Everyone Has a Voice
Authors: Nanci Bentley, Parent
Keywords: communication, early intervention, multi-disciplinary approach, CVI, signing, multi-modal communication, sensory box
When I thought of communication, I had always thought of traditional language, hearing a voice, and conversations. This is my journey of communication with my son, who is deafblind. My now 11-year-old son MJ has shown me that communication can happen in many ways. A voice can be heard without your ears.
MJ was diagnosed with a rare chromosome disorder, Pallister Killian Syndrome, at six months old. That was when we, as a family, would begin our journey into special needs.
We soon learned about early intervention, its importance, and complex care.
MJ was not achieving his milestones. He presented with low muscle tone, a cataract and was always quiet. At two years old, he developed epilepsy. There were many unknowns, both medically and developmentally. The unknowns were caving in on us. Milestones were not being met, and the forecast kept getting dimmer.
Among the plentiful amount of information we received through the years, we were told that MJ had a hearing and vision loss. This was when we learned about DeafBlindness. At that time, I perceived DeafBlindness as an inability to see or hear at all. I knew he could see and hear because of some of his responses. I needed to learn more about DeafBlindness.
I learned that DeafBlindness is when you think of combined hearing and vision, also known as dual sensory loss, as a single condition.
All of MJ’s needs had to be considered when treating DeafBlind, including communication. It was a multi-disciplinary approach. I had to learn how input/output happens simultaneously with our eyes and ears. I learned this would impact everything MJ does developmentally and how this would impact his access to his environment. Keeping the impact of DeafBlindness at the forefront of our minds has been transformational for MJ accessing communication and the environment.
Vision and hearing are foundational for development. I encourage everyone to think about all that happens with their eyes and ears in just one minute. You may be sitting in a room where the acoustics are loud and visually crowded. It can be overwhelming, and you may lose focus. Think about when you have to turn the TV or music down so you can read something or just focus on what you are doing. These examples could be what everyday life can look like for an individual with DeafBlindness. Imagine trying to balance auditory and visual input all day. For most of us, our neurological system does that for us.
I had been given several prognoses for MJ, including the possibility that his communication would be little to none. Hearing this as a parent was gut-wrenching. My son would not talk with me. Some providers did not have hope he would connect with his environment. I could see the determination when I looked into his eyes; he would show us he was connected.
When he was about a year old, MJ began to respond a little to light-up toys, sounds, and music. He never reached for anything and always kept his hands close to his body. He never seemed to be looking directly at an object. Everything became trial and error. We were hanging onto every little bit of hope MJ would communicate with us. Every little sound, from a giggle to a grunt, was studied. We kept wanting him to meet us where we were instead of meeting him where he was. We had to change our way of thinking. At this time, MJ began working with a Teacher of the Visually Impaired (TVI), and we received a sensory box (the “site of senses box”) with items hanging from it. We would lay MJ in there, and he would not touch anything. He would look, but you could see his eyes were not entirely focused on anything. I was ready to donate this sensory box. It was just another trial that did not work.
Then suddenly, one day after about six months, he reached for these little shiny mini wind chimes. It was magical; he made independent, purposeful movements and communicated through play. He was engaging in his environment. That was it. The light bulb went off, and it was truly communication through play. From there, he grew and continued manipulating items in this sensory environment while vocalizing, playing, and moving independently. He is now 11 and still scoots his way into this box and independently plays. His sensory box has enriched his life in many ways. It has helped him find his independence and confidence to go outside his personal space.
We learned that MJ needed processing and to be patient. Allowing processing time has been a focus for us throughout our journey.
At about three years old, MJ was introduced to the New York Deaf-Blind Collaborative (NYDBC), which supports students with DeafBlindness and their educational team and family. My husband and I took some training classes, and NYDBC visited my son’s school. That visit confirmed my son has Cortical Visual Impairment (CVI). The short explanation of CVI is that there is a processing disorder between the brain and the eye. Modifications vary depending on what Phase of CVI a person is in. The good news is that CVI can improve with continued modifications. There is no medical treatment for CVI. Some ophthalmologists recognize CVI, but others do not. We found it best to rely on our TVI and NYDBC for support. We learned about CVI and how this would impact his access to his environment, including communication.
We had to learn that MJ needed less visually complex items, preferred colors, some items distinctly outlined, and contrasted backgrounds.
A CVI Range was completed to help guide us on what modifications were needed. We began using pre-symbolic communication called 3D tangible symbols. MJ advanced to 2D symbols (pictures) because of proper modifications. We used symbols to create a visual schedule that would help with planning and anticipation for MJ’s days. We continued to match the item with the picture and eventually transitioned to just the image.
We began creating a 2 column communication chart. This was where we would identify body gestures and sounds that may mean something. MJ began tactile communication by touching his body. He has also learned some signing. Another way we communicate with MJ is through consistent and repetitive activities. On school mornings, we put MJ’s long socks that he wears with his braces on him to let him know he is going to school. We are sure to do it only when going to school. We have found positioning to be a great communication avenue for MJ to anticipate what is happening. We always try to use MJ’s wheelchair as his safe space. This is one of many best practices for MJ’s communication. When we go to the doctor, we transfer MJ out of his wheelchair, so he knows he will be examined. He transfers back to the wheelchair to know he is finished. Often, he claps his hands and becomes excited. We try to follow consistent position schedules at school and home to help MJ feel grounded. I can’t imagine going through my day not knowing what will happen next and that activities have no beginning or end. Developing a consistent routine helps MJ with anticipation and not have a high level of stress about what is going on. This allows him to focus on his activities. We always make sure to let MJ know we are in his presence and ask others to do so. We have specific steps when entering MJ’s personal space and for providing consistent tactile input (i.e. touching the same place on his arm). Creating a best practices list specific to respectful communication for MJ has been very helpful.
MJ is a multi-modal communicator. As noted, he does not stay in his wheelchair, so we have had to plan for him to access his modes of communication in multiple settings. Our goal is to move all his communication to his iPad; however, we want to leave every opportunity to communicate openly. Currently, MJ uses his iPad to play apps that are CVI-friendly.
MJ continues to improve his expressive communication by vocalizing, shaking his head, tapping his shoulder, reaching, making choices between symbols, and looking. The challenging part is when MJ tells us he needs, feels, or wants something, and we cannot figure it out. It is especially difficult when he doesn’t seem to be feeling well.
We have learned to study his body language and what is happening at that time and think through events that have happened and environmental changes.
Good communication is imperative between the school and home teams. We use a daily sheet to pick up on patterns, celebrations, and concerns. We hold team meetings with the school bi-weekly to share information.
MJ has taught us we need to be able to effectively communicate as a team to support him in achieving his milestones.
More recently, we have begun using recorded buttons for MJ to choose the word and build his expressive communication. Sometimes it is heartbreaking to see MJ communicating with us, and we cannot figure out what he is telling us. However, it is beautiful to be a part of it when we figure out what he is communicating. To make that connection with MJ is electrifying for me.
MJ has taught us that everyone has a voice. You may not always hear that voice, but if you look, feel, and listen with more than your ears, you will hear that voice.
I think because MJ does not have conventional receptive communication, some think he does not understand what is being said to him or what’s happening around him. It is like he is less respected when it comes to personal space and acknowledging him as a person. We have found this often when we have encounters with individuals. Sometimes people talk just to us instead of MJ. We are sure to move the conversation, so MJ is included. We welcome curious questions from others. For medical encounters, we are sure the provider talks with MJ, introduces themself, and only enters his personal space once they talk through everything with MJ. Anyone working with MJ is oriented so that they can get to know him before touching or asking him to do anything.
Building trust is key to successful communication.
My favorite encounters are the ones where I am not acknowledged, and MJ is directly spoken to. MJ responds to sounds and his environment. He vocalizes excitement when he notices that we are heading down the road to our home. He gets excited when he hears his bath water running. He loves ceiling fans and checks for them in unfamiliar places. MJ has shown us he is brilliant and has the ability to problem-solve and compensate in the toughest moments. He has challenged us to expand our communication because communication is so fundamental to him.
It has been ongoing and has taken us years to build communication channels with MJ. I attribute understanding the impact of DeafBlindness and CVI as the foundation of MJ’s communication.
Without our family and MJ’s educational learning about DeafBlindness and CVI, our ability to connect with MJ would have been just a hope. MJ may have continued to be misunderstood, and we would still be searching for his voice.
We learned never to leave any stone unturned, even if it seems too heavy to lift.
Bentley, N. (2023, March). Everyone has a voice. Exceptional Parent Magazine, 16-19. https://reader.mediawiremobile.com/epmagazine/issues/208391/viewer?page=16