Sandy was born with a cleft palate that was undiagnosed for many years. When her daughter, Kim, was born with a rare genetic difference, also undiagnosed for many years, Sandy decided it would be her life’s work to advocate for her daughter and support other parents to do the same. Read her inspiring story about her diagnosis and supporting her daughter.
I am sharing to answer the question as to why I was ever born. Today I have a lifetime of experiences behind me that I hope will continue to inspire others to create change for children with special needs. I have been writing since I was in second grade at Walnut Street Elementary School in Hanover, PA. I actually learned more from reading the printed pages of story books because the teacher read them to us and I learned how to follow along. Eventually I was then able to read the stories and nursery rhymes that fascinated and sparked my imagination. I loved the stories on the printed pages, thus I learned because of that. I was always more interested in reading and writing than other subjects.
Sometime during elementary school I lost some of my hearing. I was struggling and I had to see a doctor. My mother was worried because before that I had pneumonia. I remember seeing animals on the walls in the living room where my mother had made a bed. I learned it was because I had a high fever.
As I got older I had to see the doctor a lot. My ears drained a lot of fluid and it had a bad odor. My doctors wrapped me in a sheet and showed my mother how to flush water down my ears. The pain was unbearable. My mom did this at home, but nothing made my ears any better. Antibiotics helped my ear infections, but I sure lost my hearing.
When I was a teenager a girlfriend in my Sunday School Class told me my ear smelled so terrible, she had to move away from where I was sitting. I was so embarrassed. Another incident was at the Acme Grocery Store. I was behind some lady at the register and I heard the clerk say something to the lady asking her why she (me) can’t talk right. I had at that time realized I couldn’t talk right at all.
Later I had a doctor visit with my mother. Mother told the doctor, “Sandy thinks her speech is different than everybody else’s.” He said, “Oh,” and he chuckled, “She’s just a crooner like Bing Crosby.” After that, I must have watched White Christmas with that famous actor a hundred times. I never really understood the connection.
My parents always said I talked fine; they said what a nice girl I was. They also mentioned how well I wrote. I often spent my time at the Formica table in our kitchen writing, while my mother cooked or made pies. My senior year of High School I wrote an award-winning poem on what senior students experienced, and their feelings, about their three years attending William Penn. My poem was printed in our 1955 Yearbook called The Tattler. It was also read the evening of our Baccalaureate Service by one of the smartest students in our class, the Salutatorian. My teacher asked me if I minded if she would read it and he let me know that I would be relieved of the job. I knew in my heart I would never be completely understood, so I told the teacher what I thought was best. At that time, I was just 17 years of age, but in five more years I could have recited it by heart because I now, at the age of 23, had an actual diagnosis for a cleft palate and I now had adequate speech by wearing a speech prosthesis made for me by the Lancaster Cleft Palate Clinic in Lancaster, PA. They are still the best specialists in the world for Cleft Palates and for understanding the needs of children all over the world.
My daughter was born with a heart condition and her pediatrician, who was also my brother’s pediatrician, asked my mother about my condition. We were there for a routine visit; my daughter, my mother, and me. The doctor simply asked my mother, had she ever heard of the Lancaster Cleft Palate Clinic not too far from York? My mother asked why. The doctor calmly stated, “Well, I believe Sandy has a Cleft Palate. The Cleft Palate Clinic in Lancaster can help Sandy’s speech”, she promised. Later, before we left her office, she made sure my mother had all the information on how to contact the Lancaster Cleft Palate Clinic. I had no idea what a cleft palate was, but I soon found out.
There were specialized famous doctors there in the center of Lancaster. Specialists who were willing and able to do what was needed to help this crooner’s speech. I had five surgical procedures on my ears. I have had the best of dental care and I now have a speech prosthesis that I wear in my throat. This was since the late 50’s. I never had surgery on my throat. It was found that I did not have enough tissue whereby surgeons could pull together my own flesh back in where the uvula is supposed to be. Instead they made me a plastic and metal partial plate that held a bulb that acted as my missing parts in back of my throat, and which my throat muscles accepted. I could now speak without losing my words through the passages of my nose, a most remarkable feat. I could then speak normally. My throat muscles cooperated and accepted this foreign object.
What a miracle!
My daughter’s story, Kimberly, is the story people might have to buy, if and when I get better equipment to print it on paper, and ask a publisher to put it in book form.
I was born to get my daughter’s story down on paper. To do a whole lot to help Kimberly and many other mentally and physically different children and adults. The stories I wrote about Kim helped families I contacted across the State of Pennsylvania. Through my writing, families learned better ways of expressing the needs of their children through their own voices and their own words.
Every family and every special needs child has their own specific stories that government needs to hear. I believe that by serving this population in this way, teaching parents that they could become better advocates in order to make agencies and government legislators more aware of how best they could provide funding, I have fulfilled my reason for being born. To better provide services and supports for the families of children diagnosed with serious mental and physical differences for whom we, as parents, care for, most of their needful lives. Educating government bodies who would soon need to become partners with parents who have special needs children in their own homes, what a lifelong task that turned out to be.
Many parents and professionals are worn thin in trying to obtain much needed and improved services and supports for people like my Kim. This is what I thought and this is what I tried to do.
Kim’s story was one that a determined mother like me could tell because I also was thought to be somewhat of a misfit. I am sure. I was not whole or complete and was misdiagnosed my entire childhood.
My diagnosis came when I was 22 but Kim’s diagnosis from Johns Hopkins Genetic Department came when she was 40 years of age in 1998. Kim was finally diagnosed with Smith-Magenis Syndrome. Go online to learn more here from Parents and Researchers Interested in Smith-Magenis Syndrome.
I sent off thousands of written pages to many people in government and professional offices. I made many attempts to reach the Federal and State governmental bodies that needed to hear what I had to say. It led to my having written six proposals to Federal and State offices as to how I, and my husband, would establish a corporation in order to serve people like Kimberly, and to establish a residential and developmental program that was superior to any living arrangement and have a superior effect on my Kimberly’s life for over some 25 years.
I dedicate this effort to Kimberly Jean Tome, my firstborn child.
