Wyatt is a happy 19-month old child who was recently released from the hospital, where he lived for the first 17 months of his life. Wyatt was born very prematurely and has been diagnosed with a visual impairment and cerebral palsy. You want to conduct an assessment to learn about Wyatt’s strengths and needs, especially related to communication, which is a priority for his family. When you look at the assessment tools, you worry that Wyatt is likely to score much lower than his chronological age. You wonder – Is this is good test to use? How do I get meaningful information that will help our team write good goals?
Thinking Beyond the Test Scores
From experience, we know that young children with multiple disabilities often perform much lower than their chronological or adjusted age on our developmental assessments. We walk into an assessment bracing ourselves for how to tell a family that their 19-month old son has the skills of a 4-7 month old infant. We struggle because we don’t want to hurt a parent’s heart with this difficult news. We also struggle because I think, on a deeper level, we realize that this information really isn’t all that meaningful. While we can quantify that Wyatt can or cannot do certain tasks on the test, we also know that qualitatively, Wyatt has had more experiences than a 4 or 7 month old infant. Wyatt may be just starting to roll over, hold a toy, and make babbling noises but he is not an infant.
Establishing a developmental age is something we have to do when children enter EI and annually to help us track progress. We can’t avoid it, and shouldn’t, because it is helpful when considering what will come next developmentally for Wyatt. Perhaps our more important task, then, is to think about how to gather meaningful information about Wyatt’s functional abilities, including how he communicates and engages others, acquires and uses knowledge, and takes actions to meet his needs.
Tips for Assessing Young Children Who Have Multiple Disabilities
I recently came across a great resource that prompted me to think more deeply about how we assess very young children with multiple disabilities: Assessing Communication and Learning in Young Children Who are Deafblind or Who Have Multiple Disabilities (Rowland, 2009) (PDF, New Window). This document includes some great tips that we could use if we really were conducting Wyatt’s assessment, such as:
Plan for extra time – It takes time to get to know the child and learn how to read his cues, how to position him, how to offer assessment materials, etc. Assessing Wyatt would involve more than observation and conversation with his caregivers; it would also be a process of experimentation to figure out what he can do and how to support him in doing it. Wyatt may also need extra time to complete activities and/or extra rest time between them.
Select appropriate assessment tools – Look for tools that include info about how to adapt assessment items for children with sensory or motor disabilities. The Carolina Curriculum for Infants and Toddlers and the Assessment, Evaluation, and Programming System for Infants and Children (AEPS) are two examples.
Gather information about Wyatt’s everyday life – Prepare a list of specific questions you want to ask, such as:
- How does Wyatt react when you talk to him?
- What cues do you notice that tell you what Wyatt wants/needs?
- What does Wyatt like to do/not like to do?
- How does he use his vision?
- What would you like for Wyatt to be able to do?
- What would make things easier for you/for Wyatt?
Ask the caregiver to “show” you how she plays with Wyatt, positions him, and engages him. Find out about Wyatt’s interests, preferences, what motivates and alerts him, and what tires him out.
Do a “head to toe inventory” when assessing communication – Look for the child’s movements, reactions, and sounds and consider which appear to be voluntary and which have communicative intent. If you aren’t sure, keep observing throughout the assessment to see if you notice the behavior or sound again. Watch for patterns and take careful notes.
Always assess sensory and motor skills too – The presence of hearing, visual, and motor disabilities will affect how Wyatt communicates. He could have cognitive skills closer to his adjusted age, but his difficulties with movement and vision could make it really hard for him to show you what he knows.
Rather than approaching Wyatt’s assessment with the worry that he’ll score low, the author of the resource encourages us to approach it as a “process of discovery.” You will use all of your tools – the test results, specific observations, conversation with the family, insights from other team members – to try to discover what Wyatt can do now and what comes next for him. Helping Wyatt be an active participant in his daily life is our goal, regardless of whether his skills are at the 4-7 or 19-month levels.
What strategies do you keep in mind when assessing an infant or toddler with multiple disabilities?
How do you share assessment info with families?
Add your comments below!