Not A ‘Syndrome’ for My Son
By: Woody Brown Dec. 5th, 2011
When the hospital pediatrician hands your precious newborn to you and says, “We need to do a chromosomal workup. He has some markings for Down Syndrome;” down does not even begin to describe the spiral you fall in to. . .
My first response was, pray, pray, pray. And, after some research, I found out that the word ‘Down’ does not describe the condition of my child, but the name of the doctor who first described the condition.
In 1866 Dr. John Langdon Down linked a group of patients together who had similar physical and cognitive symptoms and began to study them. In the medical field a ‘list of symptoms’ is a ‘syndrome’. And thus was born Down Syndrome.
Almost a century later in 1956, it was discovered that the true common link between people with this list of symptoms was an extra chromosome in their DNA. The 21st Chromosome to be exact. And it was then called Trisomy 21.
Now almost half a century after that parents, doctors, researchers and geneticists are figuring out how to overcome the negative effects of the nearly 500 genes on this extra chromosome. We know enough now through Trisomy 21 related and unrelated research that we can better help the owners of these designer genes to reach the same potential as any other newborn child handed to their beaming parents.
My five year old son, Caleb Brown, has Trisomy 21.
I do NOT EVER say that Caleb has Down Syndrome. Most people have a pre-conception of Down Syndrome which is usually not favorable or accurate. Before Caleb was born, mine certainly wasn’t either.
However, at only 3 years old Caleb began to boldly display to the world that a cognitive deficiency was not in his list of symptoms. He chose to show us that he recognized with 98% accuracy every single letter of the alphabet – upper and lower case as well as the numbers 0-9. We had certainly not been ‘drilling’ him on the alphabet. But, he and his dad were playing on the floor one day lining up and stacking up his wooden blocks and knocking them over, when Caleb just started picking them up and naming every single one of them. We had no idea that he knew even one letter or number, not to mention all 26 and all ten.
Now, at 5 years old and only half way through kindergarten he amazes us and his teachers and therapists everyday as he continues to read more and more sight words and to sound out and place in missing letters when asked to. Here is a quote from one of his teachers:
I have always been impressed with Caleb’s personality and obvious intelligence, but working with him one- on –one has given me an insight into how capable he is in the academic spectrum. I work primarily with children with special needs, so when I started working with Caleb I had pretty realistic expectations. However, he not only surpassed my expectations but also is progressing well within typical ranges and in some areas excelling.
It is understood that a child with Trisomy 21 is a visual learner and therefore has natural ability to pick up on sight words. However, Caleb can sound out words and break them down phonically. He is able to problem solve using his phonetic skills. These skills have developed in just a few months! Not only is this a major achievement for a child with Trisomy 21, but it is a huge achievement for any kindergartener. His ability to learn at such a rapid pace is directly related to his ability to focus.
THE Travelling Tutor
Caleb Brown’s Private Tutor
As stated earlier a syndrome is defined as a “list of symptoms”. While I can no longer deny that Caleb has an extra chromosome in at least the cells that were tested, I can deny the symptoms. I am NOT claiming them and I am dedicated to helping my son OVERCOME them. The syndrome was named when we did not have the scientific knowledge to understand what was causing the symptoms nor did we understand how to alleviate the symptoms . . . . That was in 1866.
In 1956, it was discovered that an extra 21st chromosome was causing the symptoms.
Can we please, at least come into the 20th Century, and stop calling it a “syndrome” especially one with the negative connotation of the word “down”? Too bad the doctor who linked these symptoms together was not Dr. John Langdon Up. Or Dr. John Langdon Fabulous or even Dr. John Langdon Genius.
I advocate that we ask everyone to discontinue the use of the term ‘Down Syndrome’. A person with Trisomy 21 may or may not have each of the symptoms and it is spiritually ridiculous to claim the list of symptoms over them.
I will not declare the syndrome over my son and I would greatly appreciate it if everyone else would discontinue claiming it also.
PRAY AND TRUST GOD!
FAITH is not KNOWING that God CAN, But BELIEVING that He WILL.
I do NOT believe that God is the author of sickness, disease, injury or genetic disorders.
I DO believe that it is my job to help my son attain every single bit of potential that God intends for him to reach! We are overcoming the obstacles that Trisomy 21 has put in his path.
“Who can be against us, when God is with us?”
“ALL things are possible with God.”