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From Turner Syndrome to Autism


When one becomes a teenager, they begin to think of dating, hanging out with their friends, and going to a movie on a Friday night. The thought never seems to enter one’s mind, at this stage in their life, that never having one’s own children could later become an actual reality.

Well, this actually did become a reality for me by the time I graduated from high school in June of 1980. This was an extremely frightening and scary world for me, and one that I thought in my heart I would never have to face. Here is how the world of infertility actually began to unfold for me.

When I was thirteen years old, my mother took me to our family physician in Concord, California, and he brought forth to my mother the idea that I was possibly a “late bloomer,” since I had not started to menstruate by that time. I had always been of small stature and extremely skinny and low in weight. I remember our physician saying that “she has some development,” and when I think back now this is why he thought there was nothing wrong with me.

By the time I reached the age of 17, my mother and I made the trip to Travis Air Force Base in Fairfield, California, and I was seen at that time in the adolescent clinic. I received every test imaginable, which included everything from x-rays to the blood test known as a karyotype, which is the particular blood test that looks at the cells of one’s body when there something genetically wrong suspected. I remember having to wait about a month or so for the test results to come in, and then my mother and I set out again for Travis to receive the results.

When the doctors came into the room, they shared the determination of the blood work was Turner syndrome. My mother and I had never even heard of this genetic defect until that day. The hardest part about the diagnosis at that point in time, was the way that the doctors explained it to me.

What took so long for my diagnosis . . . well, you see, I was born in 1961.

I went through the next ten years without even having one single date, and then finally in November 1991, I met my future husband in church one evening. We were married in June 1993, and then, finally, in February of 2002, we joined a local nonprofit adoption agency and began the process of what is known as an “open adoption.” An “open adoption” is where the birth mother actually chooses the family for her newborn, and meets the perspective family in what is known as a “match meeting.” We completed all of our paperwork, website, etc., and now the rest was the process of waiting.

In September of 2003, the agency had us update our physicals. Our adoption was put on hold because my husband’s physician would not physically clear him for adoption because of his diabetes. Finally, in January of 2004, his physician wrote the clearance letter, and we were placed back in the pool of perspective parents.

I had not even had the chance to finish updating our “Dear Birth Mother" letter when we received a call from the adoption agency. The baby was due on February 15th from what I can remember; however, our Andrew decided to come about a week early. Andrew Phillip Morris was born on February 11, 2004, at Summit Alta Bates in Oakland, California. From the moment he was wheeled in front of me in the nursery, my heart melted! We met the birth mother and her family shortly after he was born, and over the next two years, we saw them on many occasions.

At the age of 2, Andrew was diagnosed with autism. His pediatrician started asking me developmental questions, and it was at this point that she decided to have him evaluated by the North Bay Regional Center located in Napa, California. There are various regional centers throughout the state of California, which are responsible for advocacy for such individuals as Andrew. It was at this point my world-wind life began.

In February of 2006, Andrew became involved in what is known as the Early Start Program for children with developmental issues. Andrew had various types of therapy sessions almost every day of the week. By the end of the week, I was exhausted. Andrew eventually entered the Fairfield-Suisun Unified School District, and started special education preschool. He has continued on throughout the school district to where he is now in the 8th grade at David Weir Elementary in what is known as a functional academics class. In August, Andrew will be moving on to Fairfield High School as a 9th grader!

The past nine years have been extremely stressful, and yet at the same time, a very unsure time in my life. Autism with Andrew has had its challenges, and each and every day is a new learning experience. My warmhearted son has become the light of my life and filled every empty spot that needed to be filled. I guess that one could actually say that I went from TS to autism, because now I advocate for the needs of my special needs son. However, the one suggestion I do have for those who are considering adoption is that you inquire about what is known as the Adoption Assistance Program, which is a program that provides monetary assistance for those adoptive parents of special needs children such as my son.

I love my son with all of my heart and soul, and he is God’s greatest gift to me. It has been a long and precarious journey to parenthood; however, my fellow butterflies, this butterfly would not change it for the world. My son tells me about 20 to 30 times a day that he loves me, so who would trade that one! My dearest butterflies, there is hope out there for all of you, because I know now that I found what my soul was searching for all of those years . . . My soul child.

Rosemary serves as an at-large member of the Board of Directors of the Turner Syndrome Society of the United States in an elected position representing women with Turner syndrome. She has been a dedicated volunteer and mentor for decades. She started the TSSUS Northern California Resource Group, and serves as the group leader - often expanding TSSUS innovative programs across the entire state of California. TSSUS TS Days, a new national program introduced in 2017, were modeled on a program Rosemary and her local team first started with the local group in California. Rosemary is the host and organizier, along with a dedicated team, of the Sacramento Chasing Butterflies Walk for TSSUS, now in it's 5th year.

 

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