Thursday, January 13, 2022

My life growing up with Velo Cardio Facial Syndrome Part One

 My parents always suspected that I had special needs but they didn’t know exactly what kind of disability I had. Genetic testing did not exist yet; not until 1992. When I was six years old, my parents took me to Sick Kids Hospital in Toronto to get my genes mapped. I saw a throat specialist and a geneticist on the exact same day. I had a very bad cold. My parents took me to Toronto anyway because they didn’t want to cancel the appointment. The throat specialist put a long clear tube up my nose to check for velopharyngeal incompetence. My speech at that time was full of nasality. She wanted to see if I needed surgery to correct my speech impediment. Much to her surprise, she discovered that my throat didn’t require surgical correction. She told my parents that all that I needed to correct my speech was lots of intensive speech therapy. I started speech therapy later that year and was pulled from it when I was much older by my school without my parents consent. One day I came home from school and my mom asked me how my speech therapy was going. I looked at her and said “What speech therapy? I don’t have speech therapy anymore”. My mom was really annoyed. She went to my school and spoke with a young snippy teacher who claimed that my Mom signed a form releasing me from speech therapy. My mom insisted that she did not see nor sign any such form. My teacher eventually gave up and stopped going on about it. My mom left her office and She shut the door in my mom’s face. I continued to have speech therapy in highschool. My parents made me repeat myself and enunciate until I could speak clearly. I eventually outgrew my speech impediment when I was twenty one.

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My life growing up with VCF Part Three.

  My Dad always knew that there was something wrong with me, he just wasn’t sure what. I wasn’t your average kid. I was very slow and very f...