It’s Just A Number…Right?
The day that I learned that Sydney had a genetic syndrome I was immediately preoccupied with what her IQ was going to be. At the time it seemed to me that this number would be the great determining factor as to whether she would be ok or not. Unbeknownst to me at the time an individual needed to be at least 5 years old before you could even try to get an IQ score. So for nearly 4 years I have been waiting to find out what this magical number would be. Ironically before her diagnosis I never gave much thought to anyone’s IQ and honestly never really appreciated its true meaning.
Tomorrow I will be finding out what this number will be. Although I thought it was something that I wanted and even needed to know, now I am not so sure. After living with and learning about genetic syndromes, cognitive disabilities, and specifically Smith Magenis Syndrome, I am not entirely convinced that this number will tell me anything that I was hoping for.
Before Sydney I would have thought that a persons IQ would determine whether or not he or she would be productive, successful and independent. Before SMS I would have assumed that if an individual had a low IQ they would likely be uneducable and would be destined to focus all of their limited capabilities on learning basic life skills.
According to the law today an individual with an IQ less than 70 is considered cognitively impaired. However, after doing a little research of my own, I learned that prior to 1973 an individual with an IQ less than 85 was considered cognitively impaired. I find it interesting how arbitrary this number can be and more importantly what is it actually predicting. For many it helps measure ones reasoning skills and intellectual abilities. However for someone like Sydney I believe that figuring out what she is actually capable of accomplishing is a lot more complicated than that.
I mentioned once before that shortly after Sydney was born I had spoken with two women who were very familiar with Smith Magenis Syndrome. They had two decades of experience working with individuals with this disorder and offered me some very valuable insights. My main concern at that time was what her IQ would be. They began to explain to me that her IQ would not be her greatest limiting factor in her life; rather it would be her social and emotional development. Her maladaptive coping mechanisms for stress would impair her more than any low IQ scores. At the time I listened to what they were saying but it took me almost 3 years to really appreciate its meaning.
Tonight as I contemplate the benefits of finally knowing Sydney’s IQ score, I am actually considering not finding out. It seems to me that knowing that score would not alleviate any concerns or fears I have about her future. It would not offer me any insight into whether or not she will lead an independent or productive life. In fact it really will not answer most of the questions that I had almost 4 years ago.
For instance if her IQ turns out to be 100, which is considered average, she will still have SMS. Even with a high IQ she is still missing a vital Protein called RAI1, which is essential for proper brain development. Her emotional and social development will continue to be a major area of concern. On the other hand if her IQ is 30 it will not take away from all of the things she has already accomplished. Sydney will still be the bright, witty, loving yet developmentally delayed child she has always been.
I have come a long way since that evening I spent at the neurologist’s office demanding a diagnosis. Today I have come to understand the difference between information that is useful and that which is useless. I have finally removed my SMS glasses and I have no intention of replacing them with IQ glasses. I don’t want to blur my vision with a score that will either deflate me in the present or provide me with unrealistic optimism for her future.
When the opportunity is finally in front of me to hear the results, I am confident that I will know in that moment what will be right for me.