We started off with three-letter boards where the alphabet is split into A to I, J to R and S to Z. To begin with, I needed so much prompting to help me to get my apraxic body to point to the letters. With patience (mostly from mum), determination (from us both) and sooo much practice, my independent accuracy improved. Zoom forward a year and we finally graduated to the 26 letterboard. This one has the entire alphabet on one board- hence why we call it the 26! Then we were back to mum prompting me all over the board. This took me a little longer to master independently because there is so much purposeful brain-body coordination required. Can you imagine the sense of freedom I felt when I finally spelled my first open sentence? It was liberating and it set me free.
At this stage, my irreplaceable pal, Anna, came on board- excuse the pun! She and I worked tirelessly to bring me to absolutely independent open communication. You see, I need a CRP to help me with STOC. CRP stands for communication regulation partner. My CRPs are Anna and mum. This is because the are the only two who are trained to do so. CRPs are rigorously trained to understand our Apraxic bodies and our wacky sensory systems. They are trained to tune into us on a different level. Anna and mum are my counter-balance to keep me regulated. When I am high, they go low. When I am low, they go high to keep me going, Without them I would simply have too much to compete with. They are my feedback system when my own is offline. They are my greatest supporters and I cannot tell you how lost I am without them to help me to communicate. Anna has been through it all with me.
Now, I advocate for myself and my tribe with confidence and conviction. It has been a long road, but the best one.
If you, or someone close to you, is non-speaking, I implore you to start this journey. You will never regret it.
Your friend under the stars