Safe Places & Safe Spaces

A couple weeks ago I blogged about our experience in the transition from Middle School to High School.  I was (and still am) SO SO SO impressed by our Assistant Principal.  I affectionately refer to him as Principal Snapple…check that post here.

At the end of that post I promised to write about our very first 504 meeting.  I’m all for holding that promise, so here we go.

We’re beginning a new chapter in this life.  Off the IEP, onto the 504.

One of my favorite moments in Tucker’s educational process is gathering teachers in a common place and telling them the story of Tucker.  One thing becomes abundantly clear…

Like autism itself, his story is so different.

Different than ‘other kids’ who have autism.
Different than ‘other kids’ who are neurotypical.

This makes it difficult.  Difficult to explain.  Difficult to advocate.  Difficult to persuade.

Maybe we’ve done too well?  He’s developed these coping strategies really well. REALLY, REALLY well…so well that others may not believe anything is different. He seems so…um…get ready for it…I hate using this word…normal (insert *cringe* here).

But, he’s anything but normal –  he’s remarkable.

So, there I sat in a room full of teachers – and it’s odd.  It’s odd because I’m also a teacher and a researcher and an advocate…and (most of all) a mom. Managing those tensions in my life can, at times,  prove to be difficult.  A constant state of push and pull between who I am in that space in life.  My brain begins to swirl.

As a teacher…Don’t put another thing on their plate – they already have so much.
As a researcher…Don’t fill the time with talk of proprioceptive and interoceptive challenges – these are busy, busy folks, stay on point.
As an advocate…Don’t expect them to care about autism as much as you care about autism.
As a mom…Don’t cry. Seriously.  Don’t cry.

In these difficult moments I often channel something wise told to me by my parents or grandparents.  Something soothing…something that will bring clarity.  My dad often said, ‘fair is not equal, and equal is not fair.’  The older I get, the more I experience life with Tucker I realize this. It reminds me of this picture…

(Okay…let’s be honest.  Anyone who knows Tuck will giggle at this picture – you know, because he’s like a giant. So don’t take this picture as a literal representation of his needs)

He simply needs a boost.  With that boost he is absolutely capable of doing everything that EVERY. OTHER. STUDENT. is doing at that school.  Period.

So, what did I do?

I told Tucker’s story. Margaret Wheatley wrote, “You can’t hate someone whose story you know.”   I believe this wholeheartedly.  If people would simply provide space in their hearts and minds to hear and feel his story, they would understand.  They would understand where we’ve been, how we’ve arrived here, and the place in which we currently exist.  When we finished I asked them, above all things to…

Provide a safe place, a safe space for him.  A place or him to feel loved, wanted, and needed – and a space for him to continue to grow.  

I left that meeting with hope.  I left that meeting believing that his teachers are those blocks of fairness.  I left that meeting knowing those blocks of  support would allow him to see the world like everyone else.  I left that meeting smiling and reassured.

And…for the most part, it’s been true.  For the most part, these teachers are reaching out when they have ideas.  They are reaching out when something seems ‘off.’  They are working at constructing those boosting blocks.

Most of all?  Their emails begin like this,

“First, just let me tell how much I enjoy Tucker…”
“I have to tell you that I think Tucker is very funny…”
“That kid of yours?  He’s so very kind…”

That is how I know safe places and safe spaces abound…it’s also how I know they will be an important part of Tucker’s next chapter.  This chapter will be full of new thoughts and exciting revelations.  A chapter that will end with what will be the beginning of the rest of his life.

Coming to Terms

Something really fantastic has been happening in our home.

Something that I had always hoped would happen.

As parents, we hypothesize certain parenting behaviors will work…but, let’s be honest, it’s a crapshoot. (I have no idea what that phrase really means…but I do know how to use it.)  No matter what we’re going to screw some stuff up – and are hopeful that MAYBE…just maybe, we’ll get something right.

From the very beginning we were honest with Tucker.  We told him why he was different.  We’ve shared why he may struggle in school.  We promised we would be right by his side – always – rooting for him, cheering for him, advocating for him.

Those times were often filled with tears for his struggle.

Now?

Now…we’ve begun to root WITH him, cheer WITH him, and advocate WITH him.

These times are often filled with tears from his struggle.

My heart is in a constant battle…jump into my throat with anxiousness or jump out of my chest with pride.

He’s loving himself.  Oh man…he’s really loving himself.  AND – not in a I’m too cool for school or I’m too awesome or I’m so special way…but in an ‘I’m different…and that can be pretty awesome‘ way.  Shouldn’t we all be so lucky?

It started about six weeks ago. My two children were having a discussion about the plan for a Friday night at the dinner table.

Estelle was pressing Tucker for more and more details.  What time is the game?  What time are you leaving for the game?  Where is the game?  When will you get to play in the game?

Finally, Tucker stood up.  He took his plate to the sink.  He came back to the table.  I could tell he was irritated.  He stood over her and my stomach dropped a bit…what was he doing?!?!  He looked at his sister – IN HER EYES – and said, “Why are you being so Tucker-ee?” We all froze.  He continued.  “Why are you needing every detail of the night?!?!?”

We all froze.

We all looked at each other.  He got it.  He gets it.  Then he smiled…and all of us laughed like we hadn’t laughed in  months.  The kind of laugh where you bend over and let it all out.

Finally, Estelle answered, “Well…why are you being so Estelle-like?”

Another round of laughter…and the tears that came were tears of laughter and relief.  This is the deal.  He’s learned that we are all different…AND we can (and should) find humor in our unique ways of living life.

It happened in our house, unbridled acceptance led to a recognition of unconditional love.

Then…a couple of weeks later it happened again.  He’s so very literal…SO VERY LITERAL.  He had a Doctor appointment.  I’m not sure I’ve ever seen a doctor laugh so hard.  Here is what I posted on Facebook…

So…you’re laughing, yes?

Did you notice who commented?  Tucker did.  Did you see what he commented?  ‘You’re all welcome.’

It happened online, unbridled acceptance led to a recognition of unconditional love.

Tucker will be confirmed at the end of this month.  Two weeks ago he read his faith statement to our congregation.  In that statement he wrote (and then read aloud),

One of my favorite songs is by TobyMac.  It is called, Beyond Me.  I’d like to share some of the song.

Call it a reason to retreat
I got some dreams that are bigger than me
I might be outmatched, outsized, the underdog in the fight of my life
Is it so crazy to believe

In this first part he sings, “I might be outmatched, outsized, the underdog in the fight of my life”  I can feel that because I’ve been made fun of and had difficult times because my brain is different than most people. But then he sings about his dreams being beyond him. That’s like me.  God gives me the faith that I’m different, but I know can do it.

Not a dry eye was found in our house.  Did you see that again? That, my friends, is an acceptance of self.

It happened in the public sphere, unbridled acceptance led to a recognition of unconditional love.

During this moment in our history it feels we need a bit more of this…unbridled acceptance that leads to a recognition of unconditional love.   Thank you for your part in Tucker’s recognition and/or acceptance, no matter how big or small it may have been.  Now…go out and give it to someone else…

Principal Snapple

Honesty check.

Late last spring I wrote about how wonderful it was that Tucker graduated from his IEP.  I didn’t feel that great about it.  I did…but…I didn’t.  Folks said, “Oh, how wonderful.”  “That is so great.”  “Good for him!”  “What an accomplishment.”

I smiled…because that’s what I do.  Fake it ’til I make it.

Well…I made it.  So, now what?

Well…I spent LOTS of time this summer learning about 504 plasn and how we could make a plan with our school to ensure Tucker’s continued success.

What is the difference?  In a nutshell, an IEP is about modification.  It’s about change; tracking and assessing that change.  In an IEP, goals are created.  These goals can be quite varied:  social goals, emotional goals, academic goals, occupational therapy goals, speech and language therapy goals.  (You name it – we’ve had each type of goal.)  Then, your child’s educational team tracks progress towards those goals.  Once these goals are met you create new goals…or in his case, you ‘graduate.’

Graduation from an IEP is always the ultimate goal, but not commonly achieved.

Tucker has never been common.

A 504 is about accommodation.

What is good about this?  Well…it’s a bit more ‘loose’ so it can look more like a qualitative assessment and strategic plan.  It’s the story of what works and what doesn’t.  It’s about making adjustments in his day to enhance his educational experience.

A 504 is about accommodation.

What is bad about this?  Well…it’s a bit more ‘loose.’  It’s more difficult to track what exactly is working and why.  Regardless, A 504 is much more suited to addressing issues outlined in the Ziggurat Model.

Adding to the challenge?  It’s a transition year.  Transition years are historically more difficult than any other year, a transition to High School nonetheless.  Our new faculty members don’t know Tucker.  They don’t know where he has been, how far he has come, or what struggles he (may) continue to face.  They don’t know how funny he is or how much he treasures structure.

In August the new Assistant Principal and I began communicating about Tucker.  He’s new…and let me tell you.  He’s good stuff.  I often refer to people as Snapple…’made of the best stuff on earth.’

He’s Snapple.

To give Principal Snapple a snapshot before we met I put together a document. In that document?

• IEP History – Including his first and last goals as well as excerpts from exit interviews with his 7th/8th grade teachers.  This was INVALUABLE data because it was in teacherspeak…what he excelled at and areas still under construction.
• Information about Executive Functioning – This in the area that Tucker still struggles with the most:  impulse control, emotional control, flexible thinking, working memory, self-monitoring, planning/prioritizing, task initiation, and organization.  I addressed each of these areas and introduced the idea of a School Coach.  Someone consistent to help him stay organized, stay on task and on track, and most of all…someone to listen.
• Specific Academic Accommodations – I listed the accommodations he could have received in previous years:  extra test time, testing in a quiet area, seating close to the teacher, chunking assignments, written instructions for assignments, and frequent breaks
• A list of specific sensory triggers

That was followed by a meeting request with his first semester teachers and reassessment schedule (for the 504 plan)  – mid semester, pre spring semester, end of spring semester.

Finally, our goals and promises as parents.  Our promise to work with.  Our promise to be active and engaged.  Our promise to have their back.  Our promise to provide feedback.  Our promise to be proactive.  Our promise to have like messages.  Our promise to be consistent and firm.  Our promise to always, always love him.

Do you know what Principal Snapple did?  He asked me to come meet with him.  So I did.  We talked about Tuck.  We reviewed the information I put together.  Then he said something like this…”I think Tucker would be best served by one of our intake conference spots.  That means that all of his teachers – even Study Hall – would come together and hear about what a wonderful, unique student he is.  How would you feel about that?”

Mr. Snapple, for sure…made of the best stuff on earth.

What happened at that meeting?  Well…I try to keep posts around 500 words and am already over 700, so I guess you have to wait until the next post. 😉

The End of An Era

I haven’t written in a while.  Mostly because I’ve been trying to wrap my head about some pretty big changes in our lives.

On Tuesday, February 9 we had Tucker’s IEP Renewal Meeting.  I’ve written an entire series about the IEP experience…

From a Parent Perspective
From a Special Education Teacher Perspective
From a the Teacher Perspective
From a Student Perspective

I knew it was coming.  We all knew it was coming.

This IEP was different.  I asked Tucker if he wanted to come.  At first, he said no and I was relieved.  I know I’m old school, but I like to have my own teacher time.  Yes, my children should be responsible for their own learning and be able to communicate their  learning and bla bla bla…I get.  Regardless, I like the 1:1 time with their teachers.  I like to ask them honest questions and receive honest answers.

This time, he decided he wanted to know what it was all about.

He called my bluff.  Damn.

It started with me being early and trying to hold it together.  Then a small room.  Then fidgeting.  Then Tucker arrived and I breathed a sigh of relief.  He takes up pretty much the entire doorway…but his twinkling eyes, soft complexion, and sweet smile reassured me it would all be okay.  (Yeah…who’s the ‘real’ adult in this situation?!?!)

We talked about the meeting.  I told him how the meeting would be run.  I told him that he could leave if he became bored – but to do it politely and quietly.  Then, we practiced what ‘politely and quietly’ looked like.

I always wanted to be an actress – he gives me that chance over and over and over again.  Rehearsals for life.

Then, the teachers arrived one by one.  They all smiled.  They all said hello to Tucker and he nodded back.

They went around the table and all said wonderful things…then the Special Education Rep spoke the words I knew were coming. “He’s met all of his goals.  He must graduate from his IEP.”

Tucker politely excused himself.

The teachers left.

Celebrate.
Panic.
Celebrate.
Panic.
Celebrate.
Panic.

Breathe.

Here I was in a room with his Special Education teacher and I was speechless.  I just stared at her and out the window and at the table and back at her.  I took a deep breath and she finally said, “Nikki, he’ll be just fine and if he’s not…you’ll know and you’ll know just what to do.”

Then I sobbed.  In that small room in Tucker’s Middle School.  I sobbed.

She came to the other side of the table and hugged me and said, “You know I don’t get this moment very often.  This is what is supposed to happen.  I feel so lucky that I get to share it with you.”

Snot is now all over my sleeve and mascara is running down my face.

I was able to mutter a thank you.  Then she said, “You know it’s your victory too.  You never let the frustration show.  You advocated in the smartest of ways.  You helped us understand so much about him.  We are better because of you.”

That was NOT helpful to the existing snot situation.

I hugged her again and said, “We are all better because of him.” She agreed and ushered me out the door.

On the way out to my vehicle I stopped and looked towards the heavens.  Religious or not (I happen to be) this was a moment for praise and thanksgiving.  As I climbed in my vehicle and drove away I couldn’t help but to think about all of these meetings.  All of these meetings where I left in tears because I wanted life to be easier for him.  They were over.  In hindsight…they didn’t seem so bad.  Funny how time really does heal.

I called my husband and had to pull over to tell him the news because I couldn’t talk.  Half way through my 25 minute drive to work I had to stop again…it hit me.

How did he do this?

How did he keep up with the academics of his peers and have 27 (yes, 27) different goals in his first nine years of school?  How did he do that?!?!?  It hadn’t occurred to me until that moment that he was not only working on speech and coordination and managing emotions…he was doing everything the other students were doing – math, science, literacy.

How did he spend time with Speech Language Pathologists, Occupational Therapists, Counselors, Physical Therapists and STILL keep up?

Seriously, how did he do that?

When life settled down that night I stood in front of my refrigerator staring at a picture of my brother.  A picture that was taken after a horrible accident.  A picture of him after he had overcome tremendous odds.  A picture that was taken after my parents were told his chances of living were marginal.

I keep that 30+ year old picture there – as a reminder of the strength of the human spirit.  I love that picture.  As I turned around there was Tucker, sitting at the table like every other night.  But tonight, I was overcome with emotion.

There he is, sitting at my kitchen table – a very present reminder of the strength of the human spirit.

So there you have it…I haven’t been able to write because I needed to let enough time pass that I didn’t electrocute myself from crying over my computer.   The tears were certainly present…but in the end a smile crept in.  A smile that is most evidenced by a triumph…a smile of success…a smile that is reminiscent of the strength of the human spirit.

A smile, because of Tucker.

Namaste

Obviously I am not writing daily.

I’ve had people ask in the past couple of months, “What are you doing with all of your time now?”

Well…

I’m still catching up on organizing my house.
I have more responsibility at work.
I’m doing some consulting.
But the best thing?  Yoga.

I started doing yoga.

Funny, because I thought I would HATE yoga.  The thrill of the run, the feel of the sweat, the absence of breath…that is what I’ve most’ enjoyed’ about exercise.  However, my life, at times, just felt too fast.   Like I was losing control of everything around me and I was feeling helpless.  I was on the outside just watching everything happen or in the center of a tornado watching everything swirl around me.

Often while exercising I would think of other projects, other things, more to be concerned about.  I rarely experienced the ‘flow’ of running or working out – that moment that everything becomes easy because it’s so well-practiced.  This is sometimes called the ‘Runner’s High.’  I arrived there a couple of times…and admittingly,  it did feel very good.

After running a 1/2 marathon my body was just beat up.  I know, people run further than that all the time – but my interest in running was lacking, at best.  Too much training.

So, a friend told me to try yoga.  I rolled my eyes…really? Yoga?  How is THAT exercise?!?!?  Then again…I’m up for trying just about anything.

I started yoga at our local workout facility.  Twice a week.  By the second week I recognized that I may actually like it.  Then, my teacher asked me how long I had been practicing yoga.  I told her about four hours.  She responded, “Well.  You have a very natural aptitude.  I hope you stick with it.”

Two weeks later I purchased an everyday yoga program.  Three days in, I realized how much I loved it.  It was one full hour, every day.  One full hour to clear my brain, to slow down, to concentrate on my breath, and think about how my body actually felt.

Some days I was doing ‘two-a-day’ yoga, one at the workout facility and then another hour with my hubs at night.

I went to yoga one night after a particularly conflict-filled day at work.  I just couldn’t balance, couldn’t clear my head, and I couldn’t get into the pose.  I was *probably* pretty huffy.  I was looking around at everyone else.  I imagine my instructor saw this struggle because she said, “Stop pushing.  Yoga isn’t about pushing.  Yoga meets you where you are.  There is no wrong.  Once that position feels comfortable, move further into it.  Even just 1/4 inch further – that may be enough.  Don’t look at other people.  Yoga is about you and your body.  Meeting  you where you are and taking you just a bit further each time.”

Class finished.  I walked out to my vehicle on that crisp fall day and sat down in the driver’s seat. Clicked my seat belt.  Put the key in the ignition. Then I stopped. I took a deep breath, bowed my head…then the tears began to roll.

Yoga and autism.

Maybe that was what I needed all along.  I needed to just slow down.  I needed to be more mindful of my thoughts, actions, and words.  I needed to be.  Be more.  Be more in the moment.

In my experiences Autism is best served by yoga principles.  Meeting Tucker where he is.  Not comparing, not judging, not pushing.  Meeting him where he is and going just a bit further.  I hate to say we’ve had ‘success’ – because that would imply that something was wrong or needed to be fixed.

There is nothing wrong with him – but, we have had to help him live in this Neurotypical world.  Yes, I wish the world would just automatically and immediately love him and understand him the way we do, but that’s not reality.

So…yoga.

Pushing too hard always resulted in melt down mode.  Pushing too hard always led to regression.  Pushing too hard, it just never worked.

Meeting him where he was?  Getting comfortable and developing understanding in that moment and then moving another 1/4 inch?  That is what worked.

Last week was Tucker’s IEP Renewal.

He graduated.
I cried.
I haven’t been able to write about it, because every time I see those words, “He graduated.” I cry (including right now).

9 years.  9 years of IEP work.  26 separate goals.

Each goal – met and pushed just a bit. Not so much that it hurt or damaged…but pushed just a bit.

Then again.
And again.
And again.
And again…until we met it and moved on.

Now it’s over…and at the same time…it’s just beginning.

Only one word can describe the journey we have been on and where we are heading.

Namaste.

It’s No Biggie

A few weeks ago a colleague of mine and I were sitting in a meeting.

While sitting around a large table some folks became really fired up, voices were raised, huffing and puffing was in full effect.  We were sitting side by side…and just looked at each other.

This colleague is also a good friend of mine and her son has Type 1 Diabetes.  He is four.  She hasn’t had a full night of sleep in over two years – because she (or her guy) gets up every two hours to check their son’s blood sugar.  Her life is her phone, where she can check and track his blood sugar levels in ‘real time’ (which by the way is crazy cool).  A month ago we were again sitting side by side as she checked her phone and turned white.  I told her to leave the meeting.  Nothing was more important in that moment than getting to her son.

She is truly remarkable and so is their family’s story.

So, what does this have to do with autism and this blog?

After this said meeting I looked and her and whispered, “Am I missing something here?  Does it seem like that big of a deal?”  She shook her head and replied, “No.”  Then we smiled at each other…that silent type of smile that both of us just know what the other was thinking.  So, what were we thinking?

It’s no biggie.
Much of life…it’s no biggie.

I don’t have a lot of time (or honestly…energy) to worry about this or that.  Not much time or energy to get upset at this or that.  Why?  Because Tucker has brought real to my life.  He reminds me daily…about what really matters; and therefore, what doesn’t.

In about a month I’m going to turn 40 – and one of the most important life lessons that I have learned this far is that most of it is no biggie.  I say that with a half wink and half-smile smirk.  How I wish I could tell the early 30’s me this very important lesson.

It’s no biggie.
Why is it no biggie?

Well…because I’m too busy being worried about other stuff.

Like…
When I received Tuker’s IEP Renewal letter and the questions were,
“Where do you see Tucker living post secondary?”
“What level of education do you see Tucker pursuing post secondary?”
“What career/profession/vocation do you anticipate Tucker pursuing post secondary?”

Like…
Seeing him not be able to find the words to communicate.

Like…
Watching him struggle to engage with his peers.

Like…
Contorting my body as we converse to try to get him to make some eye contact with me.

Like…
Calming a total meltdown at church because he didn’t know he had to acolyte (yes, all 6’4″ of him…this is getting much more difficult ya’ll)

I guess that’s why most of the time I am so calm.  I recognize that most of life’s issues are really quite small.  Most issues will pass or resolve themselves within a couple of days.  However, my husband would also tell you it’s the very reason to pay close attention when I do get fired up about something…because that something is likely very real.

So what really does matter?

His happiness.
Him feeling loved.
Him understanding his worth.

If it doesn’t affect one of those things…I’m out.  This is the real life lesson for me and maybe for all of us.

What is it that REALLY matters?  Feeling happy, feeling loved, feeling worthwhile.

What if we all arrived to that place?  The place where we removed from our lives those things that make us unhappy, unloved, and unworthy; and added to our lives those things that make us happy, loved, and worthy.  What if our focus was on three questions…

What makes you happy?
What makes you feel loved?
What makes you feel worthwhile?

Do more of these and less of the others.

Like hot tubs on snowy days. Do more of that.

Thank you, Tucker – for yet another life lesson to make our lives more beautiful.

The Ghost of Christmas Future: All Tucker, All the Time

Last week as I wrapped presents and watched the 1951 version of Charles Dickens’, A Christmas Carol, I couldn’t help but think about our past, present, and future.

The Ghost of Christmas Past would have shown me something much different from we experienced this year.  That vision would have been one filled with stress, panic, tears, frustration, sadness, and maybe a glimmer of hope.  My heart started thumping just thinking about this portion of our lives.

Forcing Tucker to be still while unwrapping presents, forcing him into itchy Christmas program costumes, forcing him to be patient, forcing him to sit through long family dinners, forcing him to try foods that I knew he wouldn’t eat, forcing him to ‘be good’ when he was lacking sleep.

Forcing him to do all of these things…because that is what ‘good, well-mannered, and behaved children do.’

I had memories of taking in the stares, whispers, and much unneeded advice from well-meaning friends and family members.

I couldn’t help but to think about how glad I was to leave the past in the past.  I couldn’t help but to think of  the ‘getting better’ part.  The Ghost of Christmas Present would show me that he  had only one noticeable meltdown in public and less than a handful at home.  It feels better.

But then I started thinking about reality.

He’s not getting better.  How do I know?  It’s impossible to ‘get better’ from autism.  It’s not a cold or the flu.  It’s not strep throat or bronchitis.  It is a neurological thing…a thing that doesn’t change, go away, or get better.

So…that leads me to two thoughts.

One…

We’re actually getting better.  We’re becoming more aware of how to be a ‘better’ family to and for Tucker.  This is good; really, really, really good. We understand his need for routine, his need to know, his need for peace, his need for sleep, his need to be alone, and his need to be included.

We’re all better at reading the signs – we’re all better and not making him sit at the table while we talk or making him sit and wait through two hours of present opening.  We’re better at letting him go and do his thing and letting him know when it’s his turn.

We’re better at listening to him and his knowledge about Vikings football and him scripting something funny that was said earlier in the day.  We’re better at listening to the same story again and sharing those nuanced parts of life.

We’re better.  We’re better because we’ve learned from the past.

Two…

He’s getting better because we’ve conditioned him to live in our neurotypical world.  According to our social norms, he is ‘better.’  But at what cost?  At a cost of constant redirect.  At a cost of constant correct.  At a cost of him constantly feeling not good enough.

Truly, the best parts of him are the parts and pieces that haven’t been conditioned to live in this neurotypical world.

Him…looking at his eyes as they sparkled from a Christmas Eve candle and watching tears form as he saw mine fall from my cheeks.
Him…hugging me in the middle of the kitchen because our Christmas is just so ‘beautiful.’
Him…leaning in the window of our vehicle to give me a kiss before he went off with a friend.
Him…nodding and smiling at me from the middle of his basketball huddle.
Him…asking me what was wrong because my voice sounded funny.
Him…turning around as he walked into school to wink at me and touch his heart.

This was in the past month and it was all him.  It was him…not following social norms over the holiday.  It was a 13-year-old young man…sharing his tears, showing his feelings, kissing his mama, and showing empathy – and not in a house behind closed doors, in fact, quite the opposite.

In the open.  In a parking lot.  In a gymnasium.  In front of a school. In front of a congregation.  Showing and sharing with others who he is…without regard for how we are ‘supposed’ to be and act.

Simply the truth.

The present is pretty awesome…but I couldn’t help but think of The Ghost of Christmas Future.

What if ‘getting better’ came at the cost of losing his true self?   What have we done in trying to help him assimilate?

What will the Ghost of Christmas Future show us?

A Tucker that is happy with his life.
OR
A Tucker that continuously feels inferior because we’ve conditioned him to the point of losing his true self.

As parents, we all take chances.  We all mess up and we all succeed – but there is one thing I know.  After thinking about these three ghosts…I’m done.  Tucker is who he is.  His own spirit.  He is the best version of himself when he exhibits his own wonderful, unconditional, unconventional ways.

All Tucker…all the time.

I hope the Ghost of Christmas Future agrees.

Autism & Epilepsy

Okay, folks…let me tell you.  I love to learn – you probably knew that…but I REALLY love to learn.  Over the past few months I have had the pleasure of meeting, and learning from, a most amazing mama.

You met her son Garrett on Day #157.   At that time I didn’t really know much about epilepsy.  I also didn’t know much about Garrett’s incredibly funny mama.  Well – we’ve become friends and she is a most remarkable person.  That, I know, is true.

One afternoon we stood in a cold parking lot talking about epilepsy – because, well, honestly I don’t know much about the disease/disorder (it’s viewed as either, depending who you talk with).  What I know about epilepsy came from television or from the movies.  I was asking questions about her sweet son when she said to me, “Well it began with absence seizures.”

Hold up…what?  Different types of seizures exist?  She went on and it was like she was speaking Greek.  I finally said, “I have no idea what you are talking about…can you start back at the beginning.”  You must know that I am always willing to admit my ‘not-knowing.’  On a personal level I think this is one of the most important qualities of being human.  Knowing you don’t know, knowing it’s okay not the know, knowing how to ask, and then…knowing how to listen.  This is certainly an area that I did not know much (if anything) about.

She told me about absence seizures…where a child can be talking and then they simply stop, look away for a few seconds, and then come back.  Hold up.  I could only think of Tucker…getting lost or ‘stuck’ mid-sentence.  I asked her to send me more information.  She sent me this video.  WATCH THIS!!

Trust me, during my next conversation  with Tucker I positioned myself directly in front of him to witness his ‘freeze’ moments.  He didn’t exhibit any of these qualities…but I was still amazed by this video.  I showed my husband the video.  He also admitted not knowing.  We watched it again…and again.  I knew I needed to know more.  I knew we all needed to know more.

There is a definite link between autism and epilepsy, this I know. In fact, it is estimated that nearly 1/3 of folks with an ASD also have epilepsy.  That’s pretty huge.  So, I asked my most intelligent, beautiful friend to write something today…

Autism can take us in many different directions depending on the quirks, perks, and challenges it presents in our lives. Occasionally, it can also overshadow the existence of other issues and suspicions.  [My experience was actually reversed. The Autism I suspected in my baby was dismissed early on and then overshadowed by the onset of epilepsy at age 16 months.] Either you know this statistic well because it applies to you or you’re shocked by it because it does not;

 It is estimated that 1/3 of individuals with Autism Spectrum Disorder also have Epilepsy.  Yes. A third of people with Autism also have seizures; typically recurring seizures and beginning at any age.

Autism Speaks dedicates a portion of their website to educating people on this particular issue.  As we look at the co-occurrence of two neurological issues, it is not so shocking that it exists at this rate. There is even some consensus that Autism and Epilepsy are derived from the same brain abnormality and a growing body of research investigating whether they are, in fact, mutually exclusive diagnoses versus one very large long spectrum of the same neurological disorder. Crazy Right?

November is Epilepsy Awareness Month. It’s the perfect time to make everyone aware of the prevalence of the Epilepsy itself! A few facts the Epilepsy Foundation’s Iowa Office shares are shown here:

Similar to Autism, Epilepsy is also seen to exist on a spectrum. The impact it has on one’s functionality, severity and frequency of seizures, difficulty in medical management and so on vary across the board. Types of seizures also show great variance. Not all seizures look like the stereotypical movie scene. Absence seizures are brief and mostly present as a short period (15-20 seconds) of “staring off”. Beyond this, seizures can be as “simple” as eyes twitching, head dropping, lip smacking, arm jerking, leg stiffening all the way up to the full-body convulsions. Only an EEG can definitely determine whether abnormal electrical brain activity is occurring and is, in fact, seizing. For more comprehensive information on Epilepsy and seizure types, refer to the National Epilepsy Foundation.

Don’t be frightened by the statistics. Information is power. If you have a true concern that epilepsy is an issue you’d like to investigate further, you should contact your medical provider. Questions to help guide you in your inquiry can also be addressed to the Epilepsy Foundation’s Iowa staff. Henry is the Eastern Iowa Services Coordinator working from Iowa City and can be reached at (319) 359-8682. Roxanne Cogil is the Director of Iowa Epilepsy Services working from Des Moines and can be reached at (515) 238-7660.  The Foundation also has a social media presence and can easily be found on Facebook and Twitter where you could connect with others.

Labor of Love

When I was an impressionable teen I remember my father telling me, “Find out what it is you love to do in life.  Then, figure out a way to make money doing that thing.  Don’t worry so much about the amount of money you may or may not make.  Your life will be fulfilled with as much or as little by doing the thing you love to do.”

He’s so wise.

I’m loving life right now.  Seriously…loving life.

It’s true – I love teaching and it has always been my passion, but over the past three months I have had an amazing opportunity.  It all began by a crossing of paths.  A gentleman thought I knew some stuff and was able to communicate well.  This combined with a passion he had for dentistry.  (Side note – I really dislike going to the dentist.) We worked together to create a dental kit and an hour-long training for practices.

In the past six weeks I have trained four dental practices on how to serve the Autism Spectrum population more effectively.  I have much hope – much, much, much hope.  These audiences of dentists, dental assistants, dental hygienists, and office staff were so incredibly welcoming.  They wanted to know more – they recognized how important the ‘tools’ were that we introduced.

So – what exactly did we do?

1.  Invited all staff to an hour-long lunch and learn.  During this hour we discussed sensory differences, communication differences, relationships differences – but most importantly, we discussed how we all have ‘spectrum tendencies’ (tags on shirts, eating mushy food, bright lights, too much noise, etc.) and how each person on the spectrum is unique.  So…the best thing each practice can do?  Simply open lines of communication to talk about specific needs/preferences.
2. Put together a set of flashcards for each practice.  They were personalized to the practice itself -all staff members with their pictures, their ‘job,’ and a description of what they do.  The set includes dental tools and descriptions.  We laminated one set to leave in the office, and others to send home with families.
3. A toolkit – errr…actually a toolbag.  A bag that included a variety of items that could help sensory overload at the dentist – sunglasses, fidget toys, a b-calm headset, a timer.  Things that would help to build relationships and trust – the flashcards, dental mask, social stories (see item 3 below).  Things that children could touch and feel and play with (of course, with adult supervision) – dental mirror, cotton rolls, a mouth prop.
4. Personalized social stories.  Seriously – I cannot describe how much love I have for social stories.  What is a social story???  The idea of social stories were first promoted in 1993 by Gray and Garand (Social stories: improving responses of students with autism with accurate social information, Focus on Autism and Other Developmental Disabilities, vol. 8, no. 1, pp. 1–10, 1993).  Their research focused on using social stories to increase knowledge, reduce anxiety, thereby lessening possible behavior difficulties.  Specifically, social stories have four main goals.
   1. Explain unknown situations to reduce anxiety.
   2. Use both visual and text cues to incorporate different learning styles.(K. A. Quill, “Instructional considerations for young children with autism: the rationale for visually cued instruction,” Journal of Autism and Developmental Disorders, vol. 27, no. 6, pp. 697–713, 1997.)
   3. Tell the story from a reader’s point of view.
   4. Increase prosocial behavior , including knowledge of social interaction with peers or others featured in the story. (D. Scattone, S. M. Wilczynski, R. P. Edwards, and B. Rabian, “Decreasing disruptive behaviors of children with autism using social stories,” Journal of Autism and Developmental Disorders, vol. 32, no. 6, pp. 535–543, 2002.)

   In this case, all four of these goals support a more positive, less anxious relationship between patient and provider.  Social stories have worked for us in SO. MANY. WAYS.  Want an example?  See below the story I put together for Waverly Family Dentistry (in my opinion…one of the best offices out there…because they are our office).

So, all of this is great, grand, and good – but the best part?  I think the best part was when…IN EVERY TRAINING…someone said, “This isn’t just good for children on the spectrum – this would be a great resource for every child that comes into our office.”  Boom.

Doing the thing you love…it’s true…it brings so much peace to the soul and love to the heart.  If you reside in Eastern Iowa, please support these four offices.  They are ready for you…and your children.

• Manchester Dental Associates – Manchester, IA
• Waverly Family Dentistry – Waverly, IA
• Hennessey Family Dentistry – Cedar Falls, IA
• Dr. Troutman – Independence, IA

In the meantime – if you want to know more about this training – please contact me at nicholekea@gmail

 

 

 

The Right Now

It’s that time of the semester.  The time when all students begin to struggle – but the struggle just seems amplified for our spectrum students.

I don’t know why…but I would guess something like this.

It’s just hard.  It’s hard to block out all of the sensory components and building language and making friends while simultaneously trying to learn.  One of the values of this blog is I’m able to look back.  It was about a year ago we began running into these same issues.  How do we help him keep going when he’s exhausted?  Thanksgiving break is still three weeks away…and he needs a break.  His brain needs a break, but it’s not time for a break.

Four emails and two calls last week.  It was a rough week.  I came to that moment that I just didn’t know what to do…at the end of my rope…at the end of the road…and then…it struck me.

Bribery.  I wrote about bribery on Day #293.  I wrote about my ‘pre-child’ self that was NEVER going to bribe my children, NEVER going to leave a function if my child had a meltdown, NEVER going to feed them fast food, and certainly NEVER give extrinsic rewards.

Then I had children and opened a REALLY big window for all of those never statements.

As a teacher, I am inherently a believer in intrinsic learning motivation.  You should do your best and try hard in your classes because you WANT to learn.

You know what though?  Not everyone is like that.

Dun dun dun (be sure to read that dramatically)…once again autism teaches me.

Tucker wants an xBox 1 like he’s never wanted anything in his life.  Okay, to be honest….he’s never really actually wanted anything – so this is a first.

So, I gave. I sent a message to his SpEd teacher with an idea for him to earn money towards this black box of goodness.  His teachers could assign certain amounts for achievements and I would create a chart at home that would allow him to track his progress towards $350.

The next thing I know his super fantastical math teacher sends me a message that they had already devised a plan.  He gets $1 for every ‘on-time’ assignment that he turns in on time and earns 80%, for every 3 (which is the equivalent of an A/B…don’t ask…it’s screwy) on a test, quiz, or major assignment he earns $3.

I let Mr. M. know my appreciation and that I will begin making some fake dollars for them.  I also tell him how much I have struggled with this decision – because I ‘preach’ intrinsic motivation so often…but I’ve come to terms with it in this way.

I like my job.

I equate school as my children’s job.

I wouldn’t go to my job if I didn’t need to make $ to pay bills (I’d instead teach and volunteer in a poverty-stricken area).

Therefore, I go to work for extrinsic rewards (house, car, not to go to jail for not paying bills)

So…I guess I can deal with rewarding Tucker in this way.

It seems another talent I have is rationalizing just about anything.

He replies…telling me that they have already put someone in charge of making ‘Tuck Bucks.’  I thought that was a cute name.

I love his teachers.  Seriously. I. LOVE. HIS. TEACHERS.

They get it.  They want him to be successful.  They know it takes a little extra.  They are willing to go the extra mile…so much so that look at what Tucker came home with today.

 

No joke.  These people are remarkable.  Not only are they playing along but they are doing it at an AMAZING degree.

We get home today and he says, “Oh mom.  I have something.  I have to go get my bag.  I have to show you something.”

He returns with a HUGE smile and three ‘Tuck Bucks.’ Then this conversation happened…

“Tucker.  That’s awesome!  How did you get those?”
“I got a 3 on my science test.”
“You did! What was it about?”
“It was all about balance.”
“That’s so great.  Why don’t you tell me about it while I get $3 regular dollars for your exchange.”
“Sounds great.  So, balance…”

So…these Tuck Bucks?  For now they are working wonders.  Not only is he trying harder in the part of the year he historically doesn’t try…but we’re having a conversation about the learning.

It may not work forever, it may not work for long…but it’s working for now – and in this world, that’s sometimes the only thing that matters.  Right. Now.