Time is Patience

Time is Patience

"The two most powerful warriors are patience and time." ~ Leo Tolstoy

One of the most valuable supports for Rylee is time, but this requires a great deal of patience on my part. After reflecting on this important component to supporting Angelman individuals, I created this acrostic poem. This poem encompasses a variety of educational strategies that enable us to value the contributions our loved ones can make when provided with the opportunity to do so. These methods are inviting and respectful while never enforcing compliance. They foster student-centered learning as opposed to being teacher-directed. Providing enough time allows our kids to coordinate their bodies to respond and interact with others. 

When Rylee first began writing with an alternative pencil, it would take her several hours to select a few letters. She would pick a letter or two and walk away. Some of her writing pieces would even take several days. I would often do a sink of dishes, a load of laundry, and on a few occasions, we’d get haircuts during these long waiting periods. I would remind her during the break what topic she chose to write about and what she had written already, then I’d tell her to keep thinking about what she wanted to write next.  I learned the value behind this concept of time from her communication journey with PODD. Each time I modeled her AAC, she would walk away. She did this for 7 months of my modeling until one day she approached it and used it for the first time.

I learned that walking away was essential because of her neurobiology. I learned that she needed to walk away to hear what I was saying, because she couldn’t simultaneously focus both visually and auditorily. Prior to a comprehensive AAC system, we used the phrase, “Rylee, you have to look” when we employed ABA methods. Each time we said that and forced her to look, her hearing would turn off and her brain would ‘bog down.’ In fact, the theories in which ABA is grounded in just exacerbate many of the significant challenges Rylee faces every day. ABA intensifies dyspraxia, apraxia, and auditory processing disorder. Therefore, we need an approach that respects neurodiversity. Below you will find a few of the methods that embrace this level of reverence.

THINK ALOUDS

A think aloud is a modeling strategy in which you speak your thought process out loud. This facilitates the development of a student’s inner voice, which plays a vital role in cognitive and language development. It would look something like this:  

When modeling writing the word ‘fun’ with an alternative pencil, you would think out loud by saying… “I’m wanting to write the word fun. I need the letter F that says ‘fuh, fuh, fuh for Fffffffun (emphasizing the f sound).’ I’m looking…I’m looking. Let me know if you find it. *expectant pause* Oh, there it is.” This can be used for a wide range of activities, but this is just one example.

INCORPORATING INTERESTS

Student-centered learning revolves around developing the learner’s interests. Embedding interests into the student’s learning also fosters intrinsic motivation. Rylee would much rather write about a personal experience such as a trip to Florida, than write about something she is uninterested in such as the newest NFL MVP. Interests can be incorporated into communication and literacy experiences using a remnant book as a self-selected topic.

MODELING AAC/WRITING

Modeling language and writing are very powerful strategies for our kids. The trick is to allow our kids to do what they need when we model, even if we suspect they are disinterested. If I never allowed Rylee to walk away from my modeling, she would never have progressed forward in her communication and literacy development. I never would have learned that she needs to move to think clearly. I purposefully continued to model despite my strong desire to give up because I thought she hated it. Rylee preferred to flip through the book on her own. She used this time with the book to figure out what she had heard me say each time she had walked away. I sure wish I had known that when I started modeling her PODD.

Over time I learned to redefine what active listening ‘looked’ like for Rylee. For the neuro-majority, typically they make direct eye contact, they are still, they are quiet, and they give their undivided attention to another person. That is the direct opposite of what active listening looks like for Rylee. For Rylee, active listening means she is moving, she has her hands busy with fidgets, and her vision is occupied on something else other than what she is listening to. This was one of the most treasured things I have learned about Rylee because it positively impacted our entire family structure. In fact, Rylee reads by using her vision on something else such as watching TV and engaging her hands with fidgets. Once I understood how Rylee functions, I merged that understanding in everything we do as a family.

EXPECTANT PAUSE

An expectant pause is something we can do to encourage participation without forcing it. To give an expectant pause during a conversation, you might model an opinion of something and then wait with an expectant look between the AAC device and the user. This sends the message that their turn is encouraged, but it’s also okay if they don’t participate either. If they don’t take a turn, you just continue as you were. You will see how I added an expectant pause right into the think aloud example above.

These are all strategies we can do while we offer adequate time for our kids to process, organize, and act. Respecting neurodiversity builds trust and strengthens relationships which is what these methods aim to do. Also, exceptional students do not require content that is drastically different from their peers. These guiding principles can be used to help all students learn and develop in the general education curriculum. 

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!

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.