Outside Voice, Please!
by Terri Hart-Ellis
by Terri Hart-Ellis
She pulls my hand and I willingly follow. I don't hesitate, I go. That is her question and going is my answer. We both know what she expects and that she will indeed get it. When we arrive in the room where she wants me to be, she lets go and rushes to her dad, grabbing his hand in the same way, leading him towards me. With gentle direction, she shortly has us facing each other. As soon as we are properly arranged, she steps back, tilts her head and waits for delivery. My husband and I step toward each other and wrap our arms around each other, cheek to cheek, watching as our girl enjoys the fruits of her labor. When she feels that enough love has been demonstrated between the two of us, she steps in to collect her own. If her sister is there, she may invite her as well, depending on the moment's sibling rivalry status.
This is a pretty regular conversation for us at home. My five-year-old daughter, functionally non-verbal and cognitively different, is the instigator while the rest of us do our parts. This conversation can mean many things: mom needs a hug, dad needs a hug, she herself needs a hug, or that we've been too busy to appreciate each other. We always know the difference, though the flow of steps is identical each time.
After dinner she will sign "all done," "may I be excused," "can I have a treat," and "it's bath time." A yelp and a shove make it clear to her older sister that she is done with the tickle game. When she wakes up in the morning, she lifts her sleep-heavy squinting eyes to me and tucks her lower lip under her front teeth. I answer, "Yes, you may have a waffle. I will get the toaster and make it for you."
This is Addie's inside voice. To us--her mom, dad and sister--this voice is loud and crystal clear most of the time. She knows hundreds of ASL signs, is very expressive with her face and gestures, and sporadically employs half a dozen verbal word approximations. Addie moves through her home comfortably, trusting her environment. She trusts that we can respond to her wants and needs, appreciate her sense of humor, counter or agree with her comments, learn from her, teach her.
It has been suggested to me that we make it easy for her, that we should sabotage her environment at home more and demand a specific method of communication of our own choosing in all exchanges. We do, in fact, have an atmosphere of respectfully high expectations for our girls at home, but firmly believe that Addie should be the one to choose which of her many hard-fought means of communication she's in the mood to use at any given time. All are valid. All are valued among family.
However, when she is out in the world, as is the increasing reality as she grows, things are different. She does not see people conversing the same way she does at home. Though she knows so many signs, certainly enough to meet someone new, order a cookie, or answer the basic questions (how old are you, what is your name, etc.), she will not sign if others are not signing, just as I would not speak Mandarin if no one else is. She may resort to a brief sign in public when necessary, but it is flung at one of her "interpreters" (her mom, dad or sister) in a way that seems she's not really expecting it to go too far. In these rare cases, it is only applied to a want or need, never to comment or joke. Often in public, she disengages herself from people and turns toward objects: the texture on the walls, the pattern on the floor, the windows.
Tuning in to the sensory feast outside of the house gets a thumbs up from us, but writing off all possible communication partners outside her immediate family does not. If one fails to respond to Addie's communication attempts once or twice, it is very difficult for her to trust that person at all, as it would be for any of us. This would be disastrous in a school environment and certainly is not the shortcut to a full and rewarding social life for a growing child.
So as parents, we slowly realized that we must look for and fight for an outside voice for our girl, one that frees her from the need of an interpreter. It is now on order; we are awaiting insurance approval and shipment of her dynamic display communication device. After months of research, two very successful trials, and an AAC evaluation, Addie has proven that she can add yet another mode of communication to her repertoire and use it adeptly. The first times I heard her "talking" at the library--telling me while all those around us could hear and understand--that she wanted to choose a DVD and a book, a pressure valve in me was released.
The duration of the two trials spanned a few months. During that time, she showed us understanding of the power and navigation of the device, appreciation for the generalized, "for all audiences" choice among her other communication options, and an all around motivation to take it as far as I could program it for her while we had it.
We chose her more interactive times to demonstrate and model the use in the beginning. Her signs after dinner asking to be excused, to have a treat, or to take a bath were very swiftly morphed into selecting the appropriate icons for the same phrases on the devices. I added more pages and she often elected to use the device even though she had the signs or approximations for certain things. She relished having her own audible voice.
The family hug conversation has efficiently remained as it was, however. I'm not sure it could be distilled into just words.
A pivotal moment in our understanding of the multitude of doors she can now open with her device if she chooses occurred at the local children's museum. This is not typically a conversing place for her. It's all sensory and she knows exactly where everything is. She knows that I will follow her, watch for when she needs assistance, but basically let her lead. No need to talk in her mind, regardless of my own ongoing commentary.
In spite of this, I took the device with us and programmed pages on the fly, based on what she was interested in at different spots in the museum. The pretend garden where you can pick and plant flowers is a favorite--lots of different textures and weights to the flowers, the beanbag "dirt." Addie likes to line up the flowers by size, color, and then pick them up one by one to smell. Once I got a few buttons programmed on the device, I moved in slowly, hitting the buttons at the appropriate times, reacting to the actions she was taking. After a few iterations with not a single word from me beyond hitting the buttons, she took the device out of my hand, and hit "line up!" before arranging the flowers. She reached to pick one up to smell it and hit the button with the other hand: "These flowers smell good!" This activity that used to be personal and private for her, was suddenly something she wanted to tell me about.
A child younger than Addie stepped around me to address Addie. No one ever speaks directly to her, particularly when they see us signing. They speak through me, which I always imagine has got to be at least a little demoralizing to Addie, though she would not be able to describe it as such. This time though, the child came up and asked Addie, "You like to line them up? Me, too." Without a moment's hesitation, Addie met the girl's eyes and signed yes. Not needing my interpretation, I kept my lips between my teeth, not breathing. Next the girl pretended to smell the flowers and Addie hit the button, "These flowers smell good!" The child asked Addie's name. Addie signed it. I said it as swiftly and innocuously as I could, hoping the child would not refocus away from Addie to me. The little girl said, "Oh, Addie. I didn't hear that name before. I am Ella. Let's pick 'em now! I'll get all the pink ones and you can do the white ones." Addie reached for a flower. It happened to be white.
And so we wait...we wait for this little machine that will make my child need me less, that will lift her alert, active mind from the floor or the wall, and apply it to other minds, to finding things in common with people, things different from people, to new learning. We wait for this piece of technology that will facilitate the credit, respect and focus she deserves from others. And allow her to give it back in return.
Terri lives with her husband, Michael, and their two daughters in Milwaukee, Wisconsin. Catriona is nine years old and Addison recently turned five. Addie has a primary diagnosis of Rubinstein-Taybi Syndrome. Both Terri and Michael are active in their community raising awareness of disability issues, supporting other families, advocating for their daughter and others.
- Contact: firstname.lastname@example.org
- To learn more about RTS, please visit www.rubinstein-taybi.org
- To read further about Addie's path visit www.farmerjohncheeseandotherjoy.blogspot.com
- Michael is training for a marathon to raise funds for RTS families: www.firstgiving.com/26forRTS