Understanding
Okur-Chung Neurodevelopmental Syndrome
Love Needs No Words
As we started to learn more and more about Harper’s diagnosis, Okur-Chung Neurodevelopmental Syndrome, we started to understand that our precious nonverbal daughter, Harper, might never learn to speak. One of my saddest moments as a mom was thinking I may never hear my daughter tell me she loves me. Harper has been in speech therapy since she was 14 months old, and we work constantly on her speech and trying to articulate words. As much as Harper desires to speak, her brain cannot transmit the words she would like to say. As the years go on, we have now depended on technology.
Harper learns language in part by connecting objects and images with their names and other related words, through an app called Proloquo2Go. Harper wears an iPhone around her neck and uses her “voice” (that’s what we call it,) to communicate with others. As the years have gone on, she has learned to speak sentences, and if someone asks her what her “voice” is, she says “I point to symbols to communicate.”
Throughout the last 9 years, even though Harper has never been able to communicate that she loves me, she has always shown her love through her laughter, hugs, kisses, and the joy that she radiates through her smile. Harper truly embodies that LOVE NEEDS NO WORDS. And now through Harper learning to navigate using her “voice” she can now say “I Love You” to me. The feeling I felt when she expressed her love to me using her “voice,” is the same feeling it would be as if spoke those words to me . A moment I will never take for granted and will cherish forever. It truly is incredible how I can see, feel, and know the love Harper has for me, without her ever speaking a word, because LOVE truly NEEDS NO WORDS.