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Living with Klinefelter Syndrome: Part 7

After completion of my second semester in the graduate program, I was urged to return to the Boston area.  Some of my former co-workers in the Boston area joined a new company with cutting edge technology.  They were working on a really cool program and thought I would be ideal for one of the roles.  Though I was happy in Baltimore, the company succeeded in me returning to the Boston area in October 1998.  A raise, a signing bonus and paying for my move in full was incentive enough.  Plus, I missed the comradery of the friends I had made at work in software engineering.

From my initial venture within the support network, I built up confidence with speaking to and counseling people with the condition.  Especially in talking to families with young kids and parents who had received a prenatal diagnosis.  Between starting that first support network in Boston in 1996 through now I have helped and spoken with thousands of families and individuals.  Assisting others individually, through groups and conferences has been some of the most rewarding work of my entire life.

I have always felt that parents who are finding out prior to the birth of their son or parents of infants or young children are very lucky.  When I talk to parents, the first thing I tell them is how lucky they are to find out so early.  They ask me why and I tell them that there is so much they can do to help their child have a great life.  Some parents do not find out until their son is much older or until adulthood. They are not able to help them lead the best life possible, nor help to understand why they had certain problems growing up.  This was my case. My parents never knew why I acted up at times growing up.  They never knew until my diagnosis occurred.

Those of you finding out now, can help! You can make a difference!!!

I have frequently been asked by parents, when is the right time to tell my son about Klinefelter Syndrome and the issues surrounding the diagnosis.  I generally tell them that their son probably already knows, he may feel awkward or different from his peers.  He may have learning differences.  May not be able to express how he feels or how to best interact with his classmates and himself.

My best advice to parents is from my heart and the way I felt growing up.  It is to be honest with your child about what he has.  Tell him in terms and ways he can understand and only what he can handle at his age.  I could sense as early as four or five years old that something just wasn’t right with myself.  I had a feeling in my gut that I tried to let go of, but it always followed me, at least until my diagnosis occurred.

While I was living in Baltimore from July 1997 through October 1998, and while assisting with the Philadelphia support group, I met a woman who was in the process of getting divorced and had a son born with Klinefelter Syndrome/47XXY.  She and I met initially when I was assisting KS&A exhibiting at an American Speech Language and Hearing (ASHA) national conference in New Jersey.  I needed assistance with three days of conference events and educational professionals at that booth.

She and I talked about Klinefelter Syndrome there and discussed her son and I with regards to the condition.  We continued to visit with each other at support group meetings in Philadelphia, New York, and Silver Spring, MD and became friends.  In the Summer of 1998, she and I both attended the national conference in Torrance, California.  We became closer and developed a more intense friendship that started to become more.

In October 1998, I found an apartment in Chelmsford, Massachusetts, as my job moved to Westford, Massachusetts.  I started working again with former co-workers as something above a Junior test engineer with some experience under my belt. I had some knowledge of what I was doing and with testing going forward.  This position had me with a new team and I didn’t feel as nervous even though it was a new experience and change.  Maybe it was because I wasn’t truly new to this field. Or, maybe, testosterone therapy was significantly helping me to feel calmer in my new role.  In any case, it was a welcome feeling being back in the Boston area.

At the 1998 national Klinefelter conference, Baltimore, Maryland was chosen as the next city for the 1999 national conference.  My mother and I were designated as the chairpersons for that conference.  She and I put our heads together and started planning for the conference the following year. Meanwhile, as I moved to the Boston area again, we were still very much in the early stages of conference planning.  We had a tight budget that was never fully disclosed by the national organization.  We found a downtown Baltimore hotel and planned the conference over the Fourth of July weekend in 1999.  It was an amazing celebration with many wonderful speakers and over 200 attendees. This was the largest attended conference to date and the 10th anniversary of KS&A.

At lunch during the first full day, Dr. Harry Klinefelter’s son, Stanard, gave a personal perspective of his father.  Since this conference coincided with the 10th anniversary of the KS&A organization, it was appropriate to have Mr. Stanard Klinefelter here to share family information about his father – whose name is synonymous with the condition we share.

The 1999 national conference was an amazing accomplishment that my mother and I worked on tirelessly for many months and all came together as a wonderful event and successful compilation of our efforts.

Continued in Part 8: Living with Klinefelter Syndrome

Back to Part 6

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