Exploring and reflecting on meaningful pathways to inclusive and personalized learning and living for students with complex developmental needs because education should prepare all students for a lifetime of inclusion, connection, growth and learning.

Thursday, December 29, 2016

Disability Creation Process

I'm currently reading the book When the Body Says No: The Cost of Hidden Stress by Gabor Mate. Over the past couple of years, I have becoming increasingly more fascinated with the mind-body connection as my job has expanded from working with students who have "disability" labels to those with "social/emotional/behavioural" labels. When I was taking my Masters and studying inclusive practices for students with "significant disabilities" I would often come across statements about the two categories of students who experience institutional discrimination and then would quickly skim over the material related to this second group so that I could get to my group of focus. I was looking for any material that would embrace the social model of disability.

The social model of disability is a civil right based approach to disability developed by disabled people. It focuses on challenging and removing barriers which prevent disabled people from living full and active lives. These barriers are many and varied and can lead to institutional discrimination. The barriers include such things as inaccessible environments, lack of inclusive or useful education, discrimination in employment, segregated services, poverty, belief in the medical model, prejudice, devaluing, inaccessible transportation, inaccessible information. What we need to do, as a society, is get to a point where it is just natural to design in a way in which barriers do not exist.
Learning and understanding are processes. One of the first things I remember learning in the first neuroscience class that I took in my Masters program was that we need to be thinking about the intersection of "nature" and "nurture" rather than them as separate entities; That interactions between genes and environment shape human development. For a long time we believed that genes were "set in stone" but we are now seeing that experiences actually impact how genes are expressed (turned off or on) which then impacts how the brain develops. We know that certain genes need to be activated at certain times in order to facilitate healthy development. If these genes have been "turned off" it impacts the foundation that future brain development should be built upon.

One of my first thoughts in hearing this was that in our guilt-ridden society this kind of information could quickly become focused on placing blame rather than about a stepping stone to understanding how to better support development. It could create hopelessness in educators as it leads to thinking that if the foundation is not there as a result of early experiences there is nothing that can be done. This morning, while reading this book, I came across this quote that resulted in me thinking back to these initial thoughts...
"While all of us dread being blamed, we all would wish to be more responsible - that is, to have the ability to respond with awareness to the circumstances of our lives rather than just reacting.We want to be the authoritative person in our lives: in charge, able to make authentic decisions that affect us. There is no true responsibility without awareness. One of the weaknesses of the Western medical approach is that we have made the physician the only authority, with the patient too often a mere recipient of the treatment or cure. People are deprived of the opportunity to become truly responsible."
The  line that stood out the strongest is that there is no responsibility without awareness. And this led me back to something I came across at some point but have not explored in too much detail. It has me thinking about the intersection point between the medical and the social model - that point where we acknowledge "impairment" but also recognize that "impairment" is only a disability if the environment has not adapted to it. It lead me back to the "the disability creation process" (image below) and got me thinking about how this connects what I was originally looking at in regards to "disability" labels and what I've been digging in to more recently in regards to "social/emotional/behavioural" labels.
This process recognizes that disability is not a static state as there are several factors continua that come in to play for any individual that ultimately place us in any moment along a continuum from "social participation" to "disabling situation". Situations of social participation correspond to realizing, through the interplay of our personal factors and environmental facilitators, life habits that facilitate inclusive survival and well-being. These life habits include things such as cooking and eating, going to school, working, participation in meaningful leisure activities, living in home and community...etc. The model actually has a list of life habits that should be considered: nutrition, fitness, personal care, communication, housing, mobility, responsibility, interpersonal relationships, community life, education, employment, recreation, and "other habits".  Disabling situations correspond to lack or, or reduced realization of any of these life habits. Examples would be not having a job, not going to the school in the same capacity as what is normative for others, not being able to go out, not being able to live where he/she wants...etc. 

I think perhaps the one thing that is missing from the model is that the interaction between environment and personal factors actually has the ability to change the personal factors if I go back to the idea of genes not necessarily being set in stone. There is not a set point that we start out with and remain at on those continua. I think the key is to recognize that none of the continua in the diagram is static for any individual. 
  • Disability is not a definite status but an evolving notion.
  • It is relative, varying over time, gender, age, context and environment. 
  • It is a situation that can be modified by reducing impairments or developing aptitudes (acting on personal factors) as well as by adapting the environment (acting on environmental factors).
  • When acting on such factors, it is therefore possible to transform a disabling situation into a situation of social participation. 
Realizing the life habits that this model defines as "social participation" results in "well-being".  "Well-being" is not something that matters only for those with "disability" or "social/emotional/behavioural" labels. It matters for all of us. This then shifts our focus to solidarity and creating connections and communities where we realize together the "life habits" that are on the "social participation" end of the continuum. 
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Wednesday, December 28, 2016

One Word 2017 - Self-Reg

It's that time of year again when we shift toward thinking about the concept of 'new beginnings' that seem to come with the changing of calendars. For the last couple of years rather than thinking resolutions, I have looked at "one word" that would set a focus for the year. The word that I have picked these last couple of years are actually words that found me through the course of the previous year. This year is no different as the word that I've chosen is one that has been a part of my life for several years but has become more a part of my life through 2016. The word that I'm choosing this year is Self-Reg.


This past year has brought with it many opportunities to dig deeper in to Self-Reg. I have come to more deeply understand the science of energy, tension and stress and, in that process, the word "Self-Reg" has become meaningful to me both personally and professionally. I'm excited to see what continued learning and application of Self-Reg will bring in 2017. 
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Saturday, August 13, 2016

CCN Alphabet: Language of Control

To get this series going again, I have decided to jump around the alphabet instead of follow alphabetical order. I wanted to share that in case anyone is wondering what happened to the letters F through K. They will come. As I am completing posts, I am linking them in the original post in the series which can be found by clicking here.

The idea for this topic comes from the book Enhancing Communication for Individuals with Autism: A Guide to the Visual Immersion System by Howard C. Shane, Emily Laubscher, Raif W. Schlosser, Holly L. Fadie, James F. Sorce, Jennifer S. Abramson, Suzanne Flynn, and Kara Corley. The information on the Language of Control and the language functions that reflect the Language of Control comes from this book and the thoughts and ideas are a combination of some of the thoughts and ideas from this book as well as ideas from other sources and my experience. I also wanted to think through how to use core boards or the individual's core based language system with some of these ideas.

Often we tend toward using visual supports from a "behaviour management" perspective. It's important to not get too caught up in this as it can serve to inhibit spontaneous communication. Rather, but we should reframe this and look at visuals and language supports from a self-advocacy and opportunity for expressive and receptive language growth lens.

As outlined in the book mentioned above, the Language of Control is related to "control functions" that allow the individual to influence his or her surroundings by inspiring others to act. These functions are (1) protesting and refusal, (2) organization and transitions, (3) requesting, and (4) directives. These functions are controlled based rather than conversational in nature because their goal is to influence the behaviour of another rather than to initiate a conversation exchange.

Protesting and Refusal: According to this book, protest is a "behaviour that expresses objection or disapproval of an activity, event or person", while refusal is a "behaviour that expresses rejection of an object, activity, or event suggested or initiated by another person." Most children have a non-symbolic way of communicating protesting and refusal so the idea is to work toward a more symbolic (and often adaptive) way of protesting or refusing.

The language of protest and refusal is rooted in core words. The core words that are associated with protesting and refusal include "all done" or "finished", "stop", "no", "more", "help". "Take a break" is an important phrase that should be taught as well.

When working with students around the language of protesting and refusal we should (1) explicitly teach the words, (2) model the use of the words. and (3) ensure that the words are always easily available to the individual.

When we teach core vocabulary we need to do it "during meaningful interactions throughout the school day" (Project Core Website). At 12:15 of this Dynamic Learning Maps PD video there is a great demonstration around directly teaching core words to a group of students. I will be posting a separate post soon with some ideas around strategies for teaching the words included in the language of control. Modeling the use of the words is related to reading the individual's cues and modeling the language around it. Example: Modeling the capitalized words without expectation that the student will say them: "It looks like you DON'T LIKE that and that you are ALL DONE." Ensuring the words are easily available to the students means having their system there but it might also mean having these specific visuals available in different ways (i.e. having them tapped down to a work space or included right on a visual schedule).

Although protesting and refusal are primarily about expressive language, it is also important to be aware of the times when one cannot immediately honor an individual's protest or refusal as being able to cope with this requires receptive language skills. Visual supports such as first-then displays, timers and countdowns, a "surprise" visual, and social stories can be used to facilitate receptive language. To be effective, there may need to be some explicit teaching around these. Ideas related to that specific teaching will be included in the blog post mentioned above.

Organization and Transitions: This book defines organization as "the act of arranging elements into an orderly, functional structured whole" and transition as "the process of changing from one state, stage, activity or environment to another." Memory, attention, time management, problem solving, initiating, sequencing and prioritizing are all skills that are important to organization. Developing these skills cannot be done without also developing the receptive language understanding that is necessary for the skills. The visual supports that we put in place for the underlying skills can also serve as an opportunity to work on language development.

Specific things we should be thinking about when teaching organization and transitions includes completing multi-step directions, sorting and organizing materials, following a schedule, understanding and using measures of time, moving from a preferred activity to a non-preferred activity or vice versa, dealing with changes in familiar routines, dealing with a delay in receiving an anticipated item or activity and tolerating unexpected events.

Again, we need to think about the language that is important and ensure that we are teaching, modeling and making symbols available. We should consider (1) prepositional words like "in", "on", "away", "up", and (2) time-related words like "first", "then", "later", "wait"...etc., The action and descriptive words outlined in directives section below overlap in to the area of following schedules, sorting and organizing.

There are a lot of visual tools that can be used to support receptive understanding in this area. We need to be cautious that our primary goal with these tools is not that of compliance as that can have va very negative impact on language and communication growth.  These tools will be furthered explained in another post but they include things like visual schedules (including learner constructed schedules), first-then visuals, countdown boards, task or activity schedules, social stories, video modeling, and symbols like "surprise" or "wait".

Requesting: Requesting is defined as "expressing a desire for objects, activities, people, affection, attention, recurrence, assistance, information and/or clarification."

When thinking about requesting, we need to be cautious around believing that there is language understanding if an individual is using a scripted phrase like what would be used in PECs. A scripted phrase is no more meaningful than a single work and doesn't represent generative language. As this book points out, PECs focuses primarily on requesting but there is little opportunity for language development as it consists of mostly nouns, it uses carrier phrases rather than generative word-by-word language, and the individual words represented by the symbols are not actually taught.

As we expand requesting skills, it is important to also focus on descriptive language as having descriptive language allows an individual to request things that may not be represented in their system or are not directly in sight. This doesn't mean we make the individual describe everything they are requesting, but rather that we embed descriptive approaches naturally so that the individual is coming to an understanding of these words through seeing them modeled and used in natural contexts.

Directives: Directives is "explicit instructional language used to control the behaviour of another." Underlying a directive is an implicit understanding that a specific order or command will be carried out. In regards to the "language of control" we are looking at the ability of the individual to expressively give others directives. This does involve receptively understanding the language of directives.

This book outlines the most common directives as being either control based (sit down, quiet, no running), routine-based (get, open, put away, stand up), instructional (cut, circle, point), or play-based (roll, throw, blow, pop). There are many opportunities for teaching vocabulary and generative language (putting words together to create meaning) within directives. Understanding and using verbs, prepositions and descriptors is particularly important. Many of the most important words are included in core language lists. It's also important to recognize that not following directions may be related to receptive language (understanding of what these words mean as individual words and in combination with other words). Not following directions may also be related to things like attention, memory, or inability to organize multiple steps. or just being too overwhelmed/stressed in the moment to be able to follow the direction. When an individual has difficulty with following directions we need to step back and think about weather we are properly scaffolding.

This book offers suggestions around teaching directives by moving from video modeling of the directive to a static picture from the video to incorporating symbols and putting them together to represent the directive. As I read through it, I was thinking of some ways to modify it and embed it with teaching of core words and/or Predictable Chart Writing.

Another suggestion they offer related to play is to create topic displays that allow the user to manipulate symbols in to phrases or sentences. I could see the value in this but as I read through it I also thought about the need to move it over to modeling on a language system so that the words that were being used didn't just disappear when the activity was done. This is also got me thinking about incorporating the idea in teaching core words and/or Predictable Chart Writing.

You can advance these topic displays from simple statements to more advanced by adding in different elements. If used, they recommend using them around highly motivating activities. I'm including pictures of how a "Bubbles" topic display could be expanded over time. Note that there is a line on the side included to "comment" on the activity. As well, these displays can include a "sentence strip" at the top that is either color coded or not in which the symbols and be moved up to create a phrase or a sentence.




Final Thoughts: The communicative functions outlined here are far from the only communicative functions that individuals should be learning but they are important ones to learn in the middle of learning others. As mentioned at the beginning these ones are very restricted in regards to learning conversational skills. 

Ultimately, being explicit about teaching students the language of control positions them to active agents in their lives. It is also important and important step in social/emotional development that positions individuals to engage in organizing and problem solving as if one is unable to consistently exercise control over their own life they will become passive and helpless and are at an even greater risk for abuse.  
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Saturday, July 23, 2016

Quote of the Week: Playing Nice

"By processing information from the environment through the senses, the nervous system continually evaluates risk. I have coined the term neuroception to describe how neural circuits distinguish whether situations or people are safe, dangerous, or life-threatening. Because of our heritage as a species, neuroception takes place in primitive parts of the brain, without our conscious awareness. The detection of a person as safe or dangerous triggers neurobiologically determined pro-social or defensive behaviors. Even though we may not always be aware of danger on a cognitive level, on a neurophysiological level, our body has already started a sequence of neural processes that would facilitate adaptive defense behaviors such as fight, flight or freeze. 

A child's (or an adult's) nervous system may detect danger or a threat to life when the child enters a new environment or meets a strange person. Cognitively, there is no reason for them to be frightened. But often, even if they understand this, their bodies betray them. Sometimes this betrayal is private; only they are aware that their hearts are beating fast and contracting with such force that they start to sway. For others, the responses are more overt. They may tremble. Their faces may flush, or perspiration may pour from their hands and forehead. Still others may become pale and dizzy and feel precipitously faint. 

This process of neuroception would explain why a baby coos at a familiar caregiver but cries at the approach of a stranger, or why a toddler enjoys a parent's gentle embrace but interprets the same gesture from a stranger as an assault. We can see the process at work when two toddlers encounter each other in a playground sandbox. They may decide that the situation and each other are safe if the sandbox is familiar territory, if their pails and shovels have roughly similar appeal, and if they (the toddlers are about the same size. The toddlers may then express positive social engagement behaviors - in other words, they may start to play.

"Playing nice" comes naturally when our neuroception detects safety and promotes physiological states that support social behavior. However, pro-social behavior will not occur when our neuroception misreads the environmental cues and triggers physiological states that support defensive strategies. After all, "playing nice" is not appropriate or adaptive behavior in dangerous or life-threatening situations. In these situations, humans - like other mammals - react with more primitive neurobiological defense systems. To create relationships, humans must subdue these defensive reactions to engage, attach, and form lasting social bonds. Humans have adaptive neurobehavioral systems for both pro-social and defensive behaviors. 

What allows engagement behaviors to occur, while disabling the mechanisms of defense? To switch effectively from defense to social engagement strategies, the nervous system must do two things: (1) assess risk, and (2) if the environment looks safe, inhibit the primitive defensive reactions to fight, flight or freeze."

Source: The Polyvagal Theory: Neurophysiological Foundations of Emotions, Attachment, Communication and Self-Regulation by Stephen W. Porges
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Tuesday, July 5, 2016

Stuart Shanker's New Book

In the first paragraphs of this book, Stuart Shanker states "There isn't a single child who, without understanding and patience, can't be guided along a trajectory that leads to a rich and meaningful life. But stereotypes of the 'difficult child' color our views, as do our own hopes, dreams, frustrations, and fears as parents. Don't get me wrong: Some children can be a lot more challenging than others. But often our negative judgments of a child are just a defense mechanism, a way of shifting the blame for the trouble we're having onto the child's 'nature'. This can make a child more reactive, defensive, defiant, anxious, or withdrawn. But it doesn't have to be that way. It never has to be that way." 

And so a book that at first seems to be about managing children's "behaviour" begins. But as I have learned more about self-reg and read through this book, I first began to see self-reg is is related to "stress" and then, through digging deeper, it seemed that even under that, self-reg actually creates a framework of healthy development across a life span... for everyone (not just children). The five domains of self-reg are all areas that we need to be aware of and attend to when it comes to the healthy development of children but also to our own healthy development.

In the book, Stuart Shanker outlines the five steps of self-reg.

Step 1: Read the Signs, Reframe the Behaviour
Step 2: Become a Stress Detective
Step 3: Reduce the Stress
Step 4: Reflect to Develop Self-Awareness
Step 5: Respond to Figure Out What Your Child Finds Calming 
If we, or others are functioning in a state of hyper- or hypo-arousal, we will not be in a position to grow/develop/learn. By figuring out the unique stressors of ourselves or an individual and working ourselves or with the individual to find ways to return back to a state of calm and focused, we are positioning ourselves and others to develop, grow, and learn. The barrier to growth/development/learning is ultimately "stress" in any one (or usually a combination) of the five domains. Scaffolding then becomes about setting up the conditions to ensure that stress is healthy and productive rather than inhibitive.

In the book, each of the five domains (biological, emotional, cognitive, social, and prosocial) are explored. What are the potential stressors unique to that domain? What does healthy development starting at birth look like in that domain? What can we do to reduce stressors and position our children for growth in that domain?

The book helps with gaining a deeper understanding of the unique stressors (both obvious and hidden) that we and our children experience moment to moment and it looks at what we can do through the lens of the growing awareness of how our brains work.
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