Tomorrow Is Too Long to Wait for Inclusion

Inclusion Spotlight #001: Hope Technology School

We first became aware of Hope Technology School (HTS) through Russ Ewell (@D_Scribbler), founder of Hope Technology Group. He shared that HTS was an excellent example of what a genuinely inclusive school looks like. We reached out to Howard Kiyuna (@HowardKiyuna), a teacher at HTS and asked a few questions about how he got started with the school and what he thinks makes HTS a great learning environment for all students. Below is his response:

My name is Howard Kiyuna, and I am the Language Arts teacher for the Middle School program at the Hope Technology School. I also serve as the Director of Technology. From 1988 to early 2001, I worked in the field of Child Development. I started this work because I wanted to work with kids. Years later, I wanted to use this experience to be of more help to others, and I began volunteering for the Hope Technology Group, which had various projects in the S.F. Bay Area. About the same time, I was also planning on changing my career to teaching regular education.

I was interested in helping the Hope Technology Group more and as it’s projects began to focus on the Special Needs community, I decided that a special education credential would be a more practical use of my talents. I went from wanting a more stable income and a three-month vacation to jumping in headfirst into a new career. I was 35 years old at the time.

Very soon after beginning the credential program, the group decided to open a school. I was in the right place at the right time. I was one of 3 teachers hired to start the school. My wife left her career in deaf education and began the pilot program in May of 2001. By the summer, we had three classrooms and a therapy department up and running.

To describe what makes our school different I will give you a quote out of our Assistive Technology Manual:

“We began with a parent’s vision of an inclusive community for families with and without disabilities. The hope was to use technology, particularly computers, to include individuals with disabilities and their typically developing peers into one classroom environment.”

For me, inclusion is a mindset. It is a goal for every student. I envision all populations of students benefiting from this experience. Our test scores and our experience tells me that it works.

I have many ideas for the school’s future. The difficulty is focusing those ideas and building smart. Inclusion involves time, planning, training, and vision. I believe that you have to want it for the kids, for the families, and the community to successfully do it. Inclusion is about serving the best interest of the student and the family. What works in one situation will not necessarily meet the needs of others.

These video clips tell the story:

 

Why Touch Technology from Hacking Autism Hackathon on Vimeo.

Jordan’s Story from Hacking Autism Hackathon on Vimeo.

Thanks for your time and attention to helping students!

Howard K. Kiyuna, M.A.

Teacher, Director of Technology

We want to thank Howard Kiyuna for his time and response to my questions… It is remarkable how much can be done for all students when you never give up on them. For more information about Hope Technology School visit their website at http://www.hopetechschool.org/.

Editor’s Note: This post was originally published in 2012 and has been updated with a new featured image and formatting.

The Real End Game for People on the Autism Spectrum

a chess board with the light pieces blurry in the foreground and the dark pieces focused in the background

By Jess Wilson

A Drug to Improve Social Skills

The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism.

It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The success was most notable in improving social withdrawal in the trial group. Since, according to the article, nearly a third of the population diagnosed with Fragile X also have autism, researchers have high hopes regarding Arbaclofen’s implications for the broader autistic population.

The research is exciting. To call it novel and ground-breaking are not exaggerations. This is big, new, hopeful stuff. But like a lot of exciting, novel, ground-breaking, big, new, hopeful stuff, it comes with questions that need to be answered. The biggest of which, for me, is Is it going to be good for our kids in the long run?

When I read the article, I stopped short at this:

“If an intervention makes progress in helping someone navigate the world on their own terms, that’s good news,” [Ari] Ne’eman says. “But let’s remember that “looking and acting normal” aren’t necessarily the only or best way to do that. … It’s important that we have a meaningful conversation about whether or not we’re focusing on the outcomes that matter for making autistic people happy, instead of focusing on making us appear more non-autistic.”

Hopefully, Arbaclofen does the former. Hopefully, it helps people like my daughter navigate the world more easily ON HER OWN TERMS. Hopefully, it simply mitigates some of her toughest challenges and allows her to still feel as though she is fundamentally who she is. But before we run headlong into embracing any of these revolutionary drugs or ground-breaking therapies, I think we have a responsibility to ask those questions. To, as Ari’s quote implies to me, engage in a meaningful dialogue about the cost to our kids. Because, like it or not, there’s always a cost.

Is Repetitive Behavior Really Hamful?

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. “

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

Life Is Not Formulaic

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you, therefore, need to pass as something that you’re not can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

I walk the line here. It’s not a free-for-all. There ARE behaviors that are not okay. We live in a civilized society. There are some reasonable expectations within that structure that we, as participants in it must learn to meet. That we won’t hurt others. That we will respect others’ privacy and safety and dignity just as we need and expect them to respect ours. There are skills that are necessary to enable us to interact with others, to make friends if we so desire, to find and keep employment. They are important to learn.

And so too, life is absolutely, positively, without question, easier when you have the ability to make yourself understood in some fashion. And it’s sure as hell easiest when that fashion is the same as everyone else’s.

So by no means do I mean to imply that I think that we should not teach our autistic kids to play by society’s rules just as we do with any kid.

But for me, the underlying questions loom large in every single attempt I make to give my child the tools to conform, to communicate, to participate.

At what cost?

Is it still going to be good for her when she’s no longer a kid?

When she looks back will she say that I gave her the tools to succeed as she was or will she ask why I seemed so intent on changing who she was? 

How Far Are We Willing to Go to Change Behavior?

Yesterday, with this post and all of its big, scary questions still safely tucked away in my Drafts folder, I read an article about California’s ban on Gay Conversion Therapy for children under 18. For the blissfully uninitiated, GCT is the highly controversial and nearly universally condemned practice of attempting to change a person’s sexual orientation through some twisted version of psychotherapy. There is overwhelming evidence that the practice tends far more often to result in depression and suicidal ideation than heterosexualization (no, that’s not a word, but it’s as absurd as the whole concept.)

Just for context, let’s play a little game. Are you straight? If so, do you think that if I gave you aversion therapy – you know, like an electric shock every time I showed you a picture of heterosexual sex – that it might turn you gay? How about if I inundated you with photos of homosexual acts and rewarded you for showing arousal? No? What if I simply told you that your heterosexual feelings were wrong. That they didn’t conform (or that, if not society, then God, had a problem with you acting on them). That you could still BE gay, but you couldn’t ACT gay anymore. So what would happen then?

Well, according to story after story from those who have participated in this practice, what usually happens is that you either fail miserably at being what you’re not — OR — you ‘succeed’ and manage to live the life of someone you’re not. Which leads us back to the ‘overwhelming evidence that such therapy tends far more often to result in depression and suicidal ideation than heterosexualization.’

So what if you’re autistic? And I tell you that it’s okay to BE autistic but not to ACT autistic? Then what?

Is homosexual conversion therapy a perfect parallel to administering drugs for social impairments? God, no. Really, really far from it obviously. But do I think there’s a common lesson in them? Well, yeah, I do. Because when I read the second article, I found myself thinking immediately of the first.

So here I am, dragging this post kicking and screaming from the Drafts folder and out into the light of day.

I don’t have answers. I never claim to. I just have questions that I think we need to remember to ask.

I’ll end with this – based on my limited reading about Arbaclofen, I lean toward thinking that it’s likely a win. That it will indeed not just offer some relief to those who struggle to communicate, but at the same time hopefully give researchers vital information on how the process all works. But long before I’d give it to my own child, I’d have to do a LOT more research. And then I’d have to ask the big questions.

At what cost? 

And

What’s the REAL end game?

Thank you to Ari for making me think, forcing me to examine my approach and keeping me honest about what matters most.

Editor’s Note: This article was originally published in 2012 and has been updated with a new feature images and formatting.

Thank you to Jess Wilson of a diary of a mom for giving us permission to reblog this. Here is a link to the original article.

Is There Any Reason Why a Student with a Disability Should Be Educated in a Separate Classroom?

No Excuses - CACL

No Excuses

These three commercials make a strong case for full inclusion. From their perspective, there are no excuses for educating students with intellectual disabilities in a separate classroom. From the Canadian Association for Community Living.

Over 70% of parents, whose children with intellectual disabilities are in regular classrooms, report that their children are doing average or better:

Inclusive education is better for all children. Children learn what they experience.

Inclusive education settings enable children without disabilities to learn about diversity as well as respecting and valuing all people.

When children with disabilities learn alongside their peers, they are more likely to: continue in education, get a job, and be included and valued in their communities.

– See more at: http://www.cacl.ca/action/campaigns/no-excuses

Authentic Inclusion

Above all, we have maintained that authentic inclusion gives students with disabilities the best chance at living, working, and playing in their community. That is why we applaud commercials like these that take a strong stance. We understand that not everyone agrees.

At the same time, something critical to highlight is that some families don’t want their children educated in the general education. As inclusion advocates, we should listen to the concerns of families and not berate those that have made a different choice.

For some families, full inclusion is simply not an option. Families who have had challenging experiences with a school district’s inclusion model will often move to another area (sometimes a different state) to find the program that is best for their child. Unfortunately, families who move do it at considerable expense.

When we are thinking inclusively, our goal is for inclusion to be first and foremost in our own context.

Editor’s note: We updated this post to reflect a more nuanced view of inclusive education. Some readers felt confused by the hard line that the title of this post took regarding inclusion. Thanks to everyone who gave us feedback. We always hope to model what inclusive thinking is in our publishing.

Do you think it is ever a good idea to teach students with intellectual disabilities in separate classrooms? Tell us about it in the comments section below!

My Decision to Homeschool My Son With Autism

My Decision to Homeschool My Son With Autism

By Allison Trotter

I’ve been asked to write about our decision to homeschool Jackson, our middle school son with autism, a number of times.  People’s response falls into two camps: extremely skeptical or enthusiastically supportive.  There seems to be little gray area on this issue.  As a former high school teacher, I never thought twice about my ability to educate my child, so the negative response took me a bit off guard until I realized that many people are intimidated by the complexities of autism education, therefore believe it ought to be left to qualified professionals.

As I was brainstorming how to explain our decision to an audience of professional educators who support an inclusive approach to special education, I felt an analogy would be an interesting way to illustrate our situation.

In addition to autism education, I am also passionate about healthy living.  I have been researching and implementing healthy nutritional, dietary and environmental lifestyle choices for over a decade.  I am a huge Michael Pollan fan and have been an advocate for local food before it became the latest craze.  So, it only seems fitting to have the local organic family farm represent our family in this analogy.  On the flip side, let’s have BigAgra business (like a Tysons or Purdue) represent any institutional school system, public or private.

With this in mind, the scenario I present to you is this:  A BigAgra business acquires a small local organic family farm.  What challenges do you foresee in this merger?  What steps need to be taken by both parties to ensure a successful transition?  And, is there ever a time to dissolve this newly created partnership because the two farms are just not compatible?

Inclusion of a small organic family farm into a massive, government subsidized and regulated farm is going to be challenging for sure.  But there are steps that can be taken to respect the integrity of the local farm without compromising the requirements of the big agricultural machine.  Compromise must be made on both sides for this partnership to work, and if it can work, how wonderful for all parties involved!  The local farm gets huge exposure to new and innovative ideas and practices, and the large farm gets a refresher course on the value of individual care and attention to purity and quality of each morsel of food produced.

Sadly, my precious organic family farm, which I had tended with painstaking care every day for twelve long, hard years, with every ounce of heart and soul I had, got plowed over and salted without anyone ever consulting me. One day, it was there, and the next it was gone.

The decision to homeschool Jackson came very suddenly and very emphatically as we were sitting in an “emergency IEP” meeting six weeks into the start of middle school.  We had no idea he was having trouble until we got a letter in his binder requesting a meeting to address his behaviors and lack of academic progress.  We felt blindsided in the meeting because all the reports home up until that point seemed fine. During the meeting, it became very clear that this large public school of over 2,000 students that housed an autism center with over 220 students had only one system. In this system, every student had to conform to it, and unlike our excellent public elementary school, there was absolutely no room for individualization based on the needs of the child. We were essentially told, “that is how we do it here, and Jackson needs to learn to adapt because middle school is tough and he has to figure it out like everyone else.” All of a sudden we realized that our special needs son was a product and not a person.

My local organic family farm was being swallowed up by an agricultural machine that had no time or interest in our silly ideas or sustainable practices to ensure a healthy and vibrant future for not only our food but for our greater community.

So now, we homeschool, and we spend more time out and about in our city, meeting people, sharing our ideas, teaching tolerance and acceptance of diversity, spreading our passion for learning, and growing the highest quality human beings that we can with our small organic family farm of unique and awesome people.

Editor’s Note: This article was originally posted in 2012 and has been updated with a new featured image and formatting.

Allison Trotter is a former high school government and economics teacher and writes for her blog Homeschooling Autism. You can find her on Twitter and Facebook.

Overcoming Barriers to Meaningful Inclusion

classroom; meaningful inclusion

By Nikki Heiman

I Believe in Meaningful Inclusion

Hi! I’m Nikki from www.mycreativeinclusion.com. I’m so happy that Think Inclusive invited me to post here! I am an experienced special education teacher and Mom to a young man with Down Syndrome. I believe passionately in inclusion, but only meaningful inclusion.

Inclusion isn’t placing a child with a disability inside a general education classroom alone. Real inclusion, quality inclusion, involves well trained, open-minded staff members who have made a solid commitment to collaboration, communication, and the success of each and every student in their classroom.

Often there are very well meaning teachers who want to provide a complete, cohesive instructional plan but they lack the support network to facilitate it. Here, I will show you how to overcome some of the most common barriers to successful inclusion.

Expense

It’s a common myth that only specialists can teach students with disabilities. While specialists are a fabulous resource and invaluable to offering support in the inclusive classroom, unfortunately with budget cuts to public education they are not always on staff at every school.

Thanks to social media and resources like Facebook Live, these specialists are offering professional development to teachers all around the world in small tidbits for FREE. They are often also more than willing to answer specific questions. One of my favorites is Autism Classroom News. Dr. Christine Reeve has a weekly Facebook live show with great tips you can use right away. I also have a Facebook live show and you can follow me HERE. Another great resource to follow is Sasha from The Autism Helper.

Knowledge

To reinforce point #1- there is a LOT to know when implementing successful inclusion. That just emphasizes the importance of having a team based approach. If I am to think about what that looks like in my school, the general education teacher knows the grade level standards inside out, my specialty is behavior and modifications, then we consult with the speech pathologist for communication strategies. If we need to we have access to occupational therapists, physical therapists and a school psychologist for even more specialized support.

In order to have successful inclusion, the entire team has to be committed to communication. The entire team also has to have a mindset that we all have a lot of to learn from each other as professionals in order for it to work.

We use shared folders in Google drive to share tools and strategies with each other. It saves so much time because we can just drop information in it when we have time and the others can read it when they have time. Since we never have plan time during the school day at the same time this is a great alternative.

Modifications

In all fairness, each of these barriers builds on one another. Curricular modifications can be easy when the team works together and there is extreme organization. For example, if the general education teacher has shared the curricular expectations and the special education teacher has helped to figure out what the basic expectations for that student are, and that is well documented, it should be perfectly natural to make modifications. For example, (I like to use my son as an example because his teachers really work hard to make inclusion work) my son is 13 and he has Down Syndrome. He is in regular education for science and social studies. Since he is reading at an early elementary level, the skills in 7th grade science and social studies are pretty high for him. What our team decided on was that for every lesson he would be responsible for only 1 or 2 key concepts. This is usually some vocabulary and we create images to match using Google Slides. It’s fantastic because he is easily distracted and in Google Slides you don’t even have to click out of the app to research information.

Behavior

Behavior…. possibly the biggest challenge in including students who are neurodiverse is managing behavior. Students who are neurodiverse process sensory input differently than the neurotypical student. Coupled with challenges with communicating those sensory processes and the challenges of self-regulation, that can result in behavior that is difficult to understand.

Every time I’m asked a question about chronic behavior, my first question is always “What is the function of the behavior?” What I’ve found is that behavior is always a communication. Once we figure out what the function of the behavior is the next step is to find a solution for the student to communicate their need that works for them but it also works for you.

The challenge with functional behavior assessments, though, is that it requires detailed and continuous data collection. Our solution to that has been to create Google Sheets. In Google Sheets, I’ve created a simple form to document the duration, latency and frequency of behaviors as well as narrative reports for the behavioral antecedent, the behavior itself and the consequence to the behavior.

Collaboration

Tying all of these barriers together is collaboration. Usually it’s just a matter of time for the team to collaborate. It’s rare for all members of an Individualized Education Program (IEP) team to have plan time at the same time so that usually leaves only before school and after school times to meet. This is a practical issue- some members may not be able to be at school early because of daycare issues and others may not be able to stay late because they coach sports teams. Parents are vital to the success of the student and having their input is so important when planning a student’s instructional day! When parents have hectic work schedules it is hard to expect them to balance their professional life, raising a child with a disability and frequent meetings at school.

Google Docs is a fabulous tool for increasing collaboration amongst all of the IEP team members. Everyone can access the tools and comment, share, etc. when they have time. If you need to video call, there are Chrome extensions to use within Google Docs, or you can use Google Hangouts.

To get you started, I wrote a free ebook titled “Time-Saving Tech for Teachers.”
That ebook is available for download by clicking the button below!

Nikki Heiman with her sonI’m Nikki Heiman, founder of “Creative Inclusion,” a company that provides resources for teachers to help facilitate inclusive education. It started as just an online resource but since then I’m now traveling the US providing professional development in schools on topics such as inclusion, technology integration and best practice in special education. I am passionate about improving education for students with disabilities and I believe that starts with happy teachers who have a LOT of tools in their teaching toolbox! I am blessed to have a teenage son with Down Syndrome that has inspired me to be a better teacher, mom and person in general. I hope to share that love and kindness with the people I meet in this journey!  I can be contacted at nikki@mycreativeinclusion.com or follow me on my blog, Facebook Page, or on Pinterest.

Inclusion Spotlight #007: Mark Deaf McGuire

Mark Deaf McGuire

Deaf and hard of hearing advocate Mark McGuire offers insights based on 40-plus years of life experiences.

Thinking inclusive requires different thoughts depending on the disability. Just compare say an inclusive atmosphere for someone autistic and an individual with cerebral palsy. Each involves separate steps to achieve the same result, inclusion. However, at least one essential similarity applies to all disabilities. An open mind! In said spirit, I on Think Inclusive’s behalf happily dust off our spotlight segment to feature deaf advocate Mark McGuire.

No, not Mark McGuire the former home run hitting Major League Baseball player. Rather I recently interviewed the self-branded Mark Deaf McGuire. Born deaf, McGuire grew to become a passionate advocate for his community. McGuire’s life experiences the past 40-plus years make him an ideal candidate to learn from. Our discussion covered harmful stereotypes, accessibility issues in the deaf community, and more. The following contains our conversation’s highlights. Enjoy!

The most damaging misconceptions/stereotypes out there about the deaf/hard of hearing community:

“In my opinion, the most damaging misconception or stereotype in any community is that everyone is equal. The reality is that no one is equal. We are all unique individuals with our own human conditions regardless of whether we were born with these conditions or not. This applies to the language as well as the method of communication we use as individuals. As a whole community, deaf and hard of hearing people share similar communication issues. However, this does not mean as a whole community that all deaf and hard of hearing people uses the same communication methods. Therefore, there is no one-size-fits-all solution. In other words, not all deaf and hard of hearing people know sign language.”

Why someone deaf or hard of hearing would not learn sign language:

“Why do some people not learn more than one language or one method is a good question I often ask. The answers are as diverse as every individual on the planet.

For example, I know how to read and write in English but not Japanese. I can speak but not hear English. I can sign and watch in American Sign Language (ASL) but not Mexican Sign Language (LSM).  Nor do I know how to read or type in Braille.

My experience has shown me that it seems to be the lack of inclusion that leads to a lack of education. A lack of education means we are not able to make the choice to learn more than one language or one method of communication.

There are many (reasons) but two common reasons for this of which both have a ripple effect on all community levels from a nation as a whole to within one’s own family. Country values are one. There are countries where sign language is an official language therefore more support. Other countries, including the USA, which have not recognized sign language as an official language often receive less support.

Secondly there are educational values. Different educational systems have their own idea of what is the right way to educate everyone. As a result, sign language may or may not be part of the program.”

How social media benefits the deaf and hard of hearing community:

“My experience has shown me that there are still barriers on social networks to deal with depending on what’s causing the barrier. However, the number one benefit that seems to be shared among the deaf and hard of hearing community is that they no longer have an audiological barrier to prevent them from reaching out.”

What those outside the deaf and hard of hearing community can do online to increase accessibility:

“What can one do online, regardless of whether it’s on social networks or websites in any type of medium? The answer is as old as the first word that was immortalized forever in stone.

I’m not sure which came first, cave paintings or the rock etchings but the concept and context were “written” down…

Write it down. If you are doing any type of audio like a podcast or video, provide a transcript of every sound being produced on the podcast, whether it is blah blah blah or a burp.

This also goes the other way for sign language. It has to be written down for those who do not know sign language or see it. And yes, that includes writing down a fart sign. What can I tell you? It’s a human condition. If you gotta let it out, let it out.”

Steps those outside the deaf and hard of hearing community can take to ensure pleasant and inclusive interactions in real life:

“The most positive experiences I have enjoyed as a deaf person has been a result of a conscious effort to ensure I am part of the conversation.

While unintentional, it is often within in a group discussion where everyone is signing or talking where the effort falls short.

However, it is the individual(s) within that group that shift from the group attention to a more personalized attention where I often find the biggest degree of success.

It may be a ‘side’ conversation bringing me up to speed ‘they are just blah blah blah’, asking me a question ‘we are trying to figure out…..?’, or even a random conversation ‘did you see that ….?’

The ones who have stood out the most often would make direct ‘personal’ statement to the group by placing themselves directly in front of me. They know the value of having me as part of the conversation and want to make sure everyone knows this.

Even fluent sign language users often make an effort to make sure I am able to follow the signing conversation.

My ASL skills are commendable and I can hold my own. However, my skills are nowhere near the same league as some of the amazing signers I have been fortunate to know.

It is a very positive feeling when someone does this whether it’s signing, talking, or writing, to ensure you know what is going on. There’s no harm or shame in making such an effort.”

To Recap

Keeping an open mind proves vital to establishing an inclusive setting. Such mindset best positions you to solve any possible accessibility barriers. In regards to the deaf and hard of hearing community advocate Mark Deaf McGuire offered some guidelines to follow. First, do not assume everyone in the deaf and hard of hearing community knows sign language. When creating online content, supply a written format. For instance, post a complete transcript with each podcast episode. Amidst real life interactions take conscious action to confirm the person successfully follows along with the conversation.

For more from McGuire visit his website http:/markdeafmcguire.com. Connect to him too on Twitter and Facebook. Perchance you possess advice to add, leave a comment below. Want to see Think Inclusive explore what accessibility looks like for a different disability group? Again leave a comment with your suggestion.

What Inclusion Means to Me

what inclusion means to me

By Sue Robins

Recently, I was asked to speak to all the teachers at my son’s high school about “What Inclusion Means to Me.”  There would be about one hundred educators in the audience for their professional development (PD) day.  I sweated out my approach, talking to the special education teacher who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the country.  I was desperate to understand my audience, not to misstep, to represent other families well, for I had a lot of skin in the game.  The high school I was speaking at was where my son Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to an audience of parents and teachers on this same subject, almost three years ago in Alberta, Canada.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were traveling on a strong academic path.  One mom had angrily protested from the back of the room, “your kid is taking away from my kid’s teaching time!”  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s excellent bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some beautiful quotes about our kids being brave and presuming competence. I was very aware of not being self-serving – not only concerning myself with my own son’s experience but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behavior’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s PD day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron. I spoke about when he was first diagnosed (the baby we expected was not the baby we got).  I addressed my struggles with my fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974. I acknowledged the good work teachers do – how busy and exhausted they are too and asked them to reflect on why they chose to teach.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids in special education in the school, no matter how simple:  learning the students’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My intention was to touch hearts to change minds.  My key messages:

-the value of children with disabilities (the disabled do the work of love, says Ian Brown)

-expanding the definition of diversity to include different abilities

-to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in our particular school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose to teach.  In the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one. This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the same messages I share with healthcare audiences, as I’ve realized that these concepts are profoundly universal.

In the end, for me, everything always circles back to Raymond Carver:

And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.”

― Raymond Carver, A New Path to the Waterfall

Photo Credit: Bradley Huchteman/Flickr

sue robinsSue Robins is a writer, speaker, and mom of three.  Her youngest son Aaron is 13 years old and has Down syndrome.  Her essays about motherhood have been published in the New York Times, Huffington Post and Canada’s Globe and Mail newspaper.  Sue is passionate about families who have children with differences, coaching families to tell their own stories and nurturing gratitude and compassion in health care (and now education) settings.  She is also a partner in Bird Communications, a health communications company in Vancouver and Edmonton.  She can be found on Twitter and Facebook as @suerobinsyvr and her blog is suerobins.com.

Is 100 Percent Inclusion Right for All Students with Disabilities?

100 percent inclusion; green circles overlapping each other

100 Percent Inclusion

Is 100 percent inclusion for students with special needs always possible?

Scrolling through my Facebook feed recently, I came across a post by someone in a group I am in that advocates for the “100% Inclusion for individuals with special educational needs.” The post is as follows:

So I buy the 100% inclusion argument. I have seen the research. I’ve made the argument myself. But sometimes I get this pang, maybe it is from other parents who say that sometimes inclusion is overwhelming for our kiddos. Is there ever a time when 100% inclusion is not right? How would one know? I just want to be sure that I’m not forcing my values and not paying attention to my kiddo. y’know? Thanks for your thoughts!

What if full inclusion is not the right thing to do?

This is a legitimate question. For inclusion advocates, it may be a bitter pill to swallow, but the fact remains that there are many places in the world that authentic inclusive education is not available. For these students, is it worth pursuing something that may not be right for this particular student?

Let us examine what it means for 100 percent inclusion to be “not the right thing to do.” If a family wants to pursue full-time inclusion for their child and the school and staff are not on board and they do not have the resources to do so are we not setting them up for failure? Although inclusive education as a global concept is right, good and honorable, it may not be the right thing to do for that student at that specific time or place. I do not believe inclusive education advocates lose any credibility in conceding this idea.

What if full inclusion is not what the parents (or the student wants?)

When I have approached certain parents about including their child more in the general education environment, they have balked at the notion. As an advocate, I believe it is important to listen to the wishes of the family when making a placement determination. That is, after all, what the Individualized Education Program (IEP) is supposed to be about, making decisions as a team.

Also, if a student is showing that they are uncomfortable (or even terrified) in the general education setting, we must listen to what their behavior is telling us. The goal, of course, is that we include them as much as possible and that we are actively working toward inclusion.

We need a bigger tent.

I am grateful for the courage of parents who ask hard questions about what the implications are of 100 percent inclusion. We need safe spaces to talk about our concerns without being browbeaten for wanting to have real conversations. For inclusive education to move forward, we need to wrestle with these concerns. There are no easy answers but if we are not afraid to ask the questions we can work together to find answers for all students.

For the record, I still believe that inclusive education for everyone is the best course of action for all students (and the research back it up.)

What would you say to parents who are questioning if 100 percent inclusion is always the right thing to do? Tell us what you think in the comment section below!

Photo Credit: cactusbeetroot/Flickr

The Pursuit of Inclusion: Blazing a Path for Our Son with Prader-Willi Syndrome

pursuit of inclusion; a dirt path running a lush forest

This past year, our son Dean, who has Prader-Willi syndrome, began his preschool career at the ripe old age of 3. Dean, like others his age, was in a “natural environment” program, which met at a daycare with typical and special needs peers. In this program, a parent or caregiver is required to attend with each student and is there primarily to observe. This experience and others involving mother’s groups, playgroups, and outside educational programs, has given us great insight into what is best for Dean.

I love the special needs environment because they really “get” some things, like how someone with muscle tone as low as Dean’s might need extra support to sit in a chair so they can concentrate more on work than on not falling over. They used a slant board for Dean to view his work at eye level so it would be easier from visual-spatial and fine motor standpoints. And having a PT, OT, and SLP at the ready – for a quick consult even if Dean doesn’t receive their services – is a dream. A relief. The smaller child-to-teacher ratio is necessary for the amount of help Dean needs to be most successful.

And yet, we find that typical environments tend to have more of a healthy fear of specific information we might have about Dean or PWS. They don’t assume they know how certain meltdowns or specific speech issues will play out. They’re not jaded by the usual categories of special needs and approach Dean more as an individual who is perhaps a bit more complex than is their average student. As with our doctors, babysitters, caregivers, or the average onlooker, we find so helpful those who seek to learn rather than those who ignore the pertinent first-hand information we have for them and assume that they know best.

For this coming year, our county does not offer what we are really looking for, which is an inclusive classroom. These scenarios exist in nearby counties, but not in ours. The recommendation of Dean’s IEP team (and something we wanted in part) was a “center-based” (special ed.) classroom. But I asked about opportunities for Dean to interact with typical peers, and I was told that this was only a possibility. For us, leaving this up in the air was surprising, not to mention… unacceptable.

I told his teacher that we were thinking about doing a few days in a typical preschool, and then the other days at center-based. She referred to Dean’s IEP and mentioned that if he wasn’t at center-based every day, he might not be able to meet all of his goals. She said, “You have to decide what’s a priority for you: academics or socializing.” My head spun as I thought about what she said, for it never occurred to me that this was an either/or issue. We want both for Dean, and we weren’t going to get it with what was being offered to us. So we decided to send Dean to a typical preschool two mornings a week, and to center-based three times a week. As we have done for him countless times in these past three years, we are blazing our own path. To do anything less would be a disservice to our sweet Dean, no matter what the learning environment.

Photo Credit: Nicholas A. Tonelli/Flickr

Editor’s Note: This post was originally published in 2012 and has been updated with a new featured image, category, and tags.

Ali Foley Shenk lives in Richmond, VA with her husband Bob and their three boys: Cole, Dean, and Emmett. Ali writes, mostly on her blog at divingintothewaves.com, and is also a freelance copy editor. She also volunteers with the Foundation for Prader-Willi Research (www.fpwr.org).

Getting Over the Biggest Obstacle to Inclusion

obstacle to inclusion; lego figurine standing close to the edge at the top of the empire state building in NYC

How do you get over the biggest obstacle to inclusion? In November of 2011, I wrote a blog post for SpecialEducationAdvisor.com about educators getting over the fear of inclusive education. Here is an excerpt.

Even under the best of circumstances, there is always a bit of trepidation when starting something new. Think about the first time you rode a bike, drove a car, your first kiss, or really anytime you have ever taken a risk. The thrill and terror of it all can be overwhelming. I liken this feeling to the first time I took one of my students (a boy with severe autism and challenging behaviors) and put him in a 4th grade general education classroom. It was my first teaching job, in a self-contained classroom for students with autism in California and I was challenged by one of my professors at Cal State University Fullerton to begin the process of including my students in general education. At this time, there was little support for inclusion at my school (not even for Art, Music or PE – mainly because we did not have those programs due to budget constraints). Even so, I believed it was the right thing to do and began trying to change the hearts and minds of my colleagues. It was not easy at first, but after explaining that I was not simply going to “dump” my students off in their class, they were definitely more receptive.

This tends to be the biggest fear of people who are opposed to a “full inclusion” model. There are different definitions of “full inclusion” but one I prefer is apparent when we talk about the idea of Least Restrictive Environment (LRE). What is the environment that will least hinder the student from being educated with their typically-developing peers while still accessing the general curriculum (what everyone is being taught) in a meaningful way? There is no one-size-fits-all approach to inclusion just like there is no one-size-fits-all approach to general education (no matter how hard we want there to be). But…I am getting ahead of myself. In regards to my 4th grader who was now going to be included into a Math block in general education, I began to feel the anxiety creep up in me as the day approached. Would he keep his challenging behaviors in check? Would the class accept him when he started to script movie lines? Would the general education teacher think I was crazy for putting her up to this?

Diffusing and answering the inevitable questions was the big key into alleviating everyone’s fear. I spoke to the class before we started and explained my student, while having some differences in the way he experienced the world, was still a 4th grade boy who liked movies, music and playing on the computer. He liked Math, which is why we decided this was the best time for him to join his peers. It was also important to take the uncomfortable questions of “why does he do this,” or “why does he do that,” and answer them with the utmost respect and dignity to their new classmate. Perhaps honest communication is the best way to gain his peers’ trust…kids are too smart and usually know when you are trying to put one over on them. Once we got that out of the way, acceptance was the easy part.

Inclusion, at its very heart is a noble cause because it brings dignity to human beings when it otherwise would separate those who need love the most. Fear may be an obstacle but it certainly is not an excuse.

Source: Special Education Advisor: Fear Factor – Getting over the biggest obstacle to inclusion

Photo Credit: clement127/Flickr

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