Day 20: Acceptance is Perspective

Ben Darth Vader playing the part of the villain.

Those on the spectrum are said to struggle with theory of mind, which is, loosely translated, the ability to put oneself in someone else’s shoes.

It may be difficult for autistic individuals to understand the thoughts and feelings of others. 

They may have difficulty picking up on body language and conversation cues.  

But what about the other way around?

How skilled are we, those who are not on the spectrum, at putting ourselves in the shoes of those who are autistic?  

We often don’t take the time to think about how fortunate we are when things come easy to us. 

It’s easy then to take certain things for granted.

Things like having a conversation with someone.

Things like feeling comfortable in one’s own skin.

But what if such things were a daily struggle?

And what if instead of filtering out the little things happening around us, our brain allowed the entire world in.  What if the floodgates were opened and our mind couldn't prioritize for us- so everything came barreling through to our awareness.  

How much beauty would we see?  

How much could we take before the pain of handling it all became too much for us?

Imagine sustaining that barrage of sensory information across minutes, hours, and days.

Imagine if your brain were like Google Images.  What if, when you thought of the word “dog,” mental images of every breed you’d ever encountered flooded your mind.

Imagine if you thought in numbers and equations rather than sentences.  Your brain thought like Google Maps and you could navigate to anywhere just by using your mind.  You could visualize and manipulate large numbers in your head.  You could see the beauty of the natural geometry around you in the nautilus shell, in the pyramids, in the architecture of buildings...

Imagine what an incredible gift and yet challenge it would be to navigate our world with such a unique mind. 

And yet, imagine the struggle to not be able to pull out the words that you want to say, when you want to say them.  Imagine the frustration of not being able to convey your thoughts and feelings to those you love, because you communicate through images or numbers or touch while the rest of the world communicates through words.

As a parent, I make decisions on behalf of my child every day.

And when I do, I try to take the time to think from his perspective and to ask for his perspective when I can.  

Considering his perspective helps me know how to support him.

It may be building in time for breaks when we do homework.

It may be taking the time to push him on the swing once we get home, rather than starting into the housework right away.

It may simply be taking the time to hold him close and give him deep pressure hugs at the end of a big day, when he needs time to decompress.

Ben talks often about being a grown up.  I think he believes that when he grows up, things will be easier. 

I certainly hope this is true.  I hope that by the time he grows up, he’ll have developed enough tools to navigate the world confidently and independently.

But he will still be autistic.

He will still see the world differently and feel the world differently.

Tonight as I tucked him into bed, he was talking Star Wars.    

“I’m Ben Darth Vader.  I'm on the Dark Side but I’m coming to the Light Side,” he told me yet again, as he tells me several times a day.

I’ve often wondered why he connects so deeply with villains, especially the complex ones that struggle with the forces of good and evil within them.

As I kissed him on the forehead, I leaned in and said, “You know that Ben Darth Vader is different from regular Darth Vader, right?”

“Why?” he asked.

“Because Ben Darth Vader has always been on the Light Side.  He has kindness right here,” I said, pointing to his heart. 

I think that Ben is starting to become aware that he experiences the world differently than others.

I never want him to see this as a weakness or a fault of his character.

I never want him to see his differences as bad or wrong or something to be sorry for.

I want him to be proud of who he is and the strengths he brings to the world.

This is why I try to see the world as he sees it.

This is why I try to help others understand his world a little better too.

Day 19: Acceptance is Communication

Today I am not going to write my own thoughts and perspectives on today's topic of communication.

Instead, I am going to allow the voices of the experts to speak for themselves.

These are the voices of autistic adults.

They are the true experts.

We owe it to them to listen.

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Aspergers Square:

“You wonder why it’s so hard to have a conversation with me.  I have no idea what you are saying.  Way before the trouble with dual meanings and taking things literally and the time it takes to process spoken language and the time it takes to formulate a response that will make sense to you, the first barrier is the noise….

More than one person speaking at once or a TV in the background or that terrible sound coming out of the tiny speakers on your phone or iPad can prevent an autistic person from hearing what you are trying to say.  Too many sounds at once can lead to a meltdown.  My brain is not sorting these things the way non-autistic brains do.  I cannot efficiently weed out what you might think of as background noise....

Acceptance is a room (dimly lit) where people talk slowly and make sure everyone has a chance to communicate in whatever way works best.”

Julia:

 “They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)…

I’m articulate.

(So you don’t have to listen.)”

Amy Sequenzia:

“First thing, everybody communicates.

I will say it again: everybody communicates.

If you don’t understand the method, this only means that you don’t understand, not that there is no communication.

Disabled people who have difficulties with expressive language, or who are non-speaking are often thought of as not being able to communicate. This is because the majority is sometimes too lazy to think outside the box. Yes, I said lazy. We also find it hard to understand the majority’s language but we are pushed and forced to learn it, and to act in compliance. Even when we are only a few steps from the majority’s way, it is never good enough. We are consider to be “able to communicate” only if we speak, and act in accordance to, the language the majority chooses to know.

This attitude, seen in parents, teachers and other professionals is one of the things that need to change.

I am a non-speaking Autistic who has learnt how to communicate in a way that the majority is able to understand. It was not easy, it still isn’t. Even after I had shown how much I knew, how much I was learning, despite not being formally taught, even if I no longer cried as a way to let people know that I was trying to convey a message, the default attitude of teachers, doctors and others was still dismissive. The attitude of the groups I mentioned are still dismissive.

I believe this is also true for other disabled people who don’t communicate in what is considered “the normal way”.

The damaging attitudes toward different methods of communication hurt us not only when we want to be heard, but also when we want to participate, be social, or when we want to listen.

Attitudes toward communication reflect the big problem of non-disabled people regarding disabilities: there is too much “awareness” but too little understanding."

Emma Pretzel:

"we say “behavior is communication” a lot. because it’s true, and important.

it is also a vast, vast understatement.

because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.

so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their environment plays the tune they’re talking to?”

Sometimes we make our patterns in different dimensions than most people–sideways not time-ways. jokes that are funny not because they say a funny thing, but because when you layer the first context you experienced for these words on top of the current context you’re using these words in, the combination of the two is hilarious. scripts that mean feelings, because the origin of the script is a scene full of that feeling. even scripts that mean feelings because the first time you heard them, you were feeling full of a certain feeling. sometimes it’s like we live a life full of songs reminiscent–your breakup ballad, wedding dance music, earliest church hymn…all these are the size and heft of our voices on repeat.

just because someone speaks the words you speak doesn’t mean that their language is like yours–we build our ideas with different materials, in different environments, for different reasons. the next time it seems like we’re going in circles with our mouths or our minds, remember: even as we circle, time is passing. now is different from one moment ago, which was different from two moments ago, and that means every time we do a circle, the circle has changed. maybe only infinitesimally. but truly. and sometimes circles can get wider, or narrower; sometimes it might look from above like we’re tracking the same path, over and over into the ground…but if you climb down onto the ground at our level, you’ll see we’ve been spiraling up to the sky, or carving down into the center of the earth.”

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We need to change our definition of communication so everyone can join the conversation.

We need to find a way to listen.

Day 13: Acceptance is Listening

In this picture, Ben was chosen to help open the Disney store at the beginning of the day.  It's a great example of how his body expresses his feelings.

It’s confession time.

Are you ready?

Here it goes...

I’m not always the best listener.

It’s something I’m working on.

I try to listen attentively when a person is talking to me and not think about what I want to say or the millions of things I need to get done.

I try to remind myself to stop what I’m doing and give the person talking my full attention.

Suffice it to say that I'm far from perfect, especially with the people who I love the most.

I’m also a selective listener.

My husband will tell you that if I’m working on a computer, he can have a full conversation with me, and I won’t remember any of it.  I will have said the “uh-huhs” at the right time and everything, but I will literally have no recollection of anything he said. 

I’m working on being a better listener not only for my husband, but also for my son.. 

Because- you see- listening to my son is especially important to me because it wasn’t too long ago that we couldn't have a conversation at all.

I still remember the moment when Ben asked his first conversation-starting question to another person.  A question that wasn’t asked to have one of his basic needs being met, like, “Juice, please?”

The conversation happened on the beach.  I was sitting with two of my friends, and we were talking about our dogs.  Ben walked up to my friend and asked, “What your dog's name?”  This was just a little over a year ago.

So you can see why I need to get better at listening.

You can see why I try to stop what I'm doing when he says, “Mom, look at this!” and holds up his latest Lego creation or drawing of a spooky monster.  Because not too long ago he wasn’t able to draw at all.  Not too long ago he wouldn’t even ask me to look his way.

Ben has a unique way of communicating.

You have to listen to more than just the words he says.

On Saturday I was dropping Ben off at theater practice.  It was Ben’s second time in class.  He walked right up to his teacher and said, “Onions are a grown-up food.”

Now, usually I can figure out the context of Ben’s statements, but this time I was completely stumped.  Ben doesn't eat onions, and, quite frankly, neither do my husband nor I, so they are not a food that we talk about a lot.  Plus, it was morning, and we'd just had breakfast.  I looked at his teacher and said, “I’m sorry, but I’m really not sure what that means…”

She smiled knowingly at me, and turned to Ben and said, “Ben, great job!  You remembered your line for the play.”

This is what I mean when I talk about presuming competence.

Presuming competence is about listening with respect for the human being.  It’s knowing that, even if I don’t understand the context of the message, the message is there.

Being a good listener to Ben can be downright tiring at times.

It’s hard to answer the same questions over and over.

“How many minutes from our house to school?”

“Is it still morning?”

“What’s sand made out of?”

But I have to listen for the real question.  I have to probe to find his underlying feeling- the true reason why he's asking the question.

I have to recognize that when he’s asking if it’s still morning, that he’s really anxious that his day is slipping away and his beloved weekend is coming to and end.

I've also learned to listen with more than just my ears. 

I watch what his body is telling me.

I know he's happy when he hums and sings.

I know he's filled with excitement and joy when he flaps his hands.

I know he is overwhelmed when I read the signs on his face.

I owe it to Ben to be a good listener.

I listen to autistic adults when they describe what it felt like to be a child on the spectrum.  I listen and reflect on how to be a better mom.

I listen to moms of children with disabilities, whether their child has autism, sensory processing disorders, or Down’s Syndrome.  I especially seek out those moms with older children, who are a little farther down the road that I am.  They give me much needed perspective and remind me that they’ve been where I am, and it’s going to be okay.

I listen to the adults who work closely with Ben, whether it be his classroom teacher, his speech therapist, his OTs, the paras at his school, and even the lady who is there when I drop him off in the morning.  I listen when she tells me how well he ate his lunch and how patient he was in line yesterday.  

I listen to them all and I am filled with such gratitude, because the more I listen, the more I realize that the common denominator in what I'm hearing is love.

Love for my boy.

And my boy's love for me.

Day 11: Acceptance is Presuming Competence

Ben will never forget the day that he toppled off his bicycle, and neither will I!

The school year is winding down.

Ben’s IEP review meeting is drawing near.

Time to dig out Ben's IEP and assessment reports to familiarize myself with them once again.

As I read through the evaluator’s comments from his initial assessment, I’m struck with the same chills that I always have reading these reports.  

I always get the strong sense that this one report has completely failed to capture the rich complexity that is my son.  

It is a snapshot in time of his abilities and struggles.  

And, while the snapshot is an accurate depiction of that moment, it is incomplete.

The report states that “Ben was heard to communicate in sentences but is not engaging in a give and take conversation.  He had difficulty responding to questions that were asked of him, often repeating what was asked.  Scripting was observed.  Most of his speech was understandable, but Ben did not look at the evaluator when speaking…”

Sometimes days our conversations happen just as this evaluator has described.  On those days, our conversations seem to go in circles.

And while it would be tempting to assume that these repetitive conversations reveal low cognitive abilities, I know better.

Because then there are times when we talk about concepts that are far beyond his years.

And that is why I believe in presuming competence.

Presuming competence is an act of faith.

It is belief that a person understands even if they don't appear to comprehend, or even to be listening and paying attention to what is happening.

Presuming competence doesn’t mean that the person understands it all right now.

Presuming competence means allowing a person to process information at his own speed.  It is trusting that, one day, all the dots will connect and the pieces will come together in the person’s mind.

Presuming competence requires incredible patience, but it is worth the wait.

Ben may not show that he has processed a situation until days, weeks, or even months later. 

He returns to pivotal events in his life again and again.  He asks question after question, clearly rolling the concepts around in his mind.  Each time he brings the conversation back, he probes a little deeper, uncovering a new layer of complexity.

Like the time he fell off his bicycle.

I’ll never forget the day.  

I was walking behind him and I watched his bike speeding faster and faster as it raced down the hilly sidewalk.

At first it was fun for him.  We don’t have hills like that in Florida.

I yelled for him to slow down.  At first I don’t think he wanted to because he was enjoying the sensation.  And then he couldn't.  And then he lost control as he barreled into the street.  I watched the whole thing happening, but I was much too far away to do anything about it.

By then, he had left me far behind.  I raced to him.  He was crumpled in a ball under his bike.  He looked so small and blood was everywhere.  I still remember pressing the wound in my bare hand as blood dripped onto the sidewalk.  I remember carrying him up that hill as I yelled for my dad, who was mowing the lawn- hoping he would see me and come help.  I yelled louder and louder in desperation until finally he heard me and came running to help.

Days later Ben wanted to walk down that sidewalk again and see the blood.  He wanted to retrace his steps on the route to the accident.  It was as if he was memorizing the scene in his mind.  And then, we turned around and walked back to my parent's house.

A year later, as we sat at a restaurant waiting for dinner, Ben looked at me and asked, “Why did you yell?”

By now I’m used to conversations that start in the middle.

“Yell about what, Buddy?” I asked.

“Why did you yell when I fell off my bicycle?” he asked.

“I yelled because I needed your Papa’s help,” I explained.

“What’s blood made out of?” he asked next and we talked about blood and then the conversation became a circle of questions about what different parts of our body were made out of.  

A few months later, he would bring the bike accident up again in the car on the way to school.

“When I fell off my bike, I bleed.  But I did not die.” he explained.

"No, buddy, you did not die," I repeated.  "You were fine."

“I want to be with you forever,” he added.

"You'll be with me a long time," I assured him and secretly hoped it would be true.

“Will I live to be 100 years?” he wanted to know. 

Another recurring conversation we have is about death and heaven. 

Ben has been fortunate that he has not had to deal with much loss in his six years on this planet.  Last year Ben won a free goldfish during an Easter egg hunt.  Despite our best attempts to keep the darn fish alive (which included purchasing a rather expensive tank, filtration system, and specialized water and food), the fish eventually died a few weeks later. 

One morning when we woke up and looked into the tank, the little fish was resting at the bottom.  I knew the creature had finally passed away.  When Ben looked into the tank, I explained to Ben that his fish’s body was now like an empty shell.  His fish wasn’t alive anymore.  I then quickly ushered him out of the room so that Dad could take care of the disposal.  We did not replace the fish, and Ben really didn’t ask many more questions about the fish at the time.

Weeks and weeks later, Ben brought up the goldfish again. 

“What’s dead mean, Mommy?”  he asked.

“When someone dies, they are no longer alive on this Earth.  Their body gets buried in the ground.”

“Will the fish go to heaven with Michael Jackson?” he asked. 

Now that question would most likely seem odd to an outsider, but I knew exactly why he asked this.

Ben went through a Michael Jackson phase where he loved hearing his music on the radio.  We didn’t encourage this fascination, but it persisted for a few months anyway. 

In one casual conversation over a year ago I had mentioned that Michael Jackson had died, because Ben wanted to see him in concert.  On several occasions since then, Ben has talked about Michael Jackson in heaven. 

“What’s heaven look like?” he asked next. 

“No one knows for sure,” I answered.  “But the great thing is that one day we will all be together in heaven forever.”

He paused and I could tell that his mathematical brain was trying to calculate eternity.

Just because Ben often speaks in simple sentences with speech errors that sound “cute," it belies his age and the deep thoughts that are well beyond his years. 

Yesterday a hailstorm hit my parent’s house and the house of my brother and sister and law. 

My mother sent pictures of the balls of hail. 

Ben studied the picture and asked a variation of a familiar script.

“What’s hail made out of?” he asked.  He always wants to know what things are made out of.

“Hail is made out of ice that falls from the sky.”  I patiently explained. 

“Why?”  he asks. 

“Hail is one kind of storm, like a tornado or a hurricane.”  “

What’s a tornado made out of?”  he asked next. 

At first glance, it would appear that our conversation was stuck, as if revolving in circles back to the same ideas over and over.  I imagine that this is probably similar to what the evaluator must have heard when she had a conversation with him.  But on that day our conversation went on.

After we discussed tornadoes a bit more, he wanted to watch a video of a tornado, and so we did.  The video showed the funnel cloud moving towards the camera and then the destruction after the storm.  The clip ended with a man standing in rubble where his house had once been. 

“Is Nana and Papa’s house gone?”  he asked. 

“No, their house is fine,” I answered. 

“Did the hail destroy the house?”  he pressed again. 

“No, buddy, it’s little hail, and their house is strong.  It is fine.” 

“Is our house strong too?”  he wanted to know. 

“Yes, buddy, our house is strong.  And if a storm is coming, we’ll know it and will go where it is safe.” I reassured him.

"God keeps you safe," he replied and headed up the stairs to bed.

It’s tempting to look at the surface and assume that a child on the spectrum is capable of literal thinking only. 

It’s tempting to believe what we often hear- that those on the spectrum aren't capable of thinking deep thoughts, empathizing with others, or making inferences. 

I believe that our children know and see a lot more than we think they do. 

I have learned to trust in son’s capability to understand concepts on a much deeper level than I can even imagine.

I have learned to presume competence.