Tag Archives: Autism

Locked Out of Him

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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.

Key_Marian_Trinidad

Promote What You Love

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We did a little of this and that yesterday.  I ended up being able to catch up on some reading and I was seriously blessed for it.  In the interest of being more concerned with promoting what I love than shaming what I don’t, I thought I’d share some of my “loves” with you. You’re welcome.

To that end, here are just a few things that I’m loving lately:

1) April is Autism Awareness Month.  In case you didn’t already know, with a son on the Autism Spectrum, this month is near and dear to my heart.  Sweetgirl also turns 5 (FIVE!!!!) this month, so there’s that, too.

April_Is_Autism_Awareness_Month

2) I am catching up on my Relevant (online and print magazine) reading.  And I mean “catching up” as in, harking back to July issues.  Anywho,  This article, about why Christians have such a hard time being funny?  It is good!      And, then  this article will definitely help you put depression in perspective.

3) My friend, Christina, over at Five Walkers wrote a short, but powerful piece on how a specific portion of Dietrich Bonhoeffer’s story affected her own thoughts on marriage.  Yes.  Yes. To. This!

4) Ever wonder what the difference between WordPress.com and WordPress.org is?  Here’s an awesomely simple explanation by Erin Ulrich over at design by insight.

5) I’m blessed to know this lady in real life.  There are approximately 32 reasons why she’s awesome and I love her.  But, shoot! She. Is. Talented.  You can check out her website here at Kym Scott Photography.Her photographs sometimes sing to me, sometimes shout to me, and sometimes just knock my socks off. This recent one, called “Will”?  Socks.  Knocked clean off!

Will

Will

Happy April!

Serenity Now and Then

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Have you ever tried to stuff a sleeping bag back into its original shape and wind those stretchy cords around it, just so?  Does it work out that well for you?  Because it never does for me. And I can tell you one word that most certainly would not describe me at the end of that effort? Serene.

Sometimes, I feel like our life with Sweetboy, this child that has Autism, is just like that.  I know what the “shape” of a typical boy should be.  The rough and tumble, boisterous, full of gusto world that is so often spoken of by parent after parent.  And I just can’t seem to fit those blasted stretchy cords over his atypical person.

And so…

One of the ways that I’m able to get my “Let. It. Go” on is in relation to parenting our Sweetboy. There are these kinds of days:

tumultuous_waves_missindeedy

And then, there are these kinds of days:

Calm_Sea_Missindeedy

And guess what?  I don’t get to choose.  I’m 101% certain that most parents will agree, typical child or special needs child, it doesn’t matter.  There will be moments where that parenting thing? It just will not roll your way, simply because your child is an entirely separate human being from you.  And he or she is going to feel, think, and say things completely other than you would.

Much like we think differently from our Father, who art in heaven. He leaves no room for uncertainty here.  And I am so grateful.

“My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.

Isaiah 55:8

And my child, with an Autism Spectrum Disorder?  He teaches me, daily, about reliance.  On God.  And His timing.

“But I trusted in, relied on, and was confident in You, O Lord; I said, You are my God. My times are in Your hands;”

Psalm 31:14-15

I, quite simply, must rely on, and rest in, His ability to control the outcome.  Serenity is so much easier said than done, though.

Because, some days?  Some days when I stumble down the stairs to see All The Hopping, I also see that it’s going to be a day filled to the brim with this:

cardboard_drawer

And I think to myself, “Alrighty then. If that’s how we’re going to roll today, Lord, I’m gonna need some help.  And serenity. Because that wouldn’t hurt either.”

As Karen Ehman so eloquently put it in her book, Let.It.Go.,

“Instead of longing for God to change the trajectory of your life’s story line, look for his face as you practice your faith at each twist and turn along the way.”

Amen to that!  Now, bring on the cardboard. And the serenity, please. Oh, yes indeedy.

Shake a Leg

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 peacock_feathers
 
This parenting thing can be tough and tender, can’t it? Sometimes, we feel like we need the patience of Job and other times our children make us feel as pleased as punch! One of the particular joys of having this Sweetboy of ours, in our family, is the laughter that he brings with him.  The laughter comes both from him and because of him.
 
Case in point? Our Sweetboy continues to have a hard time understanding idioms. It happens far less frequently now that he’s almost double digits, but when he was preschool-aged, we’d often compare him to a second-language learner.  He was baffled by phrases like “That will be a piece of cake!” or “she’s laying it on pretty thick.” (Sweetgirl is really gifted at that one.)  Once, upon hearing that I was “dancing around the issue”, he stared at me for a good long minute before finally announcing that, “Mama is not dancing.  She’s not dancing at all!”. 
 
Oh, that Sweetboy of ours; he is so often a blessing in disguise.
 
Moments where words are unintentionally spoken, without paying attention to the little ears in the room, can also make for some very uncomfortable explanations afterwards. Try explaining why “happy hour” isn’t an hour full of only being happy. Or, upon announcing to Sweetman that “Sweetgirl’s shrieking is going to drive me to drink!”, why Sweetboy doesn’t need to bring you a cup of water. Oh, thank you child. I was hoping for a little fermented apple juice, but water will do just fine. For now…
 
We’ve worked hard to teach Sweetboy idioms because they are everywhere. His teachers and therapists have also worked hard to help him make sense of his verbal world. And it’s all paying off! How do I know?
 
Just yesterday morning, as we were rushing around to get out the door for church, I hollered gently reminded him that he needed to “shake a leg” or we were going to be late. And…
 
He did!
 
And I was proud as a peacock.
 
Do you have any proud as a peacock moments with the kids in your life?

Five Minute Friday – Grasp

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I’m linking up with Tales From A Gypsy Mama for Five Minute Friday again.  Free-writing for 5 minutes flat.  No editing. No overthinking.  Just write it!

Grasp…

Your inability to grasp the deeper meaning behind my facial expressions is sometimes beyond my ability to accept.  I beam at you with pride as you wear  your I-don’t-give-a-rip Autism colors so brightly.  I look at you, my eyebrows like giant question marks, as I try to decode the phrase you’ve just used to tell me what you want.  I swipe away angry hot tears at the unwanted attention your fierce loyalty to the “red swing ONLY!” brings.  You notice none of it.  You only grasp happy or mad.  And I am neither.

I am, however, your mama.  And I am swollen with another life inside of me.  I wonder if this one will be different?  Will she grasp what a treasure you are to our family?  Will she flare with annoyance when your Autism rears it’s sometimes-uglier head in her affairs.  Will she realize that she was born for this very family?  Another puzzle piece.  Like the very many we’ve spent the last years gathering together about you?

My prayer for you, my child with Autism, who has brought us such a beautiful range of emotions in a spectrum I never could have imagined?  My prayer is that you will grasp how very deeply you are loved.  Not just by us, the other pieces in your family puzzle, but by a God who made you exactly the way that you are.  And what are you? You, my child, are thepuzzle piece that connects us all together, here on this earth.

And I can grasp that.  Oh, indeed I do!

“And I pray that you…. may…grasp how wide and how long and how high and how deep is the love of Christ…”

Ephesians 3:17,18

STOP

Just so as ya’ know, I am NOT pregnant again.  This was actually adapted from an old journal entry from 2008.  It’s funny how rereading old thoughts can spark a new perspective.  I love how this word did that for me!

Sometimes Lobsters Are Blue

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Having a child who is different, in any way, be it the way they look or the way they act, or both, can be tough stuff.  But not always.  Sometimes, it tickles your stinkin’ funny bone in ways other folks might find just plain odd.  The thinking that our son’s brain goes through to process an idea or a concept is best described in a post that another brave mama wrote about here.  Quirky is as quirky does.  And if you’ve read around here for any length of time, you probably already well know that our kid gets his quirk on pretty regularly.  And with more than a touch of The Funny.  Seriously?  I think he was blessed with the gift of The Funny; but then again, I may be a tad biased on his behalf.

 

Sweetboy comes up with some funny one liners.  They remind me of the comedian, Steven Wright‘s, stuff.  (I still laugh hard enough to tinkle when I think of his sketch about someone breaking into his apartment, stealing everything, and replacing it with exact duplicates.)  Sweetboy doesn’t realize it yet, though, because he doesn’t get how funny his thought process can be to other people.  This is ironic, as it lends itself to a deadpan delivery that makes whatever he’s trying to rationalize out loud even funnier.

 

The Nana walked right into one of these instances when she was out for a visit.  Sweetboy got off his bus, barely greeted us, and launched into a description of the latest animal they had learned about at school; a “deer mouse”.  And then this went down:

The Nana: “That’s a mouse that wears antlers, right?” (Nana and I are snickering furiously.)

Sweetboy: (Not one iota of snickering on his  part…) “No, it’s a particular kind of mouse that lives in the forest.”

Alrighty then.

 

And then, Sweetman and I walked into this one this weekend:

Me: “Sweetboy!  Look at this!  (It was a picture in a magazine of a blue lobster.) Did you know that one in 2 million lobsters are blue?”

Sweetboy: “That must be one very sad lobster.”

 

And we howled. Oh yes indeed. Thank you, God, for this smart, sweet, funny, boy.

Got kids?  What have they said lately that’s funny?

We’ve Got High Hopes

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Oh yes, yes we do!  And those hopes started soaring around the end of July. In an effort to encourage some independent reading on the part of our reluctant reader (Sweetboy), Sweetman downloaded an adapted version of “The Swiss Family Robinson” onto the iPad.   We took a small gamble that the ultimate family adventure story would be up Sweetboy’s alley, since he doesn’t enjoy reading much of anything.  Other than maps. Oh, how he loves his maps.  He also has a little love affair with the iPad, so there was that in our corner, too. Y’all?  It. Is. Awesome.  We had forgotten how engrossing that story is!

 

Sweetboy also adores snuggling in with me or Sweetman to read at night.  For that, we are so thankful.   And on that, we decided to capitalize.  When father and son got to the part that referenced the rubber tree plant, Sweetman started singing the song. These are the moments that Sweetboy’s Autism bares itself clothed only in hilarity.  He quite simply informed him that, “Now is not the time for singing. It’s the time for reading, Daddy.”  Alrighty then.

 

When Sweetman came downstairs and relayed the story to me, I didn’t know what in the blue blazes the “Rubber Tree Plant Song” was, that he was referring to.  So, I did what any Reference Librarian worth their salt would surely suggest: I asked the YouTube.  And here’s what I heard:

 

And I instantly remembered hearing the song from somewhere in my memory.  Where or under what circumstances? Who in tarnation knows. My brain is fuzzy enough just trying to recall what I told Sweetman we’d have for dinner tonight!  But, it reminded me that next week begins a new year of school.  A new year of opportunities for growth.  A new year of possibilities! And, as Sweetboy prepares to enter the Third Grade next week, that, my Sweetfriends?  That gives me high hopes indeed!

So, what gives ya’ll high hopes?  Do tell!

Hopping Toward Thankful

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Sweetboy’s stim is hopping; and he’s done more than his fair share of it lately.  We assume it’s anxiety over the transition as we end the current school-year. And, frankly, we’re a little concerned that we’re going to wake up one morning and find that this kid has sprouted long ears and a fuzzy bunny tail.  Sir-Hops-A-Lot frequently tells us that his legs or feet hurt, but he insists that “It’s NOT because of the hopping”.  It’s a veritable conundrum wrapped in a quandary.

This is another one of those moments where I’m torn in emotion. No, that’s not right.  My emotions feel shredded like so many ribbons tonight.  Why did God give us a child who can trample all over my heart with a few errant hops?  And then again, why the hell am I so ungrateful for the pure unadulterated beauty that this child brings into our lives?  I’m sorry.  Crass. I know.  I’m feeling some pent-up angst.  I blame it on the rain.  And now, I have that stinkin’ song in my head.  It’s entirely possible that you do, too.  I’m not sorry for that.  Someone should share the agony of having a Milli Vanilli song planted in their head with me.  Misery loves company and all that jazz.

But now? Now, I’ve written some of the vitriol out and it feels better.  And instead of pretending that I didn’t feel raw enough to write about it, I’m going to leave it right here.  Right where I can find it when I need to be reminded that, “Ah, yes, I’ve felt this way before. And I lived to feel like that again.”  Or even better, so that I can be reminded the next time that there most certainly is sun after rain.  It’s usually in his hug. Or his gorgeous guffaw.  And I’ll remind myself anew that I live under an umbrella of grace that is bigger than any emotional tirade on my part.  And I will be thankful.  Oh, yes indeed.  I will be thankful.