How a Seven-Year-Old Can Educate the World: #ShareYourAutism

My seven-year-old son recently asked me how many surgeries he had to have before we realized he had autism.

It was a reminder to me of how little any of us really understand autism. In truth, trying to explain his diagnosis to him was hard. It’s so, well, open-ended. It’s a spectrum, right? People hear the word autism and picture a puzzle piece.

During the same conversation about the amount of surgeries it took to determine his diagnosis, my son told me he met a boy whose brain worked differently too. He has…hamburger something?

Aspergers. Which isn’t technically a diagnosis anymore.

And the confusion builds…

What does autism mean?

The prefix “auto” means “oneself” and the suffix “ism” is used to create action nouns, so the term literally means, “to retreat within one’s self.”

In 1908, the term was created by Eugen Bleuler to describe his withdrawn schizophrenic patients.

In the DSM-V, it’s categorized as Autism Spectrum Disorder 299.0.

The Oxford Dictionary defines it as a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

What does autism mean?

Here’s what I know.

My son has autism, so it is a word that is very personal to me. Even more so to my son. He wants to understand. Ultimately, I can only share with him what limited knowledge our medical field currently has while they continue to test hypotheses and make claims that may or may not be accurate.

So we wait…

In the meantime, what we all have, are our stories. Stories of our own experiences with autism, whether it be directly or as a loved one.

My son, at seven years old, had the courage to share his story to his entire first grade class. With help, he created a Google Slide Presentation, read from it using the classroom’s Smartboard, and answered questions from his peers. He even redirected the class when they got a bit off-topic (Who’s your favorite Pokemon?) by moving back to a specific slide and asking, “Okay, who has a question about autism?”

In our house, autism means being brave.

What raising a child with autism has taught me is that we shouldn’t avoid talking about it. We shouldn’t be embarrassed or afraid; autism is another way of thinking and viewing the world. It may look differently or feel differently or act differently from what our society views as normal, but that doesn’t make it less. In fact, as I’ve come to learn, it makes life more.

I ask all of you, not just this month of Autism Awareness, but from now on, to not be afraid to talk about our differences with our children. If you don’t know the answers, let them know. Then go find those answers with them. If you shy away from the hard questions – What’s wrong with that kid? Why is he spinning around and flapping his arms? – you are inherently teaching them that what they see is something to be afraid of. Fear stems from a lack of knowledge.

Sharing stories can ease that fear.

My son, and so many others like him, are a living symbol of autism. It is a badge of honor, as well as a heavy burden. I ask all of you to lighten his load. Accept him. Love him. Embrace him.

Continue to share and to listen so the stigma and fear and frustration surrounding autism can fade.

My son did.

So can you.

#ShareYourAutism

My son’s presentation (modified for anonymity)
Please feel free to modify and use!

 

This post also proudly appears on The Mighty.

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Autism Still Lives Here

Autism still lives here.

I want it to leave.

I’ve tried taming it, coaxing it, encouraging it to move on. For awhile now, I thought it listened. So sure was I that it had vacated the premises, I made comments like, “I’m not so sure he even has autism,” and “Was the diagnosis even correct?” These comments, more often than not, have been met with sympathetic looks or avoidance of eye contact altogether, making me more angry and determined to boot Autism the hell out.

Those of you who have housed Autism for years probably think I’m ridiculous. How could I believe that Autism would simply go away?

Denial.

But I’m coming ’round.

Two years ago, when we received the formal declaration that Autism was making itself a permanent resident in our home, I did everything I could to make it comfortable. Hours of research, reading, phone calls, therapy sessions, doctor’s visits, and social skills classes ensured we could co-exist.

We got used to, even comfortable with, each other. I found myself forgetting Autism was around. I stopped giving it attention. Books got dusty, testing stopped, therapies started to wane, my writing came to an abrupt halt.

No one likes to be ignored.

Autism began following me. It would whisper in my ear at night, sometimes slipping casually into conversation with acquaintances and co-workers. It would manifest itself in my students, or appear on TV. It would proclaim itself loudly in the words of therapists and teachers and principals. It would blindside me in books read purposefully for escape. It defied my denial; it demanded my awe.

Autism still lives here. It reminds me of it constantly.

Autism likes to argue with me, rigidly refusing when it feels I have lied.

Autism likes to scream and hit and sometimes bite.

Autism doesn’t like to look me in the eye.

Autism likes to confuse my son, making it nearly impossible for him to understand his peers.

Autism likes to make my son feel overwhelmed, causing him to swing his arms and bump into walls.

Autism likes to make my son feel clumsy when he can’t catch a ball.

Autism like to make my son feel stupid when he can’t get things right the first time.

Autism makes my son cry.

I hate autism.

“Mommy, we don’t say hate.”

“Sorry, honey.”

Autism.

If I say the word enough, will it lose some of its power?

Autism, Autism, Autism.

We never know the words we will collect along the way, the ones which will forever reside within us. Autism is one of mine. I’m sure you carry your own.

Autism: a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Autism: a resident in my five year-old’s mind.

Autism still lives there.

And I am still adjusting.

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Public Domain Photo

This post also appears on Sammiches and Psych Meds.


 

 

 

 

 

Raising the Socially Awkward Extrovert

 

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Me! Pick me! I know! I know!

You know this child.

He pushes his way to the front of the line, to the front of the class, to the front row of the photo. His hand is the first one up, his answer shouted out before he’s actually called on. He sings the loudest, dances the most exuberantly, appears the most confident.

That’s my child.

I love him to pieces.

His desire (and demand) to be noticed is commendable.  How many of us would rather shirk in the sidelines?  He makes me proud on a daily basis for his passion and confidence.

He also worries me.

We all know this child is – let’s be honest – kind of annoying. He’s the one the teacher initially appreciates, but eventually gets frustrated with. He’s the one the other kids start to dislike because he comes off as a know-it-all and interrupts them constantly.

My worry is that my child won’t pick up on these social cues. He won’t realize when he should keep his hand down so others have a chance. He won’t realize he’s actually blocking someone else when he rushes to be in the front row of the picture. He won’t realize that when he’s shouting out answers, he’s actually disrespecting the teacher.

My son has autism. The social world doesn’t make a lot of sense to him. He wants to be a part of the world – oh, yes – but he struggles with how to do this in a way that respects others. He misreads cues. He assumes others know what’s in his mind.

As an example, he told me a few weeks back that “Johnny doesn’t like me.” When I asked him why, he said, “He doesn’t want to play with me.”

Yet, the very next day as I was dropping him off at daycare, Johnny walked right up to my son and said hello.

My son didn’t acknowledge him. I tried to ask my son why he didn’t say hello, but I couldn’t get him to look at me or respond. He had already moved on to the next task. My theory is that, in my son’s mind, he had said hello. He assumed that Johnny knew he was happy to see him.

But what happens when kids stop saying hello because they don’t get a response or even the acknowledgement of eye contact?

What happens when my son becomes more than just a boisterous little boy whom we can forgive because he’s four and simply becomes that awkward kid who’s always making a scene?

These are the thoughts that race through the mind of a mother whose child has struggles, but is brave and outgoing, nonetheless.

While nerve-wracking, I recognize there are far worse issues he could be facing.

But I’m a mother. Forgive me if I continue to worry.

What worries do you have for your child? 

 

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!Want to join in on next month’s Sensory Blog Hop? Click here!

This post also appears on Sammiches and Psych Meds.


Meltdowns: “You ain’t seen nothin’!”

Whenever my friends describe “meltdowns” their young children have, I have to restrain myself from busting out into maniacal laughter.

They really have no idea.

If you’re a parent, you know what meltdowns look like.  They’re not pretty.

If you’re a parent of an aggressive child with special needs, you know what a meltdown feels like.

You’ve got the bruises, blood, or black eye to prove it.

It was my son’s aggression at an early age that clued my husband and I in that something wasn’t quite right.  He would smack his head on the floor at 13 months old when he was frustrated. He couldn’t go more than few minutes at daycare without banging into someone or something, constantly pulling out the hair of other children and the daycare providers.

In one respect, Big C’s aggression has been a blessing.  It’s helped us realize early in his life what his struggles are, and while it took a few years to really pinpoint the issues, we have a much better handle on how to handle him (and ourselves) when he gets overstimulated.

The great news?  Big C’s tendency for aggression have diminished tremendously over the past year.  Don’t get me wrong.  He’s still way more aggressive than the average four year-old (he threw an eight ball at my head a few weeks back because he didn’t want to end the play date), but at least he’s starting to recognize the aggression in himself and, every so often, stop himself before it escalates.

More often though, he has the meltdown, then explains later why he was upset.  For a four year-old, I think this is impressive.

Very recently, a new form of meltdown has emerged.  It’s one I haven’t quite figured out how to cope with yet.  I find myself just getting frustrated.

Lately, if Big C doesn’t want to do something or feels threatened in some way, he closes his eyes, starts rocking his body, and makes animal-like moans.  His ability to use language completely shuts down.  When I try to get him to talk, he just runs and hides.  This has happened several times in public places like daycare and preschool.

The only “strategy” that remotely works is to wait it out.  It’s not easy though.  I find myself getting more and more frustrated and less and less patient.

BUT, the last time this happened, a couple of days ago, after the meltdown subsided, he hugged me so tightly we both fell over and then he said, “I’m sorry I’m frustrating you.”

Seriously?  How do you not smile at that?

The moral of this story?  Epic meltdowns can sometimes lead to epic apologies.

What are some of your strategies for dealing with meltdowns?

Note: this post is part of a blog hop. Click the link below to read more blogs about what it’s like to have a sensory-special kid!

SensoryBlogHop

This post can also be found on the blog, Sammiches and Psych Meds.


What my Special-needs Son CAN Do

ASD: Autism Spectrum Disorder   SPD: Sensory-processing Disorder

Many with ASD also have SPD.  Welcome to the land of acronyms.

My four year-old son was diagnosed with ASD last February.  If you’re a parent of a child labeled with special needs, then you know what it’s like to agonize over what your child can’t do.  It becomes an obsession; you imagine a life full of dreams dashed.

For this very post, I had planned on writing about how Big C can’t play catch, even though his twenty-two month-old brother so desperately wants to play with him.  When Big C catches the ball (on the rare occasion he does), he just runs off with it.

But I never wrote that post.  Because I realized,

Who gives a shit?  

My son’s lack of desire or ability to play catch isn’t a deal-breaker to happiness.  He doesn’t care.  Why should I?

It got me thinking.  Instead of agonizing over my son’s struggles, what if I focused on his strengths?  This is such a more productive and positive way of thinking, it’s embarrassing to admit it took so long to consider it, but that’s what happens to us as parents when professionals start slapping labels on our children.  We get scared, we get defensive, we get deflated.

So for this post, I want to take a moment to celebrate what makes my oldest son truly special to me.  This is what Big C can do:

  • My son can experience life with an intensity many long for.  His moments of happiness are so amplified, he cannot help but literally shout, embrace, and jump for joy.
  • My son can persevere.  He gets angry and frustrated, but always presses on.  A month ago, he wanted to learn how to ice skate.  As he grew more frustrated, I became frustrated and wanted to stop, but he told me, “No, Mommy.  We can’t give up.  I have to do this!”
  • My son can melt my heart with his compliments.  I was trying a dress on recently and he said, “Oh Mommy, you look beautiful.  Just like a princess!”
  • My son can show true remorse.  Without fail, after a meltdown, he will come to me and say sorry.  Sometimes, it doesn’t come until the next day, but it always comes when he truly is sorry and ready to admit it.
  • My son can pay exquisite attention to a task he is truly interested in.  In recent months, he’s demonstrated his ability to play for hours with Legos, creating the most imaginative creatures, vehicles, and buildings.
  • My son can feel selfless love.  Whenever I catch him giving his younger brother a kiss or hug just because he’s overwhelmed with emotion for him at that moment, my eyes and my heart swell.
  • My son gets me.  Just this weekend, I had my own minor meltdown and went upstairs to cool down and take a break.  My son followed me upstairs and said, “Mommy, just take a deep breath.”  He then sat beside me and rested his head on my shoulder.  “It’ll be okay.”
  • My son can bring tears to my eyes.  If you could see me now, you’d know exactly what I mean.

Now, it’s your turn to share.  What can your amazing children do?  Let’s celebrate them here!

Note: this post is part of a blog hop. Click the link below to read more blogs about what it’s like to have a sensory-special kid!

SensoryBlogHop

This post also appears on Sammiches and Psych Meds.
A version of this post also appears on The Mighty. 

 

A Mother’s Guilty Secret

Okay, here goes…

I dread picking up my children from daycare.

In fact, I find ways to prolong it.

Sick, right?  I’m supposed to want to pick them up.  I’m supposed to miss them so much from a hard day’s work of teaching that I’m bolting out the door at 2:20 pm.  I see a lot of my fellow teacher moms doing it.  Meanwhile, if I don’t have any meetings to attend and I’m not expecting any students to stop by, I find myself locking my classroom door, turning off the lights, and basking in the sweet silence that is suddenly my classroom.

Barring no prior obligation, 2:20-4:00 is the ONLY part of my day I get completely to myself.  It is sacred, and I never want to give it up. It is a time to get tasks done in a brisk, orderly fashion because my children, and the 165 other “children” I have, cannot inundate me with questions, concerns, and demands.  It is pure serenity, even if I’m grading papers, and that’s saying something.

Sadly, my need for quiet time is not the only reason I dread picking up my children from daycare.  Oh, if only it were that simple.

I dread the encounters with the teachers and the inevitably disheartening news I will hear.

I imagine a mom who walks into the classroom, glowing with pride as the teacher recounts with great zest how little Billy (why is it always Billy?) was the perfect angel yet again, sitting quietly during circle time, using the bathroom with no complaints, wiping his table space when lunch time was over.  The perfect angel who shares his toys and makes all the teachers wish he were their child.  Oh, he’s such a little darling.

This is what I get: Big C had a really rough day.  He pulled a girl across the room by her hair.  He knocked over a little boy’s block tower.  He threw sand in another kid’s face. He pushed a kid and took his ball.  He spent some time in the director’s office again (Dear God, it starts already?).  He refused to take a nap and threw a tantrum.  He scratched his arms up during a meltdown. He choked a girl when she took the toy he was playing with.  He threw a chair and hit another child in the face.

The best report I get is, “He had a great day….for him.”

My response to all of this?  Usually, with an embarrassed look on my face, it’s, “I’m sorry.”  Sometimes, I ask, “Is there anything I can do?”  They struggle with this and say ridiculous things like, “Well, just discourage this behavior at home,” implying I am encouraging it?  Gah!

I’ve learned to treat my pick-ups like a war zone.  I keep my head low and scan the room, looking for potential teacher land mines.  I spot Big C over by the puzzles.  I rush over, give him a quick hug, then it’s  Move!  Move!  Move!  We reach the doorway….I think we’re going to make it…and then I hear over the squall of children, “Mrs. Catharsis!  Mrs. Catharsis!  Can I speak with you for a moment?”

Damn schrapnel.

Then there are those days when I finally – finally! – get a pretty decent report on Big C’s day, and then I walk over to Little C’s toddler room only to discover he’s bitten another child.

Again.

I actually get excited when Little C gets a note home stating that another child bit him.

There’s something a little sick and twisted about that.  I know.

So that’s my guilty secret.  I love my boys dearly, but a mother can only take so much negative news before she feels utterly deflated.

Sometimes, a mother just needs to sit at her desk in the the dark and dream.

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Photo credit: t-dawg / Foter / CC BY-NC-SA

This post can also be found on the blog, Sammiches and Psych Meds.

Why NOT throwing your child a birthday party is okay

Bounce houses, rambunctious party games, sugary candy, caffeinated soda, cheap party favors, food left out on banquet tables for children to grab, spill, and lick, large pinatas inevitably leading to kids blindfolded with bats…

If these images send chills down your spine, you’re like me and, likely, you have a kid like mine who gets overwhelmed and overstimulated in a party setting.

Don’t get me wrong.  I love parties.  But now that I have a four year-old with ASD and a one year-old in tow, parties mean work, and lots of it.  I spend my time at parties running around like a maniac, trying to ensure my children don’t create too much havoc and, if they do, at least other parents will see me attempting to stop it versus sitting in a lawn chair enjoying an adult beverage (man, that sounds nice).   The relaxing for me comes at home, hours later when the kids are finally in bed, with my feet up and a glass of wine in hand.

Let’s face it though. It’s become a societal expectation to throw outlandish parties for our children.  Every year around this time, I get catalogs in the mail for kid-party theme kits running upwards of two hundred dollars for decorations alone.

Don’t tell me I’m alone in thinking it’s a little overkill.

So this year, we decided to forego conventions.  For Big C’s fourth birthday this past Friday, my husband and I decided not to throw a party.

Don’t get me wrong.  Big C still had lots to look forward to as we carefully listened to his comments about what he was expecting.  A new episode of Astroblast was in our DVR queue, a paper crown was set delicately upon a couch cushion, and we were sure to say, “Surprise!” when he walked down the stairs to his banner and balloons.  Certainly, we sang “Happy Birthday!” and he blew out four candles.

But…

I didn’t make the cake.  Big C helped me pick it out at Meijer.

I didn’t cook.  Big C got his favorite: Jet’s cheese bread with Ranch dipping sauce.

I didn’t buy party favors or play party games.  Big C spent much of his day playing in the new sandbox his Daddy made him.

I didn’t have a bunch of kids over.  His grandma, grandpa, and great-grandma were the only guests in attendance.

Big C was completely clueless he “missed out” on a big ‘ol party.  In his mind, his every birthday wish was fulfilled.  In fact, he told us repeatedly that it was a “Great day!” and “Thank you very much!”

Big C went to bed happy.

And I went to bed with a happy heart.

And a clean house.

Bonus.

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A version of this post also appears on Sammiches and Psych Meds.

 

12 Signs you’re a Working Mom

Exhaustion:
1. a state of extreme physical or mental fatigue.
2. the action or state of using something up or of being used up completely.

Yep.  That about sums it up.

After the week — hell, who am I kidding — after the year I’ve had, this list was in the making.

12 Signs You’re a Working Mom

1. You’ve taken 10 sick days this year and not a single one was for you.

2. When you actually are sick, you go to work anyway because you don’t have any sick days left.

3. When your work day is done, there is a brief nanosecond of relief, followed by the impending reality that you’re off to your “second” full-time job which has way more demanding “employees.”

4. You find ways to avoid picking up your children from daycare, just to get five more minutes of time for yourself, even though those five minutes are often spent running errands or, in my case, grading papers (Gasp!  Did she just say she’d rather grade papers than pick up her kids?  Blasphemy, I know.)

5. Take-out night is a must, minimally once a week.  This is not to be confused with pizza delivery night.

6. You find yourself, in the middle of the afternoon, pulling into the back of the Target parking lot, setting your phone alarm for ten minutes, and taking a quick snooze.

7. Your idea of “downtime” is grocery shopping at 7 pm (when you finally have the time) without the kids.

8. Your fridge is full of wine (pick your poison).

9. Your ideal Saturday night is being in bed by 8 pm watching Netflix (because the thought of staying out past midnight to hang with friends sounds like way too much effort, and the kids are still getting up by 6 am, your schedule be damned).

10. You realize you’ve gone a week without actually talking to your husband (requests, demands, complaints, and reminders don’t count).

11. You realize you’ve run out of wine and you legitimately start lamenting your pitiful existence.

12. When the kids are finally down for the night,  all you want is to not speak to anyone, so when your husband finally wants to catch up with you on the day or, God forbid, snuggle, you blast him with the lasers shooting out of your eye sockets.

*Bonus*

A sign you’re a working mom of a child with special needs:

Add in at least a couple of hours a week of therapy for your child.

sleep.

Hey, Mommy Catharsis, why only 12 signs?  Wouldn’t 15 have a better ring to it?

Sure would!  Thing is, I’m tired, and it’s late, and I’m almost out of wine.  Do a fellow mom a solid and add to the list in the comments.  I promise I’ll thank ya’ for it!

This post also appears on Sammiches and Psych Meds.

 

Autism and the Turkey Paci

Autism: “self + -ism”  (from the Greek prefix, auto = self)

1. a mental condition, present from early childhood, characterized by social-interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors (oxforddictionaries.com, autismspeaks.org)
2. a tendency to view life in terms of one’s own needs and desires. (dictionary.com)  Isn’t this everyone?

My definition: exhaustion (sprinkled with anxiety and a dash of humor)

WTF?  Did she just say turkey pacifier?

Yup.  Not being metaphorical at all.  I mean a legit chunk of meat being sucked on as a way of pacifying.

Vomit in your mouth just a little bit?  Me too.

A little back story: Big C (my three year-old recently diagnosed with ASD) has never used a pacifier.  I never had to deal with the weaning of the Binky.  Hey, I had to luck out somewhere.

However, Big C has always been a big fan of lunch meat.  Not the worse thing, right?  I mean, yeah, it’s loaded with sodium and preservatives and blah, blah, blah.  I figure it’s a hell of a lot better than pigging out on fruit snacks and Doritos all day (no judgment if your kid does that).

I never really thought much of his desire for it.  I can’t even remember the exact moment it started.  One day, I just started noticing he was eating it all throughout the day.  He started requesting  a “little piece” with breakfast, on his sandwiches for school, when he got home from school, right before dinner, right before bed…

Then one time when I had to wake him up from nap, I noticed an unpleasant meaty odor coming from his mouth.

He was sucking on turkey in his sleep!  

When you’re done gagging, continue reading.

That’s when I knew we might have a little problem on our hands.  It was time for an intervention.  An Oscar Meyer Oven Roasted Turkey Breast intervention.

Turns out sucking on lunch meat soothes Big C.  It’s a sensory thing.  The second he pops a chunk into his mouth, he goes into this zen-like zone.  He stares into space, his mouth twitching like a rabbit’s as he sucks on it.  It completely calms him down whens he’s having a manic moment.

It is so freakin’ bizarre, and so freakin’ hilarious.

Bu no harm, no foul, as far as I’m concerned.  I do recognize the dangers of choking on it and have been weaning him from it before nap and bedtime, but aside from that though, I say…

…let the boy enjoy his turkey crack.

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A version of this post also appears on Sammiches and Psych Meds.


 

~Chaos Contemplated (for now)

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Lost in a Lingo-laden Land

74.

The number of terms I’ve come across since the diagnosis of autism spectrum disorder was placed on my child.

And the list keeps growing.

Just days before we got Big C’s diagnosis of ASD, I’ll never forget what I said to a dear friend of mine with three NT kids (look at me showing off already):

“I just wish I knew some other parents with an aggressive child like mine.  No offense to you, but you just don’t get it.   I feel like I have no one to talk to.”

Oh, the irony.

And yet…

I still feel quite a bit alone.  You see, my son is tiptoeing along that line of  autism or “something else” that no one can quite put their fingers on.  Big C isn’t a simple case (who is really?).  He qualified for autism on some tests and not on others.  In fact, when his IEP was developed, the team that created it made it very clear that they bounced back and forth between the label of EDD or ASD and, in the end, went along with the medical diagnosis of ASD merely because the accommodations recommended were the same regardless.  They also emphasized a strong need to re-evaluate him in three years to see if the label would even stick.  It’s entirely possible it will be replaced with a new label or no label at all.

I’m not complaining.  This is great news!  To me, the label is really just a means to an end.  Whatever the professionals wanna call Big C, I’m okay with, as long as it gets him the services he needs.  It just makes it harder to find a community to call “home.”  My son doesn’t have severe autism, so I cannot truly relate to those families; my son is not a “typical” kid so I cannot relate to the bulk of my friends.  So where is my community?  Where does my family fit in?

What all of this labeling creates is an ever-shifting line dividing “neurotypical” and “atypical.”  Big C refuses to cross the line.  He dances, runs, jumps, and leaps along that line which I love about him.  He is uniquely himself, defying conventions, but it can be a very lonely line to walk upon because, inevitably, society tries to force us to choose a side, or else risk being an outsider.

That’s sort of how I feel right now: lost in a land of acronyms.  For now, I think I’ll continue to dance along that blurry line with my little guy.  He’s got some nice moves.

Oh, and make some flash cards.

That’s a lot of acronyms.

This post also appears on the blog, Sammiches and Psych Meds.