Day #234 – Springtime in Spectrumland

The blog is growing and just in case you have recently joined us. This paragraph is for you….

I began this blog 233 days ago as an ode to my son, Tucker. I committed to writing 366 days in a row.  I chose 366 as a theme because of leap year.  What a strange, unexplainable occurrence just like autism itself.  Leap year isn’t wrong, we still ‘count’ it.  But it’s just different. A child with autism isn’t wrong, just different. They have a little extra something…just like an extra day in the year.  I committed to write every day one story or resource every day.  No matter how busy or tired I am…because this boy who is my heart, my tear, my pep, my breath – he deserves it.  Begin here…Day #1 – The Journey

For those of you who have been reading – yes, I’m still searching for agents and publishers.  So many of you have reached out to me wanting a paper copy to give as gifts or have as handy resources.  Trust me, as soon as something is in place – I will let you know.

I feel like I’m in class and now that I have completed announcements I can actually move on with the day!  HA!

It’s springtime in Iowa – springtime in Spectrumland.  My Facebook feed is full of my friends and their children playing at the playground.  I love these pictures – they make me sad and wistful, longing and hoping, happy and hopeful all at the same time.

Why?

It’s part of the hypersensitivity to movement within the vestibular system.  For more information read:

Day #7 – Seven Senses
Day #49 – Give Them Recess
Day #50 -Overcoming Fear to Trust
Day #51 – Goosfraba
Day #212 – Adventures

From http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html signs of vestibular dysfunction:

_x_avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds
_x_ avoids rapid or rotating movements

I’m not just referring to roller coasters here -plenty of folks don’t like those.  Many children with autism will avoid or dislike playground equipment.  Especially swings, ladders, slides and/or merry-go-rounds.  Seems strange?  Right? If these children like to crash and move around and bump into things why would they avoid this ‘meant-for-play’ equipment?

playground

Remember Day #126 – I Want to Ride My Bicycle? Taking a child with autism off their feet equals, well – prepare for a  complete melt-down.  Remember Day #56 – Elephant on the Stairs?  That vestibular sense again!  When their feet are off the ground they lose their goundedness and feel even more out of place.  What to do?  We’ve used two very different strategies.

Strategy 1:  Distraction

With all things spectrum related, use distraction.  Seriously – we are the masters of diversion.

Use distraction.  Help them find something different to focus on.  My only problem with using distraction too often is that then we never help him face the fears.  We never develop coping strategies to help us really experience and live life.  So, I generally choose to go with being present to teach ‘gradual coping.’

Strategy 2:  Be Present

No matter what has happened in Tucker’s life we have been there.  Yes, it takes more time – yes, it takes increased patience, but the return?  The return is unmeasurable.

It’s just one way that he has helped me become a better parent.  We *should* behave this way anyway…but life is life.  Life is simply too busy.  With Tucker, I learned how to slow down…I learned that I had to be more present.

Tucker was afraid to swing.  So, I would swing gently with him on my lap. Gradually, ever so gradually we would go a bit higher and a bit higher.

Tucker afraid to go down the slide.  So, we started with a very small slide and I would hold his hand all the way down.  Then, a larger slide with him between my legs.  Gradually, ever so gradually we would go a bit faster.

Tucker was afraid of the merry-go-round.  So, I sat beside him with our legs dangling just pushing gently. Gradually, ever so gradually we would go a little faster and I would move further from him.

You are their safety net – be there.  Teach them.  Be a part of it.  Allow these very special children to experience the simple thrills of life. Trust me, it’s worth it…even if you have to run to vomit after too many go-arounds on the merry-go-round.

Day #233 – Plagued With Plagiarism

Most of my love/hate moments in life come from something I said or did that comes back to haunt me.  When that ‘thing’ causes me to rethink what I currently believe.

I love this – because it allows for growth and redefinition.
I hate this – because it forces me to question my current belief structure.

What’s our new issue?  Obviously plagiarism.

I am a teacher of writing and speaking.  Plagiarism is bad, bad, bad…

I often pontificate about the woes of plagiarizing – about how it’s thievery of intellectual property.

So, one would think my own child should know better.

He does…but I fear he cannot help himself.

Remember Day #43 – My Tape Recorder?

“So, what do some children do? Well, they memorize. I used to refer to Tucker as my tape recorder (albeit not in front of him). He talks like I do. He found a way to memorize the words, phrases, and verbal intonations I use in any given situation.  I also worked with him, tirelessly and patiently.  When he responded with something inappropriate I would simply respond, “Tucker, this would work better in that situation.”  No matter how embarrassing it was [what he said].  I never attacked or shamed or embarrassed him, he simply needed him to learn.”

Yesterday he received a 0/10 on an assignment because he plagiarized.  Yep, pretty much plagiarized the entire assignment.  His teacher asked if he knew what plagiarism was.  Of course he did – not only from his teachers, but from his mother.

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Then, his teacher pointed out all of the sentences that were taken directly from articles and which were in his own words.

He was reportedly quite upset – he absolutely knows what plagiarism is, he absolutely knows why it is bad.

The toughie?  He may not know how to avoid it.

Ugh.

Hmph….

How do we teach our ‘tape recorder’ boy that plagiarism is wrong when he’s been taught ‘canned phrases’ his entire life to help facilitate conversation?
Essentially, most of his life has been plagiarized.  He has learned to communicate by repeating ‘like’ phrases and words that he hears other people use.  He wholeheartedly understands the idea(s) that is/are trying to be communicated.  His ability to ‘recreate’ someone else’s ideas is limited.
Focus on the positive.
One of the ‘wins’ of the situation is that he was frustrated and left the classroom.  He went and laid down in the shared resource area.  Once his frustration had subsided he got up and went back to work fixing what was wrong. BIG win.
Now what?  Well, we have to find a way to ‘deal’ with this.  If he is going to have academic success he cannot plagiarise, it’s as simple as that.  How do we teach him that using other people’s words and phrases is wrong – but that, in itself, has been his tool to communicate.
Here is our best bet right now…Tucker is also a rules guy.  He thrives in structured rule-based environments, so we’re going to  approach plagiarism as such.  This week we will sit down and write a list.  The list will include indicators of plagiarism:
  • do not use more than three words in a row from the same sentence
  • use quotation marks if you are using the whole phrase
  • cite your sources
  • NEVER cut and paste-always force yourself to write after reading
  • take notes first-using only phrases-not complete sentence

If this doesn’t work, I will most likely discuss using the ‘Literature Review’ as a method of writing for him with his teachers. In essays it may behoove us to allow him to use this method and then require a simple summary paragraph that is highly structured with a topic sentence, supporting details, and a concluding sentence.

It’s the thing about writing that Tucker has really taught me.  I love to blog and write freestyle – but I also love to write about research findings in very structured, defined ways.  Tucker will be a fantastic research-type writer. This type of writing following a pattern, a system, an outline.  As far as creative/freestyle writing?  He will struggle because of the lack of structure.  BOTH of these types of writing are important and valuable to the world.

This is when reflection and writing becomes quite helpful.  I don’t need him to be ‘perfect’ in both or let’s be honest, in either one.  I simply need him to develop the skills to be competent.  These are moments when I think about Day #169 – My Child is NOT An Honor Student and I remember to focus on the ‘win’ while being a team-player with his teachers in finding a way to help redefine how we teach my child to become a more competent writer.

Let the thinking begin….

Day #232 – Baltimore & Why I’m Terrified

I know, I know…Baltimore is a mess.  My heart is aching for everyone involved.

Peaceful protests weren’t getting the message across.
Violent protests won’t get the message across.

What are we to do?  Why does this concern me?

It concerns me because my son used to act out when in an environment with too much stimuli.

When he was in 5th grade he was quite frustrated with something during class (this is me…not throwing anyone under the bus).
He walked out of class (which he was directed to do, if overwhelmed).
Someone approached him in the hallway, ‘amping’ up his very real frustration.
He went to the bathroom and beat on the bathroom door until it came off the hinges.

Gasp if you must.  In his toddler and early childhood years I was hit and kicked more than any human being should.  It was my reality.  Striking back at him simply made it all that much worse.  So, I became his punching bag…and when he was finished I held him and told him I love him.  I simply hoped and prayed that ‘this too shall pass.’

As he matured I was able to remove many of the barriers by being proactive.  As he entered late childhood I was able to stop him and talk before the frustration rose to violence.

It’s why I have a very strange understanding of Baltimore right now…when one is so overwhelmed and overcome with anger it rages to our hands, without thought.  Any emotional expert would tell you it is the physiological response to anger….blood flows to our hands to strike.  The physiological response to fear?  Blood flows to our large muscles to run. (Read Daniel Goleman’s Emotional Intelligence for more information on that – GREAT, book…like for real, AWESOME book!)

Tucker was so frustrated with life he tore a bathroom door off its hinges at school.  What did he do next?

The anger was released by striking.

So, then he went into his Special Education teacher (Read Day #226 – Saint Samantha) and told her.  They talked about why it was wrong – but that his frustration was RIGHT.  (This is just one example of why she was/is so amazing.  She condemned his behavior, but not his feeling.).  Then, they went and found the custodian.  Tucker’s punishment?  Helping the custodian put the door back on.

That is quality behavioral management…at least for a kiddo on the spectrum.

Regardless, he resides in a community where he was and is surrounded by love.  People work at understanding him and want to know him.  It’s just one of the reasons he has been able to develop more and engage in amazing coping skills.

But then I read stories like Kayleb Moon-Robinson’s

Kayleb is an 11-year-old from Lynchburg, Virginia.  At the beginning of the school year Kayleb was overwhelmed and kicked a trash bin during a melt-down (the news reports a ‘tantrum’ – please see the image below for the difference between a tantrum and a meltdown). This sounds remarkably similar to tearing off a bathroom stall door…

tantrums or meltdowns

 

He was charged with disorderly conduct by a school resource officer.

Two week later Kayleb left class early. This sounds remarkably similar to Tucker being able to take  ‘cool-off’ time…

That same officer forcibly took Kayleb to the Principal’s office.  When Kayleb struggled to get the officer to stop touching him (hellllooo….spectrum!!!)  the office slammed Kayleb down, handcuffed him, and charged him with felony assault.

On April 13, Kayleb was found guilty of both charges in juvenile court and is currently waiting his sentencing in June.

Kayleb has autism and is African-American.  According to the Civil Rights Data Collection by the Department of Education, “Disproportionately high suspension/expulsion rates for students of color: Black students are suspended and expelled at a rate three times greater than white students. On average, 5% of white students are suspended, compared to 16% of black students. American Indian and Native-Alaskan students are also disproportionately suspended and expelled, representing less than 1% of the student population but 2% of out-of-school suspensions and 3% of expulsions.”

I would guess that Kayleb’s ‘form’ of autism is much like Tucker’s – it’s not obvious, he’s verbal, he seems ‘normal.’  Did the color of his skin lead to this treatment?  I sure hope not…but with everything going on in our nation right now, I hate to completely discount color as a factor.

Please know that I am also not blaming the officer.  The officer simply mistook Kayleb’s misbehavior as a tantrum instead of as a child who simply needed extra help.  This is just one reason I advocate for EVERYONE who has contact with children to be trained/taught about the special needs that so many children have.  (Read Day #61 – Community of Understanding)

All of this causes me great distress because I don’t know – I don’t know how Tucker would react to someone he doesn’t know forcibly grabbing him.  Actually I do know…if his senses were heightened he would strike back, and hard.  It wouldn’t matter who the person was because the emotional reaction/charge supersedes the real or perceived power of that person.  He hit his mama, not because he was or is mean or naughty.  He hit his mama because his emotions were so heightened he had to release the anger.

I’ve never once been afraid of him – but there are moments that I am afraid for others who may not know or understand his reaction and the power that his body possesses.

It’s just one reason I keep preaching awareness, acceptance, love, and compassion.  If you feel this type of love and compassion for Kayleb’s story, please consider signing this petition to have him pardoned:   https://www.change.org/p/justiceforkayleb-an-autistic-6th-grader-unfairly-convicted-of-a-felony

Da #231 – MacAttack, Day 3

The day of the race was quite emotional.

When I decided to be part of TobyMac’s team I knew I was doing it for Tucker.

I also ran for heart health.  Saturday was Matt’s cousin, Joe’s, birthday.  Joe lived a short (but I’m told, quite full) life before collapsing during a pick-up basketball game. Although diagnosed with a heart problem, he continued to live his life.  I also ran in memory of Joe.  I also have some heart funkiness.  I also ran in defiance – my heart will be strong.

It was also the 33rd anniversary of an accident that changed my family’s life.  (Read Day #29 – Sibling Struggles).

Four pretty big reasons to run – so I was well-equipped with emotional fortitude.

Pre-race…

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What I wasn’t expecting?  The hills on this course.  The course was brutal.  In fact, upon reading comments from other runners (of course, post-race) I read this, “The total lack of an elevation profile on the website is just plain wrong-the race is brutally, non-stop hilly. First-time marathoners beware, either train on hills or skip this event.”

Well, I was a first-timer and I didn’t skip it, I finished it.

There was so much unexpected during and after the race. I’m still trying to sort it all out, so if this post seems scattered…just know that’s where I still am.

During mile one I realized that in my excitement to get going, I forgot to stretch.  How could I forget to do something so basic?  It reminded me of Tucker…how he can get so overwhelmed by what’s going on around him that he forgets the ‘easy’ stuff…deodorant, matching socks, putting on shoes, eating, etc.

So, I stopped and stretched for about 10 minutes.

During mile two my capri’s started falling down.  I realize that in my excitement I forgot to double knot.  How could I forget to do something so basic?  It reminded me of Tucker…how when his clothes don’t feel right he cannot function.

So, I stopped and fixed my pants.

Then – the hills began.  I didn’t train on many hills.  Here is the elevation graph.  It reminded me of Tucker…how when he doesn’t know what’s coming he has all sorts of anxiety.

So, I decided I would just have to grin and bear it.  With any hill…there is always the other side, right?  Yikes…it didn’t feel like it on this course…

elevation

I was doing okay..then, I got tired, really, really tired at mile nine.  I was really frustrated because my 10 mile traning run had gone SO well…how could I already be this tired?

Then, I saw this…

photo (6)

American soldiers.  Carrying backpacks.  I cannot imagine how much they weighed – but I knew their ‘load’ was greater than mine.  I grew to thinking about the loads that we all carried – and how some people’s loads are greater than others (Read Day #2o9 – ἔκστασις, εως, ἡ).  So, there I was – left thinking about the sacrifice of our soldiers and their families.  The time, the emotion, and even the lives that they give.  My life, all of a sudden, didn’t seem too difficult. I kept going…

At mile 10 I was passed by a blind runner.  I was SO moved by the crowd that surrounded him to keep him safe and lead him to victory.  In many ways, it reminded me of my faith.  How in all trials and tribulations there has been a larger presence guiding me.  When I have paid attention to that presence – my life nearly always feels like it’s heading in the right direction.  When I sway from that path or think I can ‘see’ on my own…that is when I run into confusion, hurt, and stress. I kept going…

At mile 11 I passed two runners with prosthetic legs.  I couldn’t help but think of their fortitude. The pain they had already bore…and here they are, running this race.  I thought about my brother and how blessed we are to have him.  Then I thought about Matt’s cousin, Joe, who lost his life early.  Which made me think about the pain of losing a child…could there be anything worse?  Then, I started to cry and I kept going…

I wanted to be done, I wanted to hold my children.

At mile 12.5 the announcer said, ‘If you are running the 1/2 marathon, you are almost done.  If you are running a full, you are half-way there.”  I couldn’t help think about the marathoners and how I COULD NOT imagine how much it would take to keep going.  Honestly, I had a moment where I thought there was no way they could be in their ‘right mind.’  I was ‘only’ running a 1/2 and during the race I saw those bike rental spots.  I contemplated renting a bike to finish….I really did.  I thought about stopping at a local watering hole and just having my hubby pick me up.  I thought about just sitting down and crying.

But, then I kept going…because my hubby sent me this message.

“We’re waiting for you under the 13 sign.”

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Not much more could have made me get a last push.  One of the other benefits of being on TobyMac’s team was that our families were able to ‘hang out’ in the Stadium Club at LP Field.  Yes, that is where the Titans play – and my football loving Tucker was in HEAVEN.  Free food, free drinks, AND a football stadium?  He was in heaven…but there they were…waiting for me.

I saw them and the tears started streaming down my face.  I was almost there – through the pain, through the mental ‘I can’s and I cant’s’ – through it all…I was almost there.  I kissed my husband and he held my face and told me how proud he was, tears were rolling down his face now.  The children held onto me.

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Tucker let go and said, ‘Mom – get going…you’re almost there.’  I laughed, turned away, and then  finished the last 1/10 mile.

Then, I sobbed.  I sobbed for so many reasons…

I sobbed for the burden that our fellow humans bear, often alone.
I sobbed because for the first time in my life I had someone I love at my finish line.
I sobbed because the ‘fat’ girl in me did this thing.  (See Day #219 – Tucker’s Sidekick:  The Fat Theatre Chick)
I sobbed because I outsmarted and outtrained my heart.
I sobbed because I made it, I was surrounded and guided to my victory.

Later that night someone asked me my time.  I don’t know and I honestly don’t care.  I simply said, “I finished.’  It reminded me of Jesus’ death.  Jesus said, “It is finished.” With that, he bowed his head and gave up his spirit.”  (John 19:30).

His death – brought us life.

Upon finishing this half-marathon I had a new understanding, new life.

A new understanding of struggle and battling.
A new understanding of sacrifice.
A new understanding of love.

I was exhausted the rest of the day (which is why I didn’t write) and in a bizarre twist, my flesh was willing – but my spirit was weak.

In the hours that followed I had a keen understanding of what it felt like to be Tucker in this world.  I had trained amongst Iowa trails with trees and silence and an occassional passerby.  I actually loved my training.  It was peaceful and rarely painful.

I ran this race with 27,000 other people, with bands along the way, with people cheering, with new faces, with colors and smells – with everything that I hadn’t encountered in my ‘typical’ runs.  I was emotionally and mentally drained because of all the stimuli.  I struggled to focus.  I struggled to make conversation.  I struggled to make decisions.  I struggled to walk without bumping into things.  I was crying every hour, for no ‘real’ apparent reason.  It was like my system was on complete sensory overload…and maybe that’s just what I needed.  Maybe that was the real purpose of the race, to have a new understanding of what his life feels like…every day.

This was truly one life experience I will never forget – for so, so many reasons.  For now though, I am proud to say, “I finished.”

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Day #230 – MacAttack, Day 2

Once we arrived in Nashville and found our hotel the entire trip was much easier…well, except for a couple of things I forget about because we live in rural Iowa.

It sounds a bit silly – but in our own comfortable environment I sometimes forget how many challenges we have removed or ‘learned to cope with.’  In a new environment – it’s just different.  He’s trying to make sense of so much.

The day begins with more questions…

What time?

Where?

How long will we be there?

How long will we stay there?

Who will be there?

What can I do?

We did the best we could do and finally my husband asked him to sit.  He sat across from him with a soda and said, “Tuck, we need to have a man to man.  I know that you like to know what is happening.  I know it makes you feel better.  I know it feels awful to not know. Your mom and I just don’t know all of the details.  I promise you that as soon as we know things we will tell you.  Have I ever led you astray or confused you or not been here for you?”

He answered, “No.”

“Okay then, I really need you to trust me.  Your mom has this race in the morning and it’s a really big deal.  She trained to run 13.1 miles for you.  So – we need to do the very best we can to help her be rested and calm so she can be ready to run.  No worries, okay?  I promise I will be right by your side.”

He answered, “Okay.”

Off we went to a spaghetti supper where Tucker got to meet and have his picture taken with TobyMac (well…we all did).

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Now, let me tell you about the excitement here.  After our photo, Toby agreed to autograph his new hat.

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The concert wasn’t far off…and I started to get nervous, but there was no need for nerves.

I was SO, SO, SO blessed by this entire event.  Little did Tucker know that I had done some recon work with the TobyMac folks.  I told them about Tucker and about why this concert meant so much to us.  Sure, it is awesome to raise money for a worthwhile cause…but to FINALLY have an opportunity to take my boy to a concert that he could at least have a chance of enjoying?  Heaven…just like heaven.

They reserved a row in a more ‘private’ balcony area for us.  It had an area that we could escape to and a bathroom only for the 40 seats in that balcony.  I had earplugs and sunglasses in my purse just in case it became too overwhelming.

The concert began, and we could NOT take our eyes of Tucker.  He was mesmerized.  I went over to check on him because he is so very self-aware and I knew would tell me how he was doing.

He put his arms around me, “Mom, this is awesome.  Thank you so much.  I love this.  He’s so great. I am seriously so happy right now.”

That sure made the idea of 13.1 miles worth it…

He also has a new favorite song.

It’s not a big surprise to me – he loves songs that have a ‘heavy beat.’

On our way home I asked about his favorites and what he learned.

#1 – My new favorite song is the one where Toby had a cane.
#2 – That God gives us ALL gifts and we should use those gifts to make the world better.
#3 – No matter who we are and we should love everyone.

That seems pretty complete to me.  Tomorrow’s blog?  Why I missed yesterday…it seems running 13.1 miles is exhausting!

Day #229 – MacAttack, Day 1

Well, the writing streak took a hit.  I hope you all understand – and I think you will after you read the next couple of posts.

On Day #94 – Whoops I Did It Again I wrote about my intentions to run a half-marathon.  For several reasons…

I love education.  Of all of my beliefs, this is probably the most strong.  I believe in high-quality education for EVERYONE.

I love God and stuff.  I have this thing about loving all people and talking, teaching, thinking about grace, compassion, forgiveness, and understanding.

I love to run.  Okay, not the beginning – but once I get started again I love exhilaration, the challenge, the zone.

I love Tucker.  Tucker has this thing called autism that prevents him from going to concerts.  Tucker loves TobyMac.

So, it turns out there was this thing called The Run for Hope (part of The Country Music Marathon).  Participants raise money for The New Hope Academy and in return get to meet TobyMac and attend a private concert.

Well, that happened this weekend. It was a phenomenal experience – for so many reasons.

First, if you’ve been reading this blog you know that one of the quirks about people on the spectrum (and let’s be honest…lots of other folks too) is that they thrive in a highly scheduled, highly planned, highly organized environment. This is especially true for Tucker.

One time we decided to go to the movie store and didn’t tell him we were going.  He tried to open the door while moving because he didn’t know where we were going.  NOT an exaggeration, NOT a lie – and it happened six months ago.

Problem #1 – We really had no idea what this concert/run weekend would look like.  We made the choice not to tell Tucker.  He doesn’t like to leave home, he doesn’t like to travel outside of Iowa (and sometimes within Iowa), and he certainly doesn’t like to go places that are unfamiliar.

So, we decided to keep the trip a secret.  His friends knew, his teachers knew – pretty much everyone around him knew – they also knew how important it was to keep the trip a secret.  I know, some of you may be thinking ‘that’s awful’ – but hedged our bets and it worked.

Estelle was in the Middle School play, The Wizard of Oz, on Thursday night.  On Wednesday night and Thursday I spent the day secretly packing and preparing.  I had to have everything in the vehicle ready to go before I picked him up from school on Thursday.

Mission Accomplished.

After her show we all piled in the Suburban. Let me preface this video by sharing that I have been debating whether to share or not.  It’s private and makes my heart melt a bit.  I asked Tucker and he wanted me to let you all see – he wants you to be part of his story.  Now, he likes watching the video and reliving that memory.

My husband thinks it’s good to share because of how the video begins.  Me saying, ‘Tucker, I need you to pay attention.”  I guess this doesn’t happen in typical conversations?  He’s right, it doesn’t  – but it’s become such a huge part of our life that I don’t recognize that as being anything BUT typical.

You’re going to hear me tell Tucker that we are going to Nashville and that his friend Austin is already there.  His first concern? The dog, Sox (Read Day #122 – Animals Belong Outside, Right?!?!?)

I stopped the video because I could tell he was quite concerned and I had no interest in recording him in a moment of distress.  If you are emotionally intelligent at all – you can see the worry begin.  Again, Tucker wanted me to share the video – he thinks it’s a great story.

What happened next?  An hour of questioning…

How long would it take?
When would we get there?
Was I sure Austin was really there?
What time did he leave?
Did I bring his iPad?
Where are his clothes?
Where are we staying?
When is the concert?
Where are the seats?
Will it be loud?
What kind of spaghetti will be at the supper?
What kind of other food?
What is our hotel number?
What states will we go through?
What kind of snacks do we have?
Is there a pool?

That’s just the tip of the iceberg…I promise.  As he began asking questions, I backed up.  We told him the story – from the beginning…from that December day when I decided to begin training.

90 minutes later…he fell asleep. Eight hours later, he woke up, in Nashville.

Day #228 – Creating Dramatic Worlds on the Spectrum

More from my Queen of Fantastical’ness friend, Gretta…

In addition to the weekend run of WONDER land, UNI will play host to the Autism and Arts Education Symposium. College students, teachers, faculty, medical professionals, and artists from dance, music, theatre and the visual arts, under the visionary symposium leadership and coordination of my friend and colleague Kevin Droe, will come to Cedar Falls to exchange insights, ideas, best practices, frustrations and joyful successes.

I am honored to be asked to not only share my production of WONDER land as a conference event, but to present a session that further explores my work. I LOVE talking about my work and sharing it with others. I try to do so by offering ideas, strategies, and considerations. Often this approach frustrates those who come to hear me. What they really want to know is HOW do I teach drama to youth on the autism spectrum, a question that is impossible to fully answer in 60 minutes. It’s like asking a parent of child on the autism spectrum to, in one hour, tell you everything you need to know and do about raising a child with autism.

So when the inevitable question “How do you teach drama to youth with autism,” is asked, this is the answer I share: “You begin by changing your lens.”

Typically this is followed by complete silence and that “deer in headlight” look that signals confusion. So I follow up with this exercise.

I ask the individuals in the room to turn to a partner. I ask them to each extend their right hand towards each other. I ask them to curl their four fingers and to “hook” their four fingers with the fingers of their partner, and then to extend their thumb skyward. (see Image below for illustration).

thumbup

Then I tell them to get their partner to put their thumb down.

In almost every instance, pairs of participants in my workshop setting will begin to play the game “Thumb Wrestling.” I haven’t told them to do that; I’ve merely set the stage, generated an IMAGE and organized a physical prompt that they ASSOCIATE with thumb wrestling. After they thumb wrestle for a minute or so (winners often “high fiving one another on their victories), we discuss the activity. We talk about their choices, what they did, the strategies they utilized. And then I ask them to reconsider all of it. I ask them to play one more time. And then I remind them that all I asked them to do was that they get their partner to put their thumb down.

And that is when the proverbial light bulb goes off. You can almost hear their collective minds coming to the same AHA…there is another way?!?! And then, just seconds later, all around the room, NEW ways of solving a problem, approaching a challenge, playing a game, and offering a solution abound. Some simply ask their partner to lower their thumb. Some use a playful trick. Others turn their “hooked” hands completely upside down, creating an opportunity for them to BOTH win. It’s the most beautiful thing to watch; pairs of people finding such joy in the discovery of a new approach.

That is what I mean by a new lens.

Teaching and devising and creating for and with youth on the autism spectrum has completely changed my lens as a teacher, as an artist, as a director, and as a PERSON. My vision has grown from 20/20 to something way more “visionary,” something more encompassing, and definitely something more INCLUSIVE.

My old lens suggested that I prepare a lesson or a play or an event for “typical” youth in the “typical fashion” to which I was trained and then to “diversify as needed” for any “atypical” participants. My new lens has reversed that…I start all of my work by placing my spectrum students at the center, and build from there. What I have discovered is that the way I work with Spectrum Students completely works for non-spectrum youth; in fact, the drama and theatre work for BOTH groups is so much better overall. Go figure!

My “old lens” modeled telling stories using words and actions. My new lens urges me to try sharing stories with visual images, clear gestures, and only enough words to bridge them together. Another aha…all groups are more engaged in the stories are share and their dramatizations are much clearer.

My “old lens” generated lessons that largely asked students to tap into their imaginations to create dramatic worlds. My “new lens” teaches students to imagine, and lovingly guides this new found skill into helping them discover the world of drama. And guess what…those dramatic worlds are so much more clear, so much more interesting and so much more alive.

If you have a chance this weekend, come and see WONDER land. Sit in on any of the amazing sessions and keynote presentations that will happen this weekend at the University of Northern Iowa. Live too far away…engage in the symposium virtually, by reading about the exciting work being shared by so many incredible people on the website. Leave your “old lens” at the door, and be prepared to see the world from a whole new perspective.

Day #227 – Spectrum Theatre

Let me tell you about an amazing experience we had last night.  I invited my former Professor turned friend and mentor, Gretta, to write a blog for today.

Why?  Well – she’s full of amazingness.  The first time I met Gretta she was the Department Head of the Theatre at the University of Northern Iowa.  I walked into her office and she had her feet on her desk, painting her toenails.

I knew right away she was full of awesomeness…and no matter how much time passes between our meetings it seems that the universe keeps pulling us back together.  This time?  Spectrum Theatre.

Imagine the Possibilities: Creating Dramatic Worlds for Youth on the Autism Spectrum

It is January 2005.

A 14-year-old boy attends my after school drama club at a local middle school. I am immediately struck by his nearly non-use of language; his discomfort to make eye contact; his confusion as he observes typical adolescent behaviors and humor. Two class periods later I meet his mother, and learn that Jonathan is on the “autism spectrum.” Unsure how best to support him in his theatre and drama work, I begin reading anything I can find about autism.

I learn that 1 in 100 children are diagnosed annually.
I learn that resources for parents, educators and the medical community are few.
I learn there is not a single resource to guide me in the use of theatre or drama with this population.

Determined to find a way to help Jonathan find his theatrical voice, I experiment with a variety of approaches and to my delight, discover that role play is where his talent lies. His keen observation abilities translate into delightful characterizations and he is adept at imitating voices. And in doing so, he finds his own. Jonathan goes on to perform in numerous plays both at school and in my summer Sturgis YouthTheatre Company.

 It is January 2011.

I am working with Spectrum Specific youth in a variety of in and after school venues in order to discover best practices for providing drama and theatre experiences for serving autistic youth between the ages of 6-12, a population that now numbers 1 in 88. I have been working for nearly eight weeks, 5 days a week, with a group of 8 boys, all with autism, most with limited verbal skills. In an effort to teach them to play pretend through modeling and imitation, we are playing pirates for what feels like the 118th time. We have built a “boat” from tables and cardboard boxes and tubes. Bandanas on our heads serve as our only costumes. There are lots of hearty arggh’s being shared but not much else. One of the boys wanders “off” the ship.

And then the miracle happens.

One of the other boys shouts “Man Overboard. Man Overboard.” And suddenly, seven pirates are working together to “sail” the boat to save their fellow pirate at sea. As they find their voices, their dramatic action, their delight in playing pretend and socializing with another I can only cry enormous tears of such joy that I think my heart will explode. That dramatic breakthrough paves the way for so many more.

When people ask me “Why do you want to do theatre work with kids who have autism?” these are the stories that come to mind as I reply “Because they let me.”

 And now it is April 2015.

One in 66 young people are identified as being on the autism spectrum. My own work with this population has expanded to include the development of theatre pieces that are conceived, created and performed specifically for and with them in mind during every part of the process. What does that mean?

 As an artist, it means creating a piece of theatre that captures the essential “essences” necessary to tell the story. It means selecting the single word, best gesture, perfect sound, the key interaction that will carry an audience of young people into and through the world of the play. It means leaving language on the cutting room floor and instead, creating a series of highly visual images that captivate with movement and communicate without words.

As a director, it means crafting images, interactions with the audience, and visual statements that are clear and inviting and participatory. It means taking all of the seats out of the performance space and replacing them with rocking chairs, and bean bag chairs, and sensory discs and carpeting. It means never making the theatre dark and helping my audience prepare for change with a consistent visual or audible cue. It means making the actors and stage accessible by inviting my audiences to play along, to play a part, to participate in the play.

But don’t take my word for it; come see and explore and engage for yourself. My latest creation, developed in collaboration with 17 UNI theatre students, playwright Cynthia Goatley and designers Mark Parrott and Amy Rohrberg, will play this weekend on the University of Northern Iowa campus in Cedar Falls.

WONDER land is a 60 minute piece of theatre inspired by Alice in Wonderland and developed with love for all youth, but especially for those on the autism spectrum. The journey begins at 7:00 p.m. on Friday April 24, and continues Saturday, April 25 at 2:00 p.m. and 7:00 p.m. and Sunday April 26 at 2:00 p.m. Get tickets by calling 319-273-4849.

What was our experience last night?  A WONDER land sneak peek…and it was beautiful.

We walked into the theatre and Tucker’s first words, “It smells like a theatre in here.”

I laughed…there he is, my sensory child.

Then he saw the seating arrangements and smiled.
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Then he found his place – complete with a beanbag on top for ‘pressure.’

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The play began.

The actors asked him to participate…once.
“No thank you.  I’m okay.”
The actor nodded and left.

Two.
“No thank you.  I’m okay.”
The actor nodded and left.

Three.
“No thank you.  I’m okay.”
The actor nodded and left.
He looked at me.  I mouthed, “It’s okay – you should try it.”

Four.
He looks at me, I nod.
With hesitation, “No thank you.  I’m okay.”
The actor nodded and left.

Five.
“Okay.”

Six.
“Okay.”

My heart nearly jumped out of my chest.  There he is…my boy…participating in something that is so near and dear to my heart. (Of course, Estelle jumped at her first chance…lol…her mother’s daughter, for sure!)

His later response?  “I loved that they kept asking me.  I wasn’t ready yet.  They didn’t force me, they waited until I was ready.”

DING! DING! DING! DING! DING! DING! DING! DING!

He LOVED the show, we all LOVED the show.

If you are in the Cedar Falls area, go to this show.

If you are not in the Cedar Falls area, contact me – let me put you in touch with Gretta.  She will do amazing things for your child on the spectrum.

Day #226 – Saint Samantha

Sometimes The Mighty puts out an all-call to their authors for specific types of blogs.  Today I received a message asking for 200-500 words describing a moment when that person went above and beyond to help you or your loved one.

We have been blessed with amazing teachers.  Soon, I will devote an entire series to his amazing regular classroom teachers – but for now, it’s his special education teachers.

If I were to choose someone it would be my beloved Bonnie, his K-2 special education teacher.  The thing is that early on it’s nearly impossible to separate who taught whom more.  Sure, she was Tucker’s teacher.  But she taught me so much.  Most importantly?  She taught me it would all be okay. She taught me about acceptance.  She taught me about patience.  She taught me about saying the word autism.  She, in many ways, taught me how to be the mom that Tucker needed.

If I asked Tucker to choose, it would be Samantha.  I don’t have nearly enough words left to talk about our beloved Samantha.  She is one-half angel and one-half saint. She is remarkable.

Who?
Samantha.

200-500 words?
499 left.

A moment?
Impossible to choose.

She was Tucker’s special education teacher during his 5/6 years and she will forever be a part of our family.

When Tucker graduates from High School, she will be top on the invite list.
When Tucker graduates from College, she will be top on the invite list.
If Tucker gets married, she will be on the invite list (maybe not the top…I will be the mother of the groom, you know ;))

Words alone cannot describe Samantha.  She understood and understands Tucker on a level that most cannot.

She is the reason my heart-felt calm, the reason my head felt clear, and the reason I smiled when dropping him off at school.  She was so much more than ‘just’ a teacher.  She was his advocate.  She was his friend.  She was his confidant. She still is his advocate, his friend, and his confidant.

Everyday.
She knew when to challenge and when to let go.

Everyday.
She was able to get the very best from him.

Everyday.
She forgave and started over.

Everyday.
She had hope.

That’s what she did for us….

What did she do for Tucker?  Just ask him…

“Tucker, I want you to tell everyone that reads the blog about Ms. Brandel.”
“Mom, she’s a Mrs. now.  She’s Mrs. Corsbie.”
“Ah…yes, I misspoke.”

At this point my sweet boy gets a big smile and his eyes begin to sparkle.  He wraps the blanket around himself a little tighter and pulls it over his face.  In case you don’t know – this is a sign of comfort.  He’s thinking of her and how she makes him feel…calm, happy, accepted.  The two of them just had that thing…that thing that cannot be described. Then he begins, it’s all jumbled together and comes out at lightning pace, but I think I transcribed it all.

“She is an amazing teacher.  Even though a bunch of students yell at her and sometimes hit her she keeps her calm.  She was one of my favorite teachers.  She let me read and her room was a safe place.  I went there if I was angry.  I felt very glad to have a safe place to go and she never got mad at me.  Instead she just explained why other people did what they were doing.  She never blamed me and always asked my side of the story.  She could always understand me because she knew what I meant when I was explaining. She always believed me.

My favorite thing to do in her class was her read.  She let me read in some special comfy chairs and they made me feel at home and happy.  She also had snacks for me because she knew that I get grumpy when I’m hungry but I can’t always tell I’m hungry.  It’s weird and I don’t really understand it all – but you [mom] and Mrs. Corsbie do.

I always wish I was back in her class, it’s where I felt the happiest.”

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Thank you, Samantha, for being a saint and our angel.

Day #225 – The Trouble With Taffy

On Day #144 – Divine Lies, I introduced the idea of Theory of the Mind.  From Theory of the Mind comes the idea of mindblindness.  I spent Day #189 – He Feels When It’s Real  explaining that concept.

Mindblindness is the idea that an individual is unable to put meaning on the experiences on another person and therefore unaware of another’s mental state. There is plenty of research to support the idea that folks with autism have a certain level of mind blindness.

One of the ‘side-effects’ of writing this blog is that I’m really loving all of the reading and researching that I ‘get’ to do.  I’ve always done a lot of reading about the uniqueness of my son – but this blog ‘allows’ me to spend even more time.  I research with my husband, with Tucker, and with Estelle.  We spend time talking about our realities and what we read.  It’s truly been a learning and reflecting experience for all of us.  My new love?  Context Blindness.

Even when I wrote Day #144 and Day #189 I didn’t like the word ‘Mindblindness.’  It feels yucky. But, I get it – there will always be words that I don’t like, because autism is still relatively new.  We’re all still negotiating terms and working it all out…

Does someone ‘have autism’ or are ‘they autistic?’ (I prefer ‘have autism’- see Day #35 I’m a Neurotypical)
Is someone ‘high’ or ‘low’ functioning?  (I prefer neither – see Day #204 – Spectrum Apologies)

Today I experienced something that describes our communication perfectly.  Minblindness is the idea that he is unable to think about what another is thinking…that may be true.  I LOVE the idea of Context Blindness and I think it’s a much better fit for what we experience daily in our house.

The idea of Context Blindness was first introduced to me in this article, Autism: From Mind Blindness to Context Blindness (http://autismdigest.com/context-blindness/).  This article sets forth the idea that, “The human brain, through its evolution, has learned to interpret situations by taking context into account…On a conscious level context helps us think through how we should react and what choices, such as a birthday gift or a response, we should make. Context gives meaning to the stimuli our brains receive…Context blindness refers to a reduced spontaneous use of context when giving meaning to a stimulus. To put it more simply: the autistic brain thinks in an absolute way, rather than a relative, contextually defined way….Here is [another] example of context blindness: When the doorbell rang, the mother of a seven-year-old boy with autism asked him to open the door. He opened the back door instead of the front. His reaction was logical, but his choice of door was out of context.”

I was reminded of this article today.  How does this manifest itself in a conversation?

Check this out.  On the way to school this morning….

“Mom, we’re so getting ripped off with Taffy prices being like $2 or $3.”
“Excuse me?”
“Taffy, mom.  Taffy.  I can’t believe how much we’re getting ripped off.”

You can imagine my confusion at this point…

Inside Voice: Where is the taffy?  What taffy are we specifically talking about?  Where did you see this taffy?  Why are you so interested in taffy?  It’s 7:50 AM…what is up with the taffy?!?!!?  Are you hiding taffy in your room?  Are you eating taffy for breakfast?

External Voice:  “Tucker, I am just not following you.”
He says, “Forget it.”

If there is ONE thing everyone needs to learn about having these conversations it’s that you cannot allow these children to go to the ‘Nevermind’ or ‘Forget it’ route.  It’s often difficult enough to engage in a true reciprocal conversation. So I NEVER let him get away with the ‘never mind’ or ‘forget it.’  Instead I continue to patiently engage him.  This time by saying,

“Tucker, I want to understand what you are saying – but I am just having troubles following you.  It must be that it’s too early in the morning.  Can you please start at the beginning again. I really want to know.  Please, help me.”

He sighs, often if I blame it on myself he’s more likely to continue.

“Okay.  At the pool mom.  At the pool Laffy Taffy is like super expensive and I know it’s not that much in regular stores.  So, last June when we were at the pool – they are ripping us off.”

Inside Voice: Oh…of course – we are in April 2015 referring to something in June 2014 without any CONTEXT to help.

Outside Voice:  “Oh.  I get it Tuck.  Thank you.  Yes – that does seem excessive, doesn’t it!”

Then we went to Kwik Star and he headed straight towards the Laffy Taffy to check the prices on ALL Laffy Taffy pieces he could find.  He was yelling at me from across the store…

Mom, the big hunks are $1.99.

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Mom, the ropes are 3 for 99¢

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Of course, there were three of us – so we ended up with three ropes.  Quite a deal that taffy is…as long as you’re not at the pool.

Trust me, I know I will hear about this Laffy Taffy issue again – now that I’ve blogged about it I will have a MUCH better chance of remembering the context of the situation…or at least the jokes on the wrappers.

What was the name of the Headless Horseman’s Horse?

Night Mare

Sort of like trying to have a conversation when you are missing the context….