Living With Sensory Differences, "Ask The Expert" Edition

In this picture Ben is running on the beach towards the water.  The beach is most likely a close second of his favorite places.

Living with sensory differences isn't always easy, so I decided to ask the resident expert on the subject, my six-year-old son Ben.

Ben and I often talk about how his body and brain give him certain strengths but can also be frustrating at times.

Here is a recent transcript of our conversation about Ben’s unique body and brain, shared with his enthusiastic permission.

Me:  What do you like best about your body?

Ben:  It (my body) has hands to get some coins and to look at the coins.

(Ben is a coin collector.  You can read more about his love of coins here.)

Me:  What do you like best about your brain?

Ben:  It thinks about states.

(Ben is also a huge fan of geography, particularly the United States.  He has a mental map of all the states inside his mind.  He can tell you more about where the states are located than pretty much anyone I know.)

Me: What makes you most frustrated about your body?

Ben: Hitting myself

(When Ben gets frustrated with himself, he’s developed the habit of hitting his head, to literally “knock some sense” into his brain.  He’s learning other strategies to cope with frustration.  The one that helps the most is squeezing a squishy ball.)

Me:  What makes you most frustrated about your brain?

Ben:  It makes mistakes.

(As much as we talk about mistakes being wonderful opportunities to learn, he still hates mistakes with a passion.)

Me:  How do you help your body when you get frustrated?
Ben: Squeeze my squishy ball.
(Squishy balls work better for Ben than taking deep breaths.  Pro tip- get a durable squishy ball.  It's even more frustrating when they break!)

Me: What do you do to help your brain when you get frustrated?

Ben: To get good thoughts in my brain, like coins.

(Positive thoughts are big around our house.)

Me: What is the hardest part about school?

Ben:  The gym and the bucket dippers.

(The indoor gymnasium is a loud place for Ben, and he wears noise-cancelling headsets to handle the noise.  “Bucket-dippers” are people who do unkind acts that dip into a person’s metaphorical bucket.  You can read more about them here)

Me:  What is the best part about school?

Ben: Science experiments and centers.

(Ben is definitely a hands-on learner and we love that his teachers work hard to meet his learning needs!)

Me:  Where is your happiest place to be?

Ben:  In my home with my home.

(Ben has a certain soft blanket that he absolutely loves.  He calls it his home.  As soon as he gets home, he cocoons himself inside it with his squishy balls and his stuffed animal friends.  It is definitely his happy place.)

Me:  What makes you the proudest about yourself?

Ben:  I am a bucket-filler.

(Yes, Ben, you certainly are!) 

So...there you have it!

Many people try to explain sensory processing or autism, but the true experts are the people who live with these differences every day.  Each person's experience will be unique and a bit different, so in order to best understand the individual....ask.  And, if the person is unable to communicate verbally, watch closely and learn.  All behavior is communication.  

Every person, regardless of their abilities or functioning level, deserves respect.

Every person deserves to hear about (and spend time developing) their strengths at least as often, if not more, than their areas of weakness.

Every person deserves to feel safe, respected, and loved.

And...finally...every person deserves to be the author of their own story.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

2027

 

My resolution is to help make the world a more inclusive place by the time my son graduates high school in the year 2027.

 The New Year is a time when many of us think about our personal goals and make resolutions for the coming year.  For example, we might resolve to lose weight, exercise more, or save money.   These are noble aspirations, but, in most cases (including my own), our willpower fizzles after few weeks and we revert back to the habits that got us where we were in the first place.

Lately I’ve been thinking about the future, and more than just the coming year.

I originally started writing this blog as a way for me to connect with the autism community, to educate and provide support to other families on a similar journey, and to help others understand autism as it directly relates to our family.

Those goals still hold true, but somewhere on this journey, my vision has shifted. At first, my view of autism was very narrow and focused on my son.  But, the more I read, researched, and learned, the more troubled I became about how society treats those with disabilities. 

I realized that there is more work to be done than I ever imagined. 

There is an insidious perception that pervades our society.  The perception is that somehow those with disabilities are “less than” the rest of us. 

Once you see this perception, it can’t be unseen.

For too often, therapies for autistic individuals focus on making them appear “less autistic.” 

Too much funding goes towards finding a cure for autism, and too little towards providing supports.

And, too much of the conversation centers around how autism impacts children (specifically boys) and not nearly enough about the realities facing autistic adults in the workplace and in society.

This has got to change.

We are seeing the direct impact on a generation of autistic adults.  If we listen to what they have to say, we can change the future for the better.  We cannot go back and change the experiences that these adults faced when they were children, but we can make sure that we don’t repeat the same mistakes on a new generation of children.

My goal is for the next generation- my son’s generation- to grow up in a world that values differences rather than conformity.   This society will have supports and structures in place to accommodate the very real needs facing the autism community. 

My resolution, if you will, is to do my part so that by the time my son graduates high school in the year 2027, the world will have structures and supports in place to support inclusion at all levels, in school, in the workplace, and in all aspects of society. 

Here is my plan to help with this change.

1)   Listen to the words of autistic adults and consider their message with all personal feelings aside.  Embrace their advice with humility and remember this is about my child and his future.

2)   Become involved with organizations that share my mission.  Many organizations are focused on finding a cure for autism.  I’ve reached a place where I no longer care what causes autism.  I am instead more focused on finding supports for my child now, but, more importantly, helping to build systems and structures to support him in the future.  Organizations such as The Autistic Self-Advocacy Network,  were created by autistic individuals and are where I’ll be lending my support.  I’m also involved at a local level with disability organizations that align with my mission in my own community.

3)   Educate others about autism acceptance.  Help others to shift their point of view away from autism as a tragedy by helping them to see the wealth of strengths autistic individuals bring to this world.  Help them to understand the importance of creating a more inclusive world for all of us.

4)   Continue to teach my child the skill of self-advocacy.  This includes teaching him to understand his strengths and how to ask for supports to address his areas of challenge.

5)   Make sure to tell my son every day, that I love him for the person who he is. Any adults who come into his life, whether they are therapists or teachers, family or friends, will always hear from me that our ultimate goal is not to change Ben into a “less autistic” version of himself.  Our goal is to raise a confident, happy adult who will make this world a better place in his own way.  Ben is lucky that he has so many wonderful adults in his world who love him for who he is.  This is my wish for my child, and for every child.

This is my New Year’s resolution for this year and for many years to come.

Unlike my other resolutions that fizzle out with time, I know I’ll stick to this one. 

The question is- will you join me?

Our work starts now.

My Letter to an Autistic Adult

*I decided to write this letter after reading a comment written by a self-identified autistic adult advocate.  According to the comment that she left on the forum, her mission is to educate, but lately she feels like giving up because so many people attack her words rather than taking her message to heart.  I want to her to know that, as a parent of an autistic child, I hear her and I appreciate her words and insight.  Now, more than ever, the autistic perspective is needed.

Dear Autistic Adult*,

We have never met before in person, but I want to thank you.

First, allow me to introduce myself.

I am a mom of an amazing seven-year-old named Ben.  I’ve changed his name to protect his right to privacy. 

Ben is autistic.  I am not.

When Ben was first received his autism diagnosis, I became shamefully aware of how little I really understood about autism.  I was a novice in the world of disability, but I quickly dove into researching anything I could find on the subject.  I quickly realized that there is a lot of conflicting information out there.  For a short while, I let the so-called experts scare me with their doom and gloom prognosis.  During that time, I allowed myself to give in to worry and doubts about my child’s future.

Somewhere early into my journey, I discovered you.  I came across your blog.   I read your comment in an autism forum.  I met you through a Facebook page devoted to autism acceptance.

Even though it was hard to hear, I listened to your words.

I realized that, even if you and my son come from different points on the autism spectrum, you understand his neurology in a way that I never can or will.  You have lived his journey and are speaking from a place of experience.  You are the true expert- more than any doctor with a PHD ever can be.

I listened and realized how much I still needed to learn.

I realized my perspective was off. 

I realized I was busy feeling sorry for myself, but it wasn’t about me at all.

This was about him.

I listened and began seeing my son’s autism in a brand new light.

You taught me that autism is not a disease and therefore does not need a cure.

You taught me to steer clear of those promising cures and to be wary of organizations without any autistic representation on their governing boards.  Read more about why I won't support organizations such as Autism Speaks here.  

You taught me to love the child who I have rather than mourning the loss of the child I had expected him to be.  Read Jim Sinclair's eloquent post called "Don't Mourn for Us" here.  

You taught me that his autism permeates every aspect of who he is.  It is as much a part of him as his gender or his eye color.  You cannot separate autism from the person- nor would you want to, because even though autism brings its challenges, it also brings amazing strengths.  And all of us have challenges, whether we are autistic or not. 

You taught me about ableism  and inspiration porn  and the dangers of therapies that seek to make a child indistinguishable from his peers.  I learned about the insidious nature of quiet hands. 

You taught me that no one “grows out” of their autism and the price the body pays when it tries to “pass” as normal for too long. 

You taught…and I learned.

I learned about identity-first language versus person-first language and why most prefer the term "autistic" to "person with autism".  I changed the way I used those words and explained my reasons to my colleagues when they asked why. 

I’ve learned to ask for consent when writing about my son’s experiences.  I’ve realized that they are his stories to tell more so than my own.  My son is not an object to serve as a teachable moment, an inspiration, or something to pity.  He is a child who will someday grow into an adult.  I have to respect his privacy first and foremost.  

I realize that, for too long, parents like me have controlled the narrative about autism, and the autistic perspective was missing entirely.  I hope this continues to change.

I know it hasn’t been easy for you to share your perspective.  I know that parents have said harsh and hurtful things to you.   I’ve seen so many online forums become battlegrounds rather than safe spaces.  I know it must be tiring to seek to educate- to explain the same message over and over- as you meet new parents who don’t “get it”, as I once didn’t.  Sadly, I do not see an end to the great divide in our community any time soon.

But I’m here to tell you that it is worth it. 

Because, by educating me, you are making me a better parent for my child.

You are making me a better teacher for the children I educate.

You are making me a better writer, advocate, and human.

There is so much work to do. 

Please don’t give up just because the divide seems insurmountable.

Please know that there are other parents like me who are quietly listening and learning.

You have the power to change perspective. 

Because, though I may not share your neurology, I share your mission. 

I share your desire for respect and equal access to education, employment, and opportunity. 

No exceptions. 

Respectfully Yours,

Jessica

The Part About Bullying I Never Considered

This quote comes from the book "Sadako and the Thousand Paper Cranes."  The quote reads, "This is our cry, this is our prayer, to build peace in the world."  Sadako's mission of peace resonates me as I consider the need for kindness on our world.

It is bedtime in our house.  Teeth have been brushed, books have been read, and it’s time to turn off the lights and tuck Ben into bed.  Ben prepares to say his nightly prayers.  For the past few weeks, his prayers have taken on a new fervor.  Tonight is no exception.  “God, please help tomorrow be a good day.  Please help me be good.  And please keep the bucket dippers away,” he pleads.

            Bucket dippers are his word for the kids at school who dip into his metaphorical bucket.  His class read a story called, “How Full is Your Bucket ” by Tom Rath.  The story talks about filling people’s buckets by doing nice words and deeds, and how doing mean things and saying unkind words dips into someone’s bucket.

            Ben encountered a group of older kids, aka the "bucket dippers," at school during the after care program.  It’s the time in the day when kids from different grade levels mingle in the gymnasium.  Due to the loudness of the gym, Ben wears noise cancelling headsets to help him deal with the sound.  On this particular day, they pushed him down and tried to take the headsets.  And when he started to cry, they called him a baby.

            When Ben told me what happened,  I immediately talked to the teacher and the principal.  The adults intervened right away.  The boys had consequences.  We created safe spaces and new options for Ben in the gym.  And, to the best of my knowledge, these “bucket dippers” haven’t physically or verbally bothered Ben in weeks.  And yet, every night Ben still prays to God to keep the bucket dippers away.

            As a classroom teacher I’ve certainly dealt with situations like this in the past with my own students.  I’ve mediated in cases of bullying and have dealt out consequences to the bullies while counseling the victims.  And yet, it hasn’t been until my own child has been on the receiving end that I have realized just how deep the psychological wounds can scar.

            I never considered until recently just how much a child, such as mine, who tends to perseverate and focus on something over and over, will relive the hurt and pain again and again, to the point where even if the actual bullying has stopped, it is still alive and real in the person’s mind.  This is the part of bullying that I never considered.  I’ve spent lots of time talking to kids about how to handle the actual event, but not nearly enough time thinking about the after-effects.  The part where trust is rebuilt.  And this was a one-time incident (I think...I hope...).  I can only imagine how bullying impacts the child who deals with this every single day.  

            The situation with the bucket dippers has opened up many conversations about how Ben can stand up for himself in a strong but respectful way.  We read the book, “A Bug and a Wish” by Karen Scheuer.  The book was recommended by my friend who happens to be a school psychologist.  The book talks about telling the bullies what “bugs” you and what you “wish” they’d do instead.  We practice saying those words so that, if the situation arises again, Ben will be ready.  We’ve talked about going to the grown-ups for help when necessary.  We’ve talked about walking away.  We’ve talked about all of those things, and yet he still worries and he prays.

            As I snuggle next to my little boy, I wish that I could shield him from this world, a world is not always a friendly and welcoming place and getting scarier and more uncertain by the day.  Unfortunately, the road for him is even more challenging because his differences are magnified, both in the way he speaks, the way he reacts to difficult situations, and the tools he uses to cope with his world.  Even though as a society we preach embracing differences, the hard fact is that many people are scared by differences.  People don’t know how to handle different, and so they keep it at an arm’s length or poke fun of it.

            I naively hoped that my son would be spared from the harshness of bullying.  I hoped that his differences wouldn’t set him apart- that his sweet nature and amazing personality would be enough.  

            And so, as I plant a goodnight kiss on his forehead, I say a prayer of my own.  I pray for strength to guide him through the days ahead.  I pray for the wisdom to know the right words to say to him on those days when his heart feels broken.  But, most of all, I pray for a world filled with way too many bucket dippers and not nearly enough kindness.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Active Listening Reimagined

This is a typical representation of how we teach children in school to listen.  Is this the only way listening can look?

What does listening look like for a child in school? 

Is it “criss-cross applesauce, hands in your lap?”

Is it “one two three, eyes on me?”

In school there is little debate about how listening should look. 

We teach children to practice “whole body listening” and ask them to listen with “your eyes, ears, and heart.”

We explain that when we listen, our bodies should be facing the person speaking and we should be looking with our eyes.

When a child fails to comply with this request, we tell the child that we will wait until they give us their full attention.  We insist they “look into our eyes.”

We think that these are the behaviors we should expect from our learners.

And yet....for some listening looks very different.

Ben’s OT once said something that has stuck with me. 

She said that this idea of eye contact is a social construct.

She taught me that our eyes are not our ears.

She explained that for some children, like my son, struggling to maintain eye contact takes so much energy and attention that focusing on the directions or the task at hand becomes nearly impossible.

I learned that the kid who falls out of the chair in class was most likely listening because he couldn’t focus on listening and sitting in the chair at the same time.

I have learned that for some children, movement actually enhances listening and learning, and forcing stillness actually causes learning to diminish.

I have heard autistic adults explain that looking into someone eye’s feels roughly the same as being pricked in the eyes with hot needles.

Philip, a young boy with sensory needs and autism, explains it this way.  Philip is nonverbal, and communicates through typing.  “I am letting you know about eye contact. My eyes see very well, but each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body.”  You can read more of Philip’s words here.

And yet, so many of us insist on eye contact because we believe it helps the child listen. 

We believe that eye contact is an essential life skill.  After all, in our western culture, those with shifty eyes are viewed as untrustworthy.

My ultimate goal is for my son to be an independent, capable adult who makes a worthwhile and satisfying contribution to this world.

And so I grapple with things like eye contact.

Is it important to insist on eye contact from my son so that he can better “fit in”, even if it is distracting to his ability to listen at best and painful to him at worst?

Forcing a child’s body to comply, even if that body part is the eyes, just doesn’t seem right to me.

And so, what does listening look like for my son?

Every year I explain to his teacher that Ben probably won’t look like he’s listening when he is sitting on the carpet for a read aloud, or when he’s seated at the table at small group time.  He may not always make eye contact or sit perfectly straight in the style of criss-cross applesauce.  Even though he appears to be disengaged, I ask them not to assume that he is not paying attention.  Ask him a question and see if he can answer.  Most likely he can.

Ben is a sensory kid.  The environment around him can often be over-stimulating and, at times, overwhelming.  It’s hard for his brain to filter out the extraneous sights, sounds, and smells.  Sometimes the only way he can focus on the teacher’s voice is to look down so as not to see all the extra distractions around him. 

Please don’t be fooled because listening looks different for my child and those like them. 

I am blessed that Ben has had teachers and therapists in his life who get it.

Ben sits on a wiggle seat in class.  He uses a white board during turn and talk to visually record his thinking and his conversations.  He has the opportunity to sit on a T stool or a regular chair during group time.  In short, he is allowed to learn in the ways that fit him best.

The other day, Ben’s teacher told me that he is a great self-advocate.

I can think of no higher praise.

I am grateful that my son is finding appropriate ways to ask for what he needs as a learner.

There are many ways to listen and to learn.

Our eyes are not our ears.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up