Why I Stopped Caring About My Daughter’s Assessment Scores

While raising my 13-year-old daughter, Cammy, who has special needs, I eventually stopped caring about test scores, regardless of whether they probed educational levels or motor skills. This has helped me to focus on her as a person as well as on her progress.

This strategy has been the most liberating part of attending individualized education program meetings and medical appointments. I go in with an open mind, ready to listen to positive developments and see what we can do to ensure that she’s happy and successful. I stopped comparing Cammy with other kids her age years ago.

Because Cammy has Rett syndrome, she was delayed in developing as a child after her first few milestones, and then she experienced regression, a progressive loss of previously acquired skills or milestones. While she could roll over at 6 weeks and sit up independently at 6 months, she could no longer do either of those by her first birthday. She was losing the skills she once had.

At 18 months old, it was obvious that she was far below the average in speech, fine and gross motors skills, and overall development. While sitting through countless hours of therapy during Cammy’s early interventions, I constantly witnessed her delays and deficits. I didn’t need data to be collected to see how far below the average she had fallen in every aspect of growth and development.

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All of this took a toll on me mentally and emotionally, as I weaved in and out of the various stages of grief. I needed to change my mindset about all of the physical and developmental scores, charts, and data.

The pivotal moment for me was in 2011, shortly after Cammy was diagnosed with Rett syndrome. Around her second birthday, the physical, occupational, speech, and developmental therapists all had to assess Cammy.

These incredible women have come into my home a couple times a week for years and have become like family. They love my child as if she were their own. They were present during Cammy’s diagnosis. They’ve seen the best and worst in my parenting. And all they want is to see my child progress and thrive.

On the day in question, the occupational therapist (OT) was conducting a fine motor assessment of Cammy to determine how her development compared with other children her age. I knew Cammy wouldn’t be able to perform any of the tasks in the assessment, such as picking up objects and using a pincer grasp. Rett syndrome had taken away Cammy’s ability to purposefully use her hands.

After just a few questions, our OT became frustrated and threw her clipboard across the room. She wasn’t upset with Cammy, of course, but with the concept of assessments in general. She looked at me with tears streaming down her face and apologized for behaving so unprofessionally.

I hugged her and told her that it was OK. She blurted out that she hated the “stupid tests.”

“It doesn’t show all her effort,” she told me. “I know she’s smart. I know she wants to do these things, but her body won’t let her.”

I hugged her more tightly and said, “It’s OK. I don’t care what these scores are, and you shouldn’t, either. We’re going to keep giving her an amazing quality of life, surrounded by people who love her.”

Note: Rett 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 Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.