Disability and Communication
The right to communication is a major issue when it comes to respecting the dignity of individuals with disabilities. Although a fundamental human right, it is often neglected. The reasons are multiple, and I am well aware of them: difficulties in implementing a communication tool, parental fatigue, lack of training, time constraints, and so on...
Nevertheless, access to communication is not only a prerequisite for the development of other skills or autonomy, but it is also essential for the well-being and mental health of individuals.
Personally, among all the battles I fight as the mother of a young person with a disability, the issue of access to satisfactory communication is particularly dear to me because I can testify to the tremendous evolution of Pablo thanks to Augmentative and Alternative Communication (AAC) and the enormous impact it has had on the whole family.
Many behavioral problems stem from a lack of communication. Just for that reason, we should be interested in the issue from a purely selfish and practical point of view as parents or professionals. Try to communicate a message without using oral or written language. Not easy, is it? Try to anticipate your week without an agenda or clock. Panic guaranteed!
However, finding a good communication system is not sufficient for the child or young person to grasp and communicate. Nothing is miraculous; it requires investment and time, especially in the beginning. You will need to model so that your child understands how to do it and manages to grasp it. But it's worth the effort!
It has been over 15 years since we have been using AAC with our son. Our tools have evolved as Pablo has grown, along with his abilities and needs. Despite his high level of understanding, Pablo speaks very little, a few monosyllabic words that only we, his close family, understand. However, he communicates a lot!
Learning gestures and recognizing pictograms through MAKATON was a long process, requiring the commitment of the entire family to create a modeling environment. Pablo had a binder filled with pictograms for communication and a visual schedule (also with pictograms) to help him anticipate his day and reduce anxiety about the unknown. Subsequently, we were able to implement a weekly planner and, finally, a monthly calendar. A whole process that enabled him to orient himself well in time and better cope with the unexpected.
The extraordinary communication tool that is the life book should not be underestimated. There is nothing more motivating than "telling" about one's weekend or vacations with photos. It is accessible to all and is a precious gift that tells better than anything else who your child is.
The challenge with AAC is that not everyone is trained in it. This is where good digital tools can make a difference. Why? Because a smartphone is easier to carry than a binder full of pictograms, and above all, it allows for oralization, giving a voice to those who don't have one.
Even with a custom-made application created by his brothers, PICTALK, it took time and learning. No tool is self-sufficient; modeling is necessary.
Today, Pablo communicates better and continues to make progress. He still uses MAKATON for simple requests with gestures, but most of the time, he uses PICTALK with his smartphone. I was inspired by the PODD method to design his digital communication binders. In each binder, Pablo can find all the pictograms related to a specific area (food, activities, shopping, etc.). Initially, he learned to construct sentences by combining pictograms. The digital binders also functioned as a kind of dictionary. Pablo memorized hundreds of words and has functional literacy. He is capable of writing appropriate messages, vocalizing them, or sending them via message using his smartphone. We strive to anticipate his future communication and organizational needs to prepare him as best as possible for his adult life. The use of the CAA AGENDA with pictograms has also been a factor in his progress. It allows Pablo to visualize the course of his upcoming days, weeks, and months, to prepare for events. He now navigates time very well.
To make him more autonomous, "visual sequences" are integrated into his CAA AGENDA. Very practical for breaking down complex daily tasks, such as "getting ready in the morning," which involve multiple actions: washing up, getting dressed, combing hair, brushing teeth, etc., as well as "packing his bag" before leaving on vacation, for example. The visual sequence shows the progress of actions to be completed via pictograms to validate. This way, complex processes are memorized and integrated into the routine.
Today, we are fortunate to have a plethora of means to communicate at our disposal. On this International Day of Persons with Disabilities, let's empower them to participate in society and make their voices heard. The best method is the one that is adopted.