January 15, 2015 I wrote an email to the teachers and therapists who work with Cody which started with the following words:
“I am just continually hitting this point of despairing over the fact that Cody cannot express himself properly to us and as a result has to experience what must be such an incredible sense of aloneness and frustration”.
With this began over 6 months of planning and implementing to create an alternative form of communication using tangible object symbols.
Over 200 emails among team members, and dozens of me reaching out to professionals for advice and ideas across the continent.
Over 20 hours spent in meetings and sessions discussing, planning, brainstorming, problem solving and training.
13 people involved as a part of Cody’s team.
Dozens of hours of research online, over the phone, and in person.
Upwards of $1000 spent on materials and tangible objects (symbols/cues) for home use.
$2480 spent paying consultants and therapists.
Numerous trips to the thrift store and dollar store hunting for ideas, objects, materials.
Countless hours spent crafting and creating cues, including the messy work of mixing epoxy to cover food items in several layers of varnish to be used as cues.
Unknown amount of money and time spent by the school team creating and planning the system for school use.
Dozens and dozens of texts with Cody’s dad, planning and giving tasks as we created cues and brainstormed together.
All these people and resources used to create a new language for Cody…the value of which is priceless.
So, what is this new language? Sighted children who struggle with speech may be taught to use picture symbols, a system called PECS (Picture Exchange Communication System). Due to Cody’s blindness, we’ve had to develop tangible symbols instead- each representing an object or activity or person of meaning to Cody. Once these symbols are created, we begin the process of teaching them to Cody by using them repetitively in his daily routines and incorporating them into his daily schedule. Through regular exposure, we teach him the symbols, with the goal that down the road he will know them well enough to use them expressively in order to communicate with us what is on his mind, what he is thinking of and requesting.
Here is a poster created with pictures of some of his symbols; a type of dictionary for easy reference for myself and others who work with Cody at home
A second poster of symbols.
Tangible Object Symbols Schedule. The drawers hold his symbols. The bins at the top represent in sequence the activities of his days. The black bin on the right side is the “all finished” bin. Cody and I set up his schedule each morning. They will have a similar one in school for him in the Fall and his Dad has one in his home as well.
Here Cody and I are setting up his schedule for the afternoon.
This video shows what we do when one activity is done and we are moving on to the next.
A secondary learning activity we are using with Cody involves his Choice Board. On this, we are teaching him to choose his preferred food or activity from a choice of 2 – 3 different ones. He is learning to do this by feeling each symbol, identifying his choice and then passing it over to his partner. It is not until he places it in my hand that I can acknowledge he has communicated.
This is his choice board in his room. The grey foam strips work to separate each selection. Some of the tangible cues are mounted onto green cards. They are all fastened with velcro so they can be pulled off and placed back on. Although this board shows 9 possible choices, we are still working on between 2 and 3 choices at one time. The symbols on the green cards are actual food items which I’ve covered in several layers of epoxy/varnish. In this way the shape and some of the texture remains and they are preserved.
Here is a video of Cody and I using the choice board so he can communicate his choice.
Although as a team it feels like we have traversed a mountain to get this far, I know we have much further to go. But, my feelings of gratitude and awe to have come to this point are overwhelming. Coming from that place of despair in January, and arriving at this place of beginnings, hope and promise fills me with pride and joy. I am so fortunate to have an amazing team backing me up, to have Cody’s dad and stepmom firmly on board, and to have such a clever and eager student in Cody. He has approached his learning so openly, so patiently and diligently. It is apparent to me that he’s been waiting for this, for his chance to be heard.