Tuesday, December 22, 2015

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,

Tuesday, December 8, 2015

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!