Thursday, August 16, 2018

Thoughts about Inclusion

I recently attended a summer workshop for teachers and administrators focused on school inclusion.  Much to my surprise, one of the breakout sessions was being offered by two representatives from a school where I once taught.  And the memories overwhelmed me.

My teaching career had spanned much of the history of special education:  I taught in a residential facility, in a segregated school, in a segregated classroom with absolutely no inclusion (or "mainstreaming" as we called it then), and finally in several different public schools that were trying to make inclusion work, even for those with the most significant special education needs.

When the first presenter introduced himself as the principal of this school for the past 15 years, I had to force myself to realize that I had in fact been retired for at least that long.  He hadn't been there when I left and I didn't even recognize his name.  Memory #1:  This particular elementary school had an unusual turnover of principals during my years there.  It was a very stressful time for just about everyone.  Followed immediately by Memory #2:  Moving my students into this school at that particular time was a major challenge to the status quo, already in a state close to dysfunction.

The second presenter was a speech/language therapist who had just been starting out when I left.  We overlapped just a little but hadn't really worked together.  She announced that she too had been there for 15 years and during that time had had a child with special needs of her own.

Together these two educators had changed the climate of this school in ways I never would have thought possible.  The principal explained that he starts every year with a reminder that ALL staff are there to meet the needs of ALL students.  No more "my" students and "yours" - or worse yet, what I experienced in the early years, "those" students. The SLT shared that she saw a real need for students with special needs (in particular, autism) to feel more welcome and included socially.  She saw this mainly because of her own child, and then did something about it, even though her own child was not a student in this school.

The program they have implemented involves peer mentors in grades three and four, who are given instruction and support - knowledge of what autism is, language to use when interacting with other kids - those with autism and those without - and help in approaching someone who is feeling left out, or is reluctant to participate.  The program is successful, has been well-received, and is being expanded to other classrooms and other schools.

Memories now flooding . . .

I started in this particular school on a part-time basis, as the main support teacher for a very challenging student with autism.  She and I were housed in the classroom for students with serious behavioral issues (emotionally-behaviorally disabled, or EBD, at that time).  "Those" students had been there a little longer with an outstanding teacher who made us feel welcome from the very first day.  I sensed that the teacher was respected by others in the building, but it was a little harder for her students to feel completely accepted.

Because "my" student and I were only there for a little over half of every day, I had the luxury of coming in early on my own time and visiting classrooms.  As more students joined us, and I became a full-time employee, I continued to do this whenever my schedule allowed.  I loved interacting with the kids in the other classrooms and encouraged them to ask any question they might have.  We talked a lot about what it must feel like if you are unable to talk, and how it hurts to be left out of fun things at school because you (or your behavior) appear to be quite different.  The kids were great, and I especially appreciated it when their regular classroom teacher stayed involved during our activities and discussions.

But I often had the feeling that conversations in the teachers' lounge came to an abrupt halt when I entered, and felt the vibes of being left out of things myself.  Things got worse as the testing movement started taking over.  Lots of technicalities had to be worked out, but for the most part "my" students wouldn't be taking the state tests.  Fine with me!  But then I learned that all of their scores would be included in the overall results for our school, and all of their scores would sadly be ZERO.  In a small community with a local weekly paper, things like this become a huge deal.  "My" students would potentially make this one elementary school look really bad.

I should also mention that I had recently been let go from my previous teaching position in a neighboring community because of my insistence on using Facilitated Communication - this nasty story having been fully covered in that same local paper.  Oh, and then there is the complication that this particular elementary school that  had hired me was part of the district where my husband was serving as superintendent.  Just how many strikes against me did that make?

So, that is the down side of what I was experiencing in that school at that time.  There really was a good side that kept me going, and on reflection those were some of my most positive years as a teacher.  Let's just say it wasn't easy!

In a very short time, my students grew in number and we moved into a small classroom of our own. We started with inclusion for lunch and recess, along with special classes such as music, art, library and physical education.  One of my blessings at that time was a team of wonderful paraprofessionals who were there to provide whatever was needed in the way of support so that the experience out in the mainstream could be a positive one for everyone. Initially, there was some subtle resistance on the part of the "special" teachers because they had the challenge of including all of my students, while regular classroom teachers saw very little of them.  It took some time, but by the time I was ready for retirement, it was the "special" teachers who were among our strongest advocates.  They really got to know and love the kids, and we did our best to make sure supports were provided.

One of the paraprofessionals assigned to my program had some reservations about the level of attention (and likely disruption) our students needed (and disruptions they might cause) when they were out in other classes.  She was a parent herself and thinking about her own children who were students in a different district.  Was inclusion fair to the regular kids?  Wouldn't they suffer if their teachers had to deal with students who had such significant needs?  She didn't say much, but she was definitely concerned.  And then, after several months she confided all of this to me and said that she had been wrong.  Every day, in so many  situations, she witnessed the kindness and compassion of the other students.  She said, in fact, "I wish my kids could be a part of something like this."

Part of what made things so special at that time was the involvement of Kate and Irene, two fifth grade girls who started stopping by and gradually became an integral part of our classroom.  Because my students ranged from kindergarten to fifth grade, and each was included for only part of every day in regular classes, there was always someone back in our room, and I was usually the one there working on IEP goals with whomever was present.  In a beautiful example of reverse mainstreaming, Kate and Irene (later joined by their friends and kids from other grades as well),  gave up recess or lunch time, or whatever free time they could find, to come to visit - providing the same kind of social role models that I was hearing about in this conference presentation.  Our room became so popular that we had to issue limited passes so that traffic was manageable. 

The paras were awesome, the "special" teachers were supportive, the other kids were great, and then we had the professional expertise of a wonderful Occupational Therapist, a School Psychologist, and more than one Speech/Language Therapist.  What we didn't have was administrative support, and so we lacked the structure of what was really needed for a peer mentoring program.

Fifteen years later, and my heart was filled with joy to realize that the seeds we had planted were now coming into full bloom.  Thank you, John and Victoria, and the entire staff, for making this possible.

Saturday, May 5, 2018

A Mothers Day Tribute

I wrote some thoughts about the parents of kids with autism several years ago (The Real Mama Grizzlies), and now hope to add just a little to that particular discussion.

Some time back, I attended a conference focused on recent research in the field of autism.  With our awakening to the very real challenges of kids on the spectrum becoming adults, one of the more relevant and interesting topics that day was quality of life for adults with more severe autism, specifically those who have little or no spoken language and require ongoing care throughout their lives.  The young person (doctoral student maybe) giving the presentation struck a nerve with me when describing an unexpected observation coming from their research.  Essentially what they found was that quality of life was generally perceived to be better if the person on the ASD spectrum had a mother who was actively involved in their life.  I am taking great liberties here in my paraphrasing of what was said, and since this was not originally part of the research design, but rather an aside that became more and more obvious to the researchers over time as they collected their data, I am not sure if it even made it to the written summary of the study.

A dad in the audience challenged the statement that it was the mother who needed to be involved, but this was explained as a simple reflection of the reality that almost without exception it was a mother who was responding to what was being asked in the questionnaire.  It wasn't that dads were unimportant or uninvolved; it was just that the researchers were dealing with mothers almost exclusively in this particular study.  Meanwhile, I experienced a chill throughout my entire body as I looked around and realized that I might well be the only one in the audience old enough to have actually experienced the stigma of the "refrigerator mother."  While not a mother of an autistic child myself, as a young teacher I certainly DID hear the theories and know that mothers around the world were living with the knowledge that many, many professionals did, in fact, hold them responsible for the challenging behaviors their children were presenting.  Other than that one father and myself, no on else seemed the least bit troubled.  And the discussion continued.

I gave some serious thought afterward to pulling what I call the "Grandma card" --- I could contact someone at the center and suggest they educate their young researchers about the early history of autism.  I certainly should save them all from further embarrassment going forward. Grandma's wisdom, you know.  But a little time went by and in the end, I did nothing. 

Well, not exactly nothing.  I did a whole lot of thinking and reflecting, and gradually came to the realization that they might be onto something.  My second career, post-retirement from teaching, has involved working closely with many families who have non-speaking adult children who require care and support 24/7.  They come to see me because their families recognize that these individuals, while unable to speak, may actually have a lot to say - and for most of them, typing is highly effective.

Day after day, I interact with mothers who believe in their grown children.  These moms continue to be highly involved in their kids' lives.  Many have made the choice to put their own lives on hold and devote whatever time, energy and resources might be available to them to providing the support their child  needs to have the highest possible quality of life.  They actively advocate for their child, they continue to seek out appropriate programming and community involvement.  They schedule therapies and medical visits.  They modify diets and menus, provide nutritional supplements, buy organic and cook from scratch, do their own research into what might be most beneficial to good health.  They travel to conferences and stay up late at night to check for the latest Internet updates on what is new in the field.  Some even uproot their whole family and move in order to access better support services.

Yes, of course, dads are involved also.  But I  see mostly the moms, and the ones I see are amazing.  To carry this one step further, you might want to search for such terms as "awesomism" or "awetizm" to get a relatively new and exciting view of autism and all its special gifts.  These parents REALLY believe in their kids!

I don't want any of us to forget the damage done by the image of the refrigerator mother, but I think we can all agree it is better to see the gifts that mothers, fathers and their children bring to our world.  Let's focus on that, and let's agree that a child whose parent believes in them and never ceases to do all that they can to provide love and support is almost certain to have a higher quality of life as an adult than one who is unappreciated or underestimated.

Tuesday, November 14, 2017