Day 22: Acceptance is an Open Mind

In this picture, our server on the cruise ship is helping cut Ben's chicken.   This is a great example of someone who took service to the next level by forming a human connection with Ben.

I work in the field of education, and so every day I get to see learning happening firsthand.

One of my many roles is that of a change agent.  When change happens at our school, whether it is trying out new teaching techniques or learning a whole new curriculum, it’s my job to help teachers implement it in their classrooms.

I have learned firsthand that change isn’t easy and that it takes time.

Change is hard whether we’re teachers who are implementing a new curriculum or simply adults trying to understand and accept people who act and think differently than we do.

I’ve been called Pollyanna before. 

I’ve been called the eternal optimist, because I do believe that people generally make decisions based on what they believe is the right thing to do.

However, sometimes things get in the way.

It may be lack of education on a topic.

It may be lack of supports.

It may be fear of change or the unknown.

Whatever barrier prevents this change from occurring, I believe that open and honest dialogue can help us to move in the right direction.

I think that most people like to believe that they have an open mind.

Most people believe that they are tolerant and accepting of others.

However, the reality is that we still have such a long way to go in this world towards creating lasting change for those who do not fit the status quo.

So why is there such a gap between our beliefs (about tolerance, inclusion, acceptance, diversity….) and the reality of the current situation?

I believe a big reason for this gap exists in our minds.

We think we understand, so we don’t truly listen.

We think we are accepting, so we don’t look truly see those who are left marginalized.

We think we want change, until advocating for it becomes inconvenient or hard or unpopular.

We see the walls in our way- and so rather than think creatively, we stop trying to problem solve.

And so- where do we begin?

We begin with an open mind.

We begin by truly listening.  We listen to all points of view and weigh what we are hearing against our current reality.

We listen with the intent to understand- not waiting impatiently for our turn to speak- not thinking that we know better.

We seek out the experts in the field and listen to them.  We remember that the experts aren’t necessarily those with the advanced degrees but rather those who have lived and experienced these matters firsthand.

We humble ourselves to realize that we don’t have all the answers.

We allow ourselves to be in a position of vulnerability- in order to learn.

We admit when we need help and seek it in order to grow.

We do these things because we know that when we draw lines in the sand, we are causing division rather than growth.

We know that there is a time to stand our ground on what we know is right, but we do this with the understanding that fighting these battles can come at a steep price.

And so first we invite conversations that will lead to positive change.

We watch, we learn, and we listen.

Always with an open mind.

Day 7: Acceptance is Inclusive

This is still one of my favorite pictures of Ben with his best friend at school.

On the eve of my report card conference with Ben’s teacher and wonderful team of support people who work with him, I thought it only appropriate to write about the importance of inclusion and how inclusion leads to acceptance.  We have been fortunate to find a school that embraces the inclusion model and works hard to make inclusion work.  There are many different types of classroom settings that are designed for different purposes.  Inclusion is one such setting.  While an inclusion classroom might not be the best placement for every learner, I do believe that the spirit of inclusion in our society is an important and necessary goal- regardless of the severity of need of the individual.

First, I want to start by saying that inclusion is not easy.  An inclusion classroom is more than just a room full of children with disabilities mixed in with their “typically developing” peers.  As Jess from Diary of a Mom explains,  “Inclusion is a process. Day to day, moment to moment – inclusion takes thought and planning and effort. It takes a mindset of hope and possibility. It takes belief in the intrinsic value and unlimited potential of each and every human being. It takes determination and tenacity. It takes compassion and empathy.  It takes the understanding that to truly come together, we must learn not just to tolerate, but to CELEBRATE our differences. There is far more than beauty in our diversity – there is incredible strength.”

But how do we teach our children not just to accept but to celebrate differences?  This seems great in theory but can become tricky in the real world.  There are so many factors at play.

It is human nature to fear what we do not understand.  Not only children but often adults have little experience with autism, Down’s Syndrome, Tourette’s, etc.  I have a friend who has a son with Down’s Syndrome, and she once told me that she tells his teachers every year (and I’m paraphrasing here based on my memory of our conversation), “I don’t want you to feel intimidated by my son.  I don’t want you to feel overwhelmed by his diagnosis and his needs.  Never lose sight of the fact that he first and foremost a little boy.  And I am here to support you all the way.” 

I think it’s important to acknowledge that challenges will come up as we work to support an inclusive environment, not just in the classroom but also in our community.  People still don’t know how to react when they observe behaviors outside their comfort zones.  Recently I was at an Easter egg hunt for autistic children and their families.  The egg hunt was due to start at 11:45 am.  It was 11:50 am and there were still no signs of the hunt beginning.   A little boy about eight years old walked directly up to me, took my wrist in his hand and pointed to my watch as he said, “The time is 11:50.  We are now five minutes behind schedule.  The schedule said that the egg hunt was due to start at 11:45 am.”  I calmly looked at the boy and said, “You’re correct, but I’m not the one in charge of starting this event.  You need to speak to the person in charge, and she is standing over there.”  Instantly, the boy dropped my arm and walked over to the event coordinator.  I wasn’t put off at all by the boy’s actions because I understood the situation and his needs.  How many others in our society would have known how to respond? 

When Ben reaches adulthood, I want him to live in a world that accepts and embraces differences.  In order to do this, it is our responsibility as adults to model behaviors of respect.  We must always remember that children are watching our actions more than they are listening to our words.  As Jess from “Diary of a Mom” says, “If they see us tease, they will tease. We must rethink the easy jokes about those who are different from us. We must reconsider the words that can so easily fall off our tongues. “Retarded” has become ubiquitous, nearly accepted. It’s up to us to remove it from the lexicon of the next generation. Yes, we must select our words with care. Words have the power to encourage, to create, to inspire. They also have the power to wound, to scar, and to destroy. And once they’re out there, we can’t take them back. Our children hear every word that we say. We MUST choose them carefully.”

We fear the things that we do not understand.

I want to start conversations about differences so that children can feel free to ask questions in a respectful manner.  By asking questions, they will gain a greater understanding, and hopefully appreciation for their classmates who may learn or act in different ways from them.  The more we respect one another, the less we allow others to tease and bully.  

Inclusion is not always easy but it is worth the time and effort to do it right.

Every child deserves to be accepted and belong.

**And, as a bonus, here’s my list of factors that I believe need to be present for an inclusion classroom to be successful.  This list is by no means exhaustive, but I believe it is a good starting point with schools that are looking to implement or refine their inclusion models.**

Classroom Environment (Setting)

The inclusion classroom is designed with the needs of all learners in mind, but it is highly individualized based on students’ IEP goals and accommodations.   The classroom is set up to minimize distractions and promote learning with…

-Clearly defined spaces/areas within the classroom with relevant materials only.

(i.e. stations/centers, carpet area, student work area, class library, etc)

-Daily schedule posted, referred to often, and consistently followed

            -Student visual schedules are available on desks or readily accessible

-Predictable routines and procedures

-Consistent rules and expectations (Gives clarity on how to do things)

-Calm, organized environment with a reduction of visual distractions

-Cool-down area (For sensory breaks- Students learn to use as needed)

-Calm lighting and a soothing environment during work time.

Teacher

In an inclusion classroom, the classroom teacher works side-by-side with the ESE teacher as a team for both planning and instruction.  This might be done using a co-teaching approach or utilizing several different models.

Some characteristics of a strong inclusion classroom teacher include…

-Kind, firm, and consistent

-Has some background in children with special needs (if possible)

-Willingness to learn and grow (seeks out professional development)

-Maintains clear and consistent expectations.

-Clear, precise teaching points (not overly long lessons).  Uses visual cues along with verbal directions.

-Has a calm disposition (does not get “ruffled” easily).   Recognizes that all behavior is communication and does not take student behaviors personally.

-Holds kids accountable academically and behaviorally.   Students know exactly what to expect. There is no “gray” area.

-Has high expectations but also differentiates for the needs of all learners.

Additional Supports

One major key to making inclusion work is considering how all of the ESE support teachers (speech, OT, paras, etc) fit into the structures for the day.  These key members of the team need to coordinate schedules effectively.  Ideally, they offer supports within the inclusion classroom and provide techniques that can be utilized throughout the day, not just when they are in the class providing services.

-The classroom teacher works in partnership with the ESE resource teacher, the SLP, the OT, and other school personnel.

-Schedules are built with student needs in mind first (as defined by the IEP).

-Movement Breaks/Cool-down breaks are provided as needed.  The student has a “safe space” either inside or outside the classroom (ie OT room) during times of high stress

-When “Big Events” occur at school, sensory strategies are provided during and after

-Visual Schedules/Reinforcers are part of the daily routine

-The schedule is built with predictability in mind.  Students always know what’s coming next.

-Tasks are explained but also defined visually with examples.

-Teacher uses nonverbal cues to remind students of rules and expectations

-Increase the frequency and immediacy of reinforcement

-Small group instruction is utilized as often as possible.

-ESE supports “push-in” the classroom whenever possible and plan closely with the classroom teacher based on curriculum standards and IEP goals.

*Some of these suggestions were taken from the Florida Inclusion Network, which is a wonderful collection of resources.  You can learn more at www.floridainclusionnetwork.com

Day 6: Acceptance is Patient

“All children can learn, but in different ways and on different days”

Our society is in such a hurry.

We want our child to keep pace, whether it is kicking the most soccer goals or getting the best grades.

We wear it like a badge of honor when our child is advanced or does something ahead of schedule.

We stick the “My Child is an Honor Roll Student” bumper sticker on our car and post stories of our child’s accomplishments on Facebook.

We compare one child against another, even though we know this is wrong.

And so we push kids too far…too quickly…too soon.

But what happens when our child doesn’t measure up?

I am very familiar with measuring sticks. 

It is my job as an educator to know the standards that measure student learning outcomes at each grade level.

A large part of my job deals with understanding the standards, unpacking them, assessing them, and tracking how children perform in relationship to them.

I helped to write the pacing guides that dictate the curriculum that the teachers in our district follow.

I am the queen of high expectations.

I not only say that all children can learn- I believe it.

I know exactly what my son must know and be able to do in school.

I know that he is ahead…and that he is behind.

But I also I know that he will get there in his own time.

It has taken me a long time to get to a place where I have learned to accept that Ben will learn on a different timetable and will show his learning in ways that are not always typical.

This hasn’t always been easy.

When Ben was a baby I would read the “What to Expect” books and impatiently watch for the milestones.  I beamed with pride when he learned to hold his head up, roll over, and crawl.  At first, the milestones came right on schedule, even ahead, but then things started slowing down.

When he walked at sixteen months, I reminded myself that it was within the range of normal. 

When his talking lagged behind, I assured myself that boys talk later.

I tried not to look around his preschool class and compare- but I couldn’t help but notice the little boy who was talking in complete sentences to his Mommy and the little girl asking endless questions to the teacher.  Meanwhile, my child was stuffing Easter grass in his mouth at the sensory table nearby. 

Fast forward to Ben’s autism diagnosis.

Report after report confirmed that Ben was delayed in many areas.  20 month delay in fine motor and gross motor skills.  Low average scores in auditory and expressive communication.  Delays in social functioning with sensory sensitivities and attention/self-regulation difficulties.

Hearing that your child is below average in such cold, clinical terms is hard to hear, even when you know it’s true.  As an educator, I’ve sat on the other side of the table in such meetings.  I’ve seen the charts and that graphs and I know what they mean.

It is a very different feeling when the data belongs to your precious child.

At first I let the numbers define my feelings and I allowed worry to enter in.    

Then I felt a huge sense of urgency to help him catch up.  I read articles that talked about the magical window of time for learning between birth and age five.  I began scrambling to find therapies to help him.  

To catch him up.  

To get him on track with his peers.

Fast forward to PreK.  I heard time after time that Ben is smart, but his difficulties with focusing makes it hard for him to show his intelligence during assessments.  He struggled with peer relationships and paying attention in class.  He had difficulty regulating his emotions. 

When comparing Ben to his classmates, he was both ahead and behind.  Academically, he knew all of his letter names, letter sounds, and many sight words.   He had known them since before he was three.  His vocabulary was well advanced for his age.  And yet, on any given day, he may or may not be able to demonstrate this knowledge during an “on demand” assessment.  Mathematically, he could count to 100, though he struggled to recognize basic shapes.  He had mastered basic addition and had a strong concept of number sense.  Writing, however, was a huge struggle.  He absolutely refused any writing task unless it was done “hand over hand” with an adult.  Cutting was hugely frustrating to him.

Ben excelled in some areas and lagged in others.  In the autism world we call this “splinter skills”.  Many people on the spectrum are very advanced in certain areas but far behind in others.  This is why it is absolute fallacy to compare one person’s progress to another. 

By kindergarten I had learned to compare Ben’s progress to Ben alone.  

I now understand that Ben will meet the standards and expectations, in his own time.

His writing has improved by leaps and bounds this year.  He now knows how to correctly hold a writing instrument and is beginning to write simple words and sentences.  His drawings have moved from “scribble scrabble” as he calls it to clearly recognizable people and even animals.

Ben is reading on grade level (though he prefers to read “easy peasy lemon squeezy” books with a clear pattern) and continues to show strong math abilities.  He can mentally add and subtract one and even some two digit numbers.  And still, on any given day, an assessment may or may not show his true abilities.

I have learned to accept that Ben is a different kind of learner. 

He is a smart kid but school does not always highlight his strengths.

He has deficit areas that we are addressing through therapy and intervention .

I look for progress and I look for growth, but I no longer expect his progress to match a predetermined pacing guide.  Past experience tells me that we may not see "improvement" in a certain area for a long time, only to see a huge spurt of growth in a very short timespan. 

So it was with potty training.  Ben struggled with this until he was 3 ½, and then in a matter of a couple of days he was fully trained.  No accidents at night.  No accidents in the car.  Not ever.  This is how he works.

I accept Ben for the wonderfully unique learner who he is.

I no longer stare at the student work samples on the wall outside his classroom and agonize because his letters aren’t as straight, his ideas aren’t as clear, or his coloring isn’t neat and inside the lines as the paper next to his.

I smile because I see the beauty within the work that he does. 

I smile because I know how far he has come and how far he will go.

Day 4: Acceptance is Trust

Love is about trust.

With acceptance comes trust.

And trust brings love. 

Love is accepting a person for who they truly are- not your idealized version of the person who you would like them to be.

Trust is hard.

It is hard to know who or what to trust.

The autism community is a community deeply divided.

Sadly, there are many who are seeking to capitalize on a parent’s confusion, desperation, and grief.

And then, there is the conflicting advice from so-called experts.

There are dozens of different therapies, many promising a “cure” for your child.

There’s the gluten and casein free diet.

There are thousands of websites, forms, and “support groups” filled with people professing to have the answers.

It is easy to lose trust.

Because experts can be wrong.

And therapies and diets that work for some children may not work for your child.

Other therapies are downright dangerous.

And too many so-called support groups focus on negativity and become battle grounds for hot-button issues.

So, in the midst of so much chaos and confusion, who do I trust?

For a long time, I placed the burden of trust on myself.

Soon enough, this burden became too much to bear.

I do not have all the answers.

I cannot fully understand what it means to be an autistic person living in this world.

And the stakes are very high.

I am making decisions that impact another person's life.

Like all parents, I worry about the future.

I worry how he will do as he progresses through school.  He is a smart kid but a different kind of learner.  The traditional classroom is not geared towards his needs. 

I worry that as he gets older, his differences will become more pronounced. 

I worry that his friends will notice these differences and judge him for it.  After all, we live in a society that values conformity over uniqueness.  I worry about bullies.  I worry that he won't know how to stand up for himself- to speak up when he needs help.  I worry about what could happen when the grown ups aren't watching.

I worry about his future after school.  I worry about what the world will be like when he becomes an adult.  Will he find a good job?  Will he start a family?  Will he be successful and independent?  Will the world be any closer to understanding and accepting those who are different?

After countless days and nights of worrying, I remembered that this is not my burden to bear alone.

I trust that others who are ahead of me on this journey are paving the road for my son and others like him.

I trust my husband to be my sounding board and partner when making the decisions, both little and big.

I trust Ben to know himself well enough to advocate for his needs.  I’m teaching him to be that advocate now so that when the time is right, he can do this on his own.

Ultimately, I trust in God to guide our family on this journey.  When I give the burden of my worries to Him and trust His plan, I am always filled with a deep sense of peace.

 Trust alone is not enough.

But trust is important.

Because it’s not about me and what I think is best.

It's not about finding a cure or changing him into a person who he is not.

It's about helping him to be the best version of Ben that he can be.

I have to give up control.

I have to give up my worries.

I have to trust.

Trust in us.

Trust in him.

Trust in Him.

And together we will find our way.