The lack of meaningful language is likely one of the most challenging aspects of caring for Emelyn—hence my mind’s need to serve it up in my subconscious. We’ve come to recognize the obvious clues along the way about what Emelyn wants to tell us…like when she takes one book from your hand and replaces it with another, “Ok, clearly you didn’t want to read that book.” Or when she gives you that you-just-made-my-day-smile after you sing her favorite song. But beyond gestures and smiles, we are limited without spoken language.
Like many parents of children with DDX3X, we've struggled through multiple speech therapists, trialed countless AAC apps/devices, and spent hours trying to develop echoics...and still, nothing. About two years ago when Emelyn was four years old, I decided to use ABA principles (starting with hand-over-hand and eventually fading to near independence) to teach Emelyn the ASL sign for "read." I chose "read" because books are highly motivating to Emelyn and I knew she'd work for books. By the end of the weekend, she would hand me a book and sign "read." From there we learned other motivating words like "eat" and various other food-related words (cracker, cereal, thirsty, etc.), and it's taken off from there. At this point Emelyn knows 100+ words in ASL—probably more than we know since so many of us teach her different words (the internet is the best teacher—thank you Signing Time and SignSavvy.com).
Our biggest struggle is fine motor skills. Emelyn can’t precisely sign many words making several words look very similar, such as milk and potty. And certain words/letters are still beyond her ability—for example, she can’t isolate her pinky finger to form “i,” “j,” “y,” or “yellow.” Despite those challenges, we've seen huge strides as we continue to work together to learn and perfect signs. It's a labor of love that is giving us a window into Emelyn's thoughts, needs, and desires. She is so proud of herself and we are amazed at just how smart she is.
Sign language has given us a better glimpse into what Emelyn is capable of. For the last couple of years her ABA clinic has been working on color matching with Emelyn. It’s an exercise where the learner attempts to match two colors together, such as putting a blue block into a blue cup. And for two years, she’s struggled with this seemingly simple exercise. In our effort to learn new signs, I learned to sign the book Brown Bear, Brown Bear by Eric Carle. She quickly, probably more quickly than me, learned the signs for all the colors and animals. And while the color matching exercise is still a struggle, ask her to label colors and she can do it with ease (except yellow). It’s the same with animals. While most kids learn to first point to label an object, Emelyn still struggles with that skill. However, if I point to an object and she knows the sign, she will promptly label that object with the correct sign. She’s recently demonstrated a knowledge of more than half of the alphabet as well—it’s been a pleasant surprise and keeps us on our toes.
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| A recent text message from Emelyn's physical therapist—they've been together for six years. There is nothing but love between them! |
