Saturday, December 28, 2013

A Full and Meaningful Life

"Today I still have limitations, difficulties and deficits, but they do not define me. Instead they inform me. I can plan my life accordingly, ensuring supports, down time and accommodations so I can be the human being I want to be in this world. Today I have a full and meaningful life. I am content and happy and I am still just as autistic as I have always been." 

Sometimes I find it hard to balance my job and parenting a child with "disabilities" particularly given the fact that my son (Mikey) is on my "case load" at work. There are benefits and drawbacks to being both his mother and his "case manager"/"inclusion facilitator".  

Perhaps the biggest benefit is that it allows me to see his education and the education of all the students and families that I serve as being about more than just the years and hours that they will spend at school.  It puts me in the position to analyze the questions around the purpose of education for students who will require some level of support for their entire lives.  Is it the same as it is for any other child?  Are there things we need to consider for this population that we do not need to consider for others? 

I do not pretend to have all the answers.  I don't think anyone does.  It's why we need to engage and explore in the process of trying to define it all more clearly.  We are living in exciting times as we are now able to gain insight from so many individuals that in the past we may not have been able to gain insight from as they had no way to communicate their perspectives to us.  But there are many who can still not speak for themselves in conventionally defined ways.  My son, and most of the students that I work with, have "limited verbal abilities".  This means that we need to continually seek out ways to enhance his ability to communicate through the exploration of augmentative and alternative communication (AAC) but it also means that we have to be aware of all the things he is continually communicating in more "non-conventional" ways.  

And when it comes to facilitating a self-determined life for him (the ultimate goal that all parents seek for their children), it means that our children may not be able to spontaneously tell us what they like, want or desire so we need to do the work to expose them to as much of the world as we can and then "listen" to their often non-verbal responses. What ignites their passion?

Sometimes providing those opportunities might even mean having to touch a snake... 

It means when we create the social experiences that are just part of growing up we need to be aware of the small modifications we might need to make to help our children to cope with the over-stimulating environments or the fact that these experiences often require a way to interact and communicate with others. Sometime it means facilitating that. Sometimes it means teaching others around your child what your child is "saying".  Sometimes it means getting out of the way and letting them figure it out as kids seem to be better able to understand communication without words then we are at times. Sometimes it means providing them with a way to communicate what is needed. We don't avoid them because at first they might seem to be too much. We try them and watch for how our children respond as that is the way they will communicate to us what our next steps on the path could be...

And through it all, you stand back and look for ways to increase agency.  You look for ways to not just provide the experience but to ensure your child can engage in the experience.  

Over time, you keep looking for those things that really grab your child so that you can create more opportunities and experiences in the areas that other children would tell their parents they want to do.  The snake was obviously not a hit so, much to my relief, we didn't do a whole lot more with reptiles as time has gone on.  On the flip side, it has become clear to me that he loves to engage in the scientific process of figuring something out through trial and error so we didn't steer clear of everything science related.

This continuum of engagement helps me to better interpret what his interest level in things are.  I do always remember though that he is an observer by nature and there will be times where he is "passive" and "obedient" for a long time even when it is something that is highly interesting to him.

passive -- obedient -- participatory -- inquisitive -- autonomous -- committed

I'm writing this post as a mom but it is reflective of what I believe about the education of the students that I work with. It matters when we work with students that we are clear on what we believe the purpose of their education to be. On the top of my blog I put the statement: "Exploring meaningful pathways to inclusive and personalized learning for students with complex learning differences and disabilities because education should prepare all students for a lifetime of learning."

Are we there?  Do we see students with complex needs as candidates for being "lifelong learners"?  How do we facilitate what it takes for them to be able to do that?  I don't know the answers.  I don't think any one person can.  It's why having the village is so important.  It's why natural supports are so important.  It's why exploring and finding the things that will motivate someone to engage and learn is so important.  I don't have any illusions that we will find all the answers.  The question really is always going to be what is the next small thing that we can do that will bring us one step closer? 

"Better to have a short life that is full of what you like
doing than a long life spent in a miserable way."

Sunday, December 15, 2013

Worth Thinking About: Reacting or Responding

Reminded me of Ross Greene's philosophy of

I post new "Worth Thinking About" questions on Sundays. 
In reality, some might be more "and" statements rather than "or" statements. It is about finding the right balance so that we are aware enough to be effective in supporting student learning.

Click here to check out more "Worth Thinking About" posts.

Saturday, December 7, 2013

Masters Capstone

A week ago, I attended our second last formal gathering with the masters cohort that I have been learning with and from for the past 2.5 years.  The next time we will get together as a group is in April to present our Capstones.  These past 2.5 years of balancing going to school, work, parenting and personal have been far from easy but I would never trade the experience and learning and getting to know the amazing people in this cohort for "easy".  I'm humbled every time I get together this this group of educators as the passion and compassion that they have for education, students and humanity shines through in everything they say, share and do.

The process has been even more meaningful as it has occurred at the same time as my job and the way we serve the students that I work with has evolved.  We started this program in July 2011 and in September 2011 we began the process of making the general education classroom the primary placement for the students that I had, to that point, taught in a self-contained classroom based out of an elementary school.  I would be lying if I said the process of moving these students to age appropriate schools and taking the first steps in figuring out a different starting point has been smooth.  I would be lying if I said we have it all figured out. What I do know is that the growth and learning that I have witnessed in these students (and some of the students around them) is substantially larger then what I witnessed when I was teaching them in a self-contained classroom. I see a confidence and happiness in each of them that is different from what was there before. We are all dreaming different dreams for them and exploring learning possibilities that just could never be available to them in a setting segregated from their peers. I would go so far as to say that we are redefining what education means for this population of students through this process. 

I've learned a lot but there are times when it is evident that it is probably just the tip of the iceberg as the we are still really in the infancy of figuring this out.  It is only in my lifetime that it has even been a requirement that we provide an education to those who fit the profile of the students I work with. There is still so much to learn. 

Personally, I have to take a deep look at my own established "mental models" often through this process.  It has required finding time to reflect more deeply to ensure that we aren't just doing things because that is the way we always did them.  Most important in this journey for me has been the experiences of really listening to those who are the true experts - self-advocates.  We need to listen both to those who can use words to communicate and those who cannot.  There are so many people stepping forward to tell their experiences which can help us to better understand and hopefully create educational (and life) approaches with our students rather than for our students.

I've learned to attend more closely to what is going on... to step back and try to figure out all the subtleties of the situation rather than just immediately reacting and trying to "fix things".  I've learned that sometimes helping doesn't actually help at all.  I've learned that sometimes overcoming a barrier through struggle is the greatest learning experience for both myself and others.  I've learned that we all have our own pre-defined beliefs and experiences that will impact how we interpret any situation. It's been more of a personal than a professional journey in many ways.  But perhaps there is not as much of a defining line between the two as present-day society would want us to believe. 

And here I sit... feeling that finally I am coming to a point of this making sense... not in the lets wrap this up and be done with it kind of way, but rather in the I see where this is just the first step on a journey kind of way.  This experience has changed me and impacted what my hopes and dreams. 

It wasn't really that difficult to piece together my focus for this Capstone  As interested as I am in the larger picture of "inclusive practices" in education, what drives me is tied to inclusive education for students with complex needs.  What does it take?  How do we ensure coherent, comprehensive, and continuous programs for this population is we are serving them in the general education setting?  Can we create the same continuity and cohesion to their programs as we could if we educated them in self-contained classrooms with a specialized teacher that they often stay with for years?  Should we be aiming for that if we reference the concept of "dignity of risk"?   What framework and supports would make this sustainable? 

We so often try to define the problem and solution with the mental models that we currently have. We hear only what we recognize. We interpret things based on our experiences and feelings.  We then draw the same conclusions that we have drawn before. 
"We cannot solve our problems with the same thinking we used when we created them." (Albert Einstein)
When we think about educating students with complex needs (any students, actually), we often fall back on a curriculum-driven perspective.  This keeps us stuck in believing that we need a duo-track system to serve the needs of students who just fit too far out of the bounds of how we currently deliver and assess curriculum.

What if we shift the paradigm and thought of education for students with complex needs (any students, actually) to an inquiry based perspective rather than our curriculum driven perspective?  What if we saw the education of these students as a multi-year process of working with the student and those who are naturally a part of the student's life to figure out how to ensure increases in the areas of access, engagement and autonomy?  Is it possible to equip any student, even those with what we consider the "most severe challenges", for a lifetime of learning? 

A lot of it ties to the heart of "Person Centered Planning".  It's been around for  quite some time now in the field of "disability".  It's a great idea but has it been realized in practice... and, more specifically, has it been realized in the way we educate students with "disabilities"?   Can we realize it within the current structures and belief systems? 

There are a lot of questions and a lot of thoughts.  It seems only fitting that it is now time to pull it all together.  To look at what has been accomplished and what we still have to accomplish and begin to piece together a framework that fits in to our current and evolving context.  This is what my last step in my masters journey will be.  I'm excited about it. 

Sunday, December 1, 2013

Enabling does not equal empowering...

To enable is to "supply with the means, knowledge, or opportunity" to achieve a goal. We enable others by minimizing barriers, helping them and possibly even by creating extrinsic rewards or consequences to "encourage" them to move in the direction of the goal. When we enable someone we may end up setting too low of standards, doing too much for them, over-focusing on the rote what and how, stepping in and rescuing or directing when things are not getting done. We give people structures because "they like structure". Enabling a person often leaves the power in the hands of someone outside of the person who is being enabled. At the end of the day, that person is able to do the task but doesn't necessarily have control over the choice to do it.  Is that person independent?  Is that person autonomous?  What is learned helplessness in reference to the idea of independence and autonomy?  

Empowering, on the other hand, involves turning over control to another person and then trusting that they have the ability to reach a goal. When we empower we start from a place of faith in another person. We don't judge.  We focus on our own behaviour rather than the behaviour of the other person. We provide information and engage in collaborative problem solving.  We have discussions about "why" rather than about "how".  We are patient through what is sometimes an incredibly messy process because of the potential for it to lead to authentic learning, understanding and intrinsic motivation.

Enabling is clean and simple. The path from point A to point B is generally linear. That path is predefined and the steps are predefined and if one missteps off the path, someone will step in to make sure that person gets back on the path. You can make a series of check marks. It looks good. It looks like something is being done. It can usually be measured quantitatively. It is associated with what we have traditionally defined as "success". 

The empowering process can be confusing, messy and complex.  It leads to "mistakes" and "failure" and possibly even to hard feelings and negative emotional responses. Getting from point A to point B takes longer and the path is not direct and sometimes it is not even clear which direction one is heading in. It may seem chaotic and out of control. In the middle of it, we may long to fall back on something simpler - something already known - to generate some relief. 

We have traditionally focused education through the enabling lens and our focus has been on achievement and performance.  As we shift over to an empowering lens, our focus moves to growth and learning. Students (people in general) will avoid things they still need to learn if we put too much of an emphasis on achievement and performance. Nobody wants to put themselves in the vulnerable position of looking like a "failure" and if we focus only on the final product when you don't get there because you are still exploring and learning, others might interpret it that you have failed.  We don't want that... so we step in and enable.  But is that the right way?  Couldn't we just recognize that we all need different amounts of times and ways to explore and learn?  If it is about learning and you can state what you have learned despite what product you produced at any given step, learning and success take on a different meaning.  

In reality, successful learning seems to be a product of reflecting on and responding to what we have traditionally labeled as "mistakes".  If we keep trying to figure out another way we have not failed. It's when we begin to see "mistakes" as "the process of learning" that we can begin to redefine "success".  It allows us to develop the "grit" that Angela Lee Duckworth talks about in her TED Talk. 
Towards the end of this talk, Angela Lee Duckworth states that we know very little about building grit.  Yet the other day I talked with a group of grade 5 students about things they have learned "without teachers" and each of them explained a process that involved a lot grit.  Perhaps what we don't know much about is grit in the formal learning setting where the student is going be given a "grade" for what they are learning.