Learning to Communicate
I could have done many things differently as Kenny was growing up. I could have been more of a "hands-on-mom", I could have done more research, I could have talked to more people, I could have asked for more support, I could have... I could have... The list goes on and on of what I could have done, but the one thing that stands out the most – since it is embedded in every situation of our life - is the fact that, as a child, we could not communicate with Kenny, who is deaf-blind.
I had never seen a person with disabilities, or a person deprived of sight and hearing, until Kenny was born. Due to lack of exposure, having grown up in a different country, I thought that "these special people" could not live a typical life and play a productive role in our society. Boy, did I get a wakeup call!
Kenny was born very premature. Despite our doctor's advice to send him to a residential facility, after eight weeks on a ventilator and a total of eight months in the hospital, we brought our baby home. We knew that he could not see or hear and had most likely suffered severe brain damage. And according to medical experts, he was not going to survive his second birthday.
Kenny had such an angelic face and tenderness that his beauty won our hearts from the day he was born. Wanting to prove the doctors wrong we started feeding him homemade soups, provided physical therapy five times a week and gave him lots of love and stimulation to revitalize his senses. He reached his second birthday sitting independently and discovered that if he banged his head against a hard surface he could "see" sparkling lights in his head.
At age three, Kenny started his first year in a special education program. I was encouraged to learn Sign Language to communicate with him, and told by the therapists that - most likely - tactile sign language would be his primary mode of communication. I was skeptical about his potential learning abilities and too busy raising Kenny's older brother and younger sister to start learning ASL. I assumed that if Kenny's teachers and therapists taught him ASL that would be sufficient for all of us.
I spent years searching for good programs, specialized therapists and a world of support to help him reach higher goals, and to my dismay, Kenny continued to hurt himself! Why didn't I listen to the good-hearted teachers, who I used to blame for Kenny's lack of communication, and learn sign language and try to do it myself? It took me some time to come to the realization that I needed to assume the responsibility of attending to my son's needs and stop blaming the rest of the world for something that I was not doing.
Through the years we have touched on everything available to enhance his receptive and expressive communication skills and to facilitate his dialogue with us. We provided endless hours of speech therapy, created object and symbolic cues (in all different formats and shapes sticking to different surfaces or hanging from a little chain or belt); put together calendar and activity boxes and tried to teach him to use the Tadoma Method.
We realized that the communication technique that worked best for him was Total Communication (combination of speech, objects and ASL) with specific conditioning issues. We discovered that these are the things Kenny needs to communicate with others.
- To trust the person who is with him
- To learn/model to do the sign with his own hands
- To have time to process the information received
- To have time to express his request or answer
- A reason to communicate (preferred activities always work well)
- A place where he feels comfortable
Today I can say that all that "trial and error" has paid off and Kenny can communicate his basic needs and understands what we are telling him, and not only has his repertoire of signs expanded, but he is a lot more sociable and enjoys meeting new people.
Having raised a beautiful man who is deaf-blind and who has a productive life working daily in a farm not far away from our house, these are my humble suggestions:
- Have high expectations on their development
- Follow the advice of well-trained professionals in the field of deaf-blindness
- Learn and practice new communication techniques
- Do it yourself!
- Time spent training your child will pay you back with high interest the rest of your life
- "More" is not always "better"
- Sometimes with a "slow and sturdy pace" we reach greater distances
- Spend fun time with your children… Their happiness will always put a smile on your face.
Most importantly, from one parent to another, please never underestimate the learning potential of your children. They will always surpass your highest expectations.
Clara Berg, Mother of Kenny