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Department: Think About It

When There Are No Words

Mauk, Kris

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doi: 10.1097/CNJ.0000000000000791
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Without consciously meaning to, and perhaps by timely divine appointment, this issue of JCN has many articles that focus on addressing health inequities. As a grandmother raising an adopted 4-year-old with special needs, I am acutely aware of the inequities that life can bring. My son has autism along with other developmental delays due to substance abuse by his birth mother. Our journey on the autism spectrum was not one that I ever expected to travel, but God has a gentle way of drawing us out of our comfort zones and using our preexisting strengths and experiences to prepare us for the next great calling. My prior experience as a rehabilitation nurse working with stroke survivors, many of whom had aphasia, has been quite valuable in raising a son with autism. Having patience, listening, and promoting self-care were already part of my skill set.

Communication is an essential part of human existence. Although much of our communication is nonverbal (such as gestures, tone of voice, body language), the ability to speak is a precious commodity that we often take for granted. Imagine if you lost the ability to talk. How would you feel? How would you manage? How would you navigate your life, your work, your relationships with friends and loved ones? Would it change the way you view yourself?

My little boy has trouble expressing himself verbally. Although he is bright and can say hundreds of single words to label things, it is an everyday struggle for him to tell us what he wants to eat, to wear, to do. He talks in one-word sentences. To say “I want milk” seems painful and challenging for him, like a stroke survivor with expressive aphasia. Knowing the challenges that my little boy will face in life with autism is sometimes overwhelming. People who have trouble with verbal communication are often ostracized, treated differently, bullied, and thought of as less intelligent.

But, children with autism sometimes have special giftedness in other areas. My son excels in academic areas related to letters, numbers, and music. He spells out words with his wooden alphabet that most first graders do not even have in their vocabulary. Having mastered the English alphabet literally backward and forward, he entertains himself by watching children's music videos of Russian, Greek, and Spanish alphabets. Sometimes he makes foreign letters out of Play-Doh or noodles, and I have to look them up to see what he is spelling. However, similar to other children who are not “typically developing,” simple daily tasks like using a spoon, drinking from a cup, potty training, dressing himself, and brushing his teeth are elusive despite hours of therapy and practice. Ineffective social skills and lack of verbal communication seem to define our world right now.

Yet God is so good to give us tiny gems of hope when we need them most. One night as he got ready for bed and I cradled his head in the crook of my arm (the only way he will finally sleep) for a bedtime snuggle, he suddenly and quietly squeezed my arm and said, “heart.” We were learning shapes at the time and it was around Valentine's Day. I replied, “Yes, heart is a nice shape.”

He repeated loudly and forcibly as he hugged me, “HEART!” as though I didn't understand him. And then followed these precious words, each spoken slowly, haltingly, and deliberately in a whisper: “I---love----you.”

As he drifted off to sleep, tears rolled down my cheek and onto his head. I suppose there are only a few times in my life that I felt as genuinely grateful for such a seemingly small gift.

In this issue, many inequities that affect health are discussed. In the feature article (Lathrop), nurses learn the social determinants of health and how to advocate for those impacted by various influencers. Chatman and Wynn's piece focuses on intercultural communication with Muslim women to improve health. Sanderson's work advocates for nurses playing an essential role in reducing health disparities by creating a culture of equity. By recognizing and responding to factors that impact health, we can be a balancing voice for those who may have no words.

InterVarsity Christian Fellowship