From Gatekeeper to Key-Maker

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.

And...PODD was my answer!

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"!

Fruitcake

          When it comes to Rylee, I am beyond guilty of so many typical societal flaws.  In her younger years, one of those flaws was not presuming her competence.  Learning about this concept laid the foundation for life changing events.  I know I’ve mentioned it many times on social media and this blog.  However, I feel it is vital for caregivers and educators alike to understand.

          One major obstacle I am seeing amidst our families supporting loved ones with complex needs, especially in school districts, is an overwhelming feeling of not knowing where to start.  Trust me, I get it!  I get it as much as anyone because I was there once.  I’ve lived it and persevered through it!  Throughout our community, I hear comments such as “I wish my kid could do that,”  “My child isn’t that high functioning,” “That mom is CRAZY!”  You know what?  I get it.  You know what else?  I’ll be that crazy mom any day over the type of mom I was before!  I’m not saying to do things just as I did (that’s crazy).  I’m saying there are certain principles to follow that will lead you down a path you never knew existed and one day your kids will thank you for it.

          I have an analogy for you.  I had an epiphany while watching Ratatouille with Rylee a while back.  There is a segment I’m including here that I want you to watch as it refers to what I’m talking about.  The backstory (in case you’ve never seen it) to this scene is Linguini accidentally messed up some soup of this fancy restaurant.  Remy, the rat, witnessed this debacle and quickly fixed the soup which customers loved.  He was discovered and Linguini was asked to ‘dispose’ of him because he was a rat. 

          In this scene, Remy is trapped in a glass jar because he was found in a restaurant kitchen.  Linguini begins talking to himself and Remy.  He discovers Remy can understand him based on his body language and therefore saves his life.  What would have happened if Remy had a complex body and could not respond to Linguini through gestures?  Would harm have come to Remy if he would not have been able to make it known to Linguini that he, in fact, could understand him?  That is why we need to presume competence!  Look at what Remy could create when given the chance!

Watch Remy and Linguini's scene here!

          Now, ask yourself what happens when we rely solely on what our students with significant disabilities demonstrate to us?  What happens when we base their educational opportunities primarily on what they can prove?  What happens to educational opportunities when we lean exclusively on data collection for IEP purposes?  Data-driven decisions are not always the only, or best, course of action for those with developmental disabilities.  If we do this, their education and life experiences likely become very limited.  What if our assumptions are wrong?  Are we doing harm by limiting these experiences?  These are self-reflecting questions I had to ask myself once I made that frightening decision to home-school and become responsible for Rylee’s education.  Unfortunately, I asked these questions later in the game than I should have and damage had already been done based on the lack of presuming her competence. 

Instead, let’s look into portfolio assessments.  Let’s rely on presuming competence and seeing where it takes us.  Let’s not create robots.  We can write IEP goals in more efficient ways.  We can create authentic and meaningful learning environments that support a wide range of learners! 

Providing the least dangerous assumption was a game changer for us.  The tables began to turn when I reflected upon what I needed to do to make things better for my daughter and I had the research to support my goals.  I had to make a conscious decision not to be like Linguini and demand results before I believed. 

In the words of Jimmy Buffet…”There’s a little bit of fruitcake left in every one of us!”

Letter-Words

This post is going to revolve around an activity I called Rylee's Letter-Words.  I know, I know it isn't a very creative name.  I also cannot take credit for the activity itself as it was introduced to me by a good friend, Erin Sheldon.  This was a great emergent literacy activity which gave Rylee power in constructing her own messages through print rather than just her AAC device.  

This activity is easy to set up and great for short attention spans/processing difficulties. Students with significant disabilities need an extensive amount of exposure to the alphabet for meaningful and authentic writing purposes.  This activity does just that!

We used this strategy for writing messages in birthday cards, but it can be used for lots of other things too.  I created a binder, but you don't have to do that.  I segmented that binder for each letter of the alphabet, but you don't have to do that either.  

What you do need:

Two different colors of sticky notes
Pen or marker 
1 Alternative Pencil (anything that gives the user access to the entire alphabet)
Birthday Card

I'll use the example we did for my sister's birthday card we did a couple of years ago.  I showed Rylee the birthday card and told her I thought it would be cool if we wrote Auntie a message for her birthday.  I asked her to think about what she would like to say to her Auntie and pick a letter from her letter board (her alternative pencil at the time).  She happen to pick the letter 'P'.  So then I wrote three different words beginning with the letter 'P', one word for three sticky notes of the same color.  Next, I wrote the words "Something Else" on a different colored sticky note.  

If your student or child does not pick a letter, it might be that the expectations aren't clear enough at first so you can just model it yourself until they do in fact choose their own letter. Also, please remember to give an abundance of time!  Wait expectantly; looking at the child and then the alternative pencil.  The emergent literacy activities I conducted were never forced upon her, but merely an invitation for her to participate in a meaningful and engaging way.

I can't remember the exact words I wrote, but an example is Perfect, Pretty, Precious.  Then I displayed them with "Something Else" in the top right hand corner.  I read the words to her while I pointed to each one.  She chose the word 'pretty'; so that was her message to her Auntie for the birthday card.  If she had chosen Something Else, I would have written three different words beginning with 'P'.  There you have it folks!  This is one simple emergent literacy activity you can easily do with very little time.

A Weighted Crayon

 Rylee's Weighted Crayon

Another apology for not being consistent in my blog postings, but it is a challenge for me to find the time to post.  This is another side post regarding a recent creation for Rylee - a weighted crayon.  Recently, she was watching a cartoon about animated crayons and she expressed to me how much she wanted to learn how to draw.  Throughout the years we have tried many adaptations without much luck.

In the early years, the dreaded technique Hand Over Hand (that I strongly disapprove of)  was widely used with Rylee.  Hand Over Hand is the act of another person placing their hand directly over the learner's hand to complete a task.  Research has shown this strategy is not efficient for students with developmental delays in gaining new skills.  I would love to see this method eliminated in every special education setting across the globe.  

This outdated approach is wrong for Rylee for many reasons but primarily due to the way she processes sensory input.  Aside from the research that opposes this technique, I wanted to get Rylee's input on the topic.  Here is what she had so say:  "Grabbing my hand to make me do something is not a good way for me.  Think really not great because it made my brain shut down and not think."  Never again will I permit it for her.

Rylee also has very ataxic movements and therefore requires weighted objects to provide proprioceptive input.  She needs time to explore and learn on her own with passive models as a guide.  It is my job to provide her with the tools that enable her to make her own body do what she wants it to.

So, I browsed Pinterest (my go-to site) for DIY weighted adaptations.  I found a couple of ideas that I had intended on using.  Thankfully, I had my husband with me at Lowes or else we would never have come up with this idea.  As we were browsing for the materials, the original idea began to change as it is Ryan's nature to improve ideas not follow directions. Ha!      

These are the materials you will need.  Everything but the crayon and Coban can be purchased at any home improvement store in the plumbing department.  You can see I bought two sizes of the steel pipe nipples.  I wasn't sure which one she would prefer so I bought both to try.  I plan on using the extra one to create a weighted spoon/fork.

In case you cannot read the packaging in the picture above you will need:

Materials-

1 Galv. Cap 3/8"
1 Galv. Floor Flange 3/8"
1 Galv. Steel Pipe Nipple 3/8" at either 3 or 4 inches long.
1 pkg. #31 O-Ring at 9/16" x 5/16" x 1/8"
1 roll of Coban
1 pkg crayons

All you do is screw the cap on one end of the steel pipe nipple and the floor flange on the other side.  Place the O-ring around the crayon as pictured above.

Then secure the crayon inside until it is snug.

Lastly, wrap the Coban around until the texture is sponge-like.  There you have it.  This is designed to promote a palmar supinate grasp often used in the earliest stages of scribbling.  To imagine what that grasp looks like, think of holding a knife in the palm of your hand ready to defend yourself with all four fingers wrapped around and your thumb on top.  The movement associated with this type of grasp is a gross motor movement where the shoulder, arm, and hand all move as one unit.  

Scribbling is such a crucial part of writing that many children with significant disabilities miss out on while their typical peers receive an excess of exposure to scribbling before learning to draw and write.  Promote writing for all whatever it takes!