braced myself for the worst. And while I did cry some, the meeting didn’t go as badly as I expected. Austen is now ahead in math, but she is still about 18 months behind in reading. She can’t write at all, which I knew, and her attention span in a classroom setting is nonexistent.

At the IEP meeting, I was impressed that the staff spoke with me, and not at me. Together, we decided that Austen needed to be moved into an extended core curriculum (ECC) classroom for part of the day. That way, she can get one-on-one help with her reading and writing, and they can also work on her attention span. For other subjects, she will be in a general education classroom.

She will have to attend a different school in the district, because her current one doesn’t have the resources she needs, but it doesn’t have to be a permanent move. There are different levels of ECC classrooms for kids with varying needs, and the goal is to fill in the gaps so that someday she can return to a general education classroom full time. In that case, she’d go back to her original school.

This is another battle for Austen to overcome, but it’s not the worst one she’s faced. Austen is a fighter. She always has been, and I know she’ll win this war eventually.

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.


Richard Poulin avatar

Richard Poulin

My wife and I are also educators and parents to a child with a rare disease. Today we had our IEP meeting with the team. You are so right when you wrote about how the meetings generally go. We were happy with the feedback and comments we received. I talked to each of the stakeholders asking them to give me one specific long-term goal that I can help support at home. We are also very hard on ourselves. At the end of the day teaching, we just want to be with our daughter and take off our teaching hat, so it was great to hear about the improvements she made during winter break with us.


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