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.


Advertisements

The Anniversary of a Diagnosis

A year ago, I received

a diagnosis,

a slap in the face,

a validation.

No mother wants to admit she feels a slight twinge of relief at hearing something is “wrong” with her child.

But I did.  A small, small part of me thought, So it’s not me.  I’m not a horrible mother.  I have a difficult child.  It isn’t this hard for every mother.

Feelings are feelings.  What can I say?

Of course, those thoughts were immediately bulldozed by feelings of deep sadness, fear, and shame. Sadness for my three-year old son who had to deal with these struggles, fear these struggles would overwhelm and consume him, and deep shame that I felt that earlier twinge of validation.

What’s also surprising about receiving a diagnosis is that, on the surface, nothing changes.  After our initial meeting with the doctor, we went about our day.  There wasn’t an immediate transformation or quick fix.  In fact, pinpointing a diagnosis our insurance company could accept took months.  Any change my son actually felt (in the way of therapies, special needs preschool, and the implementation of an IEP) was months down the line.

But for me, the change was immediate.

In an instant, I was told there was a name for my frustrations, for my son’s frustrations.

Autism.

I didn’t truly understand what the word meant beyond the stereotypes, but I knew in that moment, this word and I would come to know each other on a visceral level.

And we have.

Autism is feisty.  It refuses to pin itself down to just one definition.  Some days, I question whether autism really belongs in the list of terms to define my son. Then it slaps me in the face, boldly reminding me it is a term that defies boundaries.  I don’t know I’ll ever be able to provide it a proper definition.

While autism may be an intriguing word, I’ve also learned it’s just one of many words to describe my oldest son. It has some fierce competition with intelligence, strength, and passion. 

A year ago, I received

word,

an insight,

an understanding.

FullSizeRender (1)

 

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.

7533314916_68abef5f56_o
Photo credit: t-dawg / Foter / CC BY-NC-SA

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

“Body Calm, Mommy!”

Photo Cred: visualcues.wikispaces

This picture look familiar to anyone?  It was brand-new to me until last spring when my now four year-old son (Big C) received the diagnosis of ASD and the floodgates opened.  Suddenly, I was inundated with cue cards and visuals designed to help us as parents “manage” our son.

I’m learning very quickly that parents have very mixed emotions about this kind of stuff.  I’ve read blogs where parents are outraged by concepts like “quiet hands” and see techniques such as ABA therapy akin to torture and brainwashing (I’ll admit I’ve had my share of bad experiences).

I’m becoming a quick study and am discovering very quickly that I learn best simply by following the cues of my own kid (crazy concept, huh?)  ABA wasn’t for us, but man, does he dig the visuals!  My husband and I tried a visual schedule this summer, and it was like a magical talisman.  Does it work 100% of the time?  Of course not, but it sure does help.  Just making him aware of what’s coming next alleviates so much stress for him (and his Mommy too!)

An extension of the visual schedule are the use of visual cue cards.  His teachers at preschool and daycare use them often, especially during circle time, when he struggles to sit still and focus.

Imagine. A four-year old boy who doesn’t want to sit still.

All joking aside, while I’m pleased the visual cards are helping him focus, I’m way more concerned with managing his aggression.  He’s an emotional little guy, and if he’s mad (and tired) enough, he will hit, throw, kick, scream – even bite on the rare occasion.

This is where the “Body Calm” technique has proven effective.  Again, for my son.

When he starts to escalate, he’s learning to self-regulate, doing as the picture illustrates and wrapping his arms around his chest and taking deep breaths.  Does he usually need prompting?  Sure.  Does it always work?  Heck no.

But I know he’s getting it. Case in point:

Just a few weeks ago, I was all in a huff because my husband (who usually does morning drop-off with the boys) had to go into work early.  I was stressing trying to pack lunches, book bags, and get my two boys out the door before my own job start time of 7:15 am.

Big C, sensing my distress (he’s highly attune to emotions) very loudly proclaimed to me, “Mommy, you need to get your body calm!”

It totally worked.  I busted out laughing, said, “You’re right,” and we did it together.

I’m happy to report I had a calm rest of the day thanks to my little life coach.

How have your children coached you through life?

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!

The Sensory Spectrum

A version of this post also appears on The Jenny Evolution.

 

Is this autism or NT kid-stuff?

NT: an abbreviation for neuro-typical, a term often used in the autism community to reference those who are not on the spectrum.

Ever since my four year-old’s diagnosis of ASD over eight months ago, I find myself constantly wondering, “Is this behavior the effects of autism or just a kid being a kid?”

Self-doubt and motherly instinct are in a constant battle of wits these days.

I don’t just ask myself this question.  I ask my husband, my friends, my parents, my son’s army of teachers and therapists.  Naturally, I get a different response, depending on the person (and the scenario I’m describing).  Let’s see what you think:

Big C is head-butting a group of girls at school.    Autism or NT?

Big C suddenly asks, “What’d you say?” to virtually EVERY demand I place.   Autism or NT?

Big C told his Occupational Therapist very matter-of-factly, “I’m going to kill you.”  Autism or NT?

Big C has a sudden preoccupation with dying and is starting to say, “I’m dead,” though I am very certain he has no idea what this actually means.  Autism or NT?

Big C is having a destructive streak, ripping wall decals, blinds, and picture frames off the walls.  When asked, “why?” (which I’m told is really too advanced of a question for a four year-old in this type of situation) he merely replies, “I don’t like it.”  Autism or NT?

Big C is becoming defiant again, telling me, “No!” and back-talking me constantly.  Autism or NT?

Big C is obsessed with winning.  He has to be the first one up the stairs, the first to open the door, the first at every game.  When he’s not, he has an over-the-top screaming, crying, temper tantrum.  Autism or NT?

Big C is incapable of walking through the grocery store without running his hand along every item on the shelves.  Autism or NT?

While Big C’s 19-month old brother is eager to play catch with him, Big C would rather take the ball and run away, keeping it for himself.  Autism or NT?

While in the urgent care waiting room, our 19-month old son is content to sit and play cars, while Big C is literally trying to climb the walls, settling for my husband’s back, ripping the leaves off the fake plants, and taking the toy cars from his younger brother (now both are wailing), all while the older couple sitting in the waiting room gives us death glares.  Autism or NT?

Essentially, it’s all very muddled and confusing and full of blurred lines, begging the potentially more important question, “Does it matter?”

Certainly, getting at the root of a behavior can help, but in many situations, there’s no “fix” or “quick” solution.  My son is my son, autism label or not.  He’s always going to leave me in wondrous awe (and perpetual frustration).

Any other moms out there wish they had supernatural intuition?

questions-1922476_1920

“Wanna smell my feet?”

This question is asked daily of me by my four year-old son diagnosed with autism.  Call it hypersensitive.  Call it hyper-curious.  Call it what you will.  He is obsessed with his sense of smell.

His favorite question is not “why?” but rather, “Can I smell?”

He’s no smelling snob.  He wants to smell it all: hair, soap, water, lollipops, flowers, paper, laundry, dirt, chalk, grass, crayons, hands, his little brother’s diaper-clad butt, our cats, his car seat, all meals, his mother’s glass of vino (wine connoisseur may very likely be in his future.  The boy’s got the sniffing part down).

If there’s a scent, he’ll find it.

When he walks into a room, it’s not uncommon to see him, sniffer in the air, commenting that he “smells something.”  This is rarely said with a look of disgust, but rather a look of extreme curiosity, as if he’s trying to decipher a great mystery.  He has yet to properly label a smell; instead, when asked what something smells like, he will usually respond simply with, “it smells!”

The specific obsession with smelling feet is partly to blame on my husband.  Nearly a year ago, he was wrestling with Big C, pinned him, pretended to smell his feet, and then pretended they were super stinky.  Well, Big C thought this was hilarious, and it soon became an ongoing ritual.  This inevitably led to him wanting others to smell his feet, a request he makes upon various members of our family frequently.  Conversely, he enjoys smelling other’s feet and has no qualms about asking to do so.

We’ve had “the talk.”  You know.  The one where you have to explain when it is and is not appropriate to smell other’s feet: “the exchanging of foot smelling should be done in the privacy of one’s home, not in the school or workplace.”

What?  That’s not a “rite of passage” conversation all parents have with their children?

At any rate, this whole “feet thing” is kinda cute and all ‘cuz he’s four.

But when he’s fourteen, it may be a different story.

Because let’s be real; feet are kinda gross.

What is your strongest sense?  


Cín / Foter / CC BY-NC

 

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!

The Sensory Spectrum

 

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.

balloon-1051718_1920

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

 

“Oh, he’s just stimming.”

Stimming: Everybody’s doin’ it.

Even you.

I have a confession.  I stim.  Every night.  It calms me.

Before I go to bed, I count off on my fingers how many hours of sleep I will get.  Sometimes, I have to count half a dozen times just to get that sense of peace.

Sound odd?  Maybe a little.  I remember doing this as early as third grade.  I have no idea why I have to do it, just that I have to.

I don’t just stim before bed.  During the day, I find myself chewing on pencil caps, pulling apart paper clips, tapping my foot, organizing items on my desk into straight, perfect lines, all with little to no awareness I’m doing it.

You’ve probably figured out by now what “stimming” is if you didn’t already know.  Short for “self-stimulation,” it’s a type of repetitive movement we do, often to ease tension or anxiety.  Often, it’s subconsciously done.  I’ve discovered the term to be co-existent with neurological disorders such as autism, though it’s certainly not exclusive.  I’ve never been diagnosed with autism, but I certainly can appreciate, and practice, some of its attributes.

For my soon-to-be four year-old son who has high-functioning autism, his stimming is often a survival tactic.  If he can’t do it, he “explodes,” if you will.  I’ve watched him “stim” for years without realizing it had a name and a function.  With his recent diagnosis of ASD, I have been thrown into a world of jargon and acronyms, stimming among them.  Thankfully, with this new vocabulary, I am becoming better equipped to understand and help him.

I’ll never forget a recent visit to the park with my husband, our two young boys, sister-in-law, her husband, and their two young children.  We were on a nature trail with a long, winding wooden fence.  Naturally, Big C (my son with ASD) ran his hand along the railing.  While I knew the possibility of splinters was imminent, I also knew there was no chance of stopping him.  Big C needed to touch that railing.  He needed to run his hand along its splintery edge to better understand his surroundings.  As a sensory-seeking child, he needs to touch his surroundings, to smell them, even lick them (often to his mother’s chagrin) all in order to understand them.

My sister-in-law, a bit perplexed by my son’s behavior, asked why Big C was slowly running his hand along the railing, head down, humming to himself.

My husband merely replied,  “Oh, he’s just stimming.”

The twinkle of pride in my husband’s eye – true understanding and trust between father and son – was simply magical.

While it may have a stigma to it, stimming really isn’t so bad.  In fact, it can be quite therapeutic.

How do you “stim”?

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

SensoryBlogHop

“I do not like that hat. Good-bye!”

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

Autism is….complicated.

I’ve been learning a lot of new words since the advent of my son’s diagnosis of ASD.  One of them is scripting.  As a teacher of the arts, I immediately liked the sound of this new vocab term.  It sounds so theatrical!  Essentially, it’s often linked with the term echolalia, both of which refer to when someone repeats something (like an echo: makes sense).  The term scripting is more often used to reference the recitation of lines from movies and books, but it can be the repetition of any chunk of dialogue in the person’s memory.  A lot of us recite or ‘script’ favorite lines and quotes (my husband throws out obscure 90’s R and B lyrics with reckless abandon); the key difference is why people with autism script.   There’s no exact science (which is why autism is so complicated), but scripting can indicate feelings of extreme stress, excitement, or function as a cryptic means of communication.

Which brings us to our anecdote.

Two days ago, Big C (my three year-old with ASD) and I were having fun with Play-doh.  I was also using our “play time” as a teaching moment.  We were working on colors, turn-taking, and verbalizing what we were thinking (I say we, but it was mostly me).  At one point, he tired of sharing and asked me to work with my own Play-doh so he could do his own thing.

Fair enough.

Once I had made a little sculpture by myself, I asked Big C if he liked it.  He looked over and said, “I do not like that hat.  Good-bye!”

Fascinating.

To the innocent bystander, it would appear Big C completely misunderstood me.  But he didn’t.  He was scripting from a book by P.D. Eastman called Go, Dog, Go! that I read to him roughly six months ago.  In the book, a female dog repeatedly asks a male dog if he “likes her hat” and the male dog says, “I do not like that hat.  Good-bye!”

Big C totally understood me.  He just had an unusual way of showing it.

This moment was so important for me and Big C.  It was a solid reminder of why my son is hard for others to understand.  Yes, he does struggle with articulation, but more often, it’s not how he says things, but what he says.  He appears to be speaking out of context, but instead, he is making amazing connections between what he is ‘reading’ with what he is experiencing. He’s taking the reading concept of “talking to the text” to a whole new level.  When the time comes for Big C to write literary analyses and cite examples from the text, he is going to be a pro!

BUT, I recognize more clearly now why this is a social impairment for him.  Much as I’d like to, I cannot follow Big C around and translate for him, citing to others how clever he is with his literary quips.

What I CAN do though is teach him how to explain to others his seemingly obscure connections.

In response to my question, what if he said this instead: “Mom, I know what I should say.  Society says I should tell a white lie, that I like your sculpture.  Instead, I’d like to provide you with a literary anecdote from an antiquated children’s book you read to me that highlights the masochistic society of the 1950’s with the use of male and female dogs.  You see, the female dog keeps looking for the male dog’s approval by seeking a compliment about her hat.  He denies her several times as she continues to change her appearances for his benefit.  At the text’s end, he decides her hat is worthy and they ride off into the sunset.  While I don’t care for the gender biases of the text, I appreciate the display of brutal honesty.  That’s why I need to be brutally honest with you now.  I know you want me to say I like your sculpture, but I don’t.  Maybe you should try again.”

Of course, he could simply say, “Your question reminds me of a book we read once.”

That would certainly suffice.

Call it scripting.  Call it echolalia.  I call it pretty damn clever!

Beginner-brightearlybookx
By Jengod (talk) (Uploads) – Own work, CC BY-SA 3.0, https://en.wikipedia.org/w/index.php?curid=39605122