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.
DeafBlindness encompasses a spectrum from mildly hard of hearing plus mildly visually impaired, to totally deaf and blind, or combinations of the severity of vision and hearing loss.
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 of him communicating, 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 that 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 that 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. The purpose of the sensory box was to give MJ the opportunity to experience cause and effect, offer different types of movement, auditory and visual input. There are wooden items that may not make much sound and shiny metal spoons clanking, that may feel different to the touch. The ability to use multiple senses is endless, when the right items are chosen. The sensory box offers the ability to choose the input in an independent way. We never force MJ to touch anything. 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. We learned MJ was attracted to shiny items from this box. 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. This sensory box gave us so much information on what MJ prefers. We used play to help MJ learn choices, and cause and effect. We advanced to holding preferred play items up (light up, musical, shiny toys) and MJ would visually look at preferred items. Eventually he was reaching for them as well.
We learned that MJ needed time to process and we needed 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, their educational team and family. My husband and I took some training classes, and NYDBC visited my son’s school. That visit confirmed that 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 MJ’s access to his environment, including communication. Allowing MJ time to process information has been a key in making connections. When MJ is looking at something, especially unfamiliar, he may look at it and then look away multiple times. This is visual latency. Although MJ may really want to look at the object/environment, he needs processing time and that is when he looks away. MJ may also look at something from the corner of his eye, but will not directly look at it until there has been some processing time. Sometimes people have thought MJ doesn't like something, but he does. He just needs to process the visual input. This is a guideline we use for processing time and CVI. One of the biggest misconceptions about CVI is that vision fluctuates from day to day, or is variable. It is not the student’s vision that fluctuates, but rather the complexity of the environment and materials presented to the student that fluctuate. Intervention should be geared toward understanding the impact of complexity on visual processing, balancing the complexity on visual processing, balancing the complexity of tasks and the environment, to maximize visual functioning throughout the day. This consideration directly impacts MJ’s 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 3D symbol 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 any activity has 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 to entering MJ’s personal space and use 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. This means we use multiple forms of communication to include body posture, facial expression, gesture, communication devices, vocalizations, picture symbols, and seating positions. 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 mode available for MJ to communicate. 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, what is happening at that time, and think through events that have happened, and environmental changes.
Fluid transparent communication is imperative between the school and home teams. This applies even more so when a child does not have language yet. We use a daily sheet to pick up on patterns, celebrations, and concerns. For example, if we notice a pattern on his daily sheet, where MJ has been rocking his body consistently in a certain class or area, we will assess his positioning, wellness, and environment to see what might be impacting him causing him to rock. There are times MJ is not eating well at home, but eats well at school. That lets us know he is eating, but did not prefer to be at home. More recently, MJ pulled himself up into a standing position in the bathroom after toileting. This was a big celebration and milestone. We had a time where MJ was falling asleep at school. We began tracking when he was falling asleep, because it was perceived as he wasn't feeling well. What we determined was that MJ was not engaged in the activities being presented, so he fell asleep. Once materials were modified, MJ became more engaged and sleeping was not so much of an issue. We hold team meetings with the school bi-weekly to share information. MJ has a very supportive educational team that includes an incredible 1:1 Aide, who receives training in DeafBlindness that is specific to MJ’s needs. This 1:1 Aide position could be recognized as an Intervener or Para, as well. Having a well-connected consistent 1:1 Aide is critical to providing MJ access to his educational environment. We have found that having multiple Aides working with MJ is not successful for MJ or his educational team. The consistency becomes fragmented and MJ and his team have a communication breakdown. We have also observed that MJ develops behaviors showing he is not connected, like falling asleep. We have identified these needs on MJ’s IEP. We believe the Aide support is the most important role of the team, because that is MJ’s consistent voice.
MJ has taught us that we need to be able to effectively communicate as a team, to support him in achieving his milestones.
More recently, led by his educational team, we have begun using recorded buttons for MJ to choose the word and build his expressive communication. Sometimes, it is heartbreaking when MJ is communicating with us, but 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 that because MJ does not have conventional receptive communication, some people 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 make 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 that they should get to know him before touching him 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 that 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 conventional communication is 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 team learning about DeafBlindness and CVI, our ability to connect with MJ would have been just a hope. We are grateful for MJ’s educational team, families, and other professionals that continue to support our journey. 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.
ABOUT THE AUTHOR:
Nanci Bentley is a Family Engagement and Outreach Coordinator for New York Deaf Blind Collaborative. NYDBC is partners with the National Center on DeafBlindness, which is part of the Helen Keller National Center. Prior to joining the NYDBC team 2 plus years ago, Nanci’s son had been receiving support from NYDBC. Before Nanci had her son MJ, she worked in the business sector. Nanci enjoys community service, serving on Boards, Advisory Councils, and helping families find their voice. Nanci lives in Upstate New York with her husband Mike and son MJ. Nanci’s biggest enjoyment in life is being with MJ. In 2022 after a few years of fundraising, Nanci’s family along with a few other members opened the first universally designed playground in the United States. Learn more Dream Big (dreambiginclusion.org).
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