Oh, I think it is high time to backtrack to the early days of our home-school voyage. Back to the days when I was a gatekeeper. I had so many misconceptions about providing quality education to students with significant disabilities. I believed behavioral approaches such as PECS (picture exchange communication system), ABA (applied behavior analysis), and DTT (discrete trial training) were the solitary methods available for this population. Therefore, this was all I offered Rylee and the result of that was unfavorable to her education.
These limited methods bred limited results. Prior to homeschooling, Rylee's communication revolved around requesting items we, the adults in her life, assumed she wanted while her academics constituted demonstrating her knowledge of a few colors all using behavioral methods. My mommy instincts were screaming at me to wake up, but I didn't listen right away.
I was in school at the time learning about various theoretical perspectives such as Skinner, Vygotsky, Dewey, Piaget, and Montessori among many others whom greatly contributed to our education system. I was working in the field at the time and internally, all I could think about was 'Why do educators in our society focus primarily on Skinner's approach for students with low-incidence disabilities?' I cannot tell you how many times I asked myself that question.
Those behavioral approaches did not align with what I wanted as a mother for Rylee. Did I want my daughter to tell me what she wanted? Sure, I did. However, I also wanted to know her jokes, questions, comments, pain, general abstract thoughts and what was important to her. I wanted to have a conversation with her.
Leading up to homeschooling her, I had to ask myself some tough questions. Questions like 'What is communication anyway?' 'How am I going to make this happen?' 'What will it look like?'
Is communication something where someone else already knows what you are going to say? NO! Communication is when someone tells you something you didn't know they were thinking. This is the primary, fundamental flaw of PECS. In PECS, a 'gatekeeper' initially provides words they think someone will want to ask for. For Rylee, this created a vicious cycle with true communication not even on the radar. Unfortunately, I realized this after 3 years of that perpetual merry-go-round. My mommy instincts were about to take over.
In 2010, talk about a communication system known as PODD began circulating the Angelman listserv I was a part of. Little did I know, one day this system would change our lives as a family, forever. Over the course of two years, I read and watched from the background. I'd see videos or read stories and say to myself "Man, I wish Rylee could tell me about her favorite stuff she did last weekend." "I wish she could tell me what hurts."
I began applying these questions to the students I served in the classroom too. I even remember the first time I applied one of those questions to a student of mine with complex communication needs. This particular student began expressing pain with his body language and repeatedly taking off his sock. I knew something was hurting him; however, he had no way to let me know specifically what was wrong. Was it a thorn in his sock? Did he twist his ankle? Were his shoes too small? I felt defeated not being able to figure it out. I felt his pain because I was also a mom to a child that could not tell me what was wrong.
I eventually made the decision to homeschool knowing I wanted to implement PODD and teach Rylee how to read and write. PODD stands for Pragmatic Organization Dynamic Display. This system aligned perfectly with my desires, hopes, and dreams for Rylee. This system (and any robust AAC system) mimicked the way every single person acquires language, including you and me. It provides all the language up front and is taught through something known as aided language input. Aided language input has many names; aided language stimulation, aided language modeling, focused language stimulation etc.
So that is what I did. I pulled Rylee out of school and began modeling her first PODD book in January of 2013. If you didn't just do the math, it took me 3 years of hearing and learning about PODD before I actually did something about it. Please, don't wait as long as me!
I modeled the book when I talked to her. I structured activities that would allow me to model language. She would sit in the floor sporadically flipping through pages. Then she accessed the PODD 7 months later. In just 4 months of using that first PODD she began using it less and less. That showed me she needed even more language. So, I made her the second PODD.
I thought there might be a transition period, but I was wrong. She spent a day flipping through it and then immediately began using it when she had something to say. At that point she refused her old PODD book never to use it again. We have since transitioned to several other modes of communication but I'll save those for future posts. We were well on our way to uncharted territory! In a nutshell, this is how I went from gatekeeper to KEY-MAKER!
Unlocking language is life-changing and, in my opinion, the most important "functional life-skill"!
