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 In-Between

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.

Tucker is having some minor surgery this morning.  It shouldn’t be a big deal-he has a nasty, non-working vein in his left leg (otherwise known as a varicose vein).  It could be an anomaly.  It could be something.  We’ll find out soon.  Sitting in the in-between.

He refers to it as his, ‘Old lady surgery.’  We have his Grandma to thank for that one…lol.

I sent my husband a message earlier in the week, ‘I get why he asks all these questions…but it’s driving me batty.’  This week I’ve felt a lot of time in the in-between.

How long will the surgery take? I don’t know.
Are they going to put on a mask and make me go to sleep? I don’t know.
Will I have to have a shot? I don’t know.
When will I be able to play football? I don’t know.
Will I be able to run by Monday? I don’t know.
Where did Dr. J go to college? I don’t know.
What type of food do they eat in Sri Lanka [where Dr. J is from]? I don’t know.

And finally…

If my body just absorbs the bad vein after the laser kills it, will I poop it out? No, definitely not.  My very rudimentary understanding of the human body allowed me to answer that question.

I know why he asks all of these questions.  He hates the unknown and herein lies the difference.  Lots of folks hate the unknown, but can still move on with their daily life.  He cannot.  He gets stuck.  We get stuck.  In the in-between.

Not knowing is paralyzing him.
Not knowing the answers is paralyzing to me.

His life has been my life.  I’ve always been a step ahead of him; knowing the answer, advocating, and being able to provide full explanations.  But not this time…this time I just don’t know.  I’m caught in-between.

In-between.  He’s frustrated that I don’t know the answers.  I’m frustrated that he’s asking questions I don’t know.

It’s likely a sign of things to come.

My goal has always been for him (and any of my children) to learn to advocate for himself, to learn to ask the questions he needs answered, to know what he needs to be successful.

He’s off his IEP and we’re moving to a 504 plan (which I’ll cover in more detail later). The focus of the 504 is on accommodation instead of modification.  It makes sense in this natural progression.  It’s the in-between.

Accommodation.  In-between modifying life and fully experiencing unadulterated life. It’s the moment you hope for – and dread – all at the same time. Modifying life is much more safe…but then I remind myself the advice I give to my graduating students.

‘The fence is the worst place to be. Make a decision. Even if you land on the wrong side you’re moving.’
‘Failure is good and necessary. Success is sweetest once you’ve failed.’
‘Rainbows occur between storm and shine.  Enjoy the view.’

It’s a heckuva lot easier to give that advice to others than to inherently know that it applies to your child…and you.

It’s 10:35.  His appointment was at 10:30.  Here comes the storm of questions.

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.


I’m not sure there is much worse than being off schedule with a spectrum kiddo.  Oh wait there is.  Being off schedule for something you don’t know much about.

We were instructed to bring one of the prescribed Valium. I’m beginning to wonder if it is for me or for him?

Sitting in the in-between.  I guess I’ll try to focus on that rainbow until the sunshine appears again.


Update:  The procedure went well and Tucker is already back to football practice!

Leaving On a Jet Plane

It’s been awhile since I’ve written – not because there hasn’t been anything worthy of writing, but I just haven’t felt the urge.   Hopefully you sense my passion in writing  – for me, that’s a part of the process.  I must feel it so…well…so you can feel it.

No worries, folks – I still have seven single-spaced pages of topics to write about.  Today’s post wasn’t on that list, but someday soon I will get back to that list.  Today’s post has been brewing for two weeks.  Today Tucker left for the weekend…so I can write this without him barging in wondering why I’m sobbing.

Two weeks ago I had a week-long leadership training on the East Coast. I flew with a friend on the way there, but flew alone on the way home.

I was quite early for my flight, so I had plenty of time to people watch.  I’m still fairly certain Darius Rucker was waiting for the same flight, but when I walked by him humming ‘Wagon Wheel’ he did not blink or turn my way.  He must have wanted to remain incognito.

I boarded the plane, stowed my carry on, and found my seat.  I pulled a book from my bag, buckled my seat belt, leaned back, and closed my eyes.  It was a phenomenal week, but I was relieved to be on my way home.  I missed my children, I missed my husband, I even missed the dog. I missed doing laundry and pulling weeds (okay..maybe not so much the weeds…but I did miss working outside).

Then the thoughts crept in.  The thoughts of the crash.  I began to wonder if everyone has those thoughts – rationally, I know airplanes are safe – but the thoughts still enter.

I opened my book to try to distract my brain…but my neurotic thoughts wouldn’t stop.

What if this plane goes down?
What if the last phone call was just that…the last phone call?
What emails did I leave unanswered?
What text messages did I forget to send?
Finally…if the plane went down would I have time to make a call?

That’s when the tears began.  I could feel them welling in my eyes and I was hoping and praying that my eyelids would simply swell to keep them all in.  Seriously, who wants to sit beside a 40-year-old woman who is crying on an airplane?

In that moment I thought about my children.  I knew Estelle would be devastated.  I also see and know her inner strength.  I knew people would be able to get to her and help her through.  She’s tough as nails.  She’s strong and independent.  She’s resilient, talented, and so very bright.  She knows how to stand up for herself and isn’t afraid to make decisions that SHE wants.  I knew all of this…

Then I thought about Tucker.  If I had a last phone call, what would I say to Tucker.

I’d tell him he can do anything he puts his mind to.  I’d tell him, “Even if you think you cannot.  You can.  You can because I always believed you can. You have conquered more than you’ll ever recognize.”

I’d tell him never to give up on himself.  I’d tell him, “None of us have given up.  Each and every person you have touched believes in you; from your Kindergarten teacher to your football coach.  Every person has believed in you and not just because we have to or because we should.  We all believe in you because you are remarkable.  YOU make us want more for YOU.  Now, believe in yourself, allow yourself to be loved and supported.”

I’d tell him to pause when he needs.  I’d tell him, “When your brain can’t do it, just close your eyes as I’ve taught you.  I know these moments bother you.  Do what we’ve always done; close your eyes, pause, and let your brain sort it out. Trust that your brain will, just give it a little time.”

I’d tell him to keep talking for himself.  I’d tell him, “I waited for your voice.  Let people hear your voice and your ideas.  They are worth every moment and if people try to cut you off, keep talking.  Your voice is the most important voice in your life.”

I’d tell him to advocate for himself.  I’d tell him, “You know how, simply have the courage to do so.”

I’d tell him to never let Autism get in the way.   I’d tell him, “This thing.  Autism.  It is part of you – sometimes a big part, other times a glimmer – but it’s yours.  Own it.  Realize how it makes you such an amazing person. Have pride in who you are.”

I’d tell him it’s okay to cry. I’d tell him, “Cry and cry often.  Think of tears as a cleansing of your sad heart.”

I’d tell him to hold his sister tight.  I’d tell him, ” Together, you are what remains of me.”

I’d tell him the truth.  I’d tell him, “You are the light of my life, the joy in my heart. Your eyes make me smile and your smile, in my eyes, gives me hope. Hope for all children – that so much can be accomplished when all things are done in love. Loving you and learning about how you tick has been a pleasure – and I wouldn’t have wanted it any other way.”

Finally, I’d give him parting advice.  “Fly Tucker.  Fly.  Do all the things.  Be all you can.  I know you can.  I’ve always known you could.”


Then, I grabbed the sleeve on my shirt, allowed my eyes to burst open, and pretended the story I was reading was incredibly sad.

When I arrived at my location my husband hugged me, Estelle hugged me and kissed my cheek, and then Tucker’s very large man-boy body engulfed me.

He turned my head and put it on his chest
He applied one hand on my back and the other to the side of my face
His chin rested on the top of my head
He squeezed and whispered, “Life is better with you here.”

You too, Tucker…you too.

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.



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.



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?”


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.


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.



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.

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?”

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

Watching him struggle to engage with his peers.

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

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.

IMG_1050 (1)

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.


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.


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.
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:

EF Stats Graphic

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).

Dr. Young Cover Page -Teeth Cleaning-page-001Dr. Young Cover Page -Teeth Cleaning-page-002Dr. Young Cover Page -Teeth Cleaning-page-003Dr. Young Cover Page -Teeth Cleaning-page-004Dr. Young Cover Page -Teeth Cleaning-page-005Dr. Young Cover Page -Teeth Cleaning-page-007Dr. Young Cover Page -Teeth Cleaning-page-008Dr. Young Cover Page -Teeth Cleaning-page-009Dr. Young Cover Page -Teeth Cleaning-page-010Dr. Young Cover Page -Teeth Cleaning-page-011Dr. Young Cover Page -Teeth Cleaning-page-012

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 Melangui

It’s happened again on our campus.

Another young person.  Another life cut short.

After reading my post, “Life” a colleague gave me a book for Tucker.  I’m always so appreciative of these thoughtful, out-of-the-blue gifts. In fact,  I’d prefer to never have birthday gifts and instead receive the ‘I just HAD to get this for you out-of the-blue’ gifts.

Now, in the midst of another loss, I’m compelled to tell all of you about this book.  Why?  Because I think it’s great…and so did Tucker.

It also seems fitting because earlier this week my children and I had a conversation about sadness.  We talked about how being sad and having anxiety are natural and important.  We shouldn’t try to fight off sadness…if we feel it, it’s real.

We wouldn’t know happiness without sadness.  We wouldn’t know peace without anxiety.

These opposites are simply a necessity in our emotional intelligence and experience.

I love this book.  I love everything about it.  I shared it with Tucker – and it resonated with him.  Maybe because it’s so personal – it’s not about looking at pictures that depict people who are sad, “This is what sad looks like.”  In fact, it doesn’t have any pictures of people or children being sad or anxious…but it has the words.

sit in the sun

Words about those feelings…and words to help us overcome those feelings.

What we really loved though?   The images.  These images allow you to express the darker emotions on your own – without any expectation of what it ‘should’ look like.  It was interesting to watch Tucker process these pictures as he generally thrives on more explicit social cues.


This wasn’t about social cues though…this was about giving him the words – and then allowing him to talk about how those emotions personally manifest.

A practice in abstraction…like autism.  No right, no wrong – just unique.
A practice in abstraction…like our emotional experience.  No right, no wrong – just unique.

The Book?  The Melangui by  Sara Schneckloth.

Sara and I have gone back and forth about her book and she agreed to write a few paragraphs describing her work and process.

In looking for children’s books about anxiety or depression, I’ve encountered many literal depictions of tearful faces and blankets held up over worried chins.  As a nervous and angsty child, I don’t recall looking like the kids in these books.  What I do remember is the sense of internal distress and the feeling of holding something complicated inside.  As an adult, I have worked to channel this full range of bodily emotional experience into my drawing practice.

The Melangui is a gentle, abstract, exploration of the darker feelings we all experience.  The book raises possibilities for how positive thoughts and actions may transform heavy or stressful periods into lighter and more spacious times.  The Melangui (a fusion of melancholy, angst and ennui) carries our darkness, yet can also be remade into a creature that is balanced between light and shadow, between color and its lack. 

While I’ve been making artwork for several years around the idea of how we physically hold and manifest emotion, the catalyst for making the book was the Charleston church shootings this past June.  I teach in Columbia at the University of South Carolina, and the shooter is of the same age and background of many of my students.  The unfolding of that event, so close to home and woven into every moment, affected me deeply. 

I began to make quick abstract ink drawings that carried the echo of some of the emotions triggered by the event – despair, anxiety, deep sadness, outrage.  They became the seed for the writing, and through the writing emerged a sense of hope, the belief that we don’t have to give in to our demons, and that there are things that may help to lift us back up.  All the actions – writing, breathing, moving, reaching out to friends and family – are things that have stemmed my darker tides.  

I don’t want the book to serve as a ‘how to’ guide to being happy, but rather to acknowledge the complicated range of our emotions, and that being in our bodies, moving, feeling, and acting, may help to restore a sense of balance and light.

Want a copy?  Sara will even sign it for you…

Go to the book’s website:

(Sidebar…I think it’s comical that an inanimate object like a book has its own website).