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.

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.

melangui3

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:  http://www.themelangui.com/

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

The Right Now

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

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

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

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

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

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

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

You know what though?  Not everyone is like that.

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

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

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

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

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

I like my job.
I equate school as my children’s job.
I wouldn’t go to my job if I didn’t need to make $ to pay bills (I’d instead teach and volunteer in a poverty-stricken area).
Therefore, I go to work for extrinsic rewards (house, car, not to go to jail for not paying bills)
So…I guess I can deal with rewarding Tucker in this way.
It seems another talent I have is rationalizing just about anything.
He replies…telling me that they have already put someone in charge of making ‘Tuck Bucks.’  I thought that was a cute name.
I love his teachers.  Seriously. I. LOVE. HIS. TEACHERS.
They get it.  They want him to be successful.  They know it takes a little extra.  They are willing to go the extra mile…so much so that look at what Tucker came home with today.
IMG_0425

 

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

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

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

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

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

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

The Yell Factor

Okay…sort of a continuation of last week.

So…how is it that I don’t yell?

Some of it is personality and disposition. I’m naturally cheery and positive.  I wake up smiling and talking (which can be quite annoying to some folks).  A couple of weeks ago I had this conversation  with my husband.

Me:  Okay, so I have something to say that’s not very nice.
Him:  Let’s hear it.
I said what I needed to say.
Him:  I just have to tell you that I REALLY like it when you are mean.
Me:  What?!?!
Him:  It makes you seem normal…like the rest of us out here.  I mean, I don’t want you to be mean like the rest of us…but it takes away the pressure.   You are always nice and try to see everyone’s angle in every conversation/situation, you generally don’t judge, anyone.  When other people are mean to you, you are hurt but you assume they weren’t trying to be nasty. Just once in awhile I like it when you are mean, but your mean really isn’t that mean…it’s just mean for you.

So..yes…that could be some of it. My disposition, that is.
So..yes…that could be some of it. My unassuming, that is.
So..yes…that could be some of it. My perception checking, that is.

Honestly, I think it has more to do with my nature of being a teacher.   Teaching is more than my job – teaching is who I am.  It’s just one of the reasons that I love being Tucker’s mom…and why I welcome autism with open arms.

Autism is just that…it’s a thing.  I don’t ever feel the need to ‘defeat’ it or ‘defend’ it – it’s a thing which makes my child different, not bad.  I don’t feel it’s something that needs to be cured, it is a thing that allows me to be even more me.

It is autism and I am a teacher.

I am not just a teacher.  I am a teacher, it’s what I was born to do…in the same way my dad tells everyone he was born to farm.

It’s my giftedness.

When I was a child my mom had antique school desks…I used them daily.  I sat my stuffed animals in rows and made them take math tests.  I created essay tests.  I graded papers.  While other children were shooting hoops, climbing trees, or playing Barbie’s I was playing…teaching (not school…I never played the role of student).

schooldesk

As I aged, I always wanted to help my teachers.  I helped make bulletin boards and took the erasers to the back of the building and beat them on the brick wall.  I offered to help other students.

I wanted to be a teacher from the moment I remember thinking about what I wanted to be.  Honestly…it may be genetic.  My Grandma was a teacher and I have four aunts that are (or went to school to be) teachers.

Get ready.  Here it is.  My secret to this ‘no yell’ thing.  It’s not rocket science…I promise you.  This is how I don’t yell. I turn every frustrating moment I can into an opportunity to teach.

An example?  Tucker read the lessons at church a couple of weeks ago.  As we were sitting have cookies and punch (like we do after every service) people were telling him what a great job he did.

He did not respond.

That could have made me angry.  I could have thought that he was simply being rude and inconsiderate.  I could have raised my voice and said, “TUCKER!  Come on! These people are paying you a compliment!  Show some respect and say thank you.”

Alas…that would have accomplished nothing but a quivering lip and a sad face.

Why?

Because he didn’t know.  That type of reciprocity in conversation is not natural.

I looked at my husband and said, “He doesn’t know.”  To which he said (in a calm ‘teaching’ voice), “Tucker.  When someone comes to you to tell you that you did a great job reading you need to look at them.  You look at them so they know you heard them.  Then say, ‘Thank you’ because they are giving you a compliment.”

Tucker responded, “Oh.  Okay.”

From that point on he responded in thanks.

We chose a cheery disposition.
We assumed the best and recognized he mostly likely didn’t know how to respond.
We checked our perception by thinking deeply about the situation – trying to find a reason he was not responding in a suitable way.
So, we taught him.  Taught him without raising voices, taught him without frills, taught him in a matter-of-fact way.

People don’t learn through yelling.  People don’t learn by simply being told.  People learn through thorough, meaningful explanation.  People learn by being shown and practicing a new and/or different way.

I’m a teacher which means I have an understanding of process and mistake-making.  I relish in the imperfect. Tucker is simply a young man whose understanding of the world lies in explicit meanings, unfortunately he lives in a world full of implicitness.

All things must be taught, and I am a teacher.

Double Edged Swords

A couple of weeks ago my daughter had her new curly, blonde-haired friend over for a sleepover.  She, the friend, and Tucker were sitting at the kitchen table eating a ridiculous number of grilled cheese sandwich bites I had prepared, each with their own ‘dipping’ sauce.

As I was about to round the corner I heard her friend say, “Your mom is so nice.  Seriously – like even her voice it’s just so calm and kind.”

I stopped in my tracks, I always thought I sounded a bit like Minnie Mouse.

Estelle replied, ‘Yeah. She’s awesome. She never yells, is always generous, and understands that we make mistakes.’ Then Tucker chimed in, “She’s always making us do things for other people which can get annoying–but that’s just how she rolls.’

I walked away with tears in my eyes and couldn’t help but think about the viral video from a couple of years ago – how as a mom, we think we are constantly failing…but our children think we’re pretty awesome. If you haven’t seen the video – here is the link.  CRY WARNING!!  DO NOT WATCH if you don’t want to cry.

I was so moved by what they said that I (of course) posted on Facebook.  Then someone wrote, “You are such a good mom.  Seriously, I don’t know how you do it.  I really want to be more like you.”

That’s nice – but at times, I’m a hot mess (SERIOUSLY…read Day #166 – I’m Not Supermom)

My mother-in-law and I once had a wonderful conversation about mothering.  She said to me, “I told  my boys – there are better moms, worse moms, but I’m the mom you are stuck with, so we may as well make the most out of it.”

That made me laugh…and think.

I’m the mom my children are stuck with.

Another friend posted, “I need to take lessons on that no yelling thing.”

I thought about that and the advice from my mother-in-law.  I couldn’t help but to think…most of my mothering behaviors have been dictated by what Tucker needs to experience high levels of success. Yelling is not my thing, but it may be yours.  Whichever you believe…your children will turn out however they turn out.  As my children age, I’m recognizing what little impact I REALLY have on their decision-making and behaviors.

At an early age we did homework right after school -all in an effort to help them develop good habits.  They arrived home, we sat at the table with a healthy snack and completed homework.  When my children entered Middle School I decided it was time to ‘cut the strings’ and allow them to show the good habits they had learned.  I won’t always be there – and I wanted them to show that they could complete their homework, independently.

As it turns out…neither of them are ‘good’ at doing their homework and I’m constantly getting ‘missing assignment’ messages from school.  I also no longer feel like it is my job to remind them, push them, or require them to do it.  They face their own consequences.

I make my bed every morning.  Why?  It helps me  realize that I’ve accomplished something for the day – even if it’s as trivial as making my bed.  Honestly, it may be the only thing that I bring to full completion all day long.  My children have watched me make my bed and helped tidy the house every day of their lives.

As turns out…neither of them are ‘good’ at keeping their rooms clean.  I often shut their door because my eyes burn at the site of the state of their room.

There are ‘good’ moms who end up with ‘crappy’ kids.
There are ‘crappy’ moms who end up with ‘good’ kids.
I’m not sure there is a pattern…so what I’m beginning to realize is this.

My children’s awesomeness is NOT a reflection of me.  I cannot take credit for their amazingness.
My children’s not-so awesomeness is also NOT a reflection of me.  I cannot take credit for their less-than amazingness.

It seems to be…regardless of what we do, we will mess up our children.  My children have lived in a nice bubble.  Do you know what that means?

They don’t know how to deal with mean people…let’s be honest – there are lots of mean people out there.

They have unrealistic expectations of how people are…let’s be honest – people don’t always have the best intentions.

Their  expectations of how people forgive are skewed…let’s be honest – people hold grudges for A LONG TIME.

They extend grace to everyone, which is a great virtue…let’s be honest – people take advantage of others, often.

They constantly think the best in people…let’s be honest – people can be (and often are) manipulative.

They think conflict is always dealt with in a calm matter…let’s be honest – hahahahahahaha…we know that’s not true.

They don’t hear people yell…let’s be honest – other people yell…a lot.

So, yes – I may be a ‘good’ mom in many of your eyes – but here’s the truth…

I have woefully unprepared my children to deal with some aspects of ‘real’ life…and someday that is going to come back and bite me in my backside.  That’s the truth and it will be a GREAT BIG BITE.  I’ll be left trying to help them pick up the pieces and make sense of this not so nice world.

Please, moms reading this…please stop comparing.  You’re doing the best you can in any given moment. Find peace in knowing that your children will become what they want to become, the one thing we can all do is love them…and that’s about all.

A Different Type of Assessment

So, earlier this week Tucker started my vehicle for our morning commute to school.

He sat in the vehicle waiting patiently for me, I was outside trying to wrangle the dog.  Wrangle the dog on a chilly October morning Iowa .  Was I dressed for the weather?  Never.  I stay in these flip-flops until the first snow hits the ground.  When I finally found my frigid self in the driver’s seat I was a bit harried, rushed.  I felt an immediate warmth and calm.  I looked left and noticed three tiny lights.

He also turned on the seat warmers.

I told him thank you – I gave his hand a big squeeze and he said, “I know you’re always cold.  Just trying to take care of you.”

Yep, that’s my child.

He’s not the fastest.
He’s not the smartest.
He’s not the star student.
He’s not the starter on a team.
He’s not the most popular student.
He doesn’t get fancy awards for having character.

He’s not really the best at much…except at being an AWESOME human being.

It’s report card time in our house – and it’s always a distressing time. He rarely feels ‘good enough’ in all of the categories on paper. So, this year I’m making him a report card from home and when it’s time…a ‘home’ IEP. On that report card, 10 categories not assessed by the school structure.  10 categories that reflect who he is instead of how he performs with a pencil and paper.

Kindness – A+
You turned on the car warmer for me. You tell your sister that she looks nice.  She broke her wrist two weeks ago.  Since then, you’ve helped her carry her cello without anyone asking.

Empathy – A
Last week you accidentally hurt the kitten. You were beside yourself with grief. You seemed a bit hysterical. You don’t get an A+ because you could get better at empathy by thinking about what ‘may’ happen if you toss the kitty.  Thinking before action.

Expression – A-
When given the time and space you are very good expressing your wants and needs. To improve your score, work on expressing your wants and needs before I have to ask because I recognize sadness and frustration in your voice.

Thankful – A+
You never want for anything (except a xBox 1). You consistently tell me that all of your things are fine. You often say to me, “Why would I need another pair of shoes if one fits? Why would I need more shorts? I have two pair.” When I took you on a spontaneous trip to Minneapolis we arrived home at 11 PM and you said to me, “Mom, thank you for taking us. That was a fun trip.”

Recognition of Feelings A+
Maybe it’s all of the ‘work’ we’ve done since you were very young, but you are so adept at recognizing how other people are feeling. If I answer you in a tone that doesn’t resemble my normal cheery self you immediately ask what is wrong. You immediately ask if I am okay. This is NOT a skill that many people have, but you do.

Disposition – A-
I really appreciate the way you wake up every morning. 94% of the time you wake up and reciprocate my good morning. 94% of mornings you accept a good morning hug with a smile. A LOT of people wake up grouchy, and you are not one of them. You received an A- because I would like if you could reciprocate that disposition to ALL of your teachers…even when they ask you to do something you don’t want to do.

Generosity – A
You are always willing to give. You constantly think of things we can give away. You are quite unselfish and always willing to share (unless it is salsa). Last week during your football game two of your friends were hurt. You didn’t get to play much because you weren’t following the team. You stood by your friends while the team moved up and down the sidelines. You gave of your own playing time to make sure they would be okay.

Helpfulness – A+
I seriously cannot underscore how helpful you are. Any time I ask for help, you help. You never huff, or puff, you never say ‘not now,’ or reply that it’s ‘not my job.’ I ask, you help. That’s really phenomenal.

Smile – A+
Your smile lights up a room. Your smile and laugh are contagious. Your smile cures anything that ails the people around you. There is more power in that smile than you know. So, keep smiling…the world needs more you.

Love – A+
Your love is astounding. Your love makes me smile in the middle of the day. Your love supersedes the moment. Last week at your football game you turned around and motioned for me to come to the sideline. I did (albeit a bit annoyed because you were in the middle of the fourth quarter…not even during a time out). When I arrived you put your arm around me and whispered, “I love you” in my ear. I looked at you and you said, “That’s all. I just wanted you to know right then.” Tucker, that is amazing love.

Comments:

My dearest child, please know that you have all the ‘requirements’ of being a good,  decent, and productive human being.  I know it doesn’t often feel like you excel.  You are not asked to be on special teams or special classes or special clubs.  I know you compare yourself to others.  Trust me when I tell you that very few of us grew up being invited to be a part of elite…well…elite anything.

The vast majority of us are trying to be better at the list above.  You already rock that list. So, you are well on your way to being a remarkable human.  All I ask of you – please be kind to other people in this world; no matter who they are, where they have been, what they have done, or what they do.  Be good and make it a better place.  I know you are able.

aPlus

My Challenge to Fellow Teachers…

This year…just this year – could we, should we, would we…do something different.

How about a paragraph for each and every child.  Just one paragraph praising them for something that is NOT on a report card anywhere…here is a list to get us started (thank you, Maria Montessori).

  • Creativity
  • Critical Thinking
  • Resilience
  • Motivation
  • Persistence
  • Curiosity
  • Question Asking
  • Humor
  • Endurance
  • Reliability
  • Enthusiasm
  • Civic-Mindedness
  • Self-Awareness
  • Self-Discipline
  • Empathy
  • Leadership
  • Compassion
  • Courage
  • Sense of Beauty
  • Sense of Wonder
  • Resourcefulness
  • Spontaneity
  • Humility

The Greatest Fight

While I try to be very positive in this blog and in life – there are days I feel like I’m in the fight of my life.

I’ve had several of them lately.  It’s a combination of my own responsibilities and being a mom – but not just any ‘ol mom.  A mom to a boy (er…young man) who has some extra very real stuff going on and that extra stuff is here to stay, forever.  Get ready for some real honesty.  I thought to myself the other day… “I wonder what it would be like to not have autism in our family.  I wonder what it would be like to just deal with ‘regular’ mom stuff.  I wonder what it would be like to just do the work thing and then homework, supper, bed, and maybe a couple of social snafu’s.”

Let me also say that I don’t know of ANY mom who only has ‘regular’ mom stuff to deal with.  What is ‘regular’ stuff anyway?  All of our children are facing situations and struggles…all of them, and I get that.

This week has just been more full of these days…days of watching my son struggle, and I can’t do a damn thing to help.

Autism is a part of who he is and we long ago ‘accepted’ that (not like there was a choice).  We’re constantly trying to make the best of it all – consistently talking about how autism makes  him unique and wonderful.  Honestly though?  Sometimes I hate it.  There are days when it feels like it’s a heavy boot pushing him down, further and further towards the ground and I can’t do anything but watch.  There are days when it feels like a dark cloud is looming over his head and I can’t do anything but watch.  There are days when it seems his body and brain have been taken over by someone I don’t know and I can’t do anything but watch.

There are days when I watch him try to help others and they don’t respond with gratitude and I can’t do anything but watch.  There are days when I watch and listen to others react to him and I can’t do anything but watch.  There are moments where I watch him trying to communicate to someone not willing to wait for his words and I can’t do anything but watch.  There are days where his head hangs to his chest and I can’t do anything but watch…always on the sidelines.

Hold on, that’s not entirely true…I do ‘do’ something.  I put on a smile.  I try to make him laugh.  I hug him.  I tell him how much I love him.  I try coaxing his troubles out of him.  Truth be known though…there are moments that it doesn’t work.

Those are the moments that I’m reminded of our reality.  This is all my perception, I can’t begin to imagine what it feels like to him.

In these moments I’m left feeling like I’m grasping at his fingertips to bring him back and I’m just barely hanging on.  It’s like a bad dream…I keep reaching and he keeps getting further away from me.  He’s falling away and I’m grasping at anything to not let it take hold…to not let it pull him down.

I’m fighting.

Fighting for him.  Fighting for him when he can’t.
Being his happy.  Being his happy when he can’t.

He’s had a rough week and everyone around him knows. These are the weeks that I become numb.  Numb while reading messages from teachers, numb while watching him with peers, numb watching him try to make sense of a sentence, numb. These are the weeks that I have to dig just a bit deeper to not lose it.

Weeks like this are the problem with Tucker’s label of ‘high-functioning.’  High-functioning, my ass (excuse my cursing…I apologize).  I hate that label.

So…
He’s dresses himself.
He’s feeding himself.
He’s going to school every day.
He’s mostly doing what he should.
He’s compliant with most of my requests.

He’s functioning all right  – but he’s also been in tears nearly every morning and night.  He’s having troubles at school.  Last night while sitting in our vehicle I finally coaxed him into talking to me.  While holding back tears, lip quivering, holding and spinning his football he told me that ‘nothing in the world was right.’  He told me he ‘hated everything except you, mom.’ He told me that he ‘isn’t smart and will not go to college.’  He told me he, ‘can’t do anything right.’  Then, he repeatedly hit his head with his football.  Over and over again….and again…and again.  I asked him to stop.  He continued.  I finally took the football and cradled his head into my chest.  I didn’t cry.

“I’m just having a bad week mom.  My brain isn’t right.”

I was tired, frozen in the moment, and numb.  The only thing I could muster was, “I love you.”

He got out of the vehicle and then I sat silently for 10 minutes.  I know his brain isn’t ‘right.’  I want SO badly to help him through it, but I can’t imagine how much it’s hurting him. Because he is ‘high-functioning’ he knows what he should do….he can logically understand…but cannot get there.  How is that ‘high-functioning?”  Sounds more like a never-ending nightmare to me.

I went inside and melted into my husband’s arms, into 1,000 pieces and what felt like 10,000 tears. There are these weeks…the very real weeks.

The weeks where the greatest fight is to not try to fix it…because I can’t.  I don’t know how.

The weeks where the greatest fight is to simply accept “having a bad week” because it’s the only explanation he can give.

The weeks where the greatest fight is to not give in to anger, frustration, and heartache.

The weeks where, honestly, the greatest fight is to stretch just bit more, to keep holding on, to not let go.

holding hands

Because love wins, always.

Next week will be better.

Life

Last week on the campus where I teach a young woman took her own life.  She was 18.

I didn’t know her and yet, was profoundly affected.  Profoundly.

That afternoon I went home and found both of my children in the kitchen.  Tucker was bringing a pizza over to the table as Estelle was reaching for two plates.  They, albeit knowingly, set the environment to have a very serious discussion.

I told them about Katie.  I told them what happened.  I cried.  Tucker asked if I knew her.  I told him I did not, but that didn’t stop the hurt.

I told them that she was just too young – she had a life full of promise just waiting.
I told them that she was someone’s daughter – like you, Estelle.
I told them that she was someone’s sister – like your sister, Tucker.
I told them that she was someone’s friend and cousin, granddaughter and confidant.

Her life mattered to me – whether I knew her or not.

They also started to cry.  I’m not sure if they were feeling sad for Katie and her friends and family or whether my tears simply triggered theirs.  It didn’t matter.  Here is what I said to them…

“No matter what you do in life, nothing can separate my love from you.  Nothing.  Fail a class?  No way.  Flunk a test?  Nope.  Cheat on something?  Nada.  Nothing.  Nothing will stop me from loving you.  There is nothing in this world that you cannot tell me.  Nothing that you can do will make my love for you lesser than the day before.”

I’m sure Katie’s mom told her the same thing.

Then I made them look me in the eye and promise me that they would never make that choice.  While I know nothing in life is certain – maybe, just maybe, if they are ever in that moment they will remember our moment.  The moment that I made them look at me.  The moment I made them say the words.  That moment…it may save their life.

It was a somber evening and I found myself in intermittent tears.

When I put them to bed that evening, I cried so hard I could barely talk. I just was feeling so much pain.

On Day #241 – Flowering Self-Esteem I shared the struggles that Tucker has had with self-esteem.   At the tender age of five he would say things like…

“I should just die.  You would be better off.”
“I should just kill myself.  Life would be better.”
“I can’t do it.  I wish I was dead.”

It wasn’t once – it was over and over.  Storch (2013) found that, ‘youth with ASD may make suicidal statements when they are emotionally overwhelmed and incapable of applying more effective functional communication, emotional regulation, and general coping skills to manage their distress.”  That may be – but as a parent – any comment like that is real…and every moment that contained these thoughts/messages was simply heartbreaking.

While I haven’t heard any of these comments for two years, I know they reside deep within him.  After I tucked them in that night I lost my breath.  I literally couldn’t breathe. I couldn’t walk back up the stairs.  Instead, I sat with my head in my hands…quietly weeping, silently praying.  Why?

I know about this reality…and have chose (until now) not to write about it.  It’s real though – so, I must.  What does Katie’s death have to do with autism?  Everything.

  • Mayes (2012) found that suicide ideation or attempts were rated as ‘sometimes to very often a problem’ by mothers 28 times greater than for neurotypical children.  She also found that ‘the frequency of suicide ideation or attempts in children with autism was twice as common in males than females’ and that children ’10 years of age and older had three times the frequency of suicide ideation or attempts than younger children.’
  • Raja (2011) found that 46% of adult patients with ASD exhibited suicidal behavior.
  • Mikami (2009) found that 13% of adolescents who were hospitalized for a suicide attempt met the criteria for an ASD diagnosis. Among those 13%, 42% had a past history of attempted suicide.
  • Shtayermann (2007) reported that 50% of adolescents and young adults with Asperger’s disorder exhibited suicidal ideation. (Caveat…this was a very small sample)

Katie had suffered from depression for quite some time.  Children with autism are known to have high levels of depression and anxiety.  Often times depression follows difficulty with social interaction, bullying, and victimization.

  • Mayes (2012) found that in a sample of 350 children (with ASD), mothers reported depressed moods in 54% of children with high functioning autism (not my word…but important to know) and 42% with low functioning autism (again…not my word…but important to know).
  • Matson (2014) conducted a study and found that greater rates of anxiety and depression are found in ASD children as compared to their neurotypical peers.
  • Strong (2012) also found that 54% of children and adolescents with an ASD were also categorized as borderline or clinically depressed, while 56% met the criteria for an anxiety disorder.

Does it pay to work in a University and constantly read new research about ASD?  Yes…and no.  This research has helped me to understand Tucker and help him in so many ways….but it also brings all of the realities to the front.

So, why couldn’t I breathe?  It happened less than two blocks from where I work – to a young woman who seemed to have everything going for her.  Her friends described her as beautiful, talented, with a smile that could light up a room.  She was far from alone (at least from our perception), was quite popular, and had a bright future.  To truly recognize that someone with ‘all of that going for them’ can be in such a dark place is haunting…it’s all too real.  Especially when I recognize the heightened risk in my own home.

So I’ve been checking on him during the night while letting tears roll down my face as I pray, and hope, and pray, and hope – because I think I’ve done all I can do.

However, in typical Tucker fashion he brings me out of that very scary place.

On Monday night, while talking about the blood moon (and how it appeared to look like the world was ending) he declared, “Mom, I know you’ve been thinking a lot about that girl at your school.  I really am sorry that happened.  I need you to know that the only time I would take my life is if there was a Zombie Apocalypse and I was the only one left, because there really wouldn’t be a point. I certainly don’t want a zombie eating me bite by bite.”

So, there’s that….sunshine after the rain.


Research used in this writing:

Mayes, S., Gorman, A., Hillwig-Garcia, J. & Syed, E. (2013). Suicide ideation and attempts in children with autism.  Research in Autism Spectrum Disorders. 7, 109-119.

Matson, J. & Williams, L. (2014). Depression and mood disorders among persons with Autism Spectrum Disorders. Research in Developmental Disabilities. 35. 2003-2007.

Mikami, K., Inomata, S., Hayakawa, N., Ohnishi, Y., Enseki, Y., Ohya, A., et al. (2009) Frequency and clinical features of pervasive developmental disorder in adolescent suicide attempts.  General Hospital Psychiatry, 31, 163-166.

Raja, M. Azzoni, A., & Frustaci A. (2011).  Autism spectrum disorder and suicidality.  Clinical Practice, Epidemiology and Mental Health, 30 97-105.

Shtayermman, O. (2007). Peer victimization in adolescents and young adults diagnosed with Asperger’s Syndrome:  A link to depressive symptomatology, anxiety symptomatology and suicidal ideation.  Issues in Comprehensive Pediatric Nursing, 30,  87-107.

Storch, E., Sulkowski, M., Nadeua, J., Lewin, A., Arnold, E., Mutch, P., et al (2013).  The phenomenenology and clinical correlates of suicidal thoughts and behaviors in youth with Autism Spectrum Disorders.  Autism Developmental Disorders, 43, 2450-2459.

Strong, J.F., Kenworthy, L, Danilos, P., Case, L, Wills, M.C. Martin, A., et al (2012). Depression and anxiety symptoms in children and adolescents with autism spectrum disorder without intellectual disability.  Research in Autism Spectrum Disorder, 691), 406-412.