According to the literature, most children born with Warburg Micro Syndrome have a severe to profound intellectual disability.
This means that according to standardized testing, our children perform much lower than the norm. This can be very disheartening to hear.
My experience is this: Testing is done for classification purposes. Because our children have physical and visual deficits, it is very difficult to accurately assess their abilities and understanding using standardized testing. In addition, IQ testing relies heavily on verbal ability.
MaryEllen and Kevin have been tested many times throughout their lives. They have always tested in the profound range, which is an IQ of less than 25. What does this mean? In reality, not much. I don’t put too much emphasis on the results. It doesn’t change who they are (and qualified them for more services!)
Even though MaryEllen’s and Kevin’s test results show a profound intellectual disability, it doesn’t measure what they know in real life, day-to-day experiences.
Both children understand almost everything. Even though they are not verbally expressive, they do show understanding by appropriate responses to situations.
Because of their physical and visual limitations, they require full assistance with all activities of daily living. They are completely aware of their surroundings and know and remember all the important people in their lives.
The test results don’t change who they are and they do not indicate their high level of awareness.
It is unfortunate that a parent’s input is not reflected on testing results. I can easily say that MaryEllen’s and Kevin’s understanding of their world is that of a 9-15 year-old. Testing does not reflect anything near this.
For more information about Warburg Micro Syndrome as it relates to MaryEllen and Kevin, please see The Warburg Micro Syndrome Series 2016.
If you have any questions about anything related to cognitive development in Warburg Micro Syndrome, please leave a comment, and I will be happy to answer.