Leaping with no net: autism for teens in Ontario

Last Thursday night, I attended a 2 hour session for parents of autistic children, run by one of our local support providers, Kerry’s Place, titled: Planning for Transition to Adulthood. Our son is 14, in grade 9, and as the presenters said, “it’s an optimal time to start planning.”  The room was set up poorly with yucky flourescent lighting, a variety of chairs, and some flip up tables.  Bottled water, and chocolate chip cookies were offered but most people had brought their Tim’s.  The projector was mounted in a way that made the size of the screen about 36 x24, and a ream of handouts were given to us.

Screen Shot 2019-03-25 at 9.06.41 PMSo when I say “our local”, I mean that Kerry’s Place is one of really 2 providers that can offer my family anything as we live in Elora, Ontario.  It hasn’t always been this way.  [insert a brief history on Autism funding changes in Ontario since diagnosis.]  Our son was diagnosed when he was in grade 2, at the age of 7.  It was a long time coming, and we did it privately, structuring the payments for the required psycho-educational assessment over two calendar years.  At the time, he was diagnosed with PDD-NOS which stands for Pervasive Developmental Disorder (Not otherwise specified).  Then the definition of autism changed (around 2013) and the amount of funding for autism didn’t increase, but the umbrella that we were all standing under got a little smaller.  That’s not quite the right analogy…we were hopeful that with an all-encompassing definition that support for autism would be more generalized but more plentiful.  But really what everyone needs is a different umbrella, after all if you’ve met one person with autism….you’ve met one person with autism.

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Services at this time became more centralized….and that means focused on cities.  I get it, I really do, it’s a numbers game.  But at the same time, specialized groups in schools, or local camps for students, started to evaporate.  It’s a really old, really hard-to-win argument….should we integrate or should we offer specialized programming?  Our board, for example, has tried to make each school able to support its local students with autistic needs.  Yet, the hubs in the schools for autistic students have disappeared.

Right now, our family has been on the waiting list for 2 1/2 years for ABA treatment.  He has received two sessions since his diagnosis, and his spectrum traits are not severe at all. We compensate by trying to find awesome, autism-supporting groups in the community where he can be himself, and get some social experience.  But the needs are still there.  Needs like finding others like himself.  He says “Being with people who are not on the spectrum, is like eating toast without the butter.” That’s a direct quote.  I feel like I’m always telling my son who he could be, and he needs opportunities to develop his own identity and to recognize his strengths for advocacy, for education, for employment.

Thursday’s workshop was quite intimidating.  As our son moves from 14 to 18, the programming becomes further away from us geographically.  We’ll need to think about education, transportation, legal rights to care/intervention, housing, all the things you normally need to think about preparing for an empty nest….except I’ll always be thinking: will he survive or thrive in this environment?  Having local, continuous support, will be one of those key pieces that make the difference.  We learned in our workshop about critical funding supports for each of these that will require hours of preparation and planning, priming and probably panic for each of our children to be the best version of them as adults.

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With the proposed changes to autism funding, to both communities and the absorption by our publicly-funded schools, we are facing dire consequences.  You see, the programs and funding for children with autism are already lacking if not non-existent, especially in Centre Wellington, so cuts will just mean impossible situations for families.

This summer, I am reaching a little further for a suitable summer camp as our local one has been cancelled…again.  The camp I’m looking at looks absolutely fantastic, with a 1:3 ratio of counsellors to campers, but the cost, even for a double-income family like ours, might be prohibitive.  I called our local office of Child and Family Services to inquire about funding maybe in a loophole under ‘child care’ or ‘support services’, and it doesn’t exist.  The camp itself gave me a list of charities that might help with funding and I will diligently go through them one by one asking, explaining, and hoping.  But can you imagine if I wasn’t a persistent, educated parent or if my son’s needs were greater or if I had more than one child with special needs or if I couldn’t drive let alone summon the courage to write all those emails? With each variable, the severity of this lack of funding is compounded.  There were people at our meeting who had driven for 2 hours to be there….it’s offered in a central area, once a year.  Can you imagine the vast array of reasons that might make the parent of an autistic child unable to attend that meeting?

Post script: I have to recommend that you read the book: Neurotribes by author Steve Silberman http://stevesilberman.com/book/neurotribes/— It’s available by audiobook as well as in print, and if, like me, you do a lot of travelling, then the audiobook is very digestible.  I’ve never read a more complete book on autism and the challenges that society faces going forward than in this book.

I’m an amateur researcher

I have been a teacher since 1994, spending 3 years teaching English in Japan, and the rest in Ontario teaching drama, English, and media arts in the classroom and online.  I became a teacher-librarian full-time in 2009.  Currently working ⅚ a teacher-librarian in a large secondary school.  My other ⅙ has me back in the classroom (by choice!) and I’m loving it.  This past semester I taught grade 12 media arts face-to-face and next semester I’ll be teaching grade 12 English online. I’ve really missed having my own students and dealing with the day-to-day tasks of teaching keeps me grounded as a school leader.  I am also part of my school’s Directions Team and we are constantly analyzing our school’s data.  2 favourite methods are: 1) the survey of staff and students and 2) looking at trends in student achievement.  I’m frustrated by how narrow these methods are and how little impact I see them having on how we move forward in our team.

Educational research has never meant more to me than it does now in my position in the library. As a classroom teacher I used to rely on the findings of the experts.  This July I’m taking my 7th course with the U of A TLDL M.Ed. program and I find now that I have more questions than answers.  My exposure to the rich resources available in the University of Alberta library have been a great influence on the integrity I seek in finding educational data.  I have spent the entire school year working on three projects which are strongly rooted in educational research.

1)  Inquiry question: What will the role of school libraries be in 20 years and how should I modify my physical library to embrace these changes?

Research description: based on theoretical research I am now applying interventions

I’ve been working towards improving the physical library and suddenly found out that the work orders to fix my unsafe shelving, ancient carpet and water damaged ceiling were going to be combined with money to build an accessible elevator and entrance and a big project ensued.  Then my principal became ill, replaced with an acting principal, and I’ve had to justify every idea in the last 8 weeks in order to make the renovations happen.

2) Inquiry question:  How can I better determine the needs in reading of my students?  Is there a cause and effect relationship between reading ability and success in grade 9?

Research description: gathering empirical data to better describe our student needs; began by correlating data on each student

We have developed a significant special education focus at our school in the last 4 years.  Our Transitions classes (students with developmental delays) have increased to 5 full classes and in total we have 450 identified students in the building.  I question our ability to accommodate these students without more research being done.  With money from our board’s Student Success department, I put in about 60 hours of work studying students’ reading abilities in grade 9 in order to find a consistent tool for identifying reading level.  The Student Success group wanted to relate the reading research to success in grade 9.  I ‘hired’ (i.e. coerced, cajoled and got release time for) one of our special education specialists to use the literacy portions of the Woodcock-Johnson test to test 31 grade 9 students.

2) inquiry question: How can I better emphasize the creative process to my students?  How can I use a digital portfolio to help them make their process thinking visible?

Research description: action research applying interventions and then gathering feedback

Together with 5 other secondary teachers from our board, we were able to get 4 release days to try to answer these questions above.  We each used various online tools to encourage and monitor our students as they learned to make their thinking visible.  We presented our findings to teachers across the province.

As an aside, I’m also the mom of an 8 year old, Max, who was diagnosed on the Autism spectrum in 2012.  We’ve volunteered to be part of two studies so far.  The first was to see how children transition from the daycare setting to the public education system.  The second is to track the genome of autism through families on a global scale.  Both studies, through the Offord Centre for Child Studies, are fascinating in their complexity and educational profiles were done of Max to an extent that is very insightful as a parent.

In trying to define my research position, I’m trying to think of it as a Myers-Briggs personality test or a Kinsey quadrant.  I’m strongly constructivist leaning towards interpretivism.  I tend to butt heads with my administration when they ask me for hard calculable data so I’m pretty sure that I’m an Internal-idealist, although I can see both sides to the epistemological assumptions.  Although my goals are to show definitive conclusions in my research thus far, I tend to find deeper meaning through interpretation.

In this course I hope that I’ll move away from being an “amateur researcher” (Rolfe et al., 2010, p.6) because I am guilty of “quasi-scientific conclusions” (p. 7).  I’d like to make my research  more valid in order to:

a) advocate for library resources

b) advocate for further research support including release time

c) maintain and increase the importance of the role of a teacher-librarian at our school and in our board

References

Rolfe, S.  & Naughton, G.  (2010).  Research as a tool.  In G. Naughton, S. Rolfe, & I. Siraj-Blatchford (Eds.), Doing early childhood research: International perspectives on theory and practice (pp. 3 – 12).  Bershire, UK: McGraw-Hill.

Open-closed-exit-stop

I remember distinctly my kindergarten teacher, Mrs. Phillips, standing over me saying “Are you reading?” I was reading, of course.  Things are fuzzy now but I know the book involved some kind of abbreviated fairy tale with a well and wishes.  Then we had the principal, Mr. Henderson come down and I read a few books to him.  Then I was cutting out circles, and spelling and suddenly my parents made the decision to move me from kindergarten to grade 1 with Mrs. Halliday just two weeks into September.  I was overjoyed, of course, because my best friend Marni was in the grade 1 class.  Yet I can also remember the feeling of being on the fringe of normal for the first, but not last, time in my life.  I can remember looking back at the kindergarten kids watching them watching me and then finding a spot in the grade 1 room.  That was 1977 and it was a crazy year.  Not only did I skip kindergarten, but later that year I got mononucleosis, followed by tonsilitis and a tonsilectomy (when they still did that) and I missed a ton of school.  The decision to move me ahead a full year also meant that I was always trying to catch up on math, and I was permanently outside of social circles.

Now at first glance that might not all seem to have to do with my ability to read at an early age, but the same event impacted my life 30 years later when my own son, Max, began to read before he could even walk.  We would travel around our little town and he would say ‘open’ ‘closed’ ‘exit’ ‘stop’ and I assumed, that he was like me.  What I didn’t know is that Max has an attachment to letters called hyperlexia and it is just one of many indicators that lead us to just recently discover that he is on the autism spectrum.  In our home school board, I registered Max in the French Immersion programme thinking he was gifted in his ability to comprehend language.  After just 7 months in the program I agreed with his teacher that he was actually regressing in his academic abilities and moved him to the regular English program.  The very next year, Max entered kindergarten, and had the same teacher Mrs. Halliday, that I had in 1977.  I had the opportunity to ask her if she remembered me and the decision to skip me ahead.  She remembered me very well and said that she always wondered how I was for the rest of her career.  Unfortunately we were now out of the attendance zone for that school, so we needed to move.

Two years ago in grade 1, we started to realize the severity of Max’s quirks when his teacher couldn’t get him to express his comprehension of stories they were reading.  He could read them out loud, even spell many of the words on his own, but he couldn’t express his ideas.  Max, a kid with hyperlexia and son of a librarian, came home in June and said “I hate reading!”  After cleaning up my broken heart, I vowed to make reading happen in our home anyway I could, but always in a way that didn’t pressure Max.

Tonight at my department head’s meeting we discussed the failures of last year and the commonalities of these struggling students. I suggested that maybe the same students who are disinclined to engage in their studies are the same ones who are failing the literacy test.  Like them, reading is such an emotional journey.  I think sometimes we forget how reading can be a huge part of our identities.

Programming for students with autism in the school library

This post is really two posts in one.  In the Livebinder (link below) I was testing out the Livebinder platform as part of an inquiry project. My Livebinder is filled with thoughts and resources as both a teacher-librarian and as a    Mom of an autistic child.

Here is my reflection on the inquiry process as a whole and how the Livebinder and developing it will change my work as a teacher-librarian.

My major concerns with inquiry-based learning thus far have been how Vygotsky’s theory of Zone of Proximal Development (1986) works with the phases of inquiry outlined in Alberta Learning’s Focus on Inquiry document.  My primary interest in this inquiry has been examining how school libraries can better provide for students with autism.  Both my interests in inquiry and my inquiry question for this project became interwoven as I was challenged by each phase of inquiry.

Phase 1: Planning

Before I began my inquiry project, which examines how school libraries can better serve learners with autism, I was very anxious about finding information. In asking this question, I came to the challenge of answering it wearing two hats: as a teacher-librarian who works daily with students with autism; and as a mother of a son who has been recently diagnosed with PDD-NOS on the autism spectrum.  From the outset I have been worried that the task would become too personal and I would be completely off-task.  Truthfully, I found myself reading much more than I needed to for the assignment as it was so interesting and relevant to me personally to care for my son.  Choosing a topic that is personally relevant, developing a focus and staying on task are all challenges of the planning stage.  Accompanying these challenges are challenging emotions, such as the anxiety and confusion I felt during planning.

Phase 2: Retrieving

Initially, I narrowed my focus too much to achieve adequate search results so I broadened my search to include all kinds of libraries and how they were working to be more inclusive of their diverse populations.  This negotiation between narrow and broad searches is an area of inquiry where the secondary students I work with often become stuck.  Searching for classifications in the Dewey and National Library of Congress systems helped me to consider other possibilities.  As a teacher-librarian, I often find my students struggling to narrow their search terms in order to be successful.  Although I haven’t done so before, I will include these two classification resources in my lessons with students in order to improve everyone’s understanding of our collection.  Having these headings as I continued through the retrieval process, helped me to stay on track.

Phase 3: Processing

The Livebinder platform was completely new to me.  At first I couldn’t understand why it was preferable to a wiki, but I see now that it is better used for focused topics. The Livebinder is more of a living document and can easily be controlled and modified by the creator.  I really appreciated having the exemplars from past students, and as a teacher-librarian, I must remember to collect past work examples to show students for examplars.  Once I understood the system of Livebinder in creating Tabs and Subtabs (rather than pages or posts), I needed to develop categories that would help to answer my inquiry question.  There was a definite period of making connections between articles, and then evaluating pertinent information as I developed a subquestion for each subtab as a title.

Phase 4: Creating

I found that adding a consistent structure of colour, font size and format to each of the Livebinder pages helped me to further focus what was only most relevant.  I can see the Livebinder as a very good starting place for students who are trying to deepen their research.  I appreciate how you can easily add media to each page to richen the content.  I also really appreciate how each subtab is an actual live embedded link to the page, making it a visual enhancement rather than just a hyperlink.  As I chose the content of each LiveBinder tab, I went back to processing as in phase 3, as I was revising for my intended audience.  Realizing this negotiation makes the phases of inquiry appear non-linear and as a teacher-librarian I must expect students to negotiate these phases at their own pace.

Phase 5: Sharing

My favourite thing about Livebinders is how easy it is share them with the world through social media or embedding them.  As I was building this Livebinder, I tweeted the link and I immediately made a connection to the creators of Livebinder, Tina and Barbara (@LiveBinders) who favourited my Tweet and want to hear my feedback.  Sharing inquiry work and having feedback from an authentic audience is a vital part of the process and I am looking forward to hearing from my classmates and beyond as I publish it in various places.  In our school board, we are implementing a policy where we will not publish student material so as not to infringe on their privacy.  It is my hope, however, that students will realize the importance of the authentic audience online and self-publish.

Phase 6: Evaluating

Of course now that the inquiry is done, the hardest part is still to come which is to implement all of these good ideas.  I’m strongly considering applying for grant money to support programs to support students with autism in my library.  I have been concerned with collecting evidence to support my library advocacy especially after reading Carol Gordon’s (2010) article about developing a culture of inquiry.  I see applying for a grant and implementing a project that would benefit the whole school community would be a strong example of library work for an evidence folder.  It would be very satisfying to have my research culminate in a practical and measurable way.  As I reflect back on the importance of this meaningful step to me, I know it is true for students and I intend to place more emphasis on making these opportunities for my students.

The Livebinder platform is an easy and structured way to present information to students in a variety of formats.  Up until now I have been making a list of live links inside of Google Docs for each teacher-librarian lesson, but I think I will develop Livebinders for some student projects that I can count on having multiple questions for.  Then I just link the pathfinders to my library Google Site.  I may even convince a class to create Livebinders for other classes.

References

Alberta Learning. (2004). Focus on inquiry: A teacher’s guide to implementing inquiry-based learning [Pamphlet]. Alberta Learning.

Gordon, C. A. (2010). The culture of inquiry in school libraries. School Libraries Worldwide, 16(1).

Harada, V. H. (2010). Librarians as learning leaders: Cultivating cultures of inquiry. In S. Coatney (Ed.), The many faces of school library leadership (pp. 13-28). Santa Barbara, CA: Libraries Unlimited.

Vygotsky, Lev. 1986. Thought and language (rev.ed.). Cambridge, MA: MIT Press.

Evernote exploration

Evernote is astounding, and like I’ve already said with Diigo and Voicethread, I don’t think I’ll be able to adequately explore its full potential in this inquiry.  However this week has lead me in new and unexpected directions as I have begun to explore Evernote.  All three applications are examples of cloud computing and the implications for educators and students alike, are inexhaustible (Anonymous, 2009).

I’m not sure why I’ve never crossed paths with Evernote before.  The teacher in our Autism Spectrum Disorder classroom uses it religiously.  Most of his students have their own laptops, provided by the board of education, so he really reaches his students through computers.  However, as we all know, what works with special education students, helps all students.  Evernote is one of those things.

At first glance, it appears much like Diigo, which creates a library of bookmarked items.  Yet there are 2 distinct differences that make it unique.  The first, is that Evernote is not primarily social. You are able to share it with

friends through the share menu (shown above).  Diigo allows friends to follow lists.

The second is that Evernote can bookmark anything by taking a picture of the item and then bookmarking it.  Here’s a practical use.  I’m having a bottle of red wine, which I find quite tasty, so I open up Evernote on my phone, take a picture of it with my phone, title it and tag it and I can refer to it whenever I want.

The biggest advantage of Evernote to Diigo is that Evernote is available for iPhones, Android phones and Blackberrys.  It crosses platforms and is usable by all smartphones.  For this reason alone, I think it makes a more viable entry point for students to access rather than Diigo.

By surprise, I realized that Evernote will also sync with my Livescribe pen.  I’m new to the Livescribe pen, which digitally records the audio of a discussion at the same time as a video of what I’m writing and then you can save it as a pencast.  I think Livescribe has the potential to be a game-changing tool for education, and it appeals to me and many others in this sandwich culture between print and digital.  By linking the pencast to Evernote, I can then tag it with a bookmark title, and add it to my library.   If I was to do the same thing with Diigo, I would have to upload the pencast to the internet first, bookmark it, tag it and then I could find it in my Diigo library.  In a perfect world, Evernote and Diigo would be friends, and I could share the same library with both apps, or they’d merge, and their love child (Evergo?  Diinote?) would be beautiful.

I’m starting to develop a secondary school continuum of digital literacy, and I believe that Evernote would be an excellent tool to use with Intermediate students, and I’d bring Diigo into senior students who are deepening their research.  The rest of the world will begin to see the essential need of these kind of tools for organizing and prioritizing reading.  If the scope of the resources available online are infinite, then digital libraries will become as commonplace as buying a set of encyclopedias was for previous generations.

 

References

Anonymous, . Cloud Computing. (2009). Library Technology Reports, 45(4), 10-12.  Retrieved November 5, 2011, from ProQuest Education Journals. (Document ID: 1730425741).