AAC Part 7 - A New Turn in Our Journey
Nathaniel is taking a college class! Well, not really. Nathaniel is a college class. He has been accepted into a preschool level Developmental Language Group (DLG) at a local university. This summer he attends for two hours two mornings a week. The program is offered through a hands-on clinic where students enrolled in a Master of Science in Speech-Language Pathology program work with patients under the supervision of university faculty. For the summer session, three clinicians and an instructor are working with six children. Nathaniel is the only AAC user. He is learning to navigate play and preschool programing alongside peers capable of speaking.
We are fortunate to live in an area with such rich resources. Nathaniel continues to be followed by an AAC team (speech therapist and occupational therapist) at the children's hospital in our area. The team spends two hours with us every two to three months to set goals and help find solutions in areas we are struggling. He continues with weekly private speech therapy in our home; this therapist attends the AAC meetings and implements a plan to work on the identified goals. Nathaniel's assigned DLG clinician also attended our AAC consultation last week. He is working on Nathaniel's language and AAC goals in the group sessions, as well as identifying new skills and resources Nathaniel will need in a classroom setting and with new communication partners.
Sometimes sad, hard things make me emotional. Sometimes amazing, good things give me equally strong emotions. I have welcomed the latter as I have watched Nathaniel through a one-way glass that spans the length of the therapy playroom. From behind the glass I can observe his interactions with the other children. I can watch how the clinicians challenge and support his language development. I can monitor his airway without being in the room and a part of the session.
This me on the other side of the glass? This is a big step. It is more than just a first play or preschool experience away from Mom for a three year old. It is medical on the other side of the glass. Medical taking a behind the glass place to communication. Medical behind the glass to play. Medical behind the glass to childhood. It takes my breath away.
The effects of three and a half years of medical and nurses and therapists and brothers and parents following Nathaniel everywhere for his own safety is obvious. On the first day, Nathaniel would start to play in an area, but when a clinician came near to interact and add a language component to the play, he would flee to something new. His clinician must have logged 10,000 steps in that twenty foot by twenty foot room in two hours. By the third session, the student therapists and instructor developed a plan that outsmarted Nathaniel. Bags of cars or other interesting items were taped to the wall out of reach. Rather than the clinicians coming to him to interact, he sought them for help to reach the toys. Wanting help requires instigating communication. Getting help requires further communication.
Communication requires his talker. There has been immediate growth in Nathaniel's ownership of his device, which is one of our current goals. He, and the room, are busy. There is constant movement between stations and activities. He does not carry his device with him from play area to play area yet, but dashes uninhibited to whatever catches his attention next. The clinicians leave the talker where he leaves it, requiring him to return to it or go retrieve it when he wants to communicate. This is good. The never more than arm's length away presence of an adult for three years, has affected not only Nathaniel's play tendencies, but us as well. We can easily do too much for him. We are quick to grab his words for him and in doing so we silently teach a helplessness far greater than his disability. I am learning behind the glass.
This summer and Nathaniel's enrollment in language group marks a significant transition in our AAC journey. We have moved from the"Mommy will help you find a way to talk," mother son conversation by the refrigerator to a "This is his device, let me give you a quick tutorial," mother graduate student conversation at the door of a classroom. Nathaniel waves good-bye. I try to swallow around that lump in the throat that happens when our children reach a significant place. But this is more than the parental 'I didn't think we would ever get here,' feeling that I am accustomed to with my other children. With Nathaniel, I did not know where "here" would be. I still don't. Our journey with Nathaniel's airway and finding him a voice has been an advanced course with no syllabus and no textbook. I have needed to move back and forth between the role of student and instructor so interchangeably that at times was not onlythe destination unknown, but also the path indiscernible.
As we leave the university each day, Nathaniel walks on the curbs. He can not see his feet. His talker is like his pregnant sister's belly a month ago. But he moves steadily along regardless, trustingly planting one foot in front of the other. And just as instinctively, he is showing all of us how to navigate this wandering.