The Beginning

I suppose it is best to start from the beginning of our journey through communication and literacy for my daughter.  Throughout her public education, she experienced an inclusive preschool as well as a self-contained classroom primarily for individuals with autism.  During this time I decided to further my own education with the hope of homeschooling her in the future.  That dream of homeschooling her became a reality in 2012.  I had what some would call 'outlandish' dreams for my daughter's future.  I wanted her to have a full language communication system and I wanted her to read and write.  Why is that outlandish?  Rylee has Angelman Syndrome.  Therefore, the label placed on her tends to make others think she is incompetent and incapable of learning anything beyond preschool level activities.

At the time of pulling her out of public school, I knew what my ultimate goal was for her but I wasn't completely sure how to go about it.  That wasn't going to stop me from figuring it out.  What I knew at that time was PECS (picture exchange communication system) was failing her and she had never received any type of literacy instruction.  I had to prioritize my goals because I was going to be the sole person to implement them and that meant I had to do the research and learn how to do it myself.  I decided to first focus on communication as I knew she had so much to share.  This meant I needed to change a few things.  After months of research I learned that presuming Rylee's competence was of the utmost importance.  The term 'presuming competence' goes against the theory behind PECS which is a limited system that forces you to prove yourself over and over again until someone deems you able to proceed to the next phase.

I had to find a system to align with presuming her competence.  The system I chose was PODD (Pragmatic Organization Dynamic Display) because it was a comprehensive language system that presumed the users competence and was taught through something known as 'aided language input'.  Aided language input is a modeling strategy of the users AAC (augmentative and alternative communication) system by pointing to key words in a spoken phrase.  This mimics natural language acquisition.  Think for a moment:  How many times did you hear the word "Mama" before you actually said it?  Babies are born into this world immersed in the language they will one day speak.  The same should be the case for individuals with complex communication needs.  We must immerse them in the language system they will use by modeling their device.

Okay, I chose the system, now what?  Well, I first had to buy the PODD software as well as Boardmaker (both available on Mayer-Johnson's website).  When the software came in I read the manual cover to cover and researched more about aided language input online.  Then I was ready to create the book.  I spent three months customizing, printing, laminating, cutting, and binding it.  Finally, January 1, 2013 I was ready to model her book.  I'm not going to lie, that book was big and intimidating.  It felt so unnatural to model the symbols by pointing to them because I was so accustomed to just talking to her.  Nevertheless, I started to model when we home-schooled.  I would follow her lead and comment what she did.  If she played with a puzzle, I would model the language to talk about completing the puzzle.  If she played with her baby dolls, I modeled the language in her book for her babies.  If we went somewhere, I modeled where we were going.  In other words, I modeled, modeled, modeled.

I modeled for 7 months never expecting anything out of her.  It never seemed like she even looked at the book.  I'd model and she'd walk away, BUT I kept on modeling trying my best to not give up.  Then one day in the middle of July 2013 she showed interest in actually using it.  I had navigated through the book to the food page as she had just been swimming.  Rylee stopped and stared intently at the book.  I could see that she wanted to use it, but she knew her physical limitations.  That was difficult for me to watch so on a whim I showed her my pointer finger and said "Will this help?"  She grabbed my finger instantly and slammed it on the cheese icon.  Obviously, I gave her cheese.  She has been non-stop ever since, showing us that for so many years she has had a vast amount of knowledge locked away in her head.

I will always remember that day when she grabbed my finger as it changed our lives forever.  Never in a million years did I know it was going to lead to all of her great success.  I have learned so much from her and I want you all to learn from her too.  She has so much to teach us all.  So there you have it; that is the beginning of our life-changing story.  There is so much more where this came from so keep a lookout.