Bliss Gets a Bad Rap

Productivity was at an all time high around here, yesterday afternoon.

Why?

Because, Sweetgirl had a playdate directly after school.

You’ve just not heard silence so golden as the silence we experience when our resident chatterbox isn’t chattering.

Blessed.

Silence.

Sweetboy desperately needed to get his haircut before we fly down to see The Nana and Ahab this weekend. His awesomely awesome fauxhawk isn’t going to maintain itself!  We knew sissy was going to be gone a few days beforehand, so we hatched a plan to spring him from school an hour early and get the haircut taken care of.

The poor child’s nose has been running, as if in a marathon, for the last few days. Being the fabulous and fancy mama that I am, I offered to take him to Tarjay for an Icee after the haircut. I figured that would give me the excuse I needed to go back and get the two things I actually went into that dratted store for, the other day. Because, Target!

Driving to and from each errand, with no little sister to interrupt our conversation with her own thoughts on what brother should do/think/feel/say, Sweetboy opened right up.

Like a can of worms.

We discussed the upcoming Geography Bee at school, this week (He’s excited. And nervous. But mostly excited. However, he doesn’t want to “actually make it all the way to nationals in another country, because I’m not ready for that yet!” At which point, we had to have a conversation about all the levels he’d have to master before making it that far. And, of course, how “nationals” doesn’t actually entail leaving your particular nation. Fun stuff, people.)

From there, we moved to halitosis. Riveting, I tell you. I was reminded that, although he loves me dearly, I really do need to brush my teeth in the morning. I kept my comments about his own dragon breath, in the morning, to myself. He then proceeded to expound on the pros and cons of cinnamon versus mint toothpaste. (One, he informed me, tastes better in the morning, and one better at night.) He covered using his fluoride rinse in the morning versus the evening.  (Have your eyes glazed over, yet?)

He ended the stream of chatter with a solid exclamation about how he can. not. wait. to get down to Florida so that he can finally, FINALLY, wear shorts again! “Mama, you did pack only my shorts, right? Which shorts did you pack? Can we buy a new pair of shorts down there? Can I wear shorts to the airport? Do you think Nana will buy me some Florida shorts?” (Still trying to figure out what those are….)

I was dizzy from hearing the word “shorts” so many times in one hot minute of conversation. Thankfully, we arrived at home.

He almost skipped into the house, he was so content.

And, happy.

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I can’t express to you how much joy fills my heart when this child feels content. And happy. This eleven-year-old, who fights his dark thoughts so valiantly. This child, who worries about whether his hands need to be washed again, moments after washing them vigorously, every. single. time. This guy, with an intense need and desire to hop his troubles away…

When he feels happiness?

Well, the word bliss gets a bad rap, because in this instance, it aptly describes my state. And, clearly, from the joy emanating from his own face, his, too.

It would seem that a mental health afternoon was exactly what this kiddo needed.

And, you know what?

His mama did too.

Yes indeedy.

Smitten With Grace

Watching The Three Caballeros with Sweetboy  and Sweetgirl, the other day, I was reminded that families can have rituals that make no sense what-so-ever, to other families. And, they don’t need to.

Watching this Way Retro movie, that my children adore, I was given about an hour and twelve minutes to reflect on how this came to be a comforting ritual for us.

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Sweetboy’s Autism Diagnosis was something we almost felt relieved to hear. Listening to the child regurgitate entire portions of “Blues Clues” at 22 months old, was unnerving, to say the least. His preoccupation with the handy-dandy notebook being exactly right, even more so. Terrible Two’s aside, we realized that his reactions and perseverations weren’t that of your average bear.

Once we were given an idea of what we were up against, we were able to redirect our energies into seeing how Autism could work for him instead of against him, as it had for the previous year.

We always said that our Sweetboy was like a 1,000 piece puzzle. And, up until we heard the words, Pervasive Developmental Disorder Not Otherwise Specified, we felt like were being given one piece at a time.

Frustrating.

Achingly frustrating.

And then…

We felt like with the diagnosis came 500 pieces. It was a grace. It was truly a grace in every sense of the word. It was an unmerited favor – as no one owed us an explanation. It became an honor to carry this mantle with our child. And, to be brutally honest with you? We now view the wiring of our child’s brain as that of done with finesse, by a Master Creator.

There are so many gifts that Autism brings into this family. When we  see roads and maps and cultures and weather, we get to view them through such intense lens, through Sweetboy.

And that, is a grace, too.

Endowed by The Giver of all Grace.

And we are grateful. We are.

From the first time that Sweetboy’s eyes lit on Donald, Ponchito, and Pablo, he was smitten with their quirky ways. Just as we have become smitten with Sweetboy’s. Viewing that movie, through his eyes, became something our entire family could enjoy together.

And, just like that, it became a ritual. Something we could do together. An activity that we could all, every one of us, experience and enjoy.

Grace, indeed.

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This post is day 23 in the Write 31 Days challenge.

Would someone kindly remind me never to auto-schedule again? 9:45 am is O9:45. Got it Missy? Get it? Good!

 

In Knots

Sweetboy came downstairs, this morning, dressed in shorts that used to fit.

I sighed.

Do you ever sigh when your children present themselves in clothes that clearly don’t fit anymore?

My sigh, however, was because Sweetboy’s shorts were falling down. This means that he’s lost more weight.  Neither of which are good.

He has also, I should point out, shot up approximately 87 inches, and is getting dangerously close to my height.  That might have something to do with it, too.

I’m in denial there, though.

It’s a wonderfully lazy river to drift down. You should try it sometime.

Back to the shorts problem. It’s one we’ve encountered before.  It did not end well. You can read about how I used a social story to help The Child understand the importance of well-fitting shorts, here.

Clearly, that social story did it’s job pretty darn well! And I know that because, this morning, Sweetboy informed me that his shorts were “about the fall down and that’s not good, mama!”

A to the men!

We were standing in front of the wide open front door doing final preparations before a sweet friend’s mother came to pick him up for camp.  (Carpooling is a wonderful invention in these here modern times, is it not?) He proceeded to strip those shorts right on off, so I could “get the knot out, please?”

Doesn’t everyone strip down in front of a wide open front door?

No?

I’ll tell you, though, that was some knot in those shorts! I could not, for the life of me, get it out in the two minutes I had before the poor unsuspecting parent showed up.  But, I knew I could get that knot out, with the right tools and about five extra minutes.

Minutes that, unfortunately, I didn’t have at the moment.

So, we swapped out the ill-fitting shorts for ones that stayed up. I’m happy to report that he was fully dressed when the carpooling parent arrived. I scooted him out the door before anyone was the wiser.

I read, recently, how the strengths and skills God gives each of us are ones that simply cannot lay dormant for long.  They somehow work and weave their way throughout our living.

Positivity does that, for me.

What does that, for you?

My stomach had been in knots for the past couple of weeks, as I anxiously awaited this week of camp for Sweetboy.  It’s all day.  I won’t be there. Who are these parents that choose to give their week to volunteering from 8 – 5 with boys. In the woods. (It turns out, they are pretty amazing parents!)

And yet, through it all, I was able to find some silver lining, somewhere, at the conclusion of each set of worries.

Thinking positively has gotten me through some rough periods.

I know it’s not for everyone.

Being called Tigger, and Susie Sunshine, and PollyAnna, and all those names, taught me that. Tone does much telling, doesn’t it?

But, I do know that even in the knotted up moments of life, I can yank on that positivity to unravel the worry.

Because I also know that God’s got each worry I have and doesn’t take a single one lightly.

And, I especially know that the knots will come out.

Eventually.

Oh, yes indeedy!

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To Be Just Like Brother

Autism Spectrum Disorder touches each family it enters into in unexpected ways.

It touches ours with exercise equipment.

The particular and peculiar ways that a child will exhibit their self-stimulatory behaviors (stims) is as unique as a fingerprint. We’ve been through a couple of different sets of fingerprints in this house.

First, there was the swing. Next, was the mini-trampoline. Oh, how we loved that trampoline! Until little sister threw up on it.

And now, it’s a yoga ball.

Each of these pieces of exercise equipment has provided the deep joint-muscle interaction that Sweetboy’s body desperately needs. Each bounce signals to his brain that his body is getting the input it needs and that his world is orderly.

I’m no scientist. And, in fact, math is something that I have to remind myself is a necessary evil. But, when I see my Sweetboy feeling all jumbled up by a day that’s doing him in, and then I watch him bounce it all away on that ball for 10 minutes and come back ready to cope? That’s an amazing process to watch.

At the moment, that child of mine has turned our home into a literal Bounce House.

Three years worth of hopping has been replaced, mercifully, by bouncing on his yoga ball.

We couldn’t be gladder!

This past year, Specialists have been expressing concern for the potential of bone spurs on the heels and balls of his feet, with all of the hopping that he’s done these last few years.

The hopping was a form of stimming, for Sweetboy. When a child on The Spectrum stims, it’s often to help them regulate their outside world, bring order to feelings of chaos, and calm themselves down.

Sweetboy is no different. And, as you can imagine, summertime brings a special kind of unrest to this house. The lack of definitive schedule and the spur-of-the-moment ice cream runs, though they are fun, take their toll on his sense of stability.

And so, the child bounces on his ball.

A lot.

And do you know who’s watching every move?

Sweetgirl.

She observes all of his idiosyncrasies not as someone appalled, but as someone enthralled.

Enthralled by her brother’s constant movement.

Enamored of his ability to balance just so.

The bouncing has been a welcome change.

We certainly do hear less complaining of how much his “legs hurt”.

But the best part about this change?

Sweetgirl now has her own mini purple ball.

To be “just like brother”.

Dueling Yoga Balls

Dueling Yoga Balls

Yes indeedy!

Watching Them Play

Four backs all turned to me, are sitting happily on the blacktop of the driveway. They are noticeably minus one.  That one is facing me. Facing the others, too.  It struck me afresh that “one of these kids is not like the other.”

Three siblings sit next to each other, enjoying the cool of the shade. My own two children are in the mix, too, but I can’t help but notice how different Sweetboy can look from other kids, just by his choice of seating position.

It’s in these moments that I feel lonely.

Watching him play.

Realizing that he always manages to find a way to separate himself from the crowd. Albeit unintentionally.

Even a crowd of well-loved friends.

I listen to chatter about water balloons, all spent and shriveled up in their burst state – a million little shards of latex balloon peppering the driveway.  Much like the shards of my heart in this moment.

Their conversation is like popcorn kernels exploding in the air.

“I so won that round!”

“My baby water balloon never popped. Look, I’ve still got it!”

“Maybe we can fill up more after we take a snack break?”

“That was fun!”

And then, his own comment. Different.

“Do you want to swing now?”

I forget sometimes. I forget that this child, this Sweetboy, he marches to the beat of his own drum. It is not the music that other kids his age often hear.

This melody is an awesome and awful tribute to how differently my child’s mind processes activities that he participates in. Conversations that he carries on with friends often reveal more about what he’s not into than what he is. It’s a stark reminder that the music he hears has strains running through it that others cannot.

I hear it, though.

In these moments, I do.

And I see it.

And I still, nine years after that first Autism diagnosis, I still rail against what I see. And, what I hear.

Until…

My heart reminds me that he does, indeed, have friends to have conversations with.  There are activities he participates in.

Until I listen a little longer to hear, “No, we still want to play with water balloons, Sweetboy.”

Until I get to hear him answer back, “Okay. They are fun!”

And I feel okay again.

Watching them play, watching him play, the music carries on. I feel sure that he’s going to be okay.

Yes indeedy.

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Locked Out of Him

What I’ve shared here took place two months ago.  I’m sharing it, now, in honor of Autism Awareness, in the hopes that some parent who feels like they are in the pit of despair with their own child, will know that they are not alone.

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“Mommy, look at my invention! Isn’t it cool?”

It’s a hanger, with a piece of twine attached to it. He’s decided that he can use it to pick up his sleeping mask so that he doesn’t have to pick it up with his fingers.

“Isn’t that a good invention, mama?”, he asks again, looking for my approval.

I give it, readily. “Yes, Honey, it is! That’s some great inventor-type thinking right there. I like the way you are thinking of inventions!”

He is so pleased. “I’m going to get a piece of paper to write about it and that will be my invention for Invention Convention at school.”

The teacher in me responds before the mama in me has a chance to sensor my mouth. “I’m thinking that’s a really good start. Let’s see if we can add some more things to make it a bit bigger for your school project.”

He goes from 0 to 60 in the time it takes me to blink. The self-loathing, it starts pouring out like lava. “I’m a FAILURE! I’m stupid and an idiot!”

And then, a phrase we’d never yet heard, “I want to get a gun and shoot myself with it, I’m so dumb!”

I’m incredulous! I look at my husband and we have an silent conversation with our eyes. No. NO! He couldn’t have.

But he did.

All of this vitriol comes forth in the heat of the moment. I’m trying to remember that he’s frustrated. That we are all capable of saying vile things when we are feeling so dark and jaded and hurt.

But we’ve been walking this tightrope of thought patterns with him for the last few weeks. Ever since the Invention Convention paperwork came home. According to the paperwork provided, “Each 3rd grader must choose one of three projects to complete by March 6th. 1. Write a paper on a famous inventor. 2. Conduct a Rube Goldberg project with a small group. 3. Invent a never-before-invention, independently.”

My own 3rd grade teaching experience prepared me for the complexity of steps involved in this process. I knew, without a doubt, that he needed to choose the easiest option. But no. Our child, with his quirky, wonderful mind challenged to the max, already, during each mainstreamed day at school, has fixated on the most difficult option.

Only, this child? He works off of a script. We’ve only just begun the exciting and tenuous process of creating thoughts off of a script. And my mind screams, “NOOOO!!!! Not that choice! Anything but that choice!” But my mouth makes no sound.

So we go through the paper together, looking at the objects he can gather and the different examples of ways he can put them together to create an invention. It becomes agonizingly clear, after the first solitary minute, that he is completely overwhelmed. I pull back and attempt to lay this complicated project out in even more minute steps, deconstructing each one into its most simplistic form. He will have none of it.

And the self-loathing begins. The tears stream. The hurts starts pouring out. He lays out his own perceived stupidity one offense at a time. “I’m stupid! I’m just a stupid kid! I can’t do ANYthing!”

And then, to me, he says, “You just think my ideas are stupid. You hate my ideas!” Each statement, NOT a fact, sinks the knife deeper into my heart.

And then, it comes. The one phrase no parents enjoys hearing and everyone parent abhors, “I HATE YOU!” Butcher knives couldn’t leave deeper cuts. It is clear, now, that this 9 year old boy, who we’ve worked so hard to give the tools for life and communication to, he is stretched as taught as he can be. He is beyond his ability to comprehend the possibilities. I can do nothing to assuage this tension inside of him. I know that.

I try anyway. I softly begin to list the many many ways he was created that are amazing. How smart he is, how kind, how gentle, how funny, how adventurous… He wants to hear none of it. His mind has locked me out. No key on earth will allow me entry.

So I retreat. Into my own bedroom to cry. Away from him. Away from the pain that each word inflicts.

Just as on that first day, many weeks ago, we have this conversation all over again. And I try to block out what these kinds of conversations are going to mean from a mental health perspective. Can I just pretend that all kids think these thoughts of themselves and their parents. That all 9 year old boys go into rages that last an hour or more and fits that involve banging their heads against the wall or rapping their knuckles against their own heads as they rail against their perceived stupidity? Can I?

No.

But in this Saturday moment, I try desperately to work out in my mind how best to proceed. In this very moment, what do we do? Should I try to console him? Should Daddy step in and tow the hard line of unacceptable talk?

No. He wants none of it. By turns, he melts into me and expresses deep sorrow and rails against me even as one single syllable leaves my lips. “You HATE me mama!”

“No, sweetboy, I do not.”, I assure him vehemently.

“Yes, you hate what I make. You said my invention was horrible!”

“Sweetboy, did I say your invention was horrible?”, I ask him. I’m essentially begging him to help me understand when or how he heard me say those words.

“No, you said it was too small.”

I understand now. I crushed his spirit.

I’m still learning.

“I did.”, I say. “And I’m so sorry. It was your invention. We love that you were thinking like an inventor.”

And at that, somehow, the rage is reignited within him. He stiffens and begins railing all over again. The entire process, we go through it again. Less than minutes after it began to finally subside.

Twenty minutes seem like an entire month. I am inconsolable inside. He is inconsolable outside. Sweetman takes over. He tries to intervene. Sweetboy has decided that I am the enemy.

“You HATE what I make! You ruined the whole thing, MAMA!” he spits out at me.

Daddy takes this boy, that seems to me to have just been born yesterday, upstairs. “Yeah, I really am a bad kid! I’m the worst kid ever. How can I make inventions? By my stupidness?”

At this, I must run into the bathroom as I choke back sobs.

“I’m the worst kid! That’s what my self thinks.”, more slapping of his palm against the side of his head. They are upstairs now. I hear too much.

Some minutes pass.  They walk back downstairs.

He immediately comes over to me.  “Maybe I should go away. My self is horrible. No really, my self is horrible. I’m the worst! Maybe you should just kill me or something.”

“We love you. We think you are amazing. You have such a good heart. We are so very sorry you’re feeling this way, but please know that we think we are the luckiest parents in the world to have you in our family.”, Daddy tells him. And many more loving, positive words of affirmation.

He refuses to accept a word of it. He threatens to chop my coffee cup in half. We remind him that breaking things isn’t going to make him feel better. His eyes light on his earphones. He takes them and, before we can react, pitches them angrily across the room. They break. Of course, they break. He is now sliding back down into the pit of despair.

“See what I did? I’m just a stupid, stupid kid.”

And I begin to tear up. Again. This cycle – it slices through all of our hearts. No one is immune.

Little sister asks him if he’s okay. He screams at her, “Be quiet, sis! It’s NOT your business! Just leave me alone.”

Now, she too, is crying.

This vicious cycle takes well over one hour to struggle toward closure. I know this to be true because we were locked out of Sweetgirl’s iPad this morning. We weren’t able to try the code again for “60 minutes” far more than an hour ago, according to the clock.

I’ve retreated to the kitchen this time. I press the little round home button, focusing intently on something, anything, other than the agony going on around me right now. It says the code is incorrect. We are locked out for another 60 minutes. Just like with him. Locked out. Unable to enter the right code to open him up.

I begin pleading, “Please Lord, calm these hearts. Especially his. Oh, Lord, let his little heart feel full of the love we have for him and not the hate he is developing for himself.”

He begins to calm. A bit. And all at once he starts crying and asks, “Am I evil? I was so evil to myself!”

We rush to assure him that he is not evil. That we all feel mad at ourselves sometimes. I wrap him in a hug so tight that I fear suffocating him. But I want to shield him. From himself, yes, but from the fiery darts he’s trying so hard to stab himself with. I just want, so desperately, for him to feel the love I have for him. We all have for him. “Please, let my love overtake his dark, Lord!”, I silently, fervently, pray now.

No words. Not now. Now isn’t the time for words. I mouth to daddy with no small emotion, “NO WORDS!!!”.

His body, still so much like a child’s, though so tall for nine years old, starts to relax. I kiss the top of his head and murmur over and over and over, “I love you. I love you so much.”

He continues to soften. I can feel it. I can’t let him go.

He breaks away and looks up with tear-stained eyes and asks for some lunch. We all begin to pad around the kitchen together, circling the island as if stopping for too long will break the peace that has finally, finally began its descent. We ask him softly, “White bread or wheat, American cheese or Muenster?”, as if these small decisions will hasten the peace that is finally breaking through the turmoil we’ve all been in.

All is calm now. We’re sitting at the table with our lunches before us, pretending nothing major just happened. It’s just another Saturday.

We’re all feeling fragile. We eat, not really focusing on any food going in, or taste going down.

I frantically begin trying to remember, while they are still fresh, all of his words, so that I can recall them when the therapist asks. Each phrase I remember is another slice with the knife. I bleed for him. I pray, sometimes, that he will know the extent to which his father and I bleed for him. And then, I almost instantly regret that prayer. And instead, I pray that he never has to know.

I get up now, to go check on the progress of the iPad. We’re still locked out.

Please God, Let it not be true with him.

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