Editor’s note: here we’re excited to share the story of an incredible MED-EL recipient, Dr. Magteld Smith. Dr. Smith was born with congenital deafness and has since gone on to spend 20 years researching how to give more people with deafness and hearing loss access to a wider array of rehabilitation options. She has a Ph.D in the cost of disabling hearing impairment in South Africa, and her current research genetic testing for congenital deafness and hearing loss with associated syndromes.
My father was hearing, but both my mother and her brother had a hearing loss. I was overdue and born as a “blue baby”, and since the beginning of my life my parents realised that I was “different”. My development was delayed, and I didn’t react to sound. They were confronted with a baby born with various disabilities.
I had a long journey of visiting and consulting various specialists. My parents were told that I was ‘ineducable disabled’ and should be institutionalized, but they refused to accept this. They noticed that I did things differently with a good sense of humour. I made them laugh and they enjoyed me the way I was.
My parents chose to raise me with spoken language, primarily. They believed it would give me the greatest opportunities over the course of my lifetime. But it was a task that many claimed would be impossible.
My mother began by placing my hand on her face and mouth. This allowed me to see the position of mother’s tongue and lips when she made a sound. She then shaped my own mouth for making basic vowel sounds. She took my hand, placed it on her throat so that I could feel the vibrations, and focused on making the sounds of language. It was like how Helen Keller would gently touch Sarah Fuller’s face, mouth, tongue, and throat. My hands also probed my own mouth and neck as I have tried to copy what my mother was doing.
First she taught me to form sounds, then I learned to say letter sounds, and then syllables. In combination with speech reading and contextual cues, pictures, and showing objects I could better say single words. The hard work and dedication were paying off with great benefit.
“I am sorry to tell you, but your daughter is deaf.”
Those were the words of an Ear, Nose, and Throat specialist that my parents consulted when I was about three years old. They looked in my eyes, and after suspecting it for over three years it was confirmed.
The first question came into their minds was: will she ever be able to speak. Every sound meant more, every word was precious. My parents went down a thought process of: How would I ever be able to speak to anyone? Will I ever be able to attend a mainstream school? Will I need their help for the rest of my life? How will I communicate my most personal thoughts to the hearing world? How will I ask for help? Will I feel lonely, isolated, alone?
Then the big question came… What do they do now?
Their ongoing efforts in speech therapy established communication patterns. Again, it was hard work for them as well as for me, and it required much patience and persistence. As I learned to speak I also learned to read lips. However, in time, I eventually made the connection between sound and meaning. For example, the sound “MMM” meant “mama”. So they continued with positive reinforcement. I built on these initial sounds until I learned to say whole words and then later short sentences.
My mother and siblings played games with me to help me further develop my speech. We blew out candles, blew bubbles, blew tissues for movement, made paper aeroplanes and blew them, blew balloons.
Today my mother will say that you as the parent are in the driver’s seat. Never take one professionals opinion. Find out for yourself by asking numerous questions of numerous professionals and decide on your own gut feeling what is correct. The joy of seeing your child succeed is beyond words.
Check back with us next month to hear more from Magteld!