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.

TIL WE MEET AGAIN: MJ pushes a switch to say goodbye to his 1:1 aide, Mrs. Jenkins.

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).