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.

Sunday, June 30, 2013

Social Construct of Disability... Again!

I've written about this before but felt the need to come back to it after reading "Disability and Society's Role" on the blog Emma's Hope Book.

Just as the person who wrote this is trying to piece this concept together, I find myself constantly challenged by it.  This line in particular jumped out at me while reading...
“In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”
Not worthy of inclusion or accommodations.  Powerful words. Words I think we need to factor in to the educational decisions that we make for students with disabilities. 

What happens when the accommodation needed involves being physically apart (excluded) from others?  As we continue to move awary from a fully self-contained way of serving the students, many seem to wrestle with what the "right balance" is.  There is a belief that as the "gap gets bigger", students should be separated in to remediated classes, partciularly for courses like mathematics and language arts.  This way they can "learn at their level" and "they will be able to connect with others who are like them."  They will have a "place to belong".  

These are not my beliefs but they are what I hear.

Yet, when I step back, I can't say that "full inclusion" in to the system as it stands now is the answer either as the system can serve to further disable students. 

There is a link in the middle of this blog post that brings you to an article entitled "I'm Not a 'Person with a Disability', I'm a 'Disabled Person'". Talk about making me rethink what I've been pushing in regards to person-first language for some time. Reading this helped me to peel back yet another layer of my own ableist thinking patterns.  The writer of this post makes a very clear distinction between "impairment" and "being disable".
"Secondly, most of these people haven’t noticed the social model’s distinction between “impairment” (the things you can’t do because of your body/brain) and “disability” (the social barriers disabling you on the grounds that you have an illness or impairment). I have a mobility impairment and because of that society gets all right-clicky and prevents me from functioning to my full potential."
It brings us back to thinking about the barriers society and education has created by defining one right way of being and working towards conformity. One can start to understand the thought that perhaps putting students in to classrooms where the goal is conformity actually is more disabling for them then creating segregated classrooms that can be created with less barriers.  But segregated creates barriers to being included in the larger community and sends the message that there are people who are not worthy of accommodation.  How much more do we disable any person by sending them this message by our actions?  And what about all those others who can function okay but would function better if the goal was not conformity? 

Inclusion is not about physically putting students with disabilities in to classrooms... it really never has been.  It is about recognizing that we, as educators, are in a position to engineer personalized learning environments and plans for all of our students.  If we focus on learning and helping each student to discover and nurture and understand their personalized plan to maximizing their learning in all domains (social, emotional, physical, cognitive...etc.) we also send the message that every child is worthy of accommodation and inclusion.  We operate from the standpoint that the disability is neither in us as teachers or in them as students, but rather in the way that our system has been constructed.  We empower both ourselves and our students to create a system that works better for all of us.  

There is probably no easy but for me it comes down to defining what is of most value.  I believe that we should be aiming for full inclusion as I believe it sends a message of acceptance and puts our focus on discovering and breaking down the barriers that we have socially constructed in our education systems. 

I'm starting to understand more and more how our knowledge is ever-evolving and that it must sit in the middle of the world as we know it now.

One’s destination is never a place,
but a new way of seeing things.
(Henry Miller Read)
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Friday, June 28, 2013

The Myth of the Average

 
"Universal Design for Learning (UDL) is a set of principles for curriculum development that give all individuals equal opportunities to learn. UDL provides a blueprint for creating instructional goals, methods, materials, and assessments that work for everyone - not a single, one-size-fits-all solution but rather flexible approaches that can be customized and adjusted for individual needs." (Source: http://www.cast.org/udl/)
 
Perhaps the most profound line in this video is that the average hurts everyone.  This video gets to the heart of what inclusive education is actually about... designing our curriculum, classrooms and schools to the edges rather then to the average.  Recreating what we do in classrooms so that students come to understand themselves as learners.  What are their stengths? What are their challenges? What tools in their personalized toobox will allow them to reach their maximum potential?  Knowing that their profiles are complex and supporting them to figure what tools and strategies work for what tasks.  Fostering an understanding in each student of their unique process of learning so that they have the skills to live in a world that is rapidly changing. 
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Tuesday, June 25, 2013

Defining Perfection

 
"Before you were born, I only worried about
how your disability reflected on me and
now there is no better mirror in the world.
You're my light and dark and
it's a privledge to be your dad."
 
The Planned Lifetime Adavocacy Network (PLAN) of Canada believes that there are five key elements to a "good life".  One of these elements is "contribution".  They talk about the need for all people to work, volunteer, create, inspire and contribute.  They also speak of two key ways that people contribute: (1) the contribution of doing and (2) the contribution of being. 

The contribution of being can be powerful as it brings out the best in others...
 
Again and again, we can find stories like the one in this video where the inspiration and heart to do something is grown out of relationship with other.  Dick and Rick Hoyt are just one of the many examples of this. Dick was once quote as saying that in the team Rick (son) is the motivator or the inspirer... the heart and soul and Dick (father) is the physical body body of the team. He talks about being able to go faster because of Rick.  Dick has said that he would not have raced without Rick.  We see this is so many sports stories where athletes do better because of the inspiration of another person. 

It speaks to our connectedness... to the fact that what we are together is stronger and better than the just the sum of our parts. It also speaks to engaging creative and innovative thinking in regards to thinking beyond barriers. How can we transcend the boundaries of what society percieves as disability and ensure that we are all able to experience things like the thrill of finishing a race? 
 
To me, it also speaks to the lessons that we should be teaching in schools.
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Monday, June 24, 2013

Negative Need vs Positive Need

 
 
Sometimes something you read just brings a certain clarity to a feeling you have had but have not been able to put in to words. 

The source of this graphic is related to adult relationships but I couldn't help but think of student "behaviour" as I looked at this.  It also reminded me of this post about a high school that is trying a new approach to managing behaviours in Walla Walla, WA.  By simply responding to student behaviour with the following statement, staff would be able to change the conversation from negative need to positive need....
“Wow. Are you OK? This doesn’t sound like you. What’s going on?” He gets even more specific: “You really looked stressed. On a scale of 1-10, where are you with your anger?”
Bascially, ignore the inappropriate behaviour and get to the source of it.  Name the feeling and try to figure out what is going on.  Keep the focus on the root of it rather than giving someone an out by creating a confrontation or worrying about compliance or "respect".  Keep yourself out of it. As soon as you put yourself and your emotions and opinions in to it, that person who is struggling to the point of displaying inappropriate behaviours has an "out" and can focus on negative needs rather than work through to defining the positive need. 

It expands the idea of "positive behaviour supports" beyond just reinfocing desired behaviours and ignoring undesired ones.  It brings it from extrinsically motivated to intrinsically motivated.  It ensures that the person who is upset is heard and treated with dignity and respect.  And when we treat others this way, in time (sometimes lots of time), they will treat us that way... not because they fear consequences but becuase they feel good enough about themselves to be able to do that. 

It is obviously an approach rooted in conversation and it makes sense with a student who "has the ability" to have a conversation. The question is how can we apply the same approach to a student who has complex communication needs or students who have processing challenges that result in not being able to "come up" with answers to questions involved in a conversation like this. I think a tool like this "I am upset because... You can help me by..." book created by Kate Adhern from Teaching Learners with Multiple Special Needs is a great place to start in thinking through the answer to that question.  It speaks to assuming competence and believing that all students are capable of problem solving and gaining intrincially motivated self-regulation skills. We just need to figure out how to compensate for the communication, processing or recall bariers that exist for some students.
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Sunday, June 23, 2013

Inclusion Flowchart


Sometimes I think we make "inclusion" far to complicated.  But the flip side of that is that other times I feel we oversimplify it.  Inclusion is about recognizing that all students need flexible structures so that each is able learn.  We can't make blanket statements about student ability and then just "put them" in a specific place.  We need to be continually evaluating and responding to both their learning and ours.  We need to recognize learning as a dynamic social process.  For those who do not fit in the box, we need to be researching and trying other possible ways to enhance their learning.  Concepts of Universal Design for Learning (UDL) and Response to Intervention and Instruction (RTII) need to be approriately and flexibly applied.  Sue Buckley does an excellent job of speaking to this in her post "Every School Should be Inclusive". 
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Thursday, June 20, 2013

Literacy As More Than Language Arts Class

 
As we continue to move forward with re-defining programming for the students that I used to teach in a fully self-contained classroom, I continue to rethink literacy learning and instruction from something being done during Language Arts or English class to something a lot more wholistic that reaches across all aspects of a student's education. 
 
A few days ago, I came across the LATCH ON: Literacy and Technology program for adults with intellectual disabilities while looking to find out what is "out there" by way of adult education for this population of young adults.  I was drawn to the diagram that I included above because it reflects the components that I believe are important to literacy programming for the population of students that i work.  For any population really but with this population I believe we need to more intentional about seeing the literacy potential throughout their day. 
 
I have come to see literacy programming as focusing widely on comprehension and expression... not just of text... not just of speech... but of everything around us.  
 
 
With this definition of literacy in mind, I am thinking forward about how to most effectively set up literacy programming for students with significant needs at the Junior and Senior high school level.  How do we balance inclusive practices and the specialized literacy instruction or assistive technology learning that they may need?  
 
The diagram above seems to be a good starting place.  If we were to step back and take a look at each student's schedule and think through how we can intentionally embed the literacy skill learning related to that element in to their "regular school day" we could also start to see if there are "holes" in their overall program.  Then we can look a little deeper and see if there are other ways to address those "holes" within the context of what is already happening for that student or make a decision around the need for direct instruction, either in the or out of the classroom dependent on the skill, in that area. 
 
It is partially reflective of what we are doing now with our students but I'm seeing a need to take another step forward in formalizing this approach.  A good place to start building this is these explanations of key elements of Literacy
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Sunday, June 16, 2013

It Hasn't Even Been 40 Years...

 
While I do not agree with every element tied to IDEA, I think this video does a great job of explaining the very short history of educating students with disabilities. It speaks to the beginning of our current duo-track system of education.  It also speaks to the initial need for that duo-track system as it became the catalyst to digging deeper in to different ways of teaching, learning and assessing progress/growth/learning.  It opens up doors and possibilities to become more aware of the very many variables that are in our control when it comes to setting up the optimum conditiosn for learning for each of our students. 
 
In many situations it has resulted in educating students who were previously believed to be "uneducatable".  That speaks to our power as educators. 
 
It's amazing to look at this very short history and see the momentum that has been created around it and think about the lives that have been changed as a result of it.  I won't pretend we have it all figured out but it is because of the pieces that have been figured out that we can imagine more... that we can imagine equality for those with disabilities. 
 
Sometimes in the middle of change we get to believing the way we did things was "wrong" when perhaps the reality is that the way we did things was so "right" that we have no other choice but to keep moving forward.  We started at a place where there was a belief that a certain population of students could not be educated at all and with each step forward we become more and more aware of just what can be done which propells us forward.  Each step is required to see the next step. 
 
We still have a journey ahead of us but I'm excited to be working in a time when we are moving towards celebrating the diversity of students and creating more universally designed learning opporutnities in our schools.  This isn't just about students with "special needs" but rather about moving towards increased student agency and more personalized learning for all. 
 
"Each mind is beautiful.
Strength has many forms.
And we are all able."
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Saturday, June 15, 2013

Are We Focusing on Learning or on Work?

"Being busy is a form of laziness -
lazy thinking and indiscriminate action."
(Tim Ferriss)
 
When Mikey (my now 14 year old son) was almost a year old he did something amazing.  He was sitting on a little stool by a chair and he pulled himself up in to a stand position and then he stood there for several seconds before sitting back down on the stool.  I got excited and started celebrating and he looked at me like I had lost my mind.  I was so sure that walking could not be long in coming.

Months passed. He went from pulling himself up from a stood to pulling himself up against a chair or coffee table from the ground and then to pushing himself up midfloor in to a stand.  He would stand for increasing lengths of time in whatever position he was in - against the chair, against the couch, against the coffee table and even mid-floor. 
 
I wanted so desparately for him to take his first step and I would try to hold his hands and encourage a step or entice him with a toy.  I bought him three different kinds of walking toys hoping one would inspire a step.
 
Months passed.  He would stand mid-floor watching a whole episode of Barney with his feet planted firmly on the ground.  I would reach out my hand and he would bat at it and stare me down in stubborn defiance, refusing the whole time to take my hand.  I would catch him watching me and others in the house walking.
 
I kept putting things in front of him, hoping he would take a step but then I tried a different approach.  I started putting him on different surfaces in a standing position.  I could see some of them made him uncomfortable and I could see him start to shift his weight around a bit.  I would dig up dirt so it was soft and put him on that.  Put him on gravel.  Put him on the edge of a side walk so one foot was on cement and the other on grass.  I could see his stability was a little thrown off.  And sometimes I could even see fear in his eyes as he worked to feel  sense of equilibrium.
 
Looking back, I know that I probably could have forced him to take steps.  Rather than let him bat my hands away, I could have pursued it and got him to hold my hands and made his little legs move in a walking motion.  But he seemed content and proud of his ability to stand so instead I celebrated with him each time he would stand.  I applauded him each time I saw his little legs waver a bit from standing too long or from being on a diffferent surface. 
 
And every chance I got when he we were playing games, I would challenge his balance, work his low-tone core (many many games of row-row-row-your-boat), lay him on the ground and move his feet one after the other, play with him with his toys and highlight how his teddy bears would walk across the room to see him.  I even bought him toys that walked across the room and we would play with those. 
 
Then one day he was standing mid-floor and he saw a toy across the room on the couch that he wanted and he took his first step and then about 15 more with complete stability to go and get the toy.  He picked the toy up, turned around and walked back to where he was without ever losing his balance or stability.  He then stood there playing with the toy but he dropped it.  He bent down, without falling, grabbed the toy and returned to stable standing position.

He never crawled much after that.  He just sort of started walking everywhere. 

Through the years since reaching this milestone, I have found myself frustrated as he stood before many other milestones.  I wanted to help.  I wanted to guide him.  To show him.  To step him through the process.  The more I tried though the more he would back away.  And eventually I would just decide to give it a rest and try again in a while because there was no use pushing forward when all it had become was a power struggle.  And then he would watch me or someone else each time we woudl do that very thing that I had given up helping him with.  Sure enough, there would then be a day where he would start doing it in his own way.  Once he had started, he would come to me and want me to show him or else he would stop and observe to figure out what to do next.  We would see slow and steady progress and the beauty was that he owned it. 

Yesterday was the wrap up for the "Literacy for All" project that I have been involved in for two years now.  It was clear to me that there has been a culture shift since we got together for this project in June 2011.  The focus then was tied to selling us on the idea of comprehensive literacy instruction for students with significant disabilities.  It wasn't that we were not thinking about literacy for this population but more that the approaches that were being used were more rooted in reductionist theroies then constructivist ones. 

One of the goals for the project this year was tied to assessment practices for students with significant disabilities.  How can we demonstrate growth and learning for this population given that they may be in the emergent literacy stage or that access challenges inhibit the use of standardized assessments.  We talked about the growth we have seen in the students with significant disabilities that we teach and/or support.  In many cases the learning that was happening was about a whole lot more than reading and writing.  Messages of negative or inappopriate behaviours being replaced by emergent literacy behaviours as result of the Daily 5 approach that has all students learn about and build stamina in their literacy behaviours came through loud and clear.  Talk of increased socialization, communication and personal management came through as well.  And several times the message that this structure that is designed for "general education" works for all students came through. 

A few could put numbers on the learning they saw this year.  There were a handful of students in the project who could be benchmarked and growth could be measured in numbers but there were many for whom that was not yet possible.  Yet we all had evidence of learning for these students.  Some of it was evidence related to reading and writing skills but there was also evidence of growth in emerging literacy behaviours, socialization, communication, personal management, decreased behaviours, increased engagement...etc.  We were all able to articulate what we know from working with this population... that learning is personalized and can't always be measured in numbers. 

As I look to next year, I am seeing the need to build learning portfolios for the students that I have on my caseload... partially as evidence of learnin but also just to capture the amazing things that are happening for them as sometimes we just don't stop to reflect.  When you do, you realize all the learning that is happening.  In the middle of it, you don't.

Sometimes with the students I work with it is no different then what it was when I waited so impatiently for Mikey to take that first step.  For so long it appeared like nothing was happening.  I wanted to take control of it and make it happen but I was sort of powerless.  In school we are not always as powerless as I was in getting Mikey to take those steps.  Unfortunately, in school, sometimes we try to exert our power in those moments and we shift the focus from learning over to behaviour and the good stuff can get lost.  But just like with Mikey when he started to stand it wasn't really that I was doing nothing.  I would always celebrate him standing.  I would show him how to walk and give him reasons to walk.  I would make sure that there was nothing unsafe around him in case he fell.  I provided the tools like a walking toy and my hands if he so choose to use them.  The beauty of me being paralyzed to do it for him was that whene he did walk he owned it.  And becuase he owned it, his confidence in his ability to do allowed him to able to bend over and pick things up and walk clear across the room right from the start.  It was never my accomplishment and that is a good thing.

I know we can't always stand back as educators.  Sometimes we need to do something.  But I think sometimes we do get so caught up in doing it for them that we don't let them own it and with students with special needs this creates that true learned helplessness that is rooted in their believes about themselves.  We need to be so careful in our quest to be busy and to look busy because it has the potential that the accomplishments of our students will end up being owned by us instead of our students.  It creates quicker initial progress but what happens after that?  

I have come to a deeper realization in these past few years of what the difference between focusing on learning and focusing on work is. 
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Sunday, June 9, 2013

A Very Important Call to Action: People Experience Disability in the Environments We Create


A message that every educator should hear. This is a call to action for us to create systems that do not disable students by our narrow definition of "intelligence".  It's a call to shift the disability paradigm to one that authentically embraces and celebrates diversity. 

In his book Neurodiversity in the Classroom: Strength-Based Strategies to Help Students with Special Needs Succeed in School and Life, Thomas Armstrong does a great job of outlining the strengths commonly associated with Learning Disabilities, ADHD, Autism, Intellectual Disabilities and those with Social/Emotional/Behavioural Disabilities and how we can create environments that capatlize on these strengths. 

As part of a group in a graduate class I just completed, we created the following wiki which also has a section that speaks to this concept and quotes a lot of Thomas Armstrong's work. Link: A Social Learning Approach to Regulation and Resilency for Students with Neurobiological Differences.
 
 
This quote by Jonathan Mooney himself sums it up pretty nicely...
"But what's most interesting, at least from my vantage point, about this social movement is a bigger argument: people don't have disabilities but experience disabilities in environments that aren't accommodating or inclusive of the wide continuum of human differences. We are all temporally enabled learners who can be disabled by narrow, standardized learning environments, whether we have diagnosis or not. Learning inclusion is a call to create supportive and empowering learning environments - not for kids with learning disabilities, but all kids." (Source: http://www.matankids.org/2013/05/17/learning-inclusion/)
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Saturday, June 8, 2013

Students with Disabilities Helping Around the School

It is a less common practice, but still not an uncommon practice, to set up "vocational skills programs" for students with disabilities that include some type of janitorial duty.  Students with disabilities are then seen in groups cleaning up after other students while those students go off to class and learn curriculum content.  Just a couple of examples of this:
I work with teams to set up programs for students with significant disabilities.  We try to focus on creating programs that facilitate authentic inclusion, address quality of life indicators and are driven by priority learning outcomes that come from a team-based person centered planning approach. 
 
One quality of life indicator is that of being able to authentically contribute to the world around you.  We try to focus on both the contribution of being and the contribution of doing.  There are many opportunities in inclusive classroom settings for this.  Yet, for some of the students on my caseload, they respond positively to more tangible ways of contributing.  

For me it is about creating individual programs that are focused on learning.  To have a student do the school recyling as a compliance driven kids with disabilities only do this task in the name of them learning specific work-place skills makes no sense because all of the skills they would learn in that situation are ones they can learn just by being in general education classes and settings.  To have a student be a part of a club that does recycling and donates the money to some worthwhile cause and then do recycling with a "mixed ability" group is a completely different situation. 
 
One of the students on my caseload helps in the library at his school. He starts by checking in and out books (scanning process) with each student.  Right now we are working on him saying hi.  Next year we will expand it and teach the other students in the classes how to model the use of his communication devise when communicating with him and hopefully he will start to use it to respond to the things they are saying.  He then helps with shelving books.  This is his heavy work.  He interacts with the librarian throughout the time.  He enjoys doing it and there is a good balance in that he is working on communication skills, fine motor skills (the scanning of books requires some hand-eye cooridination for him), computer skills, heavy work...etc.  It opens up opportunities around functional use of literacy skills (finding where books go in alphabetical order) in the future.  He enjoys books in general and it might even open up job opportunities in the future. 
 
Another one of my students is a delivery person for the school.  He is working on basic visual schedule and matching skills.  There are visuals around the school at each classroom door.  He has a schedule with where he is to go with matching visuals and the folders where what he is delivering also have matching visuals on them.  He uses a simple sequential message devise to have a conversation with the teacher or whomever opens the door when he delivers items.  
 
Could these students be in class all the time?  My feeling is we have to be conscious of not decreasing social status and we need to be conscious of waiting until an appropriate age to start working on vocational style skills and we have to conscious of embedding priority learning outcomes like communication, socialization, personal management...etc. in to the "jobs" we give students.  We also need to feel confident that these are things that make them feel like they are contributing as that is the goal behind these jobs.  We always talk about inclusion as "belonging" and part of belonging involves feeling that you are responsible for some part of making the community work.  For some kids that needs to be tangible.
 
Doing the same janitorial work day after day without any other objectives besides just compliance, completion and cleanliness is not about education and it serves only to continue to stigmatize and opress people with disabilities.  We need to make sure first and foremost that we are meeting as many of our priority learning outcomes in the classroom and general education activities and then we need ot make sure that the ones we are addressing outside of those settings are done in a way that is respectful and takes in to account the dignity of the human being.  
 
Beyond this being an issue of dignity and respect, it is an issue of security and safety for students with disabilities.  When we focus on compliance there is the potential that people with disabilities will become increasingly passive as they get older.  They get pats on their back for doing these menial tasks and become people-pleasers.  I have run in to too many people who see this as a good thing.  As a parent who needs to think about a child who will function at some level of interdependence as an adult this kind of stuff sets off extreme alarm bells.  When we educate any student we need to ensure that we are empowering them.
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Friday, June 7, 2013

An Entrepreneurial Spirit

Alberta Education's Framework for Student Learning consists of compentencies for engaged thinkers and ethical citizens with an entrepreneurial sprit.  I thought this was a great explanation of what it means to have an entrepreneurial spirit.

I am a member of the Alberta Enhancing Inclusive Environments Ning.  This is and online community of practice where we can share and celebrate innovative strategies that support inclusive practices across Alberta. When people join the ning, one of the questions that is asked for their profile is "What is your greatest hope for inclusive eduation?"  The other day someone joined and her answer was simply "that it will make us rethink what schools are for."

It seems to me that is a perfect hope and perhaps somewhere in this explanation below we can find the true purpose of schools.  We have classrooms sitting full of so much potential.

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Thursday, June 6, 2013

How Do I Teach This Kid to Read? Teaching Literacy Skills to Young Children with Autism from Phonics to Fluency

 
I just wanted to pass on a recommendation for the book How Do I Teach This Kid to Read? Teaching Literacy Skills to Young Children with Autism, from Phonics to Fluency by Kimberly A. Henry, M.S.  I just recently got it and I'm thrilled the ideas and the CD that has printables that can be adapted to meet specific needs of students.  Lots of visual ways to support literacy development for those who need visual supports. 
 
The book has activities for Phonemic Awareness, Vocabulary, Comprehension and Fluency.  I found the section on comprehension particularly helpful for geneating ideas around how to work on comprehension with students who have limited verbal abilities.  I've been working this weekend on putting some of the activities together and I'm looking forward to embedding them in to the programs of the students I'm working with starting this week. 


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Wednesday, June 5, 2013

Tuesday, June 4, 2013

Diversity and Inclusion: Finding the Sweet Spot

We often think of inclusive education as being about the space that students with disabilities are educated in but inclusion is so much deeper than that.  It starts from the way we see the world and what we value in the world and springs out in to how we interact with everyone.

This video does a great job of explaining the root of inclusive communities...

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Sunday, June 2, 2013

Educating Mikey Part 2

~ Trying Out Band Class ~
 
Mikey, my son, is now 14.5 years old and we are fast approaching a time when we will be immersed in the world of adult planning and services.  In the middle of a changing job, taking my masters and shifting practice related to how our social systems serve students and adults with disabilities, I find myself stepping back often and thinking about what my priorities for Mikey should be at this point.  June is a time when these thoughts start to spin even more fully around in my head as it is a time when we need to start thinking about next school year and what it is going to look like.  The Junes when Mikey has had a good school year are particularly hard because you know as a parent of a child that doesn't quite fit into the educational world that things can go either way in any given year.  It's hard to see years like this year come to an end.  Mikey has been a part of the Fine Arts Academy class at St. Mary's this year and everyone who knows him well has seen huge increases in social interaction skills, communication skills, personal management skills, comprehension of written and spoken word and independence.  Most importantly, we have all seen a happy, outgoing teenager who is excited to go to school each morning.  Through the course of this year, I, as a parent, have started to dream bigger dreams for him. 
 
Back in January 2011, I wrote a post called "Educating Mikey".  At that point, Mikey had been in a self-contained classroom setting for 3.5 years and we were talking/planning for him to move to a more inclusive setting that fall.  Now, almost 2 years in to taking a more inclusive approach to his education, I thought it might be time to update that list because my dreams have expanded.  The core of what I want for him is a high quality of life now and in the future and that has never really changed.  What has changed is a better understanding of what that actually means.  As a result of being in a fully inclusive setting in school, we can see what works and what barriers exist and we can slowly figure out how to use the things that work to overcome one barrier at a time.  It shifts our focus from remediating when there is a hurdle to deeply investing in finding scaffolding technique, the support, the modification or the bypass strategy that will allow for access.  I have come to a deeper understanding of how a focus on access increases participation and engagement and how an increase in participation and engagement results in personalized, relevant learning. 
 
It's important for everyone to think about priorities, but it is even more important when you have a child that needs much more exposure and scaffolding and modifications to learn than other students do.  You do not have the time to do it all even if you see the value in it all.  You need to figure out what is most important and concentrate your primary effort there.  It doesn't mean you let go of the other stuff, but it does mean you find a focus and see it through. 
 
And so, I share my new list of what I believe will increase Mikey's quality of life both now and in the future and some thoughts on what that should mean in regards to his education at this point in his life...
 
Safety and Health: The statistics realted to abuse and neglect of adults with disabilities is overwhelming.  It makes a parent want to move their child to an island away from all of society and just keep them safe.  There is a fear of those who are different and of those who do not fit in to what we have invested years in to creating.  We put so much energy in to trying to make people fit in to what is already there.  Mental health is also a very real issue for those with disabilities and I have found myself frustrated many times at our lack of awareness or mental health services for students with complex needs.  We can so easily magnify mental health challenges when we are inflexible in our approaches.  I believe on a school level the best thing we can do to increase potential for safety and health in the future is to help these students experience the process of "positive niche construction" (Thomas Armstrong).  We all need to understand that we have the ability to impact our environments and make them work for us as opposed to thinking in terms of always moving a child to a different environment.  Finally, it is now a well known fact that the biggest indicator of safety and health for adults with disabilities is the size of their networks.  On a school level, this puts building relationships and networks (and things like peer support strategies which will be a post in the near future) as a very high priority.  
 
Contribution: Mikey loves to help. We have always been able to capatalize on this and grow his self-esteem because he inheritently knows which things to do that make an authentic contribution to waht is going on.  But, Mikey also contributes just by being himself.  We have all seen the stories of peopel with disabilities joining sports teams and becoming the heart and soul of that team.  We need to think beyond contribution as just being about what is concretely done and recongize contribution as also being about influence and impact.  Since we have moved to a more inclusive of educating the students on my caseload I have had countless conversations with parents of other children in the classes that these students are in about what their children get from having that student in the class and it is so often related to that boost of compassion, understanding or motivation.  What this means on the school level when it comes to Mikey is to ensure that his contributions really make a difference and they aren't just random tasks and also to ensure that he is present in times.  It also means learning assistants stepping back and letting interactions happen rather than facilitating them because that contribution of being comes in the middle of relationships that students can figure out together. 

~ Warming Up for Dance Class ~
Looking to Peers for Diretion

Relationships: I've mentioned a lot about relationships but want to one more piece to this because the students on my caseload tend to those students that are "loved" by everyone.  People say hi and give high fives and are always willing to "help".  What I'm aiming for though is meaningful relationships that always have the potential for growth.  It might be slow growth but the potentila is there.  Again, on the school level, this means being diligent about that the adult role is when it comes to relationships.  When can we facilitate more authentic relationships?  How do we find common interestes that students can engage in togethere?  How do we make sure we are not learning toward benevolence?   What do we do to facilitate communication with those students who have limited communication abilities.  I believe that relationships are of primary importance because I believe that all learning is social and it is in relationships that we can facilitate social and emotional development and learning.  

Having Choice and Control:  Some students (and adults) have very little control in their lives.  Some people with disabilities rely on others to meet basic needs or for care or to compensate for the barriers that come with their disabilities.  What tends to happen in these situations is that the right of autonomy is taken away from those individuals.  We need to assist students to become the best self-adovocate that they can and we need to ensure that they are treated with respect and have valuable social roles.  Its important to step back and look because many of the things we do that seem to help a student to gain independene in a skill are chipping away at their autonmy and creating a level of learned helplessness in their thinking pattern.  This is perhaps the area that is the most challenging because we are often okay with giving supericial choices but are a bit more uncomfortable beyond that.  It's also difficult with students with complex communication needs becausee it means seeing every behaviour as communication and engaging in a conversation (without words often) rather than engaging in a battle of wills to get the outcome that we believe is right in that situation.  If we don't engage, we will never have the opportunity to find more appropriate ways to communicate.  Then we shut a person down and see how learned helplessness touches the spirit of a person. 

~ Popcorn Eating Contest ~

Meaningful Activities in Ordinary Places: I think we have come a long way in creating meaningful activities for those with disabilities.  For me it is important we are always working towards having those activities in "ordinary" places.  I would go one step further to say that sometimes I think we need alternative spaces to support a student's growth and development but I feel those spaces should never be restricted in regards to who accesses them. Junior High is working great for Mikey too as he is expanding his ability to adapt and transfer due to the fact that he goes to many different classrooms with many different teachers.  In the past flexibility and transfer of skills has been a challenge.  As scary as it is right now as a mom to think about next year and a whole new set of teachers and classrooms, I also know that this approach will help in building the skills that will be helpful to him as an adult.  But it isn't just about classes.  We need to embed him in the school and community culture.  We have made some great steps forward this year.  He attended his first Junior High dance and is actively particiapting in spirit days at school.  There is a group of students that now seek him out at every lunch hour.  That group does find a quieter, calmer space to be with him but eventually I believe he will feel safe enough to venture out in to the nosier, busier junior high lunch time environment.  He has taken an increased interest in sports and I'm hoping next year to see him be part of at least one sports team.  Its important that the array of what he experiences is not just contained to the classes he takes.  It is also important that it not be so scripted that it last authenticity.   

~ Independent Drawing for Project ~

Develop Abilities: Mikey has begun taking a real interest in art and craft projects this year.  He is also showing an increased interset in engaging in the same processes and content that other students are engaging in.  He does best when the activities he does are interactive and concrete.  What is important to me is that in the middle of developing his abilities, we also come to understand the clearest, strongest path for him to access to learning.  We are becoming increasingly aware of the diverse learning needs of students and the need to open up opportunities for multiple ways of processing, representing and engaging in curriculum objectives.  It is only when we can figure out these strongest paths that we are able to support the development of abilities effectively and efficiently.  This requires getting past that one-size-fits-all approach.  Developing abilities is important but perhaps even more important is coming to understand those pathways that allow him the best access. 

It's a learning process.  I've always said it is about the journey not the destination but the more I move in to this, the more I see there really will never be a destination.  We will always just be moving towards.  We will always be looking for how we can facilitate just a little better quality of life.  But this is how it is.  When I think of my own learning and experimenting and the changes that I constantly make in my life, it really is no different.  None of us are meant to stay stagnant.  Life is about learning ang growing.  

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Saturday, June 1, 2013

Restraint and Seclusion: Hear Our Stories

Stop Hurting Kids is a campaign to end restraint and seclusion abuse in schools.  This past week, a new video called Restraint and Seclusion: Hear Our Stories (working title) and materials were added to the website.  Here is an explanation from the website.  (Source: http://stophurtingkids.com/the-film/
"Restraint and Seclusion: Hear Our Stories (working title) is a new film by Dan Habib, Filmmaker at the Institute on Disability at the University of New Hampshire. In the film, Jino Medina, Brianna Hammon and Peyton Goddard describe the restraint and seclusion they experienced while students in public schools, and the devastating physical and emotional injuries they suffered as a results. And Carolyn Medina and Wil Beaudoin describe how the restraint and seclusion their children endured had an impact on them as parents.
The film (27 minutes) is available free to the public through StopHurtingKids.com for training, professional development and public awareness. Restraint and Seclusion: Hear Our Stories was produced through a partnership of the National Center on Trauma Informed Care, TASH and the University of New Hampshire Institute on Disability. Support for this film comes from the Substance Abuse and Mental Health Services Administration (SAMHSA)."
Following is the you-tube copy of the video.

 
Here is a discussion guide that was put together to go with the video: http://stophurtingkids.com/wp-content/uploads/2013/05/RS-Film_Discussion-Guide.pdf.  Even for schools that don't use restraint and seclusion, the discussion questions about behavioural interventions and trauma are worth discussion for any school. 
 
It's great to see that work is being done to expose and educate others around these types of issues.  Hats off to Dan Habib for another great documentary that will hopefully have an impact on more humane and/or inclusive practices in schools.  
 
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