NICU Parenting   
The Emotional Journey

 Developmental Evaluations

Evaluating Developmental Evaluations
of Your Baby or Child
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The quality of developmental evaluations—and evaluators—can vary widely. As your child’s parent and advocate, it’s important to be aware of what makes an evaluation more likely to be accurate, rather than misleading.

     A meaningful and accurate evaluation involves a number of different measures, assessment tools, and sessions. Activities can include

·         Looking for patterns in your child’s behaviors

·         Observing how your child spontaneously interacts with caregivers

·         Noting how your child spontaneously plays with toys he or she finds interesting

·         Consulting with caregivers, teachers, and others involved with your child to assess their experiences, observations, and evaluations

·         Exploring how your child takes in, processes, and responds to stimulation

·         Noting your child’s specific strengths and weaknesses

·         Formulating a treatment plan

 

     Other aspects of an accurate and constructive evaluation include the following:

·         Along with a clear and meaningful diagnosis, a topflight evaluator will also provide parents with affirmations. Most reassuring is when a specialist can say to a parent, “Your observations are in line with mine and consistent with this diagnosis. There is nothing you could have done to cause your child’s condition or behaviors. This is nobody’s fault.” When a professional gives you these messages, even as you are first hearing a diagnosis, your predominant feeling may be relief. You may think: “I’m not crazy, I’m not making things up. Not only is there a name for this, but it’s not my fault. And my child isn’t the only one who has it.” Referrals are made with respect to your ability to take in new information and act on it in the best interests of your child.

·         Competent evaluators predict a child’s future with great caution and sensitivity toward the parents’ feelings. They generally provide a range of possibilities. If the evaluation results must dash certain expectations, the evaluator offers new expectations to take their place.

·         A thorough evaluation includes the opportunity to discuss findings, ask questions, and raise any doubts. If the evaluation turns out to be accurate and surprising in ways that are painful to you, the evaluator should take the time to listen to your feelings and be responsive to your requests for more information. If there are unfamiliar terms; ask for clarification about words or labels that concern you. Also note that evaluators sometimes use terms for the sake of “the system”—to ensure, for instance, that health insurance will cover the recommended treatments.

·         A good evaluation is holistic—that is, it looks at the whole child and the big picture. Some assessments may focus on what is delayed, disabled, or “wrong,” but an accurate and effective evaluation also assesses and acknowledges a child’s strengths and overall adjustment. This type of information can be immensely reassuring to parents. A good evaluator recognizes that there is a person inside the little body that is being examined and tested, and also acknowledges a family’s strengths and coping abilities. Even in the face of devastating deficits, these affirmations can strengthen your hope and your confidence.

·         Along these lines, another mark of a good evaluator is when he or she sees your child as a precious human being. Whether your pediatrician takes the time to cradle your baby, a therapist connects emotionally with your child, or a specialist gives your kid a warm hug, you may be struck by their kindness and caring sensitivity. Knowing that someone else values your child can warm your heart and calm your fears.

 

Unfortunately, some evaluations do not present an accurate portrayal of a child’s abilities, strengths, and weaknesses. For example, some specialists evaluate a child by spending a limited time administering tests that aren’t much fun or interesting. Then, when the child doesn’t cooperate, smile, interact, sustain interest, and so on, they may proclaim that the child has pervasive delays and autistic tendencies. At the other extreme, a variety of specialists each evaluate only one small piece of the child and, without seeing the big picture, assess the child’s performance as “good enough.” For the parent who senses a problem, it can feel frustrating to be handed a stack of “good-enough” assessments.

 

In general, seek another opinion if you believe that

·         Your child was assessed in a way that did not allow an accurate display of strengths, weaknesses, and behavior patterns

·         Your child’s diagnosis is based on information collected under conditions that were stressful, uninteresting, unfamiliar, inappropriate, or unnatural for your child

·         Your child isn’t viewed as a whole, where all areas of development are considered together

·         The evaluation does not point to specific plans or referrals for treatment that can be tailored to your child’s unique strengths and weaknesses

·         The evaluation is based on how your child interacts during one session of standardized testing

·         The evaluation does not take into account your observations

·         A diagnosis places your child in a category that explains only one of many aspects

·         A prognosis is based solely on images of your child’s brain

 

For many children, one evaluation or one session may not reveal enough or get to the crux of the matter. If an evaluation, diagnosis, advice, or treatment plan doesn’t feel right to you, question it. Ask for clarification and elaboration. If a specialist can’t answer your questions or tolerate your doubts about an assessment, find another professional to help you. If an evaluator offers no answers or no hope, get another opinion.

Remember that you know better than anyone what is going on with your child. You are in the best position to differentiate between a problem that must be dealt with to help your child grow and adjust, and simply a different path that your child is taking to get where he or she is going. When teachers or specialists offer assessments that differ from yours, examine their views with an open mind. Don’t, however, let their opinions make you doubt what you know, and don’t ignore what your heart, gut, and intuition are telling you.

If you are having trouble getting pracitioners to see your perspective, videotape or audiotape the things about your child that you want them to see. Share your observations and interpretations. Find evaluators who understand that some of the most valuable information about a child comes from the parents’ observations, as well as those of teachers and other caretakers. Also obtain the opinions of trusted specialists who already know your child. Ask them for their insights and use them as sounding boards for your questions about completed evaluations.

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