Hey everyone. I've decided to step back from the craziness of "Things That I hate" and concentrate on something a bit more near to my heart. Specifically, I want to talk about myself. When I was born on March 16, 1976, I weighed 13 pounds, 3 ounces. That's a little higher than for a normal birth. My mother saw me as a wonderful little baby who didn't have any significant developmental delays at the time.
By the time I was two, my mom was concerned that there was something wrong about me. I was a little slow in learning to walk, I was talking very little, and I didn't crawl. Doctors in Germany, where my dad was working for the Army Corps of Engineers, suspected that I might have Soto’s Syndrome, but they couldn't say for sure. When the family moved to Pueblo, Colorado, they took me at 4 years old to various doctors, had his hearing checked which was and started him on speech therapy. It was apparent to my mom that I was developmentally challenged, but my dad remained in denial. So here I was, having no idea what was going on with me.
I started pre-school at five. I can't recall who my teacher was but I was so happy to be there. I went through normal things as best as I could. When I went to kindergarten the first time, the teacher told my parents that I wouldn't do so well so I went back to the school for some more help. After that, I went to elementary school. For my first year, I had two teachers. My mornings would concentrate on one teacher who specialized in special education. The afternoons would be normal with first grade. Now that I look back, that teacher who helped me in special education first was one a handful of people who helped me become what I am today. I saw him again in high school. Never took his class, but I knew him well. He retired twenty years ago. I will always remember him.
When I was finally diagnosed at age 10 with this disability, my parents were stunned I guess. The doctors told my dad the following: "Yeah, it's Sotos Syndrome. No, we don't know what causes it. No, we don't what to do. Thanks for coming. Goodbye." So now my parents had a ten year old with so many questions that needed to be answered. Before I continue, let me explain what Sotos Syndrome is. According to Wikipedia: Soto’s syndrome (cerebral gigantism) is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life. The disorder may be accompanied by autism, mild mental retardation, delayed motor, cognitive, and social development, hypotonia (low muscle tone), and speech impairments. Children with Soto’s Syndrome tend to be large at birth and are often taller, heavier, and have larger skulls and larger heads (macrocephaly) than is normal for their age. Signs of the disorder, which vary among individuals, include a disproportionately large and long skull and a large and long head with a slightly protrusive forehead, large hands and feet, large jaw bone, hypertelorism (an abnormally increased distance between the eyes)(large inter-pupillary distance), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness or irritability may also occur. Although most cases of Soto’s Syndrome occur sporadically, familial cases have also been reported. It is similar to Weaver syndrome.
It would not be until I was seventeen years of age when my parents found about an association dedicated to this disability. The conference that year was in Tempe, Arizona. When I was there, my parents were ready to ask questions. Instead, my parents were asked questions since I was one of the older ones with this disability at the conference. Through the years since that conference, my parents and I have and were people the adults could talk to about the disability.
There was nothing stopping me from doing what I needed to do despite my disability. My parents talked to teachers in the local school district about my disability and explained things that I needed help with. Most of the teachers agreed with this with a couple of exceptions. Because of my parents and all the help I got, I graduated from high school in 1995 and from college in 2003. I was one of twelve graduates to be a student marshal. My dad was honored with own award. Since then, my dad was president of the Sotos Syndrome Support Association and my mom was one of the people who contributed to the newsletter. When I was accepted as the first Sotos liaison in 2008, I was ecstatic because I knew I could do it. I was on the board for five years.
Even though both of my parents are now gone, I continue to help with the association. Right after my dad died, I was asked by the owner/moderator if I could take my father’s place on the yahoo group’s webpage about Soto’s Syndrome, which I gladfully accepted. I'm glad for what my parents helped me to become what I am today. :) For more information about Soto’s Syndrome, go to the Soto’s Syndrome website at http://sotossyndrome.org. Thanks for reading all!
by Andrew