Thinking In A Different Box

Posted by Dr. Rachel C. Morgan on 12/18/2019

We currently live in a society that easily gets offended and/or interprets other’s actions as hurtful when that was not the intent at all.  My daughter, Paige, had such an experience when she was in second grade on the playground.  Some of her friends were playing what Paige thought was a “pretend preschool” game at recess.  She got excited and went over to join them, asking them what they were playing.  The response made Paige stop in her tracks, they stated they were playing “school for autism kids”.  You see, Paige has an older brother, Adam, with autism and this was very hurtful to her.  She ran away crying and held in her anger and hurt until she got home that day.  Paige filled me in on what happened and how angry she was, she wanted me to come in and talk to her friends to fix the problem. I explained to Paige that I truly didn’t think that her friends were trying to be mean or hurtful, they just didn’t understand and needed some education on what autism was.  I let her know I could come in and educate them but thought it would be more meaningful for her to educate her peers and to share her experiences with her brother with her friends.  

I called the counselor up at the school and requested that she support Paige in talking to her classmates about autism.  I can’t always be there and wanted to teach my daughter how to advocate for herself and her brother in a positive way.  The counselor thought this was a good idea and suggested we get a book that Paige could use to read to the class about autism and then answer any questions her classmates may have.  

I went to the bookstore and found a great kid’s book that a young lady had written about her and her younger brother that had autism.  Paige read it to all the second-grade classes the next day and answered all their great questions.  When she arrived home, Paige was in a great mood and felt like it went well.  She even expressed how interested everyone was about autism and learning what they could do at school to help their friends. There was one issue she had with the book, it was about home life and all her friends wanted to know how they could help their peers with autism at school.  We looked for a book about how to help your friend with autism at school and couldn’t find one.  Paige then informed me that since there wasn’t a book about how to include your friend with autism at school, that I needed to write a book.  

Although I had no interest in writing a kid’s book, how could I say no to my daughter?  I made her a deal, she had to write the introduction.  Paige wasted no time; she had the introduction written that same day.  I got to work and Building Forever Friendships – Strategies to Help Your Friend with Autism or Other Special Needs at School was published in 2015 by Rose Dog Books.  

The purpose of the book is to be embedded in the classroom curriculum.  To provide an opportunity to engage the entire class in a discussion about strategies and tips for inclusion.  The book is full of scenarios that take place throughout the school day with helpful tips provided, encouraging students to come up with their own strategies.  The book does not tell students what to do, rather provides possible solutions and a format to safely share their own positive interactions with others, promoting inclusion for all.  

Inclusion is a process, not a placement option.  This book provides a platform for everyone to contribute to the conversation while educating the community.  We must teach kids that it’s ok to have questions and be curious about those that learn and communicate differently.  Focusing on acceptance and understanding of other differences is a key factor in making inclusion possible.  Setting up natural enriching learning opportunities for all learners in a safe climate is essential for everyone to grow in confidence and self-determination.  It’s important to remember that we all need support, it looks different for each person and that’s ok.

“Through firsthand experience and collaboration with her daughter, Rachel Morgan has written a child-centered, respectful, and supportive social-relationship story and guide, Building Forever Friendships.  Using storytelling and helpful tips, social relationship aspects are addressed for students who have autism and social-relationship support needs.  Common sense and respect rule in this helpful guide.”

-         Patrick Schwarz, Ph.D., professor, Diversity in Learning and Teaching Program, author, educational consultant, Teacher Preparation National Louis University, Chicago

“Building Forever Friendships is a must-read guide for professionals caring for and parents raising children with autism.  Rachel Morgan has the uncanny ability to address sensitive issues that arise in the home, school, and community for children on the spectrum and their typical peers.  Through beautiful and masterful storytelling, she helps all of us have a better understanding of why inclusion and acceptance are not just lofty, but achievable, goals for which we all can aspire.”

-         Areva Martin, Esq., Harvard-educated attorney, co-founder, and president of the nonprofit Special Need Network, Inc., nationally recognized legal authority and expert on autism, and New York Times best-selling author of The Everyday Advocate

www.adamorgan.org

Posted by Dr. Rachel C. Morgan  - 12/18/2019

In today’s virtual world, things are moving so incredibly fast with an overload of information at our fingertips.  It has increasingly become more and more difficult to form one’s own beliefs, values, and attitudes towards something or someone.  We are bombarded and surrounded every minute with so much information. What information can we trust? Who are the experts?  How do we challenge our bias without abandoning our beliefs and values?  

A person’s lived experience is vital to forming one’s beliefs, values, and attitudes.  Information is best received from trusted resources that have shown a proven track record.  We all form biases and beliefs throughout our lives and as we add new experiences, our biases and beliefs should change.  The question is, do you have an open mind to other perspectives?  Do you allow yourself to see things from another’s point of view?  

There is much controversy these days with regards to non-speaking students with autism.  For so many self-advocates, parents, educators, and support agencies, there is an overwhelming amount of contradictory information and research to muddle through.  Who do we believe?  What information can be trusted?  Many people fall back on their current bias because it is comfortable.  They will specifically look for and interpret all information according to their current belief system, which is called confirmation bias.  Others are so dedicated to their beliefs, called belief perseverance, that they hold on to ideas and theories even though there is definitive, convincing evidence to prove otherwise.  As you can see, there is a distinct difference between confirmation bias and belief perseverance.  Our belief systems are not only formed based on information but with much emotion on how we feel about ourselves and others.  One’s unshaken belief can be positive in many ways; however, it can also form barriers preventing many people from choosing the right decisions.  This lack of insight impacts the relationships you are forming all around you.    

Having a son who communicates utilizing supported typing, we have experienced both confirmation bias and belief perseverance.  We have also had many others that do believe and embrace the way he prefers to communicate.  Many people have asked me, how do you get others to “buy into” supported typing?  My answer is simple, I don’t.  I can’t make someone believe in something they don’t, nor do I want to.  I have learned that the only behavior you can change is your own.  

I chose to take another path; to inspire and influence a different way of thinking.  It’s not about thinking outside the box; it’s about thinking in a whole different one. You can’t do different until you think different.  For example, when someone sees how my son, Adam, types with support, the questions and comments start coming at me.  How come you have your hand under his?  Your looking at the screen, why isn’t he?  There is no way that is him typing, you are typing for him.  

Instead of defending how Adam communicates or presenting current research, I take a different tactic.  I start asking them questions.  How do you type?  Do you look at your hands?  The screen? Do you use wrist support?  For me, I look at the screen when I type, not at my hands.  Why does my son have to look at his hands for someone to believe it’s him typing?  He “checks in” when he makes a mistake to hit the back button, just as many others do.  Many people use wrist support in front of their keyboard.  Why is my “wrist support” any different than that?  You see, when you really start asking and answering how we all type, it is not that different at all.  When I proposed all these questions to a skeptical administrator, it dawned on him that high schoolers can text on their phones while still in their pockets.  When he realized this, he said, “why should I have a different expectation for Adam?  I shouldn’t.”  It’s not about changing others' minds but rather challenging their current biases and beliefs.  Whether that interaction with you changes their bias or belief is completely under their control, not yours.

The biggest barrier for a true inclusive education for Adam had nothing to do with modifications, adaptations, therapies, or a lack of capabilities.  The biggest barrier was due to a lack of belief, value, & attitude towards my son, by others.  Once we were able to break down that barrier and educate those that support Adam, success came effortlessly.  There was reciprocity in the learning process and mutual respect.  Adam is now a Senior in high school with a 3.3 GPA, was the first non-speaking student to take the ACT in his school district, and is college-bound.  The real experts in the field of autism are those that have autism.  Adam has started a YouTube Channel called Tech Talk With Adam Morgan, to help educate others from his perspective.  Listening takes more than just hearing spoken words; listen to what is not being said, to body language, gestures, behaviors, etc.            

You can always find information that is contradictory to what you believe; it’s the emotional connection to one’s belief that is the key to influencing change.  When faced with new information or a different point of view, have an open mind and listen. Ask yourself the following questions. How will this new perspective or point of view impact me personally?  How will it affect future relationships?  Am I only looking for and interpreting information that only fits my current belief system?  Am I rejecting this new information or point of view because I can’t let go of my current beliefs?  Ultimately, it’s not about being right, but doing the right thing.  It’s about building trusting relationships and presuming competence.  When there is trust and mutual respect, then taking a risk to learn something new is inevitable.  Don’t give up five minutes before the miracle!  

Best,

Dr. Rachel C. Morgan

www.adamorgan.org

To Whom It May Concern:

“Count to 5” are the instructions. That’s all you must do. Your teacher sits in front of you with a clipboard and a judgmental look on her face, knowing as a 6th grader you can’t count to 5. Well, you can but you can’t speak. You know the quadratic formula and have memorized every movie you have ever seen in 7 different languages. You are non-speaking, so people think you don’t even know how to read pictures. Your teacher shakes her head and writes on her board. Frustrated, you start to cry and panic, you are dubbed disruptive, and taken out of class. This is the life of a non- speaking student. This was my brother’s life for 12 long years as well as mine. I had to sit by and watch as he would cry every time, we pulled up in the school parking lot. No voice in his education, he would go again and again to school and attempt to count to 5. Even though my family knew he could do so much more. Something had to change.  Some might say that kids with special needs don’t know age level curriculum or act out too much to be in a general education setting. I can assure you that they do know the curriculum and should have access to this material as well as a chance to receive a high school diploma. Inclusive education is “holding high expectations and guaranteeing them (special needs kids) access to not only the general education classroom but also age level curriculum to the greatest extent is best practice” (NCIE,2011).

Inclusive education is the best practice by the Nation Center on Inclusive Education after 30 years of research, yet we still seclude kids with special needs. This is because each student is diagnosed with a disability at a young age which defines them for the rest of their lives. Dr. Rachel Morgan, an expert in the special education field and a mom of someone with a disability says ”A decision regarding placement for my son was based on his diagnosis and prior to an initial assessment ...A pre-judgment was made based on communication and learning differences…”(Morgan,pg.5). At the age of 3, kids with special needs are judged and sent away for the rest of their educational career. My brother and my mom had to fight for his education. They had to prove that he was “smart” enough to be in a general classroom like any other kid. This battle is still ongoing, but should it be one that families have to fight? The Education for All Handicapped Children Act of 1975 states, “The ECSE program, by law, has to provide the least restrictive environment for kids with special needs” (ECSE,1975). Yet, over 70% of children receiving special education services were receiving most of their services outside of the regular education setting (Morgan, 2017, pg.4).

In personal experience, the reason this law isn’t followed is that it is up for interpretation. People like my brother who are non-speaking are assumed to know little to nothing because they can’t physically speak what they know. This automatically puts him into a segregated classroom with little to no access to age level curriculum. IEP’s (Individualized Education Program) are a huge part of this issue as well. The development of IEP’s have its own concerns with lack of support from administration and staff along with the IEP being perceived as extra meaningless paperwork with unreasonable demands (Gallaher &Desimone,1995). IEP’s are super important to a child's success. I have sat in a few of my brothers IEP’s and as a team, my parents and staff work together to help my brother achieve his goals. It can be done, that 70% statistic can be made 0%. All that is needed is a change in attitudes and beliefs in these students.

It is important for the administration and family to talk and work together collaboratively so that more non-speaking kids can have the opportunity my brother is blessed with having. Some say that kids with special needs don’t know the curriculum or act out in general education classrooms, so they should just stay segregated. Some medical and psychological professionals say that these behaviors are embedded in their personality. While these professionals tell you that, what they don’t tell you is that they are using this excuse to make money off families who have children with disabilities. “The U.S. mindset shifted after World War II to more of a service economy where special education was seen as a way to make money” (Sailor, 2016 pg.4). This idea has brought on this mentality that more resources, therapy, and professionals are the best option and will “cure” these kids. When in reality, these people just want to waste the family’s money. They don’t need to be cured or fixed. If they are acting up it is because they are frustrated that the people around them see them as broken and something needed to be made right in the first place. How would you feel if someone looked at you like a broken toy with no brain or emotion, just a problem waiting to be solved? With no voice to say anything differently, you just sit there as people say things about you in front of your face like you aren’t there. I know I would be frustrated too. Right now, there is a lot broken in this system. It sets kids like my brother up to fail. Every kid with special needs, verbal or non-verbal, should have access to age-level curriculum and be able to have a high school diploma.

My brother is 18 years old and is part of the class of 2020. He will walk across that stage with a cap and gown and I, along with my family, will be there cheering him on the whole way. We have fought for him to have this, but we shouldn’t have to. My brother wrote a book with other non-speaking adults who talk about their experience. My brother Adam writes, “I am very intelligent…. But showing people that is near impossible...I am trapped inside a body that is broken, my only way of showing you who I really am is through my iPad; it is my voice “(Morgan, pg.49). We aren’t the only ones who have a non-speaking student graduate, getting a real high school diploma. My brother is not an exception but an example, the rule to be followed. I hope that things do change because there are kids who still need help to find their voice. Right now, 2 levels down from this room in a tiny corner of our school, kids are sitting there staring at those same numbers 1-5, internally crying for help. They look up and wish they are sitting in the seats we are and have the same privileges we take for granted every day. These are our fellow classmates, so what are we going to do about it? We need to make it so that one day, they can listen to their families cheer their name as they walk across that stage, diploma in hand, ready to change the world.

Sincerely,

Paige C. Morgan (Sister of Adam Morgan & Sophomore in High School)

Work Cited

Gallagher,J.,& Desimone,L. Topics in Early Childhood Special Education,(1975).

Morgan, Adam J. “My Choice, My Voice, My Right.” Leaders Around Autobiographies of Autistics Who Type,Point,& Spell to Communicate, edited by Edlyn Vallejo Pena, pp. 1–186.

Morgan, Rachel C. “Inclusive Education for Preschool Learners with Autism: A Program Evaluation.” Lindenwood University, Pro Quest, 2017, pp. 1–206.