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.