And I had serious questions about myself. I didn’t know if I had the emotional, physical and mental strength to deal with a handicapped child. I had no idea about what struggles and triumphs lay ahead of me. But what I did know was that this beautiful baby boy could not speak for himself… that would be my job.
I set out to learn as much as I could about deafness. I’ve always felt that knowledge is the key to control. As long as I knew what I was talking about, people would listen and that would give me more control over the things that would affect Jim’s life. I also knew I had to find my voice. As a child, I was never one to speak up. I never felt comfortable speaking in public. (Looking back, I think it was because I didn’t feel I had anything important to say.) But now, representing someone who had no voice, I found the strength to overcome that fear. I knew I had many important things to say, and I would make people listen.
And so my life as an advocate began. Over the last 37 years…
· I have fought with teachers and school administrators about Jim’s educational needs,
· I have educated family, friends and neighbors about deafness,
· I have taught Sign Language to whomever was interested in learning to sign,
· I have served as President of two local associations for the deaf,
· My husband and I moved our family from Pennsylvania to Arizona so Jim could attend a school for the deaf,
· We filed a lawsuit against our public school district because they wouldn’t provide funding for an interpreter for Jim in a Catholic high school. We won that case, after 6 years of hearings and appeals, in the Supreme Court of the United States. And because our attorney petitioned the court, this was the first time in the history of the Supreme Court that an interpreter was provided for the deaf.
I could go on, but I think you get the picture. When you have a special needs child, your work never ends. I remember the day Jim graduated from high school. I thought I could finally sit back and take a deep breath. Look how far we had come. Then, as the ceremony began, the lights were turned off on the graduates and the lights were turned on for speakers on the stage. And there sat my son and his interpreter in the dark!! Here we go again. It took 10 minutes of arguing with the man in the control booth to convince him to turn up the lights so my son could see his interpreter.
Now that Jim is a grown man, my advocacy work has dwindled to occasional pep talks about decisions he makes in his life. But I have found another passion…
My first grandchild, Lina, was born prematurely. As she grew into a toddler she began to experience some obvious developmental delays. She was definitely behind in her communication skills. So again, I armed myself with knowledge… what should she be doing and when should she be doing it. I created some fun letter and word activities on my computer to help her. I added some music and sound effects and called it “Nonna and Me ABCs.” (“Nonna” is the Italian word for Grandma.) She loved it and started communicating more and more.
By the time she entered preschool at 3½, she knew all of her ABCs, along with the sounds they made and words that began with those sounds. “Nonna and Me” was working! So at the urging of my family, and with the help of my son Sam, “Nonna and MeTM” the company became a reality. My goal is to provide educational and fun materials to help parents prepare their preschoolers for kindergarten.
So what about my role as advocate? Last year I was asked to sit in on a parent-teacher conference regarding my granddaughter’s progress in preschool. Her teachers were not aware of her abilities because apparently she was not communicating in the classroom. Because of the knowledge I had armed myself with beforehand, I was able to communicate with them on their level, and they listened to what I had to say. We came to an agreement on how we could all work together to benefit Lina and it worked. It never ends…
Once and advocate…always an advocate. And I wouldn’t have it any other way.