Day #204 – Spectrum Apologies

I hate the terms ‘high’ and ‘low’ functioning.

I don’t know how else to describe the spectrum differences.

So, I’m sorry –

I’m sorry that I have ever said those words.

I’m sorry (in advance) for the times I will say those words in the future.

I’m sorry that those words seem to be the ‘go-to’ in describing the complexity of the spectrum.

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Through writing this blog I have met and heard stories of so many.  So many like us and so many so different from us (whew…that is A LOT of ‘so’s in one sentence).  If you didn’t have a chance to read about seven really amazing (and amazingly different) children on the spectrum check them out…

Day #154 – A Celebration of the Spectrum:  Meet Brandon
Day #155 – A Celebration of the Spectrum:  Meet Isaac and Noah
Day #156 – A Celebration of the Spectrum:  Meet Carter
 Day #157 – A Celebration of the Spectrum:  Meet Garrett
 Day #158 – A Celebration of the Spectrum:  Meet Kathy
Day #159 – A Celebration of the Spectrum:  Meet Michael

Maybe it’s being a good Lutheran…the guilt that I have.  The guilt that I hold onto.  All of the guilt of how ‘typical’ Tucker can be.

  • Tucker talks…a lot. So, when I hear stories about children who have autism that are nonverbal, I’m sad.
  • Tucker goes to school.  So, when I hear stories about children who can’t go to school, I’m sad.
  • Tucker has friends.  So, when I hear stories about children who feel so alone and isolated, I’m sad.
  • Tucker sleeps.  So, when I hear stories about children who are awake for hours, I’m sad.

Then…I remember that we have our own challenges.  It’s not so ‘obvious’ that Tucker has autism.

  • Which makes it much more difficult when there is a meltdown.
  • Which makes everything about school a bit more challenging.
  • Which makes leaving social situations more troublesome
  • Which makes it more difficult to explain…just about everything.

The thing is this – I know for some in the ‘autism community’ there is a division between the functioning level of our loved ones (ugh…see…there it is again!).  I don’t like this, I don’t like it one bit – I don’t even like the way that sentence sounds.  I once read a fellow blogger’s site where he wrote something along the lines of, “Oh…your kid is on the spectrum.  I know what that means.  That’s not real autism.”

Ugh.

It is real autism.  It’s different from your experience, but it’s still very real.

Tucker is sometimes ‘higher-functioning.’ He talks…although much of his talking is scripting…so does that still count?

Tucker is sometimes ‘lower-functioning.’  He cannot focus in sensory rich environments…although if given supports he does fine…so does that still count?

The confusion exists and persists.  One of my favorite quotes about this comes from Laura Tisoncik.  She wrote, ‘The difference between high functioning autism and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.’ (http://www.autismmind.com/Blog_Entry_srk/Eliminate_Labels_High_Functioning___Low_Functioning_bek/)

We must, as a community of people who have autism or love someone with autism, come together and reconcile those differences.  We all have a story to tell, we all need to show AND experience love, compassion, and understanding.  This coming together must begin with listening and non-judgement of who has it ‘worse’ or ‘better.’

Your story and experience is important to our collective story.

United we conquer, divided we fall.

Day #203 – I’m Gonna Light it Up!

It’s almost here…April.

April has been designated as Autism Awareness month and April 2 is Autism Awareness Day.  On this day, several of us will celebrate by Lighting it Up Blue.  This campaign began in 2010 by Autism Speaks.

On the night of April 1 landmarks around the world Light it Up Blue.

Which landmarks you ask?

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Great Buddha of Hyogo in Kobe, Japan.

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Sydney Opera House in Sydney, Australia

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Tianjin TV Tower in Tianjin, India

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Christ the Redeemer Statue in Rio de Janeiro, Brazil

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Niagara Falls in Niagara, New York

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Burj Al Arab in Dubai, United Arab Emirates

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Eiffel Tower in Paris, France

Those are only a few.  This year over 10,000 buildings and structures have registered to Light It Up Blue for autism awareness including Egypt’s Great Pyramids.

Here is where the problem lies.  Some folks will not participate in Light it Up Blue because it was created and promoted by Autism Speaks. From the Autism Speaks website, “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.”  (https://www.autismspeaks.org/about-us)

Seems like a great organization, right?

As with any great organization there are detractors, wherein lies my personal struggle.

When we received our diagnosis and I googled ‘autism,’ Autism Speaks was the first choice I clicked upon.  I was presented with a great amount of information and help.

Autism Speaks is the largest advocacy organization for autism and I will address three of the largest concerns about the organization below.

Must of the money raised by Autism Speaks goes toward research that is focused on finding a way to eliminate autism.  Thus making the ‘statement’ that something is wrong with people who have autism.

How do I feel about that?  Ugh.  There is a constant push and pull in my brain about whether I would choose to ‘cure’ autism.  Autism does make Tucker who he is…and I love that.  However, when I see him struggling and frustrated?  I would like autism to go away.  As most parents – I don’t want him to hurt or struggle.

When I think about this I often think of parents who have children further on the spectrum than my own.  I can only speak for my experience.  If my child couldn’t talk?  If he couldn’t go to school?  If he couldn’t feed or dress himself?  I can’t say…I just can’t say, either way.

Autism Speaks does not have a single autistic member on their board.

True.  Upon further investigation and reading of the biographies listed here is what I found about board members and staff.

  • Curtis Arledge and his wife, Diane, have a son on the autism spectrum.
  • Sallie Bernard has two children, one of whom has autism.
  • Matthew Higgins has two children, one of whom has autism.
  • Adrian Jones is the father of a child with autism.
  • Brian Kelly and his wife, Patricia, have six children, one of whom has autism.
  • Shawn Matthews and his wife, Monica, have four children, one of whom has autism.
  • Gary Mayerson is married and has a family member who is diagnosed with autism.
  • KEvin Murray and his wife, Susan, have three children, one of whom has autism.
  • Stuart Savitz and his wife, Amy, have two children, one of whom has autism.
  • Laura Slatkin and her husband, Harry, have two children, one of whom has autism
  • David Wittels, and his wife, Cindy, and two children, one of whom has autism.
  • Bob and Suzanne Wright who started Autism Speaks and have a grandchild who has autism.

So, no – none of these people have autism directly.  Of the 30 persons listed directly on their website, 13 self-disclosed a child, grandchild, or family member who has autism.  The other members had backgrounds in finance, marketing, education, law, and medicine.

Do I think having a person with autism on the board would make sense?  Sure.  Is it a deal breaker?  Not for me.  When reconciling in my brain I consider our Cabinet – maybe this will help put it into perspective.

  • Does the Secretary of the Treasury, Jack Lew, have any previous banking experience?  Nope…he was an attorney.
  • Does the Secretary of Defense, Ashton Carter, have any previous military experience?  Nope…he studied physics.
  • Does the Secretary of the Interior, Sally Jewell, have any previous experience in conservation or park management?   Nope…she studied to be an engineer and previously worked in the oil and banking industries.  She is, however, the former President of an outdoor gear retail company.
  • Is the Secretary of Agriculture, Tom Vilsack, a former farmer?  Nope…he was an attorney.

I could go on through the entire Cabinet – but I’ll save you the boredom.  I think my point is made.  Yes, I think it would be great for a person with autism to serve on this board – but is it a necessity?  I don’t know.  I think I would be pretty qualified to serve on this board, seriously – how about a mom/teacher/blogger from the middle of Iowa (wink, wink)?  At the same time, I think if someone asked Tucker he would think it was a complete waste of his time.  He’s too busy living and just being himself.

Autism Speaks only spends 70% of their budget on services.

The Daily Beast, an independent and original reporting agency reported that, “A comparison of 2012 income tax forms found through theUrban Institute shows 70.9 percent of Autism Speaks’ revenue is devoted to program expenses, in comparison to 79.8 percent of the Autistics Self-Advocacy Network’s and 91.5 percent of the Autism Science Foundation’s. Autism Speaks declined to comment on its financial matters.

While Autism Speaks is much bigger and has a larger staff than both of those organizations, the difference in money spent on “current officers, directors, trustees, and other key employees” is striking…the Autistics Self-Advocacy Network spent just $65,000 on this class of employees. That was to cover the salary of its president, Ari Ne’eman. In comparison, the former president of Autism Speaks, Mark Roithmayr, had a salary of $436,314.” (http://www.thedailybeast.com/articles/2014/06/13/autism-speaks-but-should-everyone-listen.html)

Do I think $426,314 is ridiculous?  I sure do – I’m not sure ANYONE is worth that amount of money.  However, when considering the background of those on the Board of Directors – it most likely pales in comparison to what they could earn in the ‘for-profit’ world.  These are folks came from the likes of BNY Mellon Wealth Management, Deutsche Bank, Samsung, Merck, Estee Lauder, Miami Dolphins, New York Jets, Jet Blue, Goldman Sachs, SiriusXM, Fox Sports, Allstate, Ford, GM, BMG, Cantor Fitzgerald & Co., FX Network, and American Express to name a few.

I’m not helping to make excuses – but people like this don’t come cheap.  People like this come with lots of connections.  The type of connections that allow over 10,000 landmarks to Light it Up Blue.  The type of connections that allow for a strong internet presence.  The type of connections that helps for strong advocacy.

It seems in many areas of life there is always a trade-off…

Do I think it’s right that so much money is spent on staff salaries and benefits?  No.  Is it necessary to have the type of reach that Autism Speaks has?  Probably.

The problem, to me, seems more systematic.  It’s a larger issue than just Autism Speaks – it’s how lobbying, advocacy, legislation, research, and social movement have come to intersect.

So, I will choose to Light it Up Blue – because ANY type of advocacy, ANY type of knowledge dissemination, ANY amount of attention is good for helping others understand autism.

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Day #202 – Autism & The Liberal Arts

One thing I’ve learned in my lifetime is that you just never know when something you learn will come in handy.

First, let us be clear that the term ‘liberal arts’ has nothing to do with being a liberal or conservative.  Now, keep reading…

I was reminded of this today after reading an article last week. The article from The Washington Post touted the importance of a liberal arts education, Why STEM Won’t Make Us Successful.  My favorite quote included was from Steve Jobs, “it’s in Apple’s DNA that technology alone is not enough — that it’s technology married with liberal arts, married with the humanities, that yields us the result that makes our hearts sing.” http://www.washingtonpost.com/opinions/why-stem-wont-make-us-successful/2015/03/26/5f4604f2-d2a5-11e4-ab77-9646eea6a4c7_story.html

That makes my heart sing.

Why?  Two reasons…

1.  Were it not for my liberal arts education I would not be nearly as equipped to help Tucker become all that he is meant to become.

2.  There is not a more important piece of Tucker’s education than a full liberal arts focus.

Allow me to focus…

The point of a liberal arts education was based in the idea of creating a citizenry that has the skills for leading ideals that support freedom.  Literally – the term liberal arts comes from the Latin ‘rates liberales’ which means the subjects that free persons should study.  The verb ‘to educate’ in Latin means ‘to lead.’  Therefore…the main purpose of a liberal arts education is to lead in a free world.

The areas that are most often supported in a liberal arts education come from the idea that humans should learn from a holistic approach – not simply academics but also to support areas of emotional, social, ethical, and personal growth.

Still interested?  Read Humanity, Diversity, and The Liberal Arts:  The Foundation of a College Education by Joe Cuseo and Aaron Thompson.

Was that nerdy enough for you?

Perfect – it’s the point of a liberal arts education.

Over the past couple of days I have made posts that have made my interest in research and learning incredibly obvious.  Today, I received a message from a person in England that was impressed by, ‘all of the research you have done.’

Correct.  I have initiated and completed quite a bit of research.  How did I learn that?  From my liberal arts education.

From the courses that I took that required me to read and to read deeply, to look beyond words – to do and understand rhetorical analysis.
From the courses I took that required me to understand statistics and how they are used to validate new ideas and concepts.
From the courses I took that gave me a broad understanding of educational theory.
From the courses I took that taught me about schools of thinking…yes – Plato, Socrates, Aristotle, Sophocles
From the courses I took that encouraged me to understand and develop an appreciation for different people and cultures.

Not just from my courses though.  From my full liberal arts experience…

From being on a debate team and learning how to REALLY research
From being involved in theatrical performances where I learned how to really emulate and understand the feelings and experiences of the other.
From directing performance and understanding different modalities of motivation.
From having Professor’s who challenged me to think beyond what I saw, heard, or read.

All of the ways that I am able to help Tucker came through a strong liberal arts education.  I needed that background to be able to teach him, advocate for him, and understand him.

Why is all of this important to Tucker?

He gets science, technology, engineering, and mathematics (STEM).  Those areas are his natural tendencies.

He NEEDS a liberal arts education to be a more balanced human and develop skills that will allow him to lead in this free world.  Please don’t take away his opportunity to use his naturally occurring STEM skills in a humanistic world.

If the current rate of autism diagnosis is 1 in 68 children – that in itself is an argument to treasure our liberal arts programs.  Currently 11, 928 student attend the university where I teach.  While oversimplified – this would mean that approximately 175 students on our campus would experience a spectrum-world.

It is a bold statement…but I would argue that these students (from my own personal experience) need the emotional, social, ethical, and personal growth supports that a liberal arts education provides.  It’s not a ‘bonus or benefit’ for them, it is a need.

Policymakers – if you are listening here, please pay attention.  My Tucker needs to be taught by teachers who experienced a liberal arts background.  He needs people to present him with varying humanistic viewpoints.

He is the epitome of what Jobs describes – his DNA is in the technology – but his heart needs to be carefully cared for.

Why?  So that he can create and develop STEM ideas that make a difference in our free society.  Without knowing and understanding the human condition…how can he use his skills to advance our free society?

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Day #201 – Advocacy Video

In the post Day #121 – Advocate Part 3 I explained a presentation that Tucker did in front of his 6th grade class.  Many of you asked if I had a video.

In fact, I do.

I often do presentations to organizations.  This one happened to be to a High School Child Development class last fall.  The first part of the video is me talking about the ‘sensory’ piece of autism.

The ‘colander’ experiment begins at around minute 34:00.  Please feel free to skip ahead if you want!

I will tell you this is not the best work I can do – but it’s good enough for right now.  It’s good enough for you to get the general idea.  If you know anything about video editing you know it can (and often) takes HOURS.  This took me two hours to edit and six hours to upload – which is the reason it is about five hours late of my ‘daily deadline.’ So if the transitions are a bit choppy and the sound is wonky at times – forgive me.

 

Day #200 – Stop Reading This Blog

It seems like I skipped a day…I didn’t.  When I looked back I actually had two posts for day #192.  Overachiever, I know. So – here we are.  Post #200.

Stop reading this blog.

Well…not really.  I hope you don’t stop reading this blog…but sometimes we need a break.

A break from the spectrum, a break from this thing that is our reality.  A break from the ‘on-edge,’ a break from the ‘I hope this goes well,’ a break from ‘preparing for a concert,’ a break from it all.

As with anything we can become overwhelmed with all of the information that comes our way.  It’s part of living in this digital age.  In the world of Communication Studies we refer to this as ‘Analysis Paralysis’ in that a person becomes so inundated with information that they are unable to make any type of choice. A few years ago I read this on a blog post, “analysis paralysis uses the remote dream of some unrealistic, perfect future state to avoid taking action in the here-and-now. It’s a holding action. Nothing moves or changes, and therefore no growth occurs.  There’s no way around it: growth involves discomfort and pain. No pain, no growth. You won’t start growing — and learning — until you start doing things. You don’t know what you don’t know, and no amount of analysis will ever tell you.”  (http://communicationnation.blogspot.com/2005/11/do-you-suffer-from-analysis-paralysis.html)info-overload-21-300x300

It’s from 2005 – but that idea stuck with me for quite some time in a variety of avenues, simply recall Day #175 – Imperfectly Perfect.

I remember a time about two years ago – I was drowning.  Analysis paralysis.  It was 5th grade.  It was a rough year at school.

I was exhausted.  Exhausted.

from all the research
from all the advice
from all of the emails from teachers
from the social media outlets
from the blog posts

Exhausted.

The more I took in, it seemed the less I knew.  The less I trusted myself.  The more I blamed myself.  As I read the research about what ’causes’ autism…

Please, before you judge the validity of any of the arguments/articles – put yourself in my (and many other parents) shoes.

All you want to know is why.  All you want to know is what you can do.  All you want?  Answers.

So we read everything…and nothing gives a clear answer.

It’s like trying to find the end of PI.  It’s never-ending.

Never-ending ideas
Never-ending resources
Never-ending blame
Never-ending causes
Never-ending therapies

In a strange ironic twist – the information is never-ending, just as life on the spectrum is never-ending.  Sure some days are better than others, but it’s still the same.  So, one day I quit (for the most part)…and just began listening to my gut.

From that blog post above, “You won’t know what you’re doing till you already did it.

One day I quit caring – caring about why he has autism or how he developed autism and I began focusing more on doing.  The reading and researching began focusing on the doing and helping…not the why and the what.

Because in the grand scheme of life the why and what don’t matter all that much. It’s here.  It is what it is.

What matters is how we help/teach him coping skills and mechanisms.
What matters is how we love him through difficult times.
What matters is how we advocate for him.
What matters is how we teach others.
What matters is love…

So, stop reading everything you come across.  It will literally drive you crazy.  Find someone’s ‘voice’ that helps and provides comfort to you.  It’s one of the reasons I am never afraid to share someone else’s blog.  Maybe my voice does it for you.  Maybe it doesn’t.  Mine is just another voice, another viewpoint.

In an interesting paradox – I’m not stopping.  Not for another 166 days.  Why do I continue to write?  Honestly, I have moments that I don’t feel like writing or am simply exhausted.  In those moments I think of my son.  I get to take a break from autism.

He will never have that privilege.

Day #198 – Be One With Elsa

Disclaimer!!!  Keep in mind as you read this, I know it is MUCH easier said than done.

Last night I was asked (through a third-party) to provide some advice and guidance for a mom who has a 2 1/2-year-old that was recently identified as being on the spectrum.  I gave the basic stuff…

  • Make sure they are getting enough sleep.
  • Don’t yell.
  • Find something that soothes – a toy, a blanket, music.
  • Work with and trust the professionals.
  • Trust your instinct.
  • Read all you can.
  • It will be tough.
  • It will be okay.

Then, I was told that the child started having meltdowns in public places.

To which I replied, “Tell the mom that she’s going to need to develop a thicker skin.  She’s going to have to let it go.”

Then, I could stop signing (in my head)…

Don’t let them in,
don’t let them see
Be the good girl you always have to be
Conceal, don’t feel,
don’t let them know
Well now they know

Yes!  Let people know.  The only way that you will be able to create a community for your child is to let others know.

Our natural tendency is to NOT let others in, to NOT let them see.  Our natural tendency is to only show the good, to conceal what is really happening.  To not let people in.

I beg of you – LET IT GO!!!

Tell others.  Tell everyone you can.  Yes, people will get tired of hearing about it.  That’s too bad. Tell people – because once people know they will help you.  If they won’t help you – at least they will develop some patience, some understanding of your child.

 Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door!

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway!

Then, I replaced the word cold with….

Stares.  Ignore the stares.  People will stare.  They don’t know your child.  They have NO idea what you go through…daily – minute by minute.

Then, I replaced the word cold with…

Glances.  People will try to be nice, but they are still looking and judging.  Forget it.  You and your child are not the problem. They will have to deal with their own Judgey McPudgey pants.  Wait for the day that they love a child who is ‘different.’

Then, I replaced the word cold with…

Advice.  All kinds of people will give you all kinds of advice.  What works.  What doesn’t work.  What you should do.  What you shouldn’t do.  Take it for what it’s worth.  Remember that people are trying to be helpful.  Simply nod and say thank you.  Then, trust your instinct.

Then, I replaced the word cold with…

Modesty.  Get over it.  Your child will pass gas, loudly, in public.  You will find yourself giddy because their digestive system is moving.  You could care less about the ‘appropriateness’ because this may mean that their poop MAY be closer to normal.

I continued to sing (in my head of course)…

It’s funny how some distance
Makes everything seem small
And the fears that once controlled me
Can’t get to me at all!

Know that it will get better.  There will always be days – but it will get better.  Not every day is like another. Once you have distance from that ‘bad’ day – you’ll know you have learned…and that you can move forward, better equipped.

You will find that your fears will subside, they will no longer control you.  At first, autism is scary.  It’s especially scary because it is SO different for each child…-One child talks nonstop, the other not at all.

One child flaps their arms, the other may clap, still another?  Nothing at all.
One child can’t sleep, the other sleeps all of the time.
One child cannot stand any smells, the other can’t smell.
One child cannot stand noise, the other can’t get the radio loud enough.

It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me,
I’m free

There is no ‘right’ answer, nor is there a ‘one-course’ treatment.  That is scary business.

Just keep trying though – you will find that you will find the right course.  Don’t be afraid to try anything and everything – after all this is your child.  Test the limits to find a breakthrough.  Because of the nature of the spectrum there is no right or wrong…there are no rules on what should or should not be done.  No matter how insane it sounds (see Day #147 – You Wanna Brush My What?), try it.  What will you have lost if it doesn’t work?  Why not try?

Help your child be free.

Let it go, let it go
I am one with the wind and sky
Let it go, let it go
You’ll never see me cry
Here I stand
And here I’ll stay
Let the storm rage on

Find power in autism.  You will find that you do become one with the spectrum.  You see the world through different eyes.  Stand strong, be brave.  Let the storm rage on around you – but be the rock your child needs you to be. Allow them to be the eye of your storm. (see Day #136 – Eye of the Storm)

My power flurries through the air into the ground
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back, the past is in the past

Yes, there is a certain power in being a spectrum parent.  Before autism entered my life, I was much more docile.  I didn’t like conflict – NOT AT ALL.  Now?

I don’t love it, but autism helped me find my backbone.  My power. My voice.  I will not go back to a voiceless world – I have been (and sometimes still am) the voice of advocacy for my child.  I had to be.  Be the voice when they cannot find/use their own.  Find your power.  Find your courage and wield your voice and power to anyone – to teachers, associates, aids, Principals – anyone who has contact with your child.

Your life will never be the same and that is okay.   Don’t look back and think about what your shoulda, woulda, coulda – that won’t help your now.  Let the past be in the past.

Here I stand
In the light of day
Let the storm rage on

Autism never bothered me anyway!

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Day #197 – Trepidatious Guilt

Well…it started.

If you haven’t  read (or need a refresher) Day #43 – Tape Recorder, you may want to do so now or after this post. Part of having autism – and a significant Auditory Language delays is that Tucker struggles to initiate his own language/ideas in conversation.  Although he has this challenge he has managed to figure out how to memorize bits and parts and pieces of other people’s conversation.  Then, in any given situation he puts the pieces together and sort of ‘re-plays’ the pieces he has gathered over the years.

It’s one of the reasons that we’ve always been very careful to manage who he spends time with – we never know what he might pick up from others.  Yes, I know this is for all parents – but this is different because Tucker lacks the necessary implicit filters that most of us use for civil and productive conversation.  It’s impossible for him to just ‘pick-up’ when something is or is not appropriate.

I knew that as he (and his friends) matured it would become a challenge. Unfortunately, as our children grow into adolescence they don’t only ‘experiment’ with first kisses and first slow dances, they also experiment with using the F word and other hurtful phrases.  We’ve done a pretty good job managing this so far…and then last night happened.

He made a ‘that’s so gay’ reference.

Just so we’re all clear here, that type of language use is NOT okay in my house.  Why?

When a person uses that phrase they are using the word ‘gay’ in place of say…stupid, idiotic, dumb, etc.

So, then

gay=stupid
gay=idiotic
gay=dumb

Yeah, none of those equalizations are okay.  None of them.  None.

I teach language both in spoken and written form – so I am quite sensitive to this issue.
I’m also a human being who doesn’t want to cause hurt or harm to others – so I am quite sensitive to this issue.

Here is the real kicker though.  Since language does not come naturally he often speaks with trepidation. He’s tentative.

Here was the situation….

So, I was talking about a television show that is a bit ridiculous.  Some other students in his class were talking about Party Down South.  He asked me if he could watch the show.  I said no.  I will let him watch things that are not always appropriate for his age – but allowing him to watch a show that is ONLY about being intoxicated, having ‘feeling-free’ sex, and conflict?  No.

I explained to him why I didn’t think the show was appropriate for him, or for me for that matter.  He agreed.  He was sitting beside me.  He looked at me, sort of cross ways and said, “That’s so gay” in a quiet voice. He continued to maintain marginal eye contact.  It’s how I knew he wasn’t sure if he should say it or not – he was attempting to make eye contact.

He needed my reaction.  He knew he had never heard me say those words.  He knew he wasn’t sure if they were offensive or not.

I did not yell.  I did not scream.  I did not berate him or make him feel guilty.

I simply looked at him and said, “Tucker, those words are not acceptable.”
He responded, “I didn’t mean to.  I didn’t know.”
I said, “I know. Let’s talk about why.”

Then I showed him this…

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He giggled a bit.  Then I showed him this.

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He didn’t think that was quite so funny.  He loves to game.  Then, I showed him this.

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He didn’t think that was funny at all.  “I play sports and I’m not dumb.”

Exactly, Tucker.  Equating the word ‘gay’ to something that seems ridiculous is just as…well, ridiculous.

That made sense to him – talking it through, showing him examples (as pictures).

So, what’s the point of this?  Intentionality.  We have to be intentional when talking about appropriate and inappropriate words and phrases.  Autism gives us the ‘excuse’ to have great conversations about words and the use of words.

I know, it seems all parents should do this.  To be completely honest – if I hadn’t been living with autism over the past 12 years, I’m not sure I would have stopped what I was doing to provide an explanation.  Autism requires an explanation of just about everything.  I’m sure I would have responded with, “Don’t ever say that again” and I would have expected him to comply.

I would have told him what was wrong, without an explanation of why it was wrong.

That may have worked…and it may not have.

I do know that with a high level of certainty that he knows using that phrase is wrong AND he knows WHY it is wrong.

Will this guarantee he will never utter that phrase again?  Nope.

Will this guarantee that he will feel a twinge of guilt if he does utter that phrase again?  Sure hope so.

Day #196 – A.M. is A-O.K.

I’ve always been a morning person – long before I had children.

I often ‘blame’ my farm upbringing.  Sorting hogs at 4 AM or getting cattle wrangled back into their pens in the middle of the night.  Maybe it was my dad singing on the porch in the morning (he’s also tone deaf…which added to the awesomeness of it all).  Maybe it was my mom banging around pans and cracking eggs for breakfast.

I don’t even use an alarm clock…my body naturally wakes around 6 AM.

I love mornings.  I wake up happy and eager to begin the day.  I know, to some it’s quite annoying.  I have a new reason to love mornings even more.

This morning I realized that I also love mornings because they are so routine oriented and I see Tucker as the very best version of himself.

He wakes around 6 AM…by himself (he’s sleeping by 9 PM, sometimes earlier).  In our lives together I have had to wake him less than five times.

He comes upstairs into my room. I say good morning. He says good morning.

If I happen to still be lying in bed he comes to me and grabs my hand. He holds it and says, ‘Love you mom.’  I return the sentiment.  If he’s looking for the iPad he says, “Mom, hide under the covers – I’m going to turn on your light.”  Yes…he’s that thoughtful.

If I’m up and rolling he waits for a long, tight morning hug (yes…all kinds of sensory stuff here, remember Day #85 – Lovebug).  Sometimes that hug can last five minutes.  I don’t let go until he does.

I remind him to brush his teeth and put on deodorant, he gets dressed.  He watches the iPad.  When it’s time for breakfast I give him a five-minute warning. He usually comes before that.

He eats Corn Flakes, Chex, or Crispix.  He drinks a glass of water.

He watches the iPad.

I remind him to put on socks (somehow this is something he usually forgets) and gather what he needs for school.

He watches the iPad.

I give a 5-minute leave warning.

We walk out the door…usually around 8 AM.

The AM is A-OK.

It’s before his brain has a chance to get overwhelmed.
It’s before his feelings have a chance to get hurt.
It’s before his body feels out of whack.
It’s before he’s struggled with a sentence.
It’s before he has a chance to be wrong.
It’s before any schedules have gone hay-wire.
It’s before any strange looks.
It’s before his brain ‘hurts.’  That is how Tucker describes having autism.

Sigh…he also loves mornings.

His well-rested brain is amazing…this morning as we walked to our vehicle I realize how ‘typical’ our mornings feel.  I asked him what it was about mornings that felt good to him.  His response?  ‘My brain doesn’t hurt yet.’

It’s real and I know when it’s happening.  He begins to sort of rub/itch his head in a really hard/fast way.  He closes his eyes.  His face gets red.  He puts his head down. He will often put his hands over his ears.  I know he’s trying to block out all sensory stimuli.  It’s looks something like this…

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He describes it as ‘something very different from a headache.’
He describes it in terms of ‘not being able to listen.’
He describes it as not ‘being able to understand something I know is simple.’
He describes it as not ‘being able to remember something I know we learned yesterday.’
He describes it as not ‘being able to understand what someone is saying.’
He describes it as ‘getting lost and not knowing where we are.’
He describes it as not ‘being able to control my tears.’
He describes it as ‘hiding it so no one knows I’m lost.’
He describes it as not ‘being able to control my anger.’
He describes it as ‘frustrating, because I want to be better.’
He describes it as ‘knowing I’m smart, but I can’t always tell you what you need.’
He describes it as ‘knowing I’m letting people down.’

‘Mom, that’s why when I get home from school I just want to watch some videos in my room.  I just want to be alone.  You know I love you – but I just need to be alone in my room.’

Fair enough….

Then I get sad…because I lose him at night.  He becomes argumentative, sometimes belligerent.  But I get it…I know that he’s just ‘maxed’ out for the day.

Then I remember, there is always the next morning….when my sweet boy, my heart returns.

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Day #195 – Vegas, Baby!

Some children/adults with autism can have what’s called an ‘island savant.’

Every year during March Madness I am reminded of this.

Being a savant is quite rare, except among individuals with autism. ‘ Today one in ten people with autism have savantism.’ (http://blogs.scientificamerican.com/beautiful-minds/2014/02/25/where-do-savant-skills-come-from/). These individuals have what could be referred to as an ‘island of genius.’

Remember the movie Rain Man?  The movie was based on a true story about a man name Kim Peek, while Mr. Peek did not have autism (although Rain Man’s lead character Raymond Babbit was portrayed to have autism) he did have a remarkable memory and FG Syndrome.

‘He could speed through a book in about an hour and remember almost everything he had read, memorizing vast amounts of information in subjects ranging from history and literature, geography and numbers to sports, music and dates. Peek read by scanning the left page with his left eye, then the right page with his right eye.’ (http://en.wikipedia.org/wiki/Kim_Peek)

Tucker certainly cannot do this, but he does have this insane memory for March Madness.  At age four he could recreate the 64 team bracket – without help – naming all the teams and winners from the original 64 to the championship.  The first time I saw him do this – I thought…someday that child is going to be a BIG winner in Vegas!

Juuuust kidding…well, maybe.  😉

Now that we have reached the Sweet Sixteen I was anxious to see if he still had this ability.  I literally JUST asked him.  He LITERALLY just recalled all the teams with 100% certainty beginning with the original 64.

He watches some of the games – but he doesn’t watch all of the games.  Honestly, I’m not sure how he is able to recall that much information.  While I am certainly not saying he is a savant, he does have a similar memory when it comes to his favorite sports/activities.

It’s the type of memory he has, it’s deep and narrow and incredibly focused on a particular ability/topic.  According to savant research, these abilities are clustered into five major categories: music, art, lighting calculation, calendar calculation, and visual-spacial ability.

The visual-spacial learning style is evident if you prefer using images, pictures, colors, and maps to organize information.  There is no doubt in my mind that Tucker’s strengths lie in that visual-spacial ability/learning style. Tucker used to be OBSESSED with maps.  If he was irritable in the car – simply hand him a Rand McNally Atlas and he would be good for hours.

Visual-spacial learners can easily visualize objects, plans, and outcomes.  He’s also a diagram guy and remember all the writing about social stories?  Again, this makes sense.  The information is organized, sequential, and explicit – there is nothing left to try to imagine. He’s able to read and see what he is supposed to do in any given situation.

Being able to quickly memorize this bracket is most certainly a visual-spacial ability.  This is the reason that when he was four he asked me to “draw brackets.”  I wasn’t sure what he wanted, but I did it anyway. As I realized what he was doing…I kept drawing, and he kept filling in the blanks.

Dr. Darold Treffert a Wisconsin psychiatrist has been studying savant’s for more than 40 years.  He coined the three r’s of what happens in the brain of a savant:  recruitment, rewiring, and release.  Essentially, the parts of the brain that are undamaged recruit other parts of the brain to compensate for the damaged pieces.  Then rewiring happens and the newly wired connections are is released. 

In honor of our visual-spacial folks – check out this picture from http://sfari.org/news-and-opinion/conference-news/2012/society-for-neuroscience-2012/researchers-reveal-first-brain-study-of-temple-grandin.

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This is Temple Grandin, a quite famous person in the world of autism.  She is known as a savant with extremely sharp visual acuity.  In fact, she wrote in her book Thinking in Pictures: “When somebody speaks to me, his words are instantly translated into pictures.”

A neurotypical (See Day #35 – I’m a Neurotypical) brain is on top, her brain scan is on bottom. It’s quite easy to see how he brain recruited, rewired, and released.

Once this process is complete individuals will struggle with creativity and cognitive flexibility.  Cognitive flexibility is ability to switch your thinking between two concepts or to think about multiple concepts at one time. (https://www.psychologytoday.com/blog/feeling-too-much/201408/islands-genius-how-savants-do-what-they-do)

Makes sense, right?

Struggle with creativity?  Check.

Struggle with cognitive flexibility?  Check.

In the place of these two ideas these thinkers become more automatic, rigid, and rule-based.

Again, having the ability to recall some as automatic, rigid, and rule-based as the March Madness bracket?  The ability to recall a ‘map’ of winning teams?

Makes complete sense.

So, no – he’s not a savant.  Would I argue he has some of the qualities?  You bet.  I’m positive these strengths, with encouraged development, will lead him to a quite satisfying career in architecture, engineering, or computer design.

In the meantime?  I’ll take advantage of his skills and ask him to help me fill out my bracket next year and maybe someday…Vegas.

Day #194 – Seeds of Hope

John 12:24 – Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit.

As the lector read the lessons in worship this morning I couldn’t help to read and reread this verse several times.  I circled it in our bulletin.

There was just something about it that struck me.

Then, our Pastor began his sermon telling us a story about Martin Luther.  I’m a huge fan of Martin Luther – at least that of which I know.  He was brave.  He was eloquent.  He was intelligent.  He loved and served people, all people.

What I did not know about Martin Luther was that his father, Hans, wanted him to be a lawyer. He attended the University of Erfurt (which upon more research is both one of the ‘oldest and newest’ Universities in Germany and has NO tuition-check it out).  Obviously, he did not end up being a lawyer and his father was (as historians report) absolutely furious.

There was just something about that story that struck me.

I have received some criticism that I am too positive in this blog.  For some it doesn’t do a good enough job of showing the ‘tough stuff’ and that even the tough stuff is sugar-coated and somehow transformed into something positive by the end of the post.

I’ve been doing quite a bit of thinking about that…

So, today the verse about the wheat and the story of Martin Luther are helping me to solidify how I can be so positive (most of the time, anyway).

Honestly?

I want my child to have a 4.0 GPA.
I want my child to be a music prodigy.
I want my child to always help people.
I want my child to be a conversationalist.
I want my child to pay attention at church.
I want my child to be polite, all of the time.
I want my child to be the fastest in his class.
I want my child to bet the best football player.
I want my child to always keep his room clean.
I want my child to be the best basketball player.

Two weeks ago I said to my husband (in tears), “I just want him to know what it feels like to be really awesome at something-something that is noticeable by others, something that can be quantified.”  Gasp – go ahead, but I said I was going to be honest.

Don’t we all want that for our child?  Don’t we all want them to feel the praise, admiration, and receive accolades?  Sure, we all say – ‘Oh…I just want my child to be happy.”  C’mon…really?  Let’s be honest. OF COURSE we want them to be happy…duh.  Don’t we want more for them?

That’s what Hans Luther wanted.  He knew that being a lawyer would provide financial security and a higher social class.  He knew that being a lawyer would result in praise, admiration, and accolades.

So, when Martin ‘killed the lawyer seed’ his father was angry.

However, only upon killing that seed was he able to really, truly become bountiful.  The fruit that Martin Luther bore from killing that seed?  The Reformation – and that was a pretty big deal.  The Reformation was a major turning point in history.  Obviously, it affected religion in Europe – but it also had far-reaching impacts on social, political, and economic institutions. (http://www.regentsprep.org/regents/global/themes/change/ref.cfm)

I guess that’s where I am, and have been for some time.  That is why I can be so positive.  If I spend my life focusing on that ‘dead seed’ I wouldn’t be able to recognize the bounty of truth, of who he really is.

He doesn’t have any of those qualities above…but here is what he does have.

He gets decent grades.
He loves to listen to music.
He helps people most of the time.
He’s a conversationalist when it revolves around something he wants to talk about.
He likes to ‘work’ at church – be an acolyte, an usher, serve treats.
He’s polite, most of the time.
He’s as fast as he can be.
He’s the best football player that he can be.
When I ask him to clean his room, he does.
He’s really good at standing under the basket and getting rebounds.

So, that’s why I’m positive.  That’s why I will (most of the time) continue to be.  Once the seed is dead – there isn’t anything I can do to bring it back to life.  Does autism stand in the way of MY list.  Yes.  No doubt about it.  So, I could focus on that.  I could focus on all the things he won’t be on MY list.

But that doesn’t do any good.

I have to allow MY OWN original hopes and dreams for my child to die.

Then, and only then can I hand that seed over to the earth. That is when I was able to really treasure and realize the bounty he achieves all on his own.  He will continue to bring more to this life than I could ever imagine.

I just want him to know what it feels like to be really awesome at something-something that is noticeable by others, something that can be quantified.

He is.

He is really awesome at being himself.

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