Is standardized testing a good choice for my child with Dravet?

Disappointing practice test results leave me unsure what to do

Meagan Cheney avatar

by Meagan Cheney |

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A couple months ago, Austen, my 8-year-old with Dravet syndrome, participated in a series of practice tests to prepare for our state’s standardized testing. We recently got the results.

I’d originally had a few concerns about Austen taking the tests. She’s reading, loves math, and is doing great compared with where we thought she’d be at this age, but she’s still not performing at grade level. I knew the practice test results would provide data to add to her file, and I knew the school had worked hard to help Austen view the tests as a game so they wouldn’t distress her.

Still, I was the one distressed by her results. She was nowhere near grade level in either math (24%) or reading (33%). A 48% score would mean she’s “approaching grade level.”

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I’d thought I was prepared to see those kinds of scores, even though Austen has come so far in the past few years. She went from being in a special education classroom full time to spending part of the day in a general education classroom. Now she’s in general education full time and gets pulled into the resource lab only for her core subjects. The books she’s reading have become bigger and more complex. I’m so proud of her.

But seeing the scores there in black and white hit me like a ton of bricks. It’s one of those moments when I realize just how unfair life can be, that Austen can make so much progress and still have such low scores.

A tough decision

I don’t know if it’s because the knowledge isn’t there (Dravet syndrome is known to cause a lot of learning difficulties) or if Austen’s attention span isn’t long enough to handle the test. I think it may be a little of both. The teacher who administered her test did mention that when Austen was tired, she’d start to click through the questions, even after they took a break. The scores therefore may not show an accurate picture of her knowledge.

But even if that’s the case, I’m left wondering if it’s fair to make her take the test. If she doesn’t have the attention span required, is it worth it? Is it fair to make her sit through a test that I know she’ll be unable to complete?

As I’m writing this, I’m still unsure of the answer. Austen is slated to take the actual state test in just a couple weeks, and I’m heading into it with a sense of dread. As a parent, I feel like a failure when her scores aren’t as high as the world thinks they should be, and I feel guilty for making her sit through it.

I guess it’s just another one of those things I have to pray about and trust that God and Austen will guide me in what to do.

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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