The year is now 2002, the month November, and we have learned that our son has Klinefelter Syndrome, 47 XXY. Our doctor called and said, "Mrs. Fulton, are you sitting down?" "Yes, I am, Doctor." The Doctor said, "Mrs. Fulton, the test results have come in and Robert has 47 XXY; It is a chromosomal abnormality and I would like to tell you about it. Your son, has many of the challenges that others with the syndrome have and we would like you to meet with a geneticist to give you an idea of what you can expect." "Yes, Doctor, please make the referral and please spell the name of the syndrome for me. I will be doing some research, myself."
It seems like only yesterday, that I got that call. I had waited 7 long years to get this diagnosis and my hopes soared with the information that I gathered. Boys, like my son Robert were often immature for their years, often had speech challenges and difficulty in expressing their ideas. Many were described as good looking, tall and generous in spirit. This certainly was true of Robert, who had always impressed me with his good looks and compassion. With testosterone supplementation at puberty, they often became better focused, more at ease, and school work became easier for them. At the age of 11, puberty was around the corner, and with testosterone, hopefully, his troubles would soon be behind us.
I learned of a group of parents who had come together to support one another and the development of their boys with KS. I called the toll free number and talked to Melissa, organizer of the parent group and was delighted to hear that there was a Klinefelter Specialist in the Washington, DC, area. I called Dr. Samango Sprouse, the highly respected expert and she agreed to meet with me and my son the following month. More hope!
I knew that the school would be interested in knowing of this diagnosis and that I would want to share all I knew so that they could help us to help Robert. While the principal and teachers, were interested, they were not prepared to offer the help that the Klinefelter Specialist had suggested.
They had a suggestion, perhaps, a school for the emotionally challenged would be more appropriate for Robert. With a huff and more than a puff, I blew that idea out of the water.
I withdrew Robert from public school, enrolled him in Lindamood Bell for reading support and saw his reading skills increase with the one to one tutoring support. The intensity of instruction, proved to be too much after a couple of months and soon Robert was showing his frustration in emotional outbursts. I knew he needed to let off steam, exercise after a couple of hours and arranged to have personal trainer to come in to lead physical activities. This helped but was not enough and soon we were looking for another school.
We learned of a great school in Maryland about 1.5 hours from our home that specialized in helping children with communication challenges. Robert began taking the gel form of testosterone while still taking the ADD medication as his doctors tried to stabilize his focus and concentration. His endocrinologist was less than enthusiastic about the testosterone, fearing it would make him more agressive. When teachers still had concerns about his impulsivity, we tried Straterra and decided to stop the testosterone while we checked out the effectiveness of this newly released drug. We did not want to over medicate and since the endocrinologist was tentative in prescribing the testosterone, we stopped giving the testosterone to him. Looking back, that was another mistake...
Meanwhile, Robert liked his teachers and the shop class with hands on activities in Maryland. We got in a carpool and hoped for the best even though his school days were extremely long. Robert finished out his 6th grade there and when it was over, we assessed his progress and decided that a private school in VA specializing in helping children with learning disabilities might help and would certainly shorten his 12 hour treks going to and from school. With great hopes, Robert enrolled in 7th grade.
How many of you experience one step forward, two steps backward, one step forward and still believe in a ray of hope? What is the alternative??