Welcome to My Mosaic Life

     Hello and welcome to my blog site. I want to introduce myself and give a little background about me and what led me into the field of special education. After the first year or so of my life my parents were very concerned about my lack of growth. I was never ill but they noticed that I wasn’t growing at a normal rate and I was very small for my age. I was diagnosed at first with “failure to thrive”, which in retrospect is funny because other than being small I was very healthy. Doctors ran every test they could and in the end they did genetic testing and were shocked to find that I had Mosaic Turner’s Syndrome. Turner’s Syndrome can basically be described as a missing piece of the 23rd chromosome (the sex/gender chromosome) in females. Mosaic Turner’s Syndrome means that only a certain percentage of my cells are affected but not all of them. The reason doctors were surprised was because normally females born with TS have many moderate to sever defects and disabilities such as, asthma, congenital heart defect, no neck, lung problems, maybe some intellectual disabilities, short stature and infertility. The only clue that I had TS was my short stature. Throughout my life though I have always been short I have been incredibly healthy, strong, and academically astute. I used to run and hour everyday, I lift weights, and have excelled in academics.

     I never thought of my self as having a disability until I recently. You would never believe the challenges in life that a woman who is very short encounters. My whole life people have teased me, come up with names for me (most of the time good natured), not taken me seriously, tried to intimidate me, and treated me as if I have no voice or much important to say. Reading some research on the subject I discovered that people do indeed have a tendency to subconsciously view short people negatively. Who knew? I have always had to work harder to prove myself and make physical accommodations for most every day tasks. So I understand what it is like to be different and to struggle to fit in to a “normal” world.

     One thing that concerns me in the area of disabilities, and I will talk more about this in future posts, is that if prenatal testing had been more advanced and pushed on my mother, as it is today, I may not have been born. My mother probably would have been given a “worst case” scenario about my prognosis and would have been encouraged to terminate her pregnancy. I am living proof that doctors don’t now everything and although you may be able to detect a “possible” genetic anomaly you can never predetermine the extent to which a person my be affected. This issue is where my heart lies, making people aware of the issues surrounding bioethics and disability.

     So that is a little bit about my journey into special education and disability issues. I have a special place in my heart for families of individuals with disabilities. In my education practice I spend almost as much time counseling and listening to the struggles of parents as I do working with their children.

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3 thoughts on “Welcome to My Mosaic Life

  1. Thank you Lisa. These are great suggestions to help encourage parents and families with special needs children. I appreciate your imput and sharing your personal story too. Joanne

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  2. While I’ve been height-challenged all my life, I rarely minded it … unless I had to find a stool to reach the top shelf somewhere! But God’s design is always best, and he uses each challenge to make us more like him. I look forward to reading more of your blog.

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