The Injustice of Conformity

I know I promised you all the steps I took to get my daughter to where she is today in her communication and overall education, but I want to step back into the blog world with a different type of post.  I don't know how familiar you all are with Native American history, but I see a parallel with a particular aspect of it with current practices in the special education system.  The parallel I see is the act of conformity.  I don't feel it is purposeful; however, we must be cognizant of the damage it does to our loved ones even if it is inadvertently.

Conformity happens through expectations placed upon students with differences to act more neuro-typical.  We, as adults, like to control what we expose our students to.  As adults, we like to assume what students with disabilities are capable of.

Instead, I envision a day when we can accept these differences, learn from them, and change the way we approach educating them.  Our current system needs a paradigm shift in which students with differences are embraced and considered to be life-long learners just as we all are.  Why do we focus so much of our efforts on expecting our students to be passive and compliant?

It is not our job as educators to impart our own knowledge into the minds we teach, but rather empower them to be thinkers, doers, and active participants in their own education and lives.  How do we do this, you ask?  By making their education limitless and meaningful!

I write this to encourage you to find authentic education for your students and scrap those canned practices in which the underlying pedagogies are not even comprehended by the ones implementing them.  We need to erase the ideas of what things should "look" like.  Most importantly, find your own way that works and find what intrinsically motivates your students to be life-long learners! 

Remnant Books

Now that some of the background has been provided to show the shift I took from those common special education behavioral approaches to a perspective that removed all demands on her to prove herself repeatedly, I want to share the next step I took.  I really think you are all going to like this because it is something that is extremely easy to do, a remnant book.  Rylee and I began constructing her very first remnant book in May 2013.

A remnant book is essentially like a scrapbook of activities the student has participated in.  You can include anything you like in the book.  You can display it in any way you like.  I am not a crafty person whatsoever; therefore, I just used a three-ring binder with page protectors.  I bought colorful cardstock to glue the ‘remnants’ to.  Items to include in the remnant book can range from receipts, movie ticket stubs, pictures, or napkins from a birthday party etc (anything really).  I also included a short sentence that described the event.  I quickly learned that once we completed a remnant book page I needed to seal it with packing tape.  A mistake I made is not including the date of the activity on the page.  I wish I would have done that!

There are a couple of purposes the remnant book serves.  One is for conversation starters, which can be very helpful to school staff and extended family to engage in conversation about meaningful topics to the student.  An example, the student comes to school from the weekend and the school staff can look at the new remnant book page and see that ‘Sally’ went to the movies with her family.  This can pose as a conversation starter to talk about the movie and provide vital opportunities to model Sally’s AAC device!  The same goes for the school staff and Sally to add remnant pages about school so Sally’s parents and she can talk about what happened at school that day.  The second purpose the remnant book serves is for daily writing topics.  I’ll get more into that in another blog post. 

It did not take long for Rylee to catch on to what the remnant book was all about.  We spent that summer creating her first book.  Rylee simply adores her remnant books because they are her own experiences and the book is something she helped to create!  When I would see her drag it to the living room, I would sit beside her and model her PODD to talk about the remnant page she was looking at.  It wasn’t until September 2013 that she began using the remnant book for writing topics, but by then she had plenty of topics to choose from for her writing.

As you can see, a remnant book is very easy to implement.  If I can do it, anyone can do it!  Remnant books are as personalized and crafty as you make them.  It is also a great activity to do together and is something your child will surely cherish.  

You Mean There Is A Better Way?

I apologize for taking so long to post. Between homeschooling Rylee and completing my own coursework, it is not always easy to find the time.  I am going to do my best to walk through the steps I took to provide Rylee with the opportunities that have led to her success.  As you read from my last blog post, I started homeschooling Rylee in August 2012.  It was January 1, 2013 that marked the first day I began modeling her PODD book without any expectations on her to use it.  There will be more PODD specific posts in the future, but for now I think it is best to follow the timeline of events that unfolded.  In July, 2013 she accessed the PODD for the first time using my finger.  That is a quick review of how the ball started rolling.  I want to rewind that timeline just a bit to incorporate another critical piece to the puzzle.  

In the previous post, I talked about my goals for Rylee to fully express herself as well as to teach her to read and write.  At this point in time all of my energy was invested into implementing PODD, so I had very little left over to also figure out how to teach her to read and write.  Keep in mind that I did all of this on my own without any therapists or training.  I knew there had to be a way to teach Rylee how to become literate, but I only had special education training that focused on behavioral approaches.  I began to follow the Penn State Literacy website by Janice Light and David McNaughton.  Through this I explicitly taught Rylee each lowercase letter sound through a modified version of Discrete Trial Training.  We focused on one new letter each week from August 2012 to May 2013.

Okay…. pay attention because here is that critical piece to the puzzle I told you about.  In April of 2013 I saw an e-mail on the Angelman listserve from Erin Sheldon about the Bridge Protocol, which is an emergent literacy skills assessment.  She let me fill it out and send it back to her for feedback.  I will never forget that private e-mail thread as it changed the course of Rylee's literacy instruction forever!  Erin so graciously and diplomatically pointed out the error of my ways.  I was dumbfounded that this whole other perspective to literacy instruction was out there that made so much sense.  It aligned perfectly with the theory behind PODD which I had already been doing.  This was the course of action that I knew I needed to pursue, but this would mean a whole lot of research again.  

So that is what I did.  I knew I had been going about her literacy instruction all wrong.  It was wrong because it was limiting to what I wanted her to learn.  It lacked any opportunity for being intrinsically motivating, and most importantly it made her prove herself time and time again.  Making Rylee prove herself was the primary fault of those early instructional practices that we used such as PECS and Discrete Trial Training.  When I switched to PODD I had to switch mentalities of not making Rylee prove herself. Instead, I had to presume her competence.  Additionally, by me modeling PODD and using DTT for literacy, they really clashed with one another because the theories behind them were polar opposites.  

Here was Erin, my beacon of light shining so bright pointing me in the right direction.  I knew without a doubt in my mind this was the missing puzzle piece.  I will forever be indebted to her for opening our world. Little did I know it was going to lead to such incredible achievements.  She introduced me to the "Greats" as I call them.  You can find some of them too by researching Caroline Musselwhite, Gretchen Hanser, David Koppenhaver, Chris Kliewer, and Karen Erickson.  Those names will lead you into a world of literacy you never knew existed.  The Center for Literacy and Disability Studies is a great resource that holds a wealth of information.  The Children with Disabilities: Reading and Writing the Four Blocks Way book is another great starting point.  

That is what I spent the summer doing…. reading, researching, and trying to wrap my head around how in the world I was going to make this happen for Rylee.  It was August of 2013 when I kicked it all into gear.  It all happened so fast.  The month prior she first accessed the PODD and then the next month we moved on to literacy.  I do not believe things would have progressed so fast with the literacy achievements if she did not first have the PODD.  The PODD played an important role because she was able to demonstrate her knowledge base.

Now you have some background to help you understand that this is not something that happened overnight. It took a lot of research on my part (and a lot of questions for Erin).  Stay tuned for my next blog post that will kick off with the actual steps I took to structure a balanced literacy program.  This post might seem tedious but I think it is very important to understand the chain of events leading up to her accomplishments.

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.