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 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.

CAUSE AND EFFFECT: MJ plays with one of his favorite switch adapted toys.

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 possibil-

-ity 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.