Dealing with Negative Reports and Evaluations
We've all been there: your child is evaluated for school or services by a healthcare professional and you receive a report detailing your child's abilities. There, in black and white and excruciating detail, is a complete description of all your child's delays, difficulties, and faults. It stares you in the face, making what had been deniable completely undeniable.
Even when you know in your heart exactly the strengths and weaknesses your child possesses, seeing them spelled out in front of you can be unbelievably difficult and painful for a parent. While this is truer for parents new to the special needs world, the sting can persist for years, even when the same information is presented over and over repeatedly.
My daughter is six years old, and even though her motor skills have not changed since she was about a year old, I still cringe when I read some of her reports. Recently I was glancing over her school IEP and read one of those classic statements: "Her gross motor function falls into the level of an infant less than three months of age." Even though I know she is never going to walk or sit or likely make any progress with her motor skills, these sorts of statements still annoy me.
Fortunately, I have gotten over the pain that statements like these used to cause me. When she was an infant and toddler, reading sentences that compared her to a newborn in development caused me physical revulsion. I felt butterflies in my stomach, tears in my eyes, and emotional pain deep within my heart.
The Emotions of Negative Evaluations
I've identified some of the emotions that made reading negative evaluations so painful, at least for me. One of the major ones for me was simple acceptance. I did not want to accept that my child was never going to be able to sit up or talk. I did not want to accept that she would never progress any further with her motor skills. Until I reached a decent level of acceptance with her condition and illness, reading statements like these just made me ache. It probably took me three years to fully get to that point, and I know it can take a lot longer for some other parents.
A second strong emotion I experienced was a forced affront to my own denial, which I had been using as a coping mechanism. Seeing a negative evaluation there in writing--that she had not progressed, and would not likely progress--made it impossible for me to deny any longer the truth that I knew but did not want to see. I had to face it head on. This is how things were going to be, so I had better just get used to it. This, of course, took time, but eventually I did get there.
Another emotion I experienced was guilt and a sense of personal failure. Early on, I felt like if I just worked with my daughter enough, brought her to the right therapists, and pushed her appropriately, eventually she would master pretty much everything. This is America, after all, and anyone can be anything if she is just willing to put in the time and hard work.
It turns out that hard work cannot necessarily overcome a severe brain injury or illness. Neither can the best trained and most experienced doctors or therapists. Sometimes things just are the way they are, and while you can make the best of them, you cannot necessarily fix them or resolve them.
When my daughter was young, every report that showed her lack of progress was a personal affront to me. We were working so hard, every single day, so why wasn't she making any progress? What was I doing wrong? How was it humanly possible to sleep less, eat less, or breathe less so I could work with her more? I took her lack of progress as a direct criticism of my abilities as a parent.
Ultimately, I finally was able to accept that the failure was not mine or a result of my parenting at all, but simply an impossible illness that no one can change, given our current medical treatments. This acceptance was not only helpful to me, but it also brought greater peace to my relationship with my daughter. She was there to be loved as she is, whether she can walk, sit up, talk, or eat. I did not need to spend all my time trying to "fix" her. And I definitely did not need to feel like a failure when it turned out "fixing" her was never going to happen.
Strategies for Handling Negative Evaluations
I developed some coping mechanisms and strategies for handling negative evaluations. Many of these I only needed to use for a short time period until I was better able to accept her condition, but some I still use today.
Eliminating Quantitative and Comparative Terminology
The first strategy I used was very simple: I requested that her therapists and doctors refrain from using quantitative or comparative terminology. By "quantitative and comparative," I mean those statements such as, "has the receptive speech of a nine-month-old," or, "his cognitive level is approximately that of a two-year-old." No one wants to hear this, even if it is true. We know our children are delayed, and quantifying the delay only makes it hurt.
In most cases, I was able to request that her evaluators use narrative and qualitative descriptions of her strengths and weaknesses. These descriptions, which simply stated what she could do, as well as her strengths and weaknesses, were much easier for me to stomach early on.
Focusing on the Positive
So much of the time, these reports focus on what the child can't do instead of her strengths and abilities. Even if negative information must be included, beginning with a list or description of the child's strengths and abilities can soften the blow of the negative portion of the evaluation. A good evaluator should include these strengths, and as a parent I would try to focus on those. Each ability, strength, or bit of progress was worth celebration and recognition, no matter how small.
Many parents of children with special needs like to use the term "inchstone," or those tiny steps forward that may not be true milestones, but are worthy of recognition. I have always tried to extract the inchstones from these reports and celebrate them.
Turn the Negative into a Positive
You can choose how you want to interpret negative information. While most of us have the initial reaction of depression or sadness, you can instead view the information as a plan for improvement. In that way, negative information becomes what your child needs to work on, and you can create a plan of action to turn those negatives into positives. If your child's behavior is criticized as unruly, you can use that information to help you set more boundaries and implement a positive reward system. Instead of fixating on the negative, use it as an impetus for improvement.
This, of course, is not always possible, especially with children who have degenerative conditions. But when at all possible, don't take a negative evaluation as a criticism of you or your child. Instead, view it as a springboard for positive change.
Sometimes it is best to just file the reports away and not read them. Or perhaps just set them aside for a few days, weeks, or months until you feel like you can handle them. You don't have to know every detail of every evaluation or report, as long as you know the recommendations that have been developed based on the evaluation. Put the recommendations into place and don't worry about the language in the evaluation until you think you can handle it.
Acceptance Over Time
For me, the ultimate solution was simply time. As my child grew, I was able to accept her condition and her limitations. Reports and evaluations that would have put me into a state of terrible sadness just a few years ago no longer bother me. While acceptance comes at different times and different ways for each parent, it will eventually help you to deal with negative evaluations.
Dealing with Inaccuracies
It is possible, and in fact common, for reports and evaluations to simply be wrong. Don't get yourself down in the dumps if something you read does not ring true. A recent report about my daughter stated she had an emerging understanding of cause and effect. She had an emerging understanding of cause and effect as a two-month-old infant! But during the time of the evaluation and in the presence of the evaluators, they saw only an inconsistent response. Perhaps my daughter was tired that day. Or maybe just stubborn.
In any case, don't let these sorts of statements bother you. Instead, seek out additional evaluations or documentation to support what you know to be the truth.
Evaluations are a Part of Life
Whether you have a child with special needs or not, evaluations are a part of daily life. We are evaluated at work, at school, and even informally by our friends and families. It is something we need to learn to deal with, whether we like it or not.
Sometimes after a particularly awful evaluation I have found myself sitting down, having a good cry, and taking out a sheet of paper. On it I write five wonderful things my child did that day, even if they are tiny little things. It really helps to get me out of a funk and feel positive about my child and her progress.
You will find your own ways to deal with evaluations, accept your child, and cope with your emotions as a parent of a child with special needs. Don't let the simple words of a negative report overwhelm your love for your child.
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