let me know what you think
I do not know where to begin but because there are so many persons affected by Tourette Syndrome, I will try to explain my predicament. My son who is 32 years old is where my story begins. From a very early time, we sought help with our son, when he was 2 years old we discussed his behavior with a Child Psychologist and were given the diagnosis of “stormy personality.” We were told we would have to learn to live with his disruptive behavior and his other odd symptoms. Later we sought out several different Therapists to help us understand and to help our son with his struggles. However we never got a diagnosis we were just placated so they could get us out of the office. At the age of 9 years, I turned to a doctor that dealt with allergies. I was told by this doctor that “if Mother thinks there is something wrong” we will do some testing. We suffered years of stress and aggravations with our son still struggling through his childhood building memories that continue to haunt him. His childhood was filled with sorrow and confusion, which has led to chronic depression. He was unable to leave home until he was 28 years old. At the time, very few Doctors had the expertise to diagnose or assist us to understand my son’s behavior. I knew throughout my son’s life that he was not a normal child but because of the lack of education of doctors, nurses, therapist, teachers, and others that should be trained in the Signs & Symptoms of Tourette Syndrome, my son did not receive the diagnosis in a timely manner. He is still working through the trauma of growing up without a diagnosis. When my son turned 10 years old, his tics and vocalizations became so severe that our Pediatrician finally gave us the diagnosis of Tourette Syndrome. Unfortunately, there was very little information published dealing with T.S.; I went to a local college and hospital medical library to obtain information so that I could understand and finally begin to help my son. I only found a copy of a Magazine article that vaguely described T.S. What did change my life was while visiting his first Physician – a child Neurologist I discovered a 3x5 card with the phone number of our State Tourette Syndrome Association. Finally, after 10 years of unyielding struggles I found someone that understood my son and why he was doing what he did. Education was and still is the MAJOR core idea of this association (Pennsylvania Tourette Syndrome Alliance). As I said, my son is 32 years old and still struggles with T.S. but because of the assistance of all the organizations that care for children and adults BLAST, PARENT to PARENT, Center for Disability Services and others that now exist our journey has been made easier. However, we need to grow and advance in the field of medicine that deals with the Tourette patient as a whole. We cannot have a narrow vision- seeing only “a cure” for Tourette Syndrome or honing our skills on finding the “Gene” so we can eliminate those with “the Gene” from ever being born.
My son’s needs are going to continue, his Tourette Syndrome will last a lifetime. Sadly, both my son and daughter are very reluctant to have any children of their own because of the experience we had obtaining help for our son’s medical and psychological care. What does that say about our society that our children fear what should be the greatest joy of a person’s life. I must add that my son has stated he knows that Tourette Syndrome has made him the person he has become. He is an artist; he uses his art to express his inner demons.
What I want is a system that strives to have early diagnosis, Doctors, and counselors to aid the family so everyone can understand why the child behaves in a specific manner. A way to educate those who will come in contact with those that are given the Tourette Syndrome diagnosis- family, teachers, other children, health care workers, law enforcement and so on. Diagnosis, education, and treatment for those that desire help.
1 comment:
Seems clear and to the point.
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