"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.

Our Squad

Our Squad

Saturday, July 24, 2010

The R Word

Almost ten years ago, Garrett’s pediatrician told us the news that would change our family forever: “Your son was born with Smith-Magenis Syndrome.” In those first hazy moments, we did not understand the severity of that diagnosis. And then we read the list of symptoms. Ironically, the areas that most affect our lives did not sound so upsetting that day.

I glanced past “disturbed sleep cycle,” not knowing that a decade later our household would still be on a newborn’s time schedule. I skipped over “prolonged tantrums,” not knowing we would forever be parenting the “terrible two’s.” I didn’t realize that “self injurious behaviors” would produce a familiar, sinking feeling in my stomach every time I had to search his body for the source of all the bright, red blood. I didn’t understand that “autistic-like behaviors” meant something as small as a change in routine or an unexpected noise would instigate those dreaded “prolonged tantrums and self injurious behaviors.”

No, the words that stopped my heart that afternoon were well into the fourth paragraph. Mental retardation. I tried to read the rest of the information on that sheet of paper, a grainy faxed copy from a text book. Mental retardation. Mental retardation. I could not get past that phrase. Mental retardation. I could barely breath, much less utter the words. Oh my God. This could not be happening to us, to our son, to me. Finally, I took a deep breath.

“Is he retarded?” I managed to ask the doctor. I looked down at my baby playing on the floor. His blond curls and cherub face did not match the despair typed out in my hands.

“I don’t know,” the doctor replied. “I have never heard of SMS. The nurse is calling Children’s Hospital for an appointment in the genetic department. ” I now understand that most syndromes include a diagnosis somewhere in the mild to moderate retardation range, but I appreciate the doctor dodging my question. I was not ready to hear that my son was mentally delayed. Mentally retarded.

That was our family’s defining moment. The day we became different from all of our friends and family. That was the very instant we lost our adult son, the man we thought would be Garrett. Little league, driver’s ed, high school prom and college graduation were all past dreams. We lost our daughter-in-law and our grandchildren. The sadness was overwhelming.

I had dressed Garrett that morning in his baby Nikes and Blues Clues shirt while imagining him in his attorney suit or doctor scrubs. That night; when I laid him back down to bed, one question kept playing over and over in my mind: “Who is going to tie his shoes when I’m gone?” Everything had changed. And I could not stop crying.

But the pain did not end with the diagnosis. I was dumbfounded when I realized our son’s medical condition had become synonymous with a childish insult. Retard. I don’t have to wonder if I ever used this word before April 4, 2001. I have home videos where I did say it, off handily and without a care. The very term that caused so much anguish to me and my husband is a wisecrack, a joke. I was stunned to find it hurt so much. And I had said it a thousand times.

I was taken aback by own reaction to that flippant expression. At first, I thought I was being over sensitive. I had always considered myself compassionate and educated. I had never used the N-word. How had this hateful utterance slipped by me? A year into the diagnosis, I read a Dear Abby letter from a special education teacher urging people to stop saying the “R-word.” Finally, proof that it was not just Charlie and me who had felt this way.

I have heard the argument that political correctness has gone too far. And I agree the list of “bad words” has grown quite lengthy. If someone uses a race, religion or sexual orientation as a put down, then it is offensive to those in that group. And it should be. So, the list keeps growing. Our generation has witnessed the morphing of the medical term “mental retardation” into a slur. The phrase is being removed from state agencies and text books the way previous expressions have been erased. I remember a time when “crippled” was the norm, but I doubt my children have even heard that remark.

But the insult is greater than any one word. It is the act of belittling someone. I will not be satisfied to hear someone replace the expression “that’s so retarded” with “that’s so special needs.” I predict that “special needs” and “developmentally disabled” will be added to the list in another twenty years. So if “retard” is replaced on the playground with a new term that implies “person like Garrett McGrevy,” then it is going to hurt my feelings. And I am going to ask you not to say it. Hopefully, I will ask you calmly and rationally, but don’t be surprised by my tears and emotional display. It is difficult to remain calm about my son. I intend to protect him until my last breath as he will never be capable of protecting himself.

The true irony of it all is that Garrett’s IQ level is not an affliction. It is an arbitrary number that comes from a subjective test that does not measure Garrett’s genius. He can remember the name of every person he has ever met, as well as the make of their car and the color of their vacuum cleaner. But psychiatrists will never ask those types of questions because our society values other talents.

In reality, Garrett does not realize he is being insulted because he does not know such cruelty exists. But his parents and his brothers do know that words are powerful. Dear Abby’s yellow and torn response is still taped to our refrigerator: “Mental retardation is no laughing matter to parents, siblings and other family members of people who have it. To use the expression as a derogatory comment shows that the speaker is both ignorant and insensitive.”

At the top of this page is Garrett’s Miracle League picture. I am proud to say he plays baseball...and he ties his own shoes before every game.

Go to the r-word website to learn what you can do.
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