Waking up to the limitations of Testing Students in Special Education. It’s our Job, Our Responsibility and A Commitment to the future

The other night I was on the phone with a dear friend and colleague (Speech Language Pathologist) who was working on completing an “Evaluation” for a student on her caseload. This student was 10 years old and was diagnosed with Down Syndrome while in utero. The purpose of the evaluation was affirming her eligibility and gather information to create new goals for her Individual Education Plan.

The results of “standardized” testing did not provide very useful information. Seeing a child score below the 1st percentile on a test should be the first indicator that the testing was not a reliable and valid assessment for that child. I often hear that the child performed in the “low” range or “below average”. The observations my friend gathered during the administration were somewhat helpful, but administering test items about pictures without a context is not a natural exchange of information. She could see that the child knew information about the test items but it wasn’t exactly what was being asked of her on the assessment. It’s not that she didn’t know the answer, her focus was on different parts of the question. When we judge a response as right or wrong we miss out on what the child does that is relevant to the task. By looking back at the assessment and looking at her responses we were able to note where they would likely be confused by certain language or in fact not had experiences with the language we were using to assess her understanding.

As we discussed my friends frustrations of wanting to present the most meaningful and helpful information in her report, we realized that children who have received a diagnosis such as Down Syndrome have some similarities in their development and the tests that we “typically use” were not standardized on children with Down Syndrome. Our conversation continued to unpack the ways in which this child was being “served” by a system that did not understand who she was.

Our special education system puts children into groups and labels them, as does our medical system. It does not highlight differences and diversity. That is our job, our responsibility and a commitment we need to make if we are going to evolve as a society.

As a speech language pathologist I encourage others to understand the story of each child. When my friend and I went back and looked at this child’s story, from diagnosis (in the womb) and moving forward through her youngest years, we saw that she had experienced significant adversity. While being born premature or having medical conditions that require a newborn to be in the Neonatal Intensive Care Unit (NICU) , under lights and with tubes and intravenous injections, were not experiences on the Survey for Adverse Childhood Experiences, what we know about the nervous system and how the body recalls adversity, it is likely that these early experiences have triggered the fight, flight and freeze system and the overall regulatory system of young children. These experiences can look like anxiety and attention challenges in the development of young children. We see this bear out in the cognitive and behavioral evaluations when we take the time to put the pieces together.

In fact, the overall regulatory(brain and nervous) system of the parents needs to be considered here too. How is the Mom doing during this time? When a parent is told they will be having a child with Down Syndrome, they are likely more anxious during the birthing process, with lots of warnings about how this child may have physical and health challenges. Depending on the parent’s mental and physical health before, during and after pregnancy, the outcomes and attachment to the newborn child will vary. As special educators and speech language pathologists, and school psychologists, we need to understand the impact of healthy and strong attachment vs. challenges during the early attachment period. All of the emotions and regulatory functions of the parents and adults who interact with the child impact the newborn child’s brain development. Of course children are resilient, but mostly, only as resilient as the parent(s) or care givers are. They need at least one caring resilient adult to reshape their relational experiences. If the parent(s) are struggling with the acceptance of a child born with physical and developmental challenges, the child will feed off of that struggling energy. I use the word “challenge” intentionally so that we can reflect on the notion that challenges can be overcome.

Unfortunately, our brains often think in a fixed and rigid way and so when we hear a label we look for the things that identify with the label. I had that experience when discussing this child’s development with my friend. I went right into the “typical challenges” that children with Down Syndrome experience as outlined in the literature. However, instead of assuming the child has those challenges, I asked how they were doing in the different areas of cognition and language and physical development. Together we were able to put the pieces together to explain both why this child was so frustrated with her learning environment and acting out and how she prefers to learn. So often we diagnose the child with learning challenges, when in fact the system has a way of looking only at the challenges, which doesn’t allow the resilient thinking based on the strengths of the child. We also don’t look at the child’s relationship with the parents, especially during the important attachment period.

It is time for a change. It is time to change the way we “support” children by changing the way we think about them.

Children are humans who come into the world each with their own individual experiences. Their parents are also unique individuals who have had their own experiences. If we consider that the parents of children in school were also students in school who had their own experience, we can see that parents are often projecting their unhealed trauma onto their children. Sometimes that projection sounds like “I want my child to be better” and “sometimes that sounds like, “what is wrong with my child?”. It also might sound like “How can I make sure that my child is successful and not discriminated against?”. Check in with parents and learn more about their experiences in school and life so you can see who the people are that are shaping our young students experiences.

The most important thing we can do is listen to these parents with curiosity and without judgement. If something is coming up for you that is uncomfortable it may be time to take a look at your childhood experiences and how they have shaped the person and professional you are today.

So if you are feeling frustrated with the current Special Education Evaluation System and how the testing required is not giving you the information you need, or helping you to build relationships with parents, you are not alone.

While it may take time for the system to change, you can make the changes you need. You can provide the appropriate professional services for the children on your caseload by asking the important questions about the child and family history and by putting the pieces together with the parents so they have an opportunity to see their child through the same resilient eyes that you do. We are here because we want to promote child development, growth and learning. That means we have to develop, grow and learn new ways of doing things. It’s our job! It’s our responsibility and a commitment to our future generation!

For more information and coaching opportunities to develop questions and write meaningful evaluation reports and individual education plans, contact me at jessiegrahamcoach@gmail.com