Reading Is for Everyone

I have always loved to read.

As a child, I would organize and categorize my books, planning the next 5 books to read. When I was in fourth grade, I was introduced to mysteries, a genre that continues to be a favorite today.

I also remember the years when I was assigned books to read, many of which I would not have selected on my own. Some of the titles became favorites while others were a challenge to finish. Whether or not I enjoyed the book, reading the same title as my classmates created a bond through the shared experience,  discussions, and opinions.

Now that I am an adult, I continue to connect with friends in book clubs or during long discussions about favorite authors, series, or titles. We will talk for hours about the differences between a book and the movie or show,  analyzing the casting, storyline, and actors’ portrayal of characters. We connect over non-fiction reading as well, comparing stories in the news, magazine articles, and research reports. Political discussions are informed by the opinion of others on social media, articles, web pages, or blogs.

Reading connects us to our world, our neighbors, and the possibilities for our future. It is a powerful use of language and can transport us to the castles of faraway lands, the bottom of the ocean, a magical land of animals, or to the center of a football game.

Reading is also natural. Small children begin reading, recognizing their favorite restaurants, movies, or television shows by the mascot or logo. The pairing of a picture with a word leads to the eventual recognition of the word without any pictures. As formal instruction in reading begins, most children continue the learning that has occurred in the environment and applies it to books, magazines, worksheets, and notes or letters.

Reading is the foundation of everything: communication, learning, connecting, adventure, employment, and so on.  In short, reading is the most essential life skill.

Students with cognitive disabilities benefit from participation in rich reading instruction. They will learn the skills and share in the conversations and connections with peers that come from the shared experience. They gain skills to access new information, derive an option, and understand the perspective of others.

True, all adults don’t read with the same fluency or speed. However, we know from historical research that reading increases an individual’s employment opportunities or salary. Reading increases the choice to attend a college program or pursue a chosen career. Reading protects an individual from fraud or misinformation. Reading increases the likelihood of freedom as an adult to make their own decisions.

We must ensure that all students are allowed to become a reader. Prioritizing reading in the student’s daily schedule will serve to increase their success as an adult. The best thing we can do for our youth is to make sure they know, reading is for everyone.

Home of the Brave

Imagine a day when you spilled coffee on the front of your shirt, jammed the copy machine, lost internet access, made several mistakes at work, accidentally insulted a variety of people, burnt dinner, and washed a red shirt with your white clothes. Would you consider the day a disaster? Maybe even a failure?  I would.  Bedtime would arrive with the promise of a better tomorrow. But what if tomorrow wasn’t better?  Nor the next day…nor the next…or the next…

How many times will you try something before you get angry, frustrated, or quit? How many times will you fail at your task or goal before you give up, or become so angry and frustrated that you no longer believe tomorrow is a better day? I don’t think I would even make it a full month.

Now imagine struggling with everything including getting dressed, eating breakfast, telling someone you love them or, reading a simple sentence in a favorite book. These are the everyday struggles of students with significant cognitive disabilities or complex needs. The students that I have the privileged of teaching.

My students arrived each morning with smiles, excitement, and anticipation of the instruction and opportunities for success. They struggled to read, write, communicate, make friends, count, add, or carry the cafeteria tray without spilling. It would be understandable if they felt like the day was a series of failures and a reason to quit. But, they never stopped trying.

They could easily quit trying. Families and teachers would understand. Afterall, they have tried for years to do something that their peers could do after only a couple of tries. 

They could be angry and frustrated. We would empathize with the struggle.

But they don’t.

Sure, they get frustrated and stop trying for a short time, but they always come back ready to try again.  They try again, and again. Maybe this will be the time they succeed? Or maybe this time? Today could be the day they write their name by themselves, answer a question in class correctly, read a sentence, make a friend, or even walk to class by themselves. Maybe today.

I am humbled by the opportunity to teach students with disabilities. But, the truth is, I learned more than I taught. And one thing I now know to be undeniably true. Individuals with significant cognitive disabilities or complex needs are the bravest people I have ever met or could hope to meet. 

Adult Decision-Making

One of my goals for the blog is to spotlight tools, resources, or websites designed to empower individuals with disabilities as valuable members of our community. The first one I want to feature is a critical resource for everyone who knows and loves someone with a disability.

The Tennessee Center for Decision Making Support website will guide and inform individuals, families, and educators regarding the spectrum of legal options for individuals with disabilities as they reach the age of an adult. The focus is on balancing the need to ensure they become as independent as possible while still having adequate support. But the site is more than that. It is a guide to helping ensure we provide every opportunity for decisions, both good and bad ones, that most of us take for granted.

Adulting is hard, for anyone. As an adult, I make hundreds of thousands of decisions. For big decisions I often will research information or advice from experts, family, or friends, knowing the decision is mine to make. I have made some really good decisions, like starting this blog. I also made some really bad decisions with financial, emotional, or other consequences. In both situations, I was allowed to make the decision and learn from each and every mistake along the way.

 “I learn from my mistakes. It’s a very painful way to learn, but without pain, the old saying is, there’s no gain.” -Johnny Cash

Learning to make a choice is a refined skill requiring lots of practice. Children typically start practicing choice making as young toddlers when they choose a toy to play with, a favorite snack, or what to drink. As they grow they asl grow in their independence making increasingly complex choices and learning how to handle the consequences.

Individuals with cognitive disabilities need to practice making choices as well. By doing so, they will be ready for the difficult and natural experience of adulthood. Unfortunately, for many, the first time we ask them to make a choice with unlimited options is when we ask them about where they want to work or live.

The Tennessee Center for Decision Making Support can help. It is a wonderful resource for educators, family members, and friends. The site can guide the team through meaningful conversations driven by the individual with the disability. Together the team can leverage the individual’s strengths to build independence and plan for the support needed in other areas.  

Regardless of where you live, I encourage you to visit the Tennessee Center for Decision Making Support and begin your journey to informed empowerment.

Seeing Is Believing

They say that hindsight is 20/20, perhaps they meant, 2020.

2020 will always be remembered as the year of the pandemic, changing our entire world in what felt like a single moment. As state governors declared schools closed, we all naively believed that within two weeks we would return to normal. Instead, the closures continued, offices moved from skyscrapers to kitchen tables, and the longstanding inequities in each community were exposed.

School districts and community leaders could no longer deny the impact of inequity on the most vulnerable citizens: children. Teachers work tirelessly to create equity in their classroom, but those strategies did not translate in a virtual, distance learning environment. Some students went home to their own computer, complete with microphone, camera. They attended class uninterrupted  from their private bedroom or an extra room in the home now referred to as the “classroom.” Other students went home to shared spaces that inhibited concentration and focus sharing a single smart phone and rationing data minutes to attend the most essential classer. Some students went home to parents who now worked from home while others had parents who were still working and now needed the children to care for and support each other throughout the day because daycare centers were closed.

Inequity occurred across the country and affected students of all ages. Students dropped out of college, no longer able to adequately access class, or because they needed to work multiple jobs to help their family pay basic expenses of rent, food, and utilities. Cries were heard across the country to open childcare so essential workers could remain working. Children were not able to visit parents in assistive or senior living to ensure their health or safety.

Individuals with disabilities have lived with the struggles of inequitable access, bias, prejudice, and unnecessary obstacles every day of their lives.

The pandemic made it increasingly more difficult for individuals with disabilities. Home care workers were fearful. Resources and food were harder to access. Essential medical treatment, medications, and personal protective equipment were allocated to essential workers and the “able” or “healthy.” Family members or support personnel were no longer allowed to accompany them as they entered hospitals or doctors’ offices.

Living through the pandemic was so hard, but we can look at it as a learning experience. We can no longer hide from inequity. We can no longer excuse inequity. We can no longer close our eyes to the suffering of the members of our community. We saw it all in 20/20 clarity.

Moving forward we need to keep the clarity of hindsight and use it as a spotlight of focus. We need to find the solutions that not only create an opportunity for equity but ensure it. Can we ensure each family has the same space, materials, wealth, or technology? No. Can we ensure that a person can access the resources they need and have the opportunity to earn the life they want? Absolutely!

I thank 2020 for the clear vision of a future for everyone. We do not need to return to the past. Together, we can believe in the ideals of equity and make it our reality today.

Making a Case for More

There are two very simple principles at the heart of instructional institutions:

  1. Teachers teach, and
  2. Students learn.

While yes, it is really that simple, it is also very complicated. What to teach?  When to teach? How to teach? These are just a few of the questions guided by a mountain of research and endless political pandering. Likewise, what the student should learn, by when, and how we know they learned it are equally compelling discussions sparking endless debates.

State standards were written and adopted with the good intention of ending the debate, clarifying for everyone what should be taught or learned and by when. Standards are a target. Educators, families, and students can measure their progress toward the target and make adjustments to help accelerate or change course as needed. As the student progresses to the next grade, the target is moved, challenging the student and teacher to another year of growth.

The ability to measure a student’s journey toward the grade-level target has led to the realization that some students will simply not make it to the goal before it is moved again. The gap between the student’s current skills and the target is increasing, not decreasing with each year, creating a feeling of inadequacy and hopelessness.

This brings me to the “Case of More.” Students with complex disabilities including a cognitive disability are often described as those learning significantly less than their peers, mastering less, or achieving less. I dispute these statements as false. In fact, I am arguing that the students actually learn more than their classmates with no disabilities.

When a student with a cognitive disability or complex needs makes a step forward in the curriculum, they have effectively integrated and executed multiple new skills and concepts learned. For instance, while learning a simple academic skill, such as how to add two numbers, the student has also had to learn the following:

  • communicating their knowledge,
  • asking questions,
  • learning new vocabulary,
  • giving focus and attention to a topic or individual for an extended period,
  • leveraging mastered motor skills to maintain posture, safe body placement, and minimize sensory disruption,
  • social engagement skills,
  • emotional regulation,
  • sorting of important and not important stimuli,
  • reducing the focus on background noise, and
  • so much more.

Yes, it is true these skills are necessary for everyone to learn. But, if we get really honest, for most of us, these are skills we possess so automatically that they occur as naturally as breathing. There may be one or two we are refining, but in general, they are natural. In fact, when we use terms like “significant disability” or “complex needs,” we are actually trying to convey in a few words, that this is a student who will need all of these skills in addition to content.

“In addition”…aha, that means more, and so, again, I will say it but this time in a short, succinct way:

Students with complex needs learn more.

And so, I ask you, would you agree that indeed, students with complex needs learn more? And wouldn’t you also agree, we need to applaud their incredible tenacity, integration of skills, and accomplishments, not in the name of empathy, but in awe.

Students with significant cognitive disabilities or complex needs are a challenge to teach, because they challenge us to learn a lot. And yet, we are typically not learning even half as much as they do each day. It is for this reason that I am in awe of their courage, grace, knowledge, and skills. And, I am constantly humbled by their dedication to continued learning every day.

Invisible Inclusion

Inclusion is the dream, the goal, the hope.

To understand the drive for inclusion, we must first understand the past.

Less than 50 years ago, a child with a developmental disability, or cognitive disability, was typically shepherded away to a “home”, which is a nice way of saying institution. The children traditionally spent their whole life there hidden from society, and kept out of sight.

Can you imagine having to give your beautiful new baby to a “home?” Many parents couldn’t, and, as a result, they refused to send their children. Instead, the parents chose to become their teacher, therapist, and, ultimately, their advocate. As they continued to seek more traditional opportunites for their child, they challenged schools to open their doors and accept their child as a student.

Parents’ requests were eventually heard and change occurred. Schools offered programs for students with disabilities, some even on the school campus. Space for the students was found in basements, boiler rooms, back hallways, or other secluded or underutilized spaces.

The programs offered by schools were still separate, and not equal. Families, educators, and advocates together encouraged continued changes within schools, seeking equal experiences for students with cognitive disabilities including opportunities to make friends, play on the playgrounds, eat in the cafeteria, learn alongside their non-disabled peers, and in short, be seen.

School transformation continued and students with disabilities were more often seen throughout the school buildings.

This has been a long journey, and today, you will find many students with developmental disabilities sitting in the general education classroom.  Their special education supports primarily occur within the general education classroom to minimize removal.

But, is this inclusion? I will argue no, in many cases the student with cognitive disabilities and/or complex needs is moved into the general education classroom along with their paraprofessional. The instruction throughout the day consists of separate, not equal materials. The para and student interacting and doing their own things, often with little to no connection to the general education instruction.

 I have been guilty of using this model myself, thinking it was inclusion and therefore, the right thing to do. Looking back I realize that all I did was move the special education classroom. The student was still not included.

You see, it took time to understand, truly understand, inclusion is not a setting or a place. When done correctly, inclusion is invisible.

Inclusion is the belief that the student is as much a learner as every other student. Inclusion is teaching challenging concepts because you know the student can and will learn. Inclusion is encouraging dreams, goals, and reaching for more. Inclusion is the right to choose your friends. Inclusion is the opportunity to debate and refuse. Inclusion is being held to high expectations.

In short, inclusion is the belief that all students are students. When this belief is communicated in action, then we don’t simply debate geography, or the location of the student’s desk when creating the schedule. Instead the plan focuses on learning, intervention, and the student’s work toward obtaining their postsecondary goals.

I will know we have finally achieved inclusion when we no longer need to label it, because, we simply believe that all students are, well… students.

Hello!

I am so excited to begin a new journey with you. I want to begin by telling you a little about what to expect here.

I am driven by a simple mission: Empower others and change our world together.

My life’s work is focused on empowering individuals with complex disabilities and significant cognitive impairments. I taught in public schools for over 21 years working to raise student and family expectations. Like many, 2020 taught me a great deal, including how much work is still needed to ensuring all members of our communities are heard and valued for their gifts, beliefs, and talents.

The pandemic was devastating, difficult, and isolating. But it also brings us the unique opportunity to define “normal” for our communities. I want to seize this moment, changing perspective to one of possibility, hope, and shared expectations. I genuinely believe that every member of our community can be successful in their career, relationships, and life. I welcome you to this work as we take an honest look at obstacles and challenges. Sometimes these discussions will be uncomfortable, and that is okay. It is only when we risk honesty that we can begin to truly understand each other’s perspectives.

You will come to know me through each post, and, I hope I get to know a bit about each of you too. I know I can learn from each of you.

Alison

This content is a reflection of the individual author and cannot be attributed to any organization, agency, or employer.