I have been dragging my feet on writing this update post. It’s even possible some of my avid readers (I do have some, right? Guys….?) have been waiting to read more about this, since I posted a brief blurb on facebook over a week ago.
It all feels overwhelming and huge right now.
We finally felt heard at the Center for Disabilities and Development regarding Kiran’s communication. Lack of, rather. It is something we have been bringing up to our local team (who are great and are working toward solid speech goals with him) for some time now: our frustration and Kiran’s seemingly growing frustration with not being able to communicate. He is non-verbal. We have been attempting signs with him (somewhat inconsistently at times, I’ll admit), but he doesn’t seem to be getting anywhere with it.
I felt, though we have such a great team in place working with Kiran, like we weren’t getting anywhere quickly enough. I didn’t understand the whole picture of the pieces that were being worked on. And I feel like we finally got a destination – we finally have a plan, a map, work to do – something tangible.
And it’s daunting.
The ultimate plan right now for Kiran is to see if we can get him on an assistive communication device. There are several different options out there, and I honestly haven’t educated myself on them yet (I have to take things one step at a time sometimes). Essentially, it will be some sort of system where Kiran could point to a picture to communicate an idea.
Some fairly newer research has been done that has identified 36 core words that can be used to communicate the most commonly used daily ideas. Words like “More, Finished, Stop, Go, Turn”. I used those five on purpose. I think they may be the five we will be focusing on for the next few months before we follow up in Iowa City in July. The plan is to focus on five of these core words using the picture associated with them. At home, we have a basic little mack, which is a recordable button device. Here’s what we are doing right now, at the start of this.
I put together a binder of the 36 pictures. Kiran has the visually impaired set, so they are brightly colored on a black background. Velcroed on top of these 36 pictures are cut-out versions of the small picture itself. This is so I can take one picture at a time and velcro it to his button device. I can then record the word on his device, and he can request the word by pushing his button – which will then say the word and we act on the word.
Right now, it’s a lot of repetition, and it requires a lot of patience. It’s hard to try to incorporate it into our day at this point (granted, we have gotten this info only just over a week ago), so I have been setting aside specific periods of time to really work on it that make sense. We use “more” during Kiran’s oral meal time, especially with puffs or veggie straws (which are only slightly more motivating than his pureed food), and we use it to request more mama singing (which is maybe the most motivating thing there is – for him). We use “turn” when we are reading books, to request to turn to the next page. We use “go” to request making a toy do something.
It feels good, to have a plan and a goal and work to focus on with communication. I won’t lie. It’s hard. It’s hard to be patient. It’s hard to have to be so repetitive. It’s hard not knowing how much he gets, how much he will grasp, what he can learn.
But a very wise former member of Kiran’s team told me something I have never ever forgotten: “I always assume competence.” So I meet Kiran where he is, and I work as if he can get to where we hope to go. I think he can. He continues to get somewhere, and he will show me the path.