“Hey, Roa! I’m so glad you’re home!”, I say as the school bus ramp is lowered.
Instantly, I get “the lip”. What is the lip, you ask? Well Roa has a way of protruding his lower lip and giving you the saddest eyes you have ever seen when he has an issue.
“What’s the problem?” I ask. Yet he can’t tell me. Not verbally at least. I go through the rundown of possible problems and offer him my thumbs for him to grab if I state the correct problem. Sometimes I guess right. Other times, my inability to identify the crisis leads to a sorrowful cry and tears a flowing.
This lip situation has been happening a lot lately. Not only after school, but various times throughout our day. Roa has been fairly patient with us as we try to figure out his current need, but we now are hitting the peak of the dreaded….Communication Frustration.
When you have a child who does not speak and has limited finger dexterity for sign language, you must rely on other forms of communication. We have done photo choices, picture boards, button switches, and iPad Apps. We use eye gaze, arm reaching, and the “take me to it” method. We use anything we can, but sometimes we just cannot pin-point that need. It leaves us all frustrated and mentally drained.
When we just can’t figure out what Roa wants and the tantrum begins, it is like a knife to my heart. I feel so bad that my smart, little boy’s voice is locked inside and he is unable to use it. I try to comfort myself by recognizing that he isn’t hurt or in true distress, yet it still is an emotional battle that leaves me distraught.
This past winter, we did a trial with the DynaVox T10 with mounted headmouse. This device is similar to an iPad in size and weight. It has the touchscreen that is easy to program and the device has a simple mounting system for tabletop or wheelchair use. With the headmouse control, Roa wears an adhesive dot in the center of his forehead that reads what picture on the screen he is looking at.
Roa did quite well with this trial. He consistently used the program at meal times to request drinks, more, and all done. He also used it with his speech therapist to choose from a variety of activities he enjoys and even picks a friend in his class to play with.
We are excited about the possibilities this communication device can bring for Roa. While using it at home during the trial period, we were super excited that he paired attempts of vocalizing with the voice output of the computer! That all being said, we are in the process of getting this device covered by our insurance for Roa to use in time for his Kindergarten year at school.
Will he be able to use the device to tell us what is troubling him? We are praying he can, with time and practice. Until then, we will continue to use every method we can to give our boy a voice.