Tomorrow Is Too Long to Wait for Inclusion

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

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

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Striving for Community as a God-Loving Aspie

man looking up towards heaven thinking about god

By Timotheus “Pharaoh” Gordon

Being autistic and striving to be a Christian is very rigorous at times, especially if there are little resources or examples for such community.

I’ve been practicing Christianity for about a year and two months. It may have been a difficult year of struggles; heck I still have to work on (e.g., having MY OWN convictions that are based on the Bible, not solely word-of-mouth). But I’m growing more convinced that through the power of the Trinity, even autistic people can change the world as Jesus did.

I love studying the bible, praying for people, helping out people, going to mission trips (to take pictures of those experiences), and hanging out.  Sometimes, I would blog about my faith on my website.

Yet, I don’t really feel like a member of the church at times. I interact with people, but not as well in huge crowds (so many people and too noisy). It seems like some would see this as not wanting to fellowship when it’s only part of my autism. I feel like very few of my peers understand my challenges with fellowshipping. I also struggle with emotional meanings behind certain passages.

I’m scared even more when it appears that I’m alone in the fight to stick with Christianity as an autistic person.  I met two boys in a Birmingham church who are autistic, but I’ve yet to find autistic adults who are Christian. How can I be an autistic Christian if there is lack of adequate examples of such persons out there?

I believe that first step in seeing more autistic Christians (especially those who are living independently and are verbal) is to provide resources that could help them grow in the faith. The catch is that resources have to come from someone or an entity who fully understands autistic Christians’ hardships in the world. Resources could even come from a person in the autistic spectrum who been the faith for a long time (e.g., at least 2 years). Providing spiritual guidance from the verbal, independent autistic’s point of view is more beneficial than turning to a place or someone with limited/stereotypical knowledge of the condition.

Meanwhile, more Christians that are autistic should network with each other and share their testimonies to non-autistic Christians. That will inspire many people and convince of how God could work through anyone.

With those, I would hope to see news of more autistic Christians making a difference in people’s lives and less of parent’s woes with raising an autistic child in a Christian household.

(sidebar) Links related to Autistic Christians:

Autism Society (Religion and Autism): http://www.autism-society.org/living-with-autism/family-issues/religion-and-autism.html

Books and Resources on Religion, Spirituality, and Moral Development: http://www.neurodiversity.com/religion.html

Christianity and Autism Forum: http://www.aspiesforfreedom.com/showthread.php?tid=21631

James Tuttle (autism advocate, political advocate, and commentator on spiritual issues): https://www.facebook.com/pages/James-Tuttle/23053891623

Spectrum Ministries: http://www.facebook.com/pages/Spectrum-Ministires

Photo Credit: Carlos Solares/Flickr

Editor’s Note: This post was originally published in 2012 and has been edited for clarity, has a new author bio and has as a new featured image.

Timotheus GordonBorn and raised on the south side of Chicago, Timotheus “Pharaoh” Gordon has loved the power of writing since 3rd grade when he copied love poems and read history literature in his free time. He got married to poetry in 2003 after turning in a humorous poem on his daily routine for a homework assignment. Writing, especially poetry, also helped him develop a voice as an African-American male with autism.
He is a freelance writer and blogger specializing in autism acceptance, social commentary, sports, cosplay, and comic/anime conventions. He is published in online publications such as Football.com, Creative Loafing Atlanta, and Yahoo Contributor Network. In addition, he takes event pictures at anime/comic conventions, rallies, college events, class reunions, 5K races, and church functions. Along with those two professions,  am currently an independent marketing representative, where I utilize social media and word-of-mouth to provide essential productions and show people how they can gain financial independence. Connect with him on Twitter @TimotheusGordon or his other social media outlets.

Tech Tools to Boost Writing Skills of Students with Learning Disabilities

stack of lined paper with some drawing and sloppy writing

By Michael Yarbrough

In practice, teachers quickly learn how often students with learning difficulties (LDs) face problems related to writing skills. One of the most frequent issues is Dysgraphia, which appears when your student has difficulty with correct spelling or handwriting. Specifically, your student may spell words on paper incorrectly and mix cursive with print or uppercase with lowercase letters. Another trouble is Dyspraxia, which may cause some difficulties with movement, including the physical process of writing and printing. Another common issue is Dyslexia. This is a learning disability that leads to reading problems that can also influence writing. If your students cannot make sense of written words or recognize them, they may have Dyslexia. Fortunately, today’s schools provide special programs for students with LDs so they can develop the skill sets they need to use their strengths and overcome their challenges. Furthermore, there are special technical tools your students can freely use for boosting their writing abilities:

  1. Speech-to-Text Synthesizers. This kind of software is created for children whose oral abilities are better than handwriting. They can dictate into a microphone and see their spoken words appear as text on the computer screen. Suggest using either Dragon Speech Recognition or Dictation software to create more complicated and longer essays free of spelling mistakes. Research has shown that essays created with the help of voice recognition software are better than those written in the more traditional way. Other benefits of using the above tools include enhancing core reading abilities, better navigating skills on the computer, and increasing a sense of independence while lessening anxiety.
  2. Word Prediction Software. This type of software is especially valuable for students with Dyslexia, as this technology predicts the words students want to write after just a few characters have been typed. As a rule, there is a box with several suggestions, and the user can choose the appropriate word to be inserted into the text. Try to test word prediction software using either WordQ or Co:Writer. These tools can also be used when sitting in a classroom and taking notes during lectures, as dictating aloud would probably disturb other classmates. Statistics show that word prediction is actually able to help students improve their spelling and transcription accuracy, increasing both word fluency and the academic quality of work completed. Furthermore, students enjoy how the program suggests a wide range of options so they can select the most appropriate ones without constantly worrying about spelling mistakes. Still, the process of choosing requires careful attention as there are many confusing words and word forms, so using this software isn’t as easy as it seems to be at first. Nevertheless, this tool is really effective because in many cases it shows more significant results than voice recognition software, as it not only helps deal with problems but actually does its best to solve them!
  3. Tools for Students With Rare Disorders. In addition to the common problems of Dysgraphia, Dyspraxia, and Dyslexia, there also are some other issues that, although they occur rarely, are important to know about. Cryptomnesia is when something that was forgotten returns suddenly but is thought to be new. In other words, memory resources become a new knowledge for writers without their realizing it. In this way, writers auto-plagiarize everything they remember, whether it’s a song or a literary composition. What is most surprising is how they do it unintentionally. To prevent these situations, students with Cryptomnesia can use Unplag to check their papers for plagiarism to be sure they use their own original thoughts and unique ideas. Dysantigraphia is when students cannot copy any printed or written material. Instead, students can write this material down if it is being spoken aloud by the teacher, but as soon as they take a look at a printed version of what they’ve heard, they become incapable of copying it. Scholars presume this disorder may be related to a stroke or other brain trauma. Screencast-O-Matic is a tool that will help students conquer Dysantigraphia by turning printed material into listenable sound files.

What You Can Do Besides Using Tools

Fortunately, there is a lot of information out there from reliable sources about difficulties with writing. Lots of research by psychologists, neurophysiologists, behaviorists and other specialists has taken place, which means there are many ways to improve written expression even without leaving home. Below are some ideas that are the easiest to follow. You just have to inspire your students to use them effectively!

  • Never stop encouraging students to learn;
  • Prove that reading is FUNdamental;
  • Concentrate on effort, not result;
  • Make them focus on their studying process;
  • Inspire students to stay hungry for new knowledge;
  • Advise them to take notes on everything;
  • Have the highest regard for their writing;
  • Allow them to use keyboarding when they’re tired;
  • Evaluate their achievements according to your expectations;
  • Pride yourself on constant teaching and improving together with your students.

With tools and strategies like these, you can help put your special needs students on the pathway to academic success!

Photo Credit: Yasmeen/Flickr

About the Author:

Before he became a private teacher, Michael spent five years in the school classroom. He always was an inclusive education advocate, and still, believes that everyone should have access to good education.  Michael shares his thoughts on education, pedagogy and digital learning on his Twitter and his personal education blog Cultivating Education. Follow him, and you will not miss his new posts!

Don’t Judge A Book By Its Cover

Don’t Judge A Book By It’s Cover

By Amy Williams

Don’t judge a book by its cover. 

I silently repeat that phrase to myself a lot these days.

As I overhear parents in the checkout line at the grocery store, my heart breaks. I hear whispers, “If that were my kid…” or “I can’t believe that kid…” ricocheting down the aisles. On social media I see posts from my “friends” shaming other moms in regards to how a child was behaving in Target or at the local Applebee’s. I thought I had left this passive aggressive cruelty behind in middle school, but now suddenly I am aware of it again.

Over the past ten years, I have been working with a variety of children in public schools and daycares. I thought I had a solid foundation of understanding children and the different abilities and comprehension levels they display—or so I thought.

Twelve years ago, we were blessed when our family friends asked us to be their son’s godparents. Of course we said yes! This little guy is an extension of our family and fits right in with our biological sons. He is the sweetest and most compassionate child, and unlike my older boys, still wants to hold my hand on walks.

We love him.

But all this love has opened my eyes to another problem I was completely unaware of until the past few years. Around the first grade, we found out our godson has a mild form of autism. Previously, we had chalked up his behavior as a little temper, an artistic view of the world, or he’s just a child. He was found to be on the spectrum and began receiving services to help him overcome his nuances.

After his diagnosis, I was suddenly aware of how others judged him or his parents. I overheard mean comments about how he should not be allowed in a restaurant if all he was going to do was refuse to eat. What the people didn’t know was that he had begun to see a feeding specialist and was overcoming severe food aversions. That morning was a huge breakthrough for him, because he asked to try new food: a muffin at this particular eatery.

I sat with my friend enjoying a stolen minute sipping coffee, chatting, and deflecting mean glances from an elderly couple a table behind us. As our coffee turned tepid, we laughed and shared moments from our week. Our talk did take a serious turn, however, when my friend told me how her son had been complaining that kids were not nice to him.

Unfortunately, children with special needs are two to three times more likely to be victims of bullying than their peer counterparts, and cyberbullying is taking bullying to a whole new level. It is quickly reaching epidemic proportions, but it is especially prevalent among children. Research states that 87 percent of our youth have witnessed or experienced acts of cyberbullying. We can almost guarantee that our own children have encountered digital aggression at some point in their lives.

And my godson is no exception. It has been a few years since that morning in the cafe, but he now contends with mean remarks or phrases over games he frequently plays on his tablet or console. Often, he is unaware others are being cruel, he thinks they are being his friends and doesn’t understand the undertones of the names the bullies use. He just enjoys interacting with others.

Our friends addressed this issue with his teachers and taught him that some words are not okay to use and are not funny. He has been taught to handle his reactions through role playing, and now he gives very little reinforcement to bullying behaviors.

Even though the cyberbullying is improving for him, words still cause pain. Children with special needs might be targeted more often, but it is essential people try not to judge or shame others over appearances or behaviors. It is impossible to understand the battles someone is overcoming.

As parents, we are given the unique chance to lead by example and to be mindful of how we use words around our children. Our kids are watching us and following our cues. If we talk about a child in the grocery store or blast others on social media, we are contributing to the problem. The bullying cycle can end with us. By modeling kindness, our children will be able to turn over a new page.

What is one thing you will do to stop cyberbullying?

Author_Amy WilliamsAmy Williams is a journalist based in Southern California. As a mother of two, she has learned a lot of things the hard way, and hopes to use her experience as a parent to help other parents raise their children to be the best that they can be.

 

What They Don’t Know Will Hurt Them: Going Beyond Instructional Level for Students with Disabilities

a sculpture in the middle of the park with large capital letters that reads, everything is connected

By Robin Pegg

What does it mean to be relevant?

Relevancy is defined at Dictionary.com as the condition of being relevant, bearing upon or being connected with the matter at hand, being pertinent. Think about your life right now, sitting wherever you might be. Do you feel relevant to this environment, this conversation, this social group?

Does everyone have an equal opportunity to BE relevant? They say that what you don’t know won’t hurt you.

But I’m not so sure they are right. For individuals with learning differences, what they don’t know has a huge impact on their ability to understand the world around them, and, consequently, their ability to engage in relevant social conversations and experiences with their peers.

For instance, in about 3rd to 4th grade… everyone else in class is reading “Sarah, Plain & Tall”. They are learning about Sarah’s letters to family members back home and to future family members she doesn’t yet know. They are learning about her trip across the country on a train, her sense of fear and loneliness, and her sense of wonder and adventure. Everyone in the class is relating to her emotions and experiences. They are creating a mental movie of what’s happening and they are learning to put themselves in her shoes. They are drawing conclusions and making predictions about what happens next. If a child with learning differences is included in this classroom and reading the same book they are able to actively engage in these same conversations and experiences. They are also able to engage in the extended learning and discussion that happens on the playground, at the lunch table, and during think, pair, share time in the classroom.

Teaching only at the instructional level is denying students with disabilities the same frame of reference.

The problem I see is that children with disabilities are generally taught at their instructional level. That might make sense in terms of their ability to develop skills; but it often makes no sense in terms of relevance. Over the years, educators have gotten together and decided what every child ought to know at the various grades in school. If children with disabilities aren’t taught at grade level, they are denied access to that same set of knowledge, and essentially rendered irrelevant with their peers because they don’t have the same frame of reference.

If a child with learning differences is included in the grade level classroom where they are reading Sarah Plain & Tall and provided a different book at their instructional level, they are immediately at a disadvantage with their peers. They might have the opportunity to listen to what is happening while they are in the room, but without access to the whole curriculum, they are cheated out of that rich experience the other children are having they don’t have the opportunity to create the same mental movie and share in Sarah’s experiences. So when the rest of the class is talking about the story at recess or lunch, the child with challenges has no way to engage in that conversation. Lack of access has denied them the ability, not just to participate in the conversation, but also to engage in the same sense of wonder. Worst of all, they are perceived as incompetent or “just not cool” by their peers because of this lack of knowledge… and this makes them irrelevant to their social group.

PrAACtical AAC recently published a blog post with this poster

a poster that reads, perception drives expectation, expectation drives opportunity, opportunity drives achievement, achievement drives perception

I’ll give you a few moments to let this sink in…

Perception (relevancy) drives EVERYTHING.

Remember the definition of relevancy is bearing upon or being connected to the matter at hand, being pertinent. Think about a time when someone you know with a disability did or said something extraordinary. For that split second, five minutes, or whatever moment in time; how did you perceive them? Were you thinking about what they couldn’t do? OR were you thinking about what they could do? AND… From that moment forward, did your perception of them as a whole change?

I’m not saying we should NEVER teach a child at their instructional level. As I said earlier, this is very important for building skillsets. But, when educators deny access to a broader curriculum because of their perception of a child’s ability, they create a curriculum casualty. Pretend that your instructional level in reading is grade two, and will, in all likelihood always be at grade 2. If you were only ever provided books at that level; you will have never experienced Lord of the Flies, Charlotte’s Web, or Willie Wonka’s Amazing Chocolate Factory. Just to name a few… Based on your reading level, it may also have been assumed that you were not able to participate in science and social studies classes past the 2nd grade because you just wouldn’t “get it”.

Therefore, you would have missed out on discussions about American history, civil rights (very important for someone with a disability), anatomy, volcanoes, weather patterns, cells, etc, etc. This being the case, what prior knowledge would you actually have to draw from in order to solve problems and make decisions in your life? How would you participate in day-to-day conversation in a relevant fashion? When you add the knowledge gaps in reading, science, and social studies together; the gaps become a chasm.

Rather than seeking out an individual’s strengths and using them to help a student access age appropriate curriculum and experiences, educators may be recognizing their weaknesses and allowing those weaknesses to dictate a student’s experience. Individuals with disabilities then might lack the experiences and prior knowledge they need to communicate appropriately with their peers, fulfill their role as a student, and participate in their world.

To be relevant is to be a part of what’s happening in the world around you.

People with disabilities live in the same world as people without disabilities, so they NEED to be relevant. They go to the same stores, they eat at the same restaurants, but if they are not engaged in the same conversations; they don’t have the ability to truly be citizens of their world.

You may have seen a recent Dateline program that discussed what happens when people with autism “age-out” of the system and how they might be ill equipped for the world in which they are now living. These are the mechanics that underlie the concept of being relevant. It’s nice that they are recognizing this for folks with autism…It is true for nearly all students with all types of challenges.

As educators of individuals with learning differences must understand that it is important to completely equip our children to live in their world. We need to expose children to as much knowledge and as many experiences as possible NO MATTER their disability or IQ. We must give them knowledge that goes beyond their instructional level. We must insist that our students are challenged to think, problem solve, guess, draw conclusions, correlations and analyze situations. These skills, together with a broad range of knowledge, will better equip our students to be relevant, and that will make them true “Citizens of the World”.

References

Hargis, C. H. (2003). Grades and grading practices; Obstacles to improving education and to helping at-risk students (2nd ed.). Springfield: Charles C. Thomas.

Hargis, C. H. (2013). Curriculum based assessment: A primer (4th ed.). Springfield: Charles C. Thomas.

Rosenfeld, S., & Berninger, V. (Eds.). (2009). Implementing evidence-based academic interventions in school setting. New York: Oxford University Press.

Wheelock, A. (1998). Safe to be smart: Building a culture of standards-based reform in the middle grades. Westerville: National Middle School Association.

Editor’s Note: A version of this post was originally published at the Williams Syndrome Association blog.

Photo Credit: Richard P J Lambert/Flickr

Robin Pegg - 2015Robin Pegg, M.Ed., COTA/L, ATP, is a Certified Occupational Therapy Assistant and Assistive Technology Specialist, working in the public schools for the last 13 years. Robin has extensive experience using all types of technology (low tech to high tech) to support learning and literacy development in children of all ages and ability levels. She also consults with various educational institutions to promote the implementation of Universal Design for Learning. Robin is the WSA’s Education Consultant and Director of Whispering Trails Camps.

5 Strategies for Positive Behavior Support in Inclusive Classrooms

a classroom with rows of desks with a large flat screen TV in the front of the classroom

By Megan Gross

I’ve come to the frightening conclusion that I am the decisive element in the classroom. It’s my daily mood that makes the weather. As a teacher, I possess a tremendous power to make a child’s life miserable or joyous. I can be a tool of torture or an instrument of inspiration. I can humiliate or humor, hurt or heal. In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child humanized or de-humanized. –Haim Ginott

The teacher is the decisive element in the classroom.

I believe this quote has power outside of the four walls of a classroom. As a special education teacher and inclusion facilitator, it goes without saying that my response to a student with a challenging behavior affects the student, but sometimes more importantly, it significantly affects the behavior of the adults around me.  While a student kicks, screams, and cries, paraprofessionals, general education teachers, campus security, and the principal take their cues from me for how to respond. If I am calm and confident, they will respond in the same manner. When my students are experiencing a meltdown or crisis while working with another adult, I watch to see how that adult responds. The ones who are calm, demonstrate respect, and provide the student an opportunity to safely experience his emotions are the adults I want on my student’s team.

I’ve also learned that how I respond to a student with a challenging behavior significantly impacts current and future inclusive opportunities for the student. Regardless of the fact that I believe every student should be included no matter what, I am keenly aware that many of the adults around me don’t share the same belief. The following are some lessons I’ve learned navigating the path of inclusion for students with disabilities and challenging behaviors.

 1.    Plan for your student and staff simultaneously.

Working with administrators and counselors to pre-schedule students in classes that are engaging, meaningful, and with supportive teachers is the first step I take in supporting students with challenging behaviors. While I want every teacher on my campus to accept and teach students with disabilities, I’ve learned that my students are much more likely to experience success in a classroom with a supportive teacher.

Each teacher is provided with an IEP student profile and PBS chart at the beginning of the school year. I do my best to meet with teachers in person before the first day of school (and certainly on a regular basis after school starts) and share my experiences supporting the student and family. We review the PBS chart and I make a point to highlight the strategies and supports that need to be in place to prevent challenging behaviors. I think it is essential to have honest conversations with teachers about challenging behaviors and provide awareness about what the student’s behavior is communicating. This builds trust and if I’m including a student with significant behavior challenges, I need my colleagues to trust me until they develop their own relationship with the student. I also need my colleague to know how to appropriately respond to a behavior so I can prevent a pattern of sending a student to the special education room whenever any challenging behaviors occur.

Students should have access to any needed supports in their general education classroom to prevent challenging behaviors. This starts with teachers providing appropriate, adapted curriculum materials and access to a communication system, if needed. Students may also need personalized supports they can access at anytime during class, such as fidgets, stress balls, inflatable bumpy seats, pencil grips or weights, a photo book of classroom rules, break cards, or something of comfort to keep in a pocket/backpack. Include students in identifying useful supports and creating their personal kit. Make sure to talk with paraprofessionals and the classroom teacher about the contents and purpose of the kit, so students are not prohibited from using these tools in class.

 2.    Strategy session: Two heads are better than one.

I am not afraid to ask for help and suggestions when supporting students with challenging behaviors. I am lucky to work with some of the most talented and creative paraprofessionals, who also have hobbies outside of their work. These hobbies have offered us behavior support strategies I never would have thought of by myself. One paraprofessional sews, and while at the fabric store one weekend she found a bolt of fake fur. She immediately thought of a student who repeatedly pulled the hair out of her arms and eyebrows. At school on Monday, we cut up very small squares of the fabric and asked the student if she might want to put it in her sensory kit (a small pencil pouch) in her backpack. She did and over time learned to pull the hair out of the fur, instead of her own skin.

When I am stumped or overwhelmed, I call in reinforcements. My district has a behavior specialist paraprofessional who is incredibly astute and calm. She has helped me observe students, collect data, and train my staff in communication strategies. I also look towards my colleagues or mentors who can help me be objective and look at the big picture. Meeting a mentor for coffee before work or a quick Skype chat can make all the difference in my feeling supported, which leads to me supporting students and staff more effectively. After quick call to a former professor, I remember best practices I learned long ago but had limited opportunities to put into place, until now.

3.    Empower students and peers.

I believe students and peers of all ages need knowledge about disabilities and behaviors in order to accept and appreciate each other. This begins with how the adults in the room model respect and demonstrate appropriate responses to challenging behaviors of all students. I think it’s important to de-brief with students and classmates after a challenging behavior. For some students this might mean reviewing a social story about “what to do when _____ happens”, while other students might engage in a verbal and visual problem-solving strategy. Classmates can support students in making positive behavior choices by providing natural reinforcement or kindly telling a student how challenging behavior affects them.

Classroom presentations also open the door to positive relationships with classmates. When one of my students advocated for himself and requested he not have a paraprofessional support him in his leadership class, his mom facilitated a class presentation about autism, her son’s strengths, and how his classmates could best support him in class. The teacher and classmates reported to me how helpful this presentation was and my student experienced independence and success in this class all year long. One of the best ideas I’ve read for a classroom presentation comes from blogger Mom-NOS, who talks to her son’s elementary school class about autism, using analogies that make sense to his peers.

 4.    Develop family and school partnerships.

Students with challenging behaviors, often have challenging behaviors at home or in the community. Developing positive behavior support plans with parent support and ideas is crucial. My students have had the most success when there are consistent rewards and consequences for behaviors at school and at home. This requires ongoing two-way communication between home and school and the ability of both parties to be open to new ideas or feedback.

Sometimes relationships between families and schools become difficult. In these situations, it has been helpful to me to focus on what is within my realm of control at school: good data collection, consistent responses to challenging behaviors, and continuing to advocate for the student to have meaningful instructional and social opportunities at school. A little bit of chocolate at the end of the day helps too.

 5.    Keep perspective.

In an inclusive classroom, students with disabilities are not the only students with challenging behaviors. I think it is important to know what is going on in classrooms on a regular basis to ensure students with disabilities are not being held to a gold standard of behavior, while everyone else goofs off in class. I once had a student who was sent to the principal’s office for playfully swatting a boy on the rear-end during PE class. This behavior was unusual for my student, so I went to observe PE class the following day and discovered a large group of boys swatting each other on the rear-end (similar to athletes on the game field) after completing the game. My student was imitating his peers, but unlike his peers, he had consequences. I immediately marched into the principal’s office and shared my observations about the behavior of all the students. We agreed on a new plan, with the PE teacher and paraprofessional, and talked with the peers about their behavior and how that would affect or influence classmates to respond.

With the right supports, students with disabilities and challenging behaviors thrive in inclusive classrooms. Identifying the right supports for my students has been an ongoing process; from the moment they walk in the door on their first day of 7th grade until the moment they graduate, we are continually fine-tuning our strategies to successfully support them in class.  But, I believe the commitment to that process and including students with disabilities and challenging behaviors, provide tremendous opportunities for growth for students and teachers. As Ralph Waldo Emerson said, “Life is a journey, not a destination.”

For more information and resources to implement positive behavior support plans in inclusive classrooms visit New Jersey Positive Behavior Support in Schools’ website. This site has ready-to-use resources for conducting a functional behavior assessment, team meetings, or staff development.

Photo Credit: Cali4beach/Flickr

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

Megan Gross is a special education teacher and inclusion specialist in California. She has facilitated inclusive education in K-12 classrooms. Megan is the co-author of The Inclusion Toolbox: Strategies and Techniques for All Teachers and ParaEducate, a resource book for paraprofessionals and special education teachers. She currently teaches high school and is the co-advisor of her campus’ Best Buddies club. Megan lives in San Diego with her husband and two children. Follow Megan on Twitter (@MegNGross).

When Life Hands You Lemons…

lemons
By Kendra Gottsleben

On November 3, 1984, an excited and anxious set of parents in South Dakota finally experienced the moment they had anticipated for nine months: the birth of their daughter. I, Kendra Gottsleben, was born healthy and strong, weighing nine pounds and measuring twenty-one and a half inches long and with no signs of future health challenges.  Like any new parents, they saw my endless potential from the first day they met me.  It was only a few months later that my family began a lifetime journey of great obstacles and challenges.  However, there would also be many blessing to come with them.

When I was four, I was diagnosed with a rare enzyme disorder called Mucopolysaccararidosis Type VI (MPS VI), also known as Maroteaux-Lamy.  One in 215,000 people are diagnosed with this condition.  My body is missing the enzyme that is needed to cleanse my cells, which causes a buildup of a gluey-like substance that affects my connective tissue and other vital organs.

Receiving the diagnosis from a geneticist was unimaginable and heartbreaking for my mother and father as they were unable to really comprehend what it meant for my future.  No parent ever imagines having to hear those words.  But, despite the diagnosis my parents raised me to keep moving forward and to never give in to what others say or think of me.

Fast-forward twenty-four years later, I successfully graduated from Augustana College in 2010.  I obtained a double-major in Sociology and Psychology with the hopes to help others.  I always have tried to define my life by my positive outlook and success in overcoming obstacles!  But truth be told, I have had my share of moments when I had to search long and hard for the silver lining in a frustrating situation.  Sometimes I do not end up seeing the positive immediately or even days after the incident.

A perfect example is when one of my college professors told me she thought I took the easy way out, and that I was not graduate school material.  It wasn’t until a week later that I realized how to make this a positive situation – she created a fire within me to prove her wrong.  The professor’s comments also made me take some time to reflect on myself and my ambitions in life, after which I concluded that I have accomplished a lot and I will not stop anytime soon.  Someday I know that should I choose to go on to graduate school I will be able to face that challenge confidently, no matter what my professor may think.

I have always been passionate about helping others whether they have or don’t have a disability or medical condition in realizing that who we are or what we look like should not stop us from reaching our dreams and goals.  My MPS has given me many obstacles such as poor vision, constrictive airway, and an inability to walk long distances, only to name a few.  However, I have always been determined to not let others limit me in what I can or cannot do.  I have continuously taken every experience, no matter good or bad, as a lesson learned and I press forward into my future.

As I keep constantly looking to learn from my experiences, I recall the first time an adult in my life told me that I have a lot to share with the world (besides my parents).  This person was one of my high school guidance counselors.  One day, as I sat in his office unsure of myself, he told me, “Kendra, you have the potential to impact others in great ways.”  I respected his comment at the time, but as a high school student, I was unable to see how my life experiences would benefit others.  Little did I know that the simple lesson my parents taught me when I was growing up would be my message to share with others: even though I cannot choose my obstacles, I choose my attitude which determines if my goals and dreams will be achieved.

Some people in this world adhere to a motto and I am no exception.  The quote I adhere to is, “When Life Hands You Lemons…Make Lemonade.”  This quote reminds me to turn obstacles in my life into positives.  I have even put my own special twist on this common phrase, “When Life Hands You Lemons…Turn Right Around and Squeeze Those Lemons to Make the BEST Lemonade Possible.”  My belief in this motto encouraged me to accomplish one of my biggest dreams: writing an autobiography Live Laugh Lemonade: A Journey of Choosing to Beat the Odds.  The book’s theme is about how I have overcome the obstacles in my life to accomplish my goals.

I frequently emphasize with others that we all have our own hurdles to overcome.  It doesn’t matter how different each of our lives are; life is difficult for all of us.  But without our challenges or lemons, we would not be the people we are today.  I know I certainly would not be!  The truth is that we all have to work hard to achieve our dreams.  The key to success in life is to never give up and never stop dreaming.  The greatest successes are worth the painstaking work.

The lemons in my life have gotten me to where I am today: a college graduate, author, business owner, and a Social Media Coordinator.  I have chosen to make lemonade every day, no matter what.  As I end, I ask you to reflect on this question, “If the obstacles or lemons had never occurred in your life, where would you be today?”

Social Media Networks

Facebook: Kendra Gottsleben

Twitter: @Kegottsleben

Pinterest: Kegottsleben

For more information regarding my book it can be found at the following link http://kenimagine.storenvy.com and there are ebook versions are available on Barnes & Noble.com, Sony, Kobo, Amazon.com, & iBookstore.

Georgia’s GNETS Program Illegally Segregates Disabled Students. What Does It Mean?

Georgia's GNETS Program Illegally Segregates Disabled Students
Why should you care about the recent DOJ finding that Georgia’s GNETS program illegally segregates disabled students? Chris Vance, an attorney in the Atlanta Metro Area, explains the ramifications and what to expect next from the DOJ and the GaDOE. This information was originally published on Carol Sadler’s Facebook Page (IEPadvocate4you).

**Emphasis Added

US Department of Justice (“DOJ”) issued a letter decision finding what we have known for a longtime: The Georgia Department of Education (“GaDOE”), in its administration, operation, and funding of the Georgia Network for Educational and Therapeutic Support (“GNETS”) program, violates the Americans with Disabilities Act (“ADA”). The DOJ found the GNETS program denies disabled students access to the same services, programs, opportunities, and activities provided to non-disabled students and wrongfully segregates disabled students from the mainstream.

So what does this mean?

No one knows for sure, but the US DOJ has recommended GA mainstream the disabled children back into the regular education settings and to the extent it does not do so for each and every child and any GNETS programming continues to exist, that GNETS programming must offer the same services, programs, activities, opportunities, and facilities to those children placed in the GNETS program.

It is my opinion that no segregated setting will ever be equal and that GA will not ensure that the segregated GNETS programs are equal. This would require proper, equal facilities, instruction, curriculum, and other non-discriminatory programming with electives, honors classes, gifted programming, magnet school choice, playgrounds, science labs, gyms, and sports, arts, music, and other such programs. Chess, art, music, 4-H, reading, and other clubs would have tobe offered. Real libraries and meaningful technology would be have to be provided. Teachers who are properly certified and trained would be a mandate. No longer could four and five different grades be combined in one class with one teacher. I just don’t see all this happening, especially given how far GNETS would have to go to accomplish this equality.

So, what should we expect? To begin, what the US DOJ expects, which is that the DOJ and GA will reach an amicable resolution. To this end, the DOJ has given the GaDOE 10 days to notify the DOJ whether the state is willing to work together to resolve the matter. If no resolution is reached, the DOJ “may” file a lawsuit againstthe GA DOE. It is important to note that a DOJ decision is not a court finding that the GNETS program is discriminatory. If a lawsuit were filed, the DOJ would have to prove the GNETS program violates the ADA, but it is my opinion that would be easy, as the evidence is overwhelming in this regard.

The decision should put an end, hopefully a faster than slower end to the GNETS program. Children in the program should be removed from the segregated settings and placed back in the mainstream. For any who might need a proper residential program, they should have already been provided a non-state residential program that offers disabled children the same, or better, services, programs, activities, and opportunities. For those few students, the local educational agencies and parents could select the proper residential program, which would have to be, in my opinion, an out of state program, given what is not available in GA.

The GaDOE should be highly motivated not to drag this matter out. Back in 2010, a GA audit found GNETS not to be effective, much less cost effective. Now, five years later, the DOJ found the GNETS program discriminatory, so why would our State department of education continue to maintain an ineffective, too costly, discriminatory program?

The time has long past that the GNETS program should cease to exist, and the GaDOE could effect this immediately. It could take the funds it would have passed to GNETS and proportion it to the local educational agencies, who could then comply with the ADA, IDEA, Section 504 and constitutional rights of disabled children all over the state of Georgia. We are talking about a lot of money that could be spent on real, meaningful services, programs, therapy, and other needed supports that are not really provided in the segregated GNETS centers. All the segregated facilities can be sold for the property (the buildings, forthe most part, should be torn down). Money generated off the sale ofproperty could also be used to provide proper programming.

Local school districts should start immediately having IEP meetings with parents, informing them that the DOJ finds the GNETS program to be discriminatory. These local school districts should immediately rewrite IEP’s to place children in non-discriminatory, non-segregated settings. Regional Educational Service Agency (RESA) and the local educational agencies are just as guilty as the GaDOE if GNETS continues.

If the GaDOE does not quickly, effectively stop funding the segregated, unequal, ineffective, discriminatory GNETS program, then parents can ask for IEP meetings and ask their children be removed from the improper programs and placement. If necessary, they can take further actions, including seeking monetary damages for intentional discrimination. The State and local educational agencies have formally been told today what they already knew – the GNETS programming is discriminatory.

Chris

CHRIS E. VANCE, P.C.
Suite 100
2415 Oak Grove Valley Road, N.E.
Atlanta, Georgia 30345
(404) 320-6672 – Tel
(404) 320-3412 – Fax
(404) 313-3800 – Cell

Photo Credit: Peter Eimon/Flickr

Do you have an opinion about the GNETS program? Tell us about it in the comments section below!

Why Person-First Language Doesn’t Always Put the Person First

Why Person-First Language Doesn’t Always Put the Person First

I vividly remember the first time I learned about person-first language (PFL). I was listening to a professor of special education speak to a group of students on disability “etiquette.” He handed out a sheet with rules on how to address or refer to a person if they had a disability. While lecturing, the professor seemed keen on calling me out, making me feel like a token, and prompting me to agree that when it came to disability, it was PFL or bust. I went along with it, but something didn’t sit well with me. I was born with my disability. It was news to me that calling myself a “disabled person” was an insult. It had always been just a fact of life, a part of who I was. And now, after all these years of calling myself what I am, here was an educator, who doesn’t even have a disability, telling me I had it all wrong.

At first, I shrugged it off, but I began encountering more and more people who proclaimed that PFL is the only way to show respect. So, I decided to dig deeper. And as I became more involved with a wider range of people from within the disability community, I discovered that PFL is not the only way.

There are two main types of language used to refer disability: person-first language and what is known as identity-first language (IFL). PFL as a concept originated among people who wanted to fight back against stigma. In a society that perceived disability as dehumanizing, advocates wanted those around them to remember that having a disability does not, in fact, lessen your personhood. As such, the PFL movement encouraged the use of phrases like “person with disability,” “girl with autism” or “boy who is deaf.” In speaking this way and putting the person first, it was considered a show of respect.

PFL was adopted as a general linguistic rule, moving from use by the people who initiated the movement towards heavy use by those in professional spheres. It essentially became the law of the land. Teachers, doctors, nurses, social service professionals, government officials… everyone was told that they should use only PFL. Using a term such as “disabled person?” A cardinal sin.

However, as with almost any major activism movement, PFL sparked a countermovement, known as identity-first. IFL is a linguistic concept embraced and actually preferred by countless people within the disability community. In the ideology of identity-first, “disabled” is a perfectly acceptable way for a person to identify. Instead of going out of your way to say “person with a disability,” when using IFL you would instead say “disabled person.” This is how I personally choose to identify myself. I am a disabled person.

And yet, non-disabled people largely tend to greet the idea of IFL with confusion or even anger, deeming it offensive to call someone disabled. I can’t even begin to tell you how many people I encounter who question my language choice. I realize I can’t blame them entirely, because PFL is all that many people know. It’s drilled into people’s minds, often in the form of generally well-intentioned sensitivity trainings and educational literature, as the only possible means to be respectful. But I just can’t get on board with this belief that person-first is the only way.

Consider how PFL intentionally separates a person from their disability. Although this supposedly acknowledges personhood, it also implies that “disability” or “disabled” are negative, derogatory words. In other words, disability is something society believes a person should try to dissociate from if they want to be considered a whole person. This makes it seem as though being disability is something of which you should be ashamed. PFL essentially buys into the stigma it claims to be fighting.

Also, would you ever make a point of describing someone by saying something like, for example, “a person who is Jewish” or “a person who is Asian?” Or would you just say “He’s Jewish,” or “She’s Asian?” My guess is you wouldn’t give descriptors like these a second thought. They’re not offensive words and there’s no implication of deficiency. They’re just facts about a person. Why isn’t disability treated in the same way? Disability is a state of being, a fact of life. It’s not a dirty word.

Furthermore, for so many people, “disabled” is so much more than a descriptor. It is an identity and culture unto itself. It is a source of pride. So, I am disabled. I am disabled just as much as I am a brown-haired, brown-eyed, glasses-wearing female. It is part of me. It is part of who I am.

I would be remiss if I didn’t note that IFL comes with its own set of “rules” that perhaps make it more difficult for people to fully embrace or accept.

Here’s a simple breakdown of IFL and how it’s used:

  • “Disability” and “disabled” are indicators of culture and identity. Thus, “disabled person” is an accepted term.
  • Within the Autistic community, IFL is widely preferred and often consciously chosen, because Autism is considered an identity. That is, you’d say “Autistic person” instead of “person with autism.” In this way, being autistic is regarded as a facet of one’s identity – a neurological state of being – and not as a source of shame.
  • A similar line of thinking is followed by many who are Deaf. While some people identify only as little-“d” deaf (referring to a physical state of being), others capitalize the “D” to indicate being Deaf as a culture and identity. So, using the principles of IFL, one would say “d/Deaf person.
  • These same concepts do not apply when it comes to the use of a term strictly for its medical definition. For instance, it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.” Here, you’re referring to a person by diagnosis, which is perceived as dehumanizing.
  • Likewise when it comes to mobility equipment. It’s completely inappropriate to call someone something such as “wheelchair person.” (Sadly, I’ve been called this several times.) Instead, you would say “wheelchair user.”

On the whole, IFL isn’t actually as complicated as it seems, and its very existence is proof that language is never “one-size-fits-all.” But so many people – usually people who are not disabled – continue to demand use of PFL and correct others who do not use it. I notice this happening constantly. For instance, I’ll read articles focused on crucial issues affecting the disability community, and then I’ll read comments saying things like “great article, but how come you didn’t use person-first language?” It makes me wonder if people really think that the particulars of language are bigger than the true injustices or victories experienced by the disability community.

Moreover, if you are staunchly in the camp of PFL, I urge you to consider why constant insistence that PFL should be used may actually make some people feel disrespected, as though you are denying their identity. It is no one’s place to dictate what type of language rules a person should use, let alone what the entire disability community should use. If I encounter a person who prefers PFL, I will call them a “person with a disability.” If I encounter a person who prefers IFL, I will call them a “disabled person.” And if they have no preference, I may switch back and forth. I also switch back and forth in my writing from time to time so as to acknowledge both ways of identifying. This, I believe, is among the truest forms of disability acceptance.

Ultimately, the key is to ask, whenever possible, how a person chooses to identify, rather than making assumptions or imposing your own beliefs. Each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect. I, who proudly chooses identity-first language and identifies as a disabled woman, am worthy of respect. Being who you choose to be – who you are – is something no language rule should ever take away.

Photo Credit: Michael W. May/Flickr

Do you prefer person-first or identity-first language? Do you think one is better than the other? Tell us in the comments section below.

Inclusion Spotlight #005- Zeno Mountain Farm

Picture a camp where friends gather together to make movies and enjoy friendship, “friend” really proving the only role which matters. As opposed to say more traditional camps with the distinctions “counselor” and “camper.” This place you picture exists and goes by the name Zeno Mountain Farm.

However, there likely remain differences between your vision and the real Zeno Mountain Farm. For instance, you probably did not picture campers with Down syndrome, cerebral palsy, and Williams syndrome amongst other disabilities. Impressed by the camp’s loving and accepting environment Think Inclusive reached out to Zeno Mountain Farm co-founder Will Halby. Below you can read highlights from our conversation courtesy our latest “Inclusion Spotlight.”

Zeno Mountain Farm campers film a kickball scene for their movie Bulletproof Jackson

Zeno Mountain Farm campers take a break from filming a kickball scene for their movie Bulletproof Jackson so they can take a group picture.

On becoming interested in the disability community: “I love the culture of being around people that have unique(ness) and aren’t interested in being germane. Those people happen to have disabilities, a lot of them.”

Zeno Mountain Farm’s origins: “My brother (Peter Halby) and I had been working (with) adaptive sports organizations. We both taught school and I was in Los Angeles so filmmaking was in our mana. It just seemed like a cool idea to bring some people we met through these various programs out to Los Angeles and make a movie, just as a fun project to do with a group of friends. So we had a little fundraiser and ran one. It was just everyone had a ton of fun and we started growing from there.”

Developing the camp’s inclusive attitude: “Even the term ‘inclusiveness’ is exclusive if you think. If we’re an inclusive environment you’re suggesting that there are two groups of people and one group is including the other group. We just say everybody at camp, all of us, have needs and some of us take care to fulfill those needs. We have to be pragmatic about what those needs are and we have to be safe.”

Being beyond the word “inclusion”: “I don’t know if we’re beyond that, we just don’t even talk in those terms. We don’t even talk about disability very much at camp… We talk about Bobby, and Zach and Pete and Katie and George and Steve because we know everybody. We know what their needs are and we know what they want to do and what they’re striving for.”

“If somebody asked me, if they’re coming to camp and they’ve never been to camp before and their going to be in a cabin with Alec or something and they asked me what Alec is like I’ll explain ‘Oh Alec is really fun. This is how old he is and these are the things he likes.’ I probably wouldn’t mention he has Down syndrome or he even has a disability and that’s not a part of our philosophy. That’s just who we’ve become.”

Society’s tendency to focus more on a diagnosis than person: “A diagnosis is bull. I know probably 500 people who have been diagnosed with Down syndrome and they are all very different from each other. They’re more different from each other then most of me and my friends who don’t have Down syndrome.”

“I think we as a society we categorize people for our own convenience. We categorize people as having Down syndrome or autism or spinal cord injury or whatever. Then the biggest crime is we put them all, all in one huge category for our own convenience. I don’t even know how to describe how detrimental that is to people. It holds people so small. It’s the reason someone will go up to someone in a wheelchair and talk to them like their deaf or cognitively challenged.”

Goals for the camp: “When people want to come to camp and they feel like they’re going to ‘help out’ traditionally what would be a counselor role we discourage them from thinking that way. We want everybody to come to camp for the same reason, which is to be a part of a community, create great art, to make new friends, and to maintain those friendships.”

Story or stories embodying Zeno’s spirit: “Do you know Damien Rice? He is a very famous singer, big superstar singer. He came to camp once to sing us songs. It’s funny I think Damien just came ‘Oh, I’m going to do this thing’ and then he never left. He stayed for two weeks. I think what happened was he came to camp thinking it was going to be one thing and ended up staying at camp and just sort of joining us for two weeks because it flipped a whole lot of switches in him.”

“Very often after a screening of a movie or a play people will come up to me and they’ll say ‘That was so much better than I thought it was going to be which I always thought was an interesting way of them saying they had a set of expectations that were shattered and that their minds have been changed in that evening.”

Now due to the familial atmosphere Zeno Mountain Farm established, openings to join the camp occur on a limited basis. You can inquire Will about such opportunities or seek advice on starting your own non-profit similar to Zeno Mountain Farm. Send him an email to will@zenomountainfarm.org. To learn more about the camp visit their website.

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