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…

fairandequal

(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…

fullsizerender

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 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.

10:51.

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.

rainbow

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.”

airplane-md

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.

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.

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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.

namaste-meaning

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.

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.

scrooge-1951-with-xmas-past

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:

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.