Autism

Autism Awareness Month

Autism is quite the buzzword.

We have our own month.

Our own day.

Walks and runs and lightbulbs.

And I struggle with the gimmickiness of it all.

But I also benefit from it.

And so does My Boy.

There are a million diagnoses in our world.

We could be living with any one of those.

We could be wishing that everyone or someone or anyone knew or understood our struggles on ANY level, even the most generic.

We could be voiceless.

But because so many have gone before us, our path is already a path.

Our voices are heard.

Our struggles and our triumphs are televised and memorialized in blogs and documentaries and Tshirts and banners.

While we may choose to forge new paths or we may look to different voices to advocate for us, gratitude for those who first began awareness campaigns is paramount.

Be grateful.

That doesn’t mean you can’t make your own way.

But be grateful that when we say “he is autistic” people have heard the word.

That neighbors have YouTubed Temple Grandin.

That teachers have researched for IEPs.

That therapists have created sensory equipment and mothers have blogged curriculum and doctors have studied causes and correlations.

Be grateful that we are not invisible.

As we start this month, blowing up newsfeeds and mailboxes campaigning for our loved ones, be gracious.

Remember those who still have no advocates.

Remember that no advocacy is ever perfect.

Remember that no parent or child or teacher or therapist is ever 100% right or 100% wrong.

Remember that we are doing this, not to be superior or to demand respect or to get “more.”

If we are doing it for the right reason, we are doing it for him.

And for others like him.

We are doing it to say:

“He’s here.

He’s loved.

He’s worthy.

And we want you to know.”

That, my friends, is Autism Awareness.

That, my friends, is the point of sharing.

And I am grateful for the opportunity.

Happy April.

❤️

#SpectrumMom

P.S.

Pic of My Boy.

In a moment of pure, glorious joy.

#AutismAwareness 

 

I Am Beautiful

To the follower who told me I wasn’t beautiful. 

And who felt I should sensor my self-esteem based on their assessment of my appearance:

Dear person,

I’m sorry you are unhappy. Or hurt. Or damaged.

I truly am.

But let me tell you a few secrets…

First, know that I am not beautiful.

I know that men don’t watch me walk down the street.

I know eating Taco Bueno in the car last time I cried over my son’s struggles was not the right choice for my hips or my belly. Or my backside. Or, or, or.

I know that I spent too many years tanning and the freckles and sun spots mar otherwise imperfect, large-pored skin.

I know that my one beauty is my hair and that when I am stressed and overwhelmed just pulling it back out of the way is too much work so I chop it off.

I’m pretending I’m funky but it’s really just a sensory thing.

I know that little girls don’t look at me and wish they could look like me when they grow up.

I know.

But I also know some other things that you, from the angry, bitter safety of your keyboard or phone, do not know.

I know that the looks I was born with and the ones I might have had with better self-care, are my shell.

They are not me.

I also know that beauty is many things.

There is beauty in my breasts that fed my son for 18 months even though that means I will never wear a strapless dress again.

There is beauty in my belly that carried my son even though I will never wear a bikini again.

There is beauty in my easy smile and even in my too-loud and often grating laughter.

There is beauty in the fact that I have friends who message me in the middle of the night when their hearts are breaking because, if nothing else, I will be there for them.

There is beauty in the fact that when I walk into the lobby of my sons therapy center little girls run and jump into my arms for a safe kiss and a hug and someone to dance to Frozen songs with while they wait on their therapists.

There is beauty in the way I kiss my son at night.

And in the way I sneak back in to kiss him again while he sleeps.

There is beauty in the fact that he knows he can crawl into my bed in the morning before the sun rises and that he will be held and kissed and know security that millions of children do not know.

There is beauty in how I have taught him and am teaching and will continue to teach him that people are more than their appearances, bodies or labels.

There is beauty in me.

So much beauty that when my friends and family and my son see me, they see a beautiful woman.

And there is so much beauty in that, whether you see it or not, that when I take a picture of myself or of “us” I see a beautiful woman.

And I post it for the other beautiful women who follow our journey to see.

This isn’t vanity.

I know I’m not “beautiful”.

It is the self-confidence of someone who has learned how to BE beautiful.

So, I’m sorry you see me through a stranger’s eyes.

I’m sorry you only see that I am not a model.

I hope you stay and get to know me better.

And if you choose not to I understand that also.

Because everyone has a place they belong and their own idea of beauty.

I only hope yours broadens a little bit.

And as it does, and you see more and more beauty around you, I hope you heal.

From whatever hurts I did not inflict, but that someone somewhere obviously has.

Go.

Be beautiful.

❤️

#SpectrumMom

P.S.

Pic of me.

In my bathrobe.

Chilling out and reading emails while my son plays at my feet.

Exactly as I was when I received yours.

Isn’t it beautiful?

P.P.S.

Let’s keep comments focused on attitude and behaviors that share beauty.

I would love to hear examples of how you were a beautiful person today. 

 

Dear NT Family & Friends,

Dear Neurotypical Friends and Family,

Um. So, hey, I just wanted to let you know that… yeah.

I don’t do jealous.

I don’t know why, I just never have.

I’ve never wished I had someone else’s job or car or house or family.

I’ve wished that I had a bestseller on the New York Times… but it’s more of a naptime fantasy than actual jealousy over anyone else’s book.

I don’t want THEIR success.

I want mine.

And I want success for my Boy.

There are a million ways my mind wants to go when I start down this thought-road, so I’ll try to line up a clear, easy to follow map.

And it starts with this: I am not jealous of you.

I am not jealous of your child.

I am not jealous your child is not autistic.

I am not jealous your child is top reader in his school.

Or that she won a state solo contest.

I am not jealous your husband helps with your laundry. I’m not sure how such a thing happens exactly, but I’m not jealous.

I’m happy for you.

I just want to throw that out there.

Because lots of someones are apparently concerned, since I started talking about my Boy’s autism, that they can’t share with me. They can’t brag. They can’t talk about the wonderful, amazing, fabulous things their kids are doing.

Out of kindness and consideration for feelings I don’t have.

But maybe one day I will. Maybe, as my Boy grows and our differences are more noticeable and our struggles more intense, I will have a hard time celebrating with and for you.

But not today.

Today we are living in that soft, gray cloud that floats ambiguously between the storm of pre-diagnosis and the soft, lily white fields of “we’ve totally got this autism thing.”

We are somewhere in the middle.

Where life is manageable.

Where hope is concrete and pain is fleeting.

Where I can share ”us.”

We don’t have it all down yet, but I can see that the tunnel we’re in doesn’t end at a brick wall.

I can see that the very, very rough years we’ve been through had purpose.

And that’s why I’m sharing everything I do. I’m sitting here on Facebook every night talking through my thoughts and feelings. Sharing the hard and the easy. Sharing the laughs and the tears. Reaching out because I know we’re not alone.

I’m not jealous of what you have, I’m trying to share what I have.

I know our life looks very different from yours.

And I’m okay with that.

Because I love what we have. I don’t love that my Boy has to struggle to get through a meal or to get dressed or go to the bathroom. But I love him. I love how he loves me. I love how loving him is turning me into this insane advocate-ish, educated, aware human being.

I love this crazy, messy, stained, saturated life that we have going.

So, I said all that just to say “congratulations, I’m proud of you guys.

You guys are awesome.

Tell me all about you while we’re here.”

And I hope, really, really, really hope, you’re proud of us.

Let me tell you all about us while we’re here, too.


#SpectrumMom

Pic of Me holding my Boy. Who is wearing iLs headphones. At Occupational Therapy.

A Picture I took because after 5 months of his wearing them twice a week he’s finally decided there’s absolutely nothing wrong with putting and KEEPING them on.

Which is a huge triumph.

One of many we had today.

Celebrate with us.

RIP London McCabe

I need to talk about this. I need to talk about this murder. I need to talk about this heartbreak.

I don’t NEED to judge her. A jury will. And everyone else. But I know that I also need to, instead of judging Jillian McCabe, spend my energy reaching out to other mom’s who have lost all hope.

Please hold on. Please, please, please. One more day. Make one more phone call. Please. Reach out your hand. Please

There’s always something to be done. Someone to help. Somewhere to go. Always. Even if you can’t see it. You have to believe. Hope.

As a group I ask this; let’s not condemn her. Someone else will have that horrible job.

Instead let’s talk about how she HAD been a patient. loving and caring mom. How her husband was dying. How she was facing homelessness. How she …. snapped…

And think about it.

I know humans are capable of horrible, horrible atrocities.

I know humans are capable of great beauty.

I believe humans are capable of being, and of creating, miracles.

I believe humans need help and prayer to be the better, and not the worse, of the race. They need support. They need hope.

So.

Today I pray for myself.
I pray what I always pray: that my fears never outrun my hope. And I pray a new prayer: I pray that I do not ever know the despair or brokenness that could drive a mother to do such a thing.

I pray for all of us reading about this tragedy.
That we use our sadness to motivate us, not our hate. That we open our hearts and our minds and look around us for someone who might need us. That we think of London and that our eyes are opened and we see those who are desperate. That we stretch our hands out to them, offering them a boost. Preventing another tragedy.

I also pray for other mothers headed down her path.
That you reach out, and find, a strong hand to pull you back up onto a better path. I pray someone makes you a priority. That someone is there for you.

And little London.
Oh. My heart is broken for you. I can only pray that your end was swift. That you are at peace. And that you have an endless, glorious supply of hats in your new home.

RIP London McCabe.

London McCabe. Lover of hats.

For more on the story:

http://www.kgw.com/story/news/local/central-coast/2014/11/03/woman-reportedly-throws-boy-off-bridge-in-newport/18446035/

Fears and Hope

My greatest fear isn’t autism.

My greatest fear isn’t DD classes.

Or wandering.
Or language disorders.
Or night terrors or meltdowns.

Or the restructuring of my dreams for our future.

My greatest fear is that I am entirely capable of helping him become one of the most amazing people I’ve ever known. But that I will fail him because I didn’t know how to do better than I’m doing.

That there was a better therapy, a better supplement, a better lifestyle. A better way.

My greatest fear is that all the understanding, patience, love and brilliance that he needs is all within me, and I don’t know how to tap into it.

My greatest fear is that I’m capable of being enough. I just don’t know HOW to be.

My hope is that by filling up our days with the kind of pleasant mediocreness I pretend would exist if he were NT, I am finding our way to that brilliance he needs.

So.

We shop in our pjs.
Because he has a hard time with clothes.

We share ice cream.
Because he hasn’t figured out how to lick the backside of his cone.

I let him carry baby toys around the store.

I repeat with him, line by line, his favorite movies.

I hold him in the tub when he’s scared of the water eating him.

We yell. We giggle. We tickle.

We cry.

 
And I spend my days with him chasing hope.

And outrunning fear.

May I be ever swift.

❤ Spectrum Mom

P.S.
Pic is my Boy. In his pjs. Hunting zombies. From the trunk of Grandma’s car. Which everyone knows is the best vantage point for hunting zombies.

Eclipsed

My Boy’s language development has hit a bump.

He was making progress with his ‘wh’ questions in language therapy. Really awesome. He had finally figured out that a question is a prompt for an answer.

No, he doesn’t differentiate between who/where/when/how unless the subject or object implies a certain response. But the Back-and-forth of questions is a big deal for us. Very big. For a little boy who acknowledges his name 20% of the time to take questions as a prompt for conversation… is just… wow. I guess unless you’ve lived it you can’t quite understand.

It’s had us all in giggles.

Then suddenly last week we noticed something was wrong.

For all of last year and part of the summer he worked on prepositions. On. Under. Over. Behind. Paper prepositions came easiest. Pictures. Cutouts. Drawings. They came first and rooted the strongest.

Then we made our way up the ladder. Paper laying down may imply different prepositions than paper on the wall. “Under” moves, you see.

Then there are prepositions with objects. Putting the tiny Lego Michaelangelo behind the 3-D Lego house is a whole new perspective. Did you know it was this complex? It can be. For a child with language disorders these nuances that other children just naturally absorb… don’t always absorb.

And then there’s the belly whopper of prepositions. 4-D relational. The toy is behind him. Behind. HIM.

That was tough. Behind him wasn’t a general area. It was a mystic place in the sky. One that evaded him as soon as he turned around until he was just turning in circles. Where was this curious place we hid his toy? He would be so confused.

It was funny when he was 1. It was hilarious at 18 months. Not so much at 4. When you know it’s a problem.

But this summer before he turned 5 he started getting it. Finally. We could direct him verbally to an object he was looking for and he could find it!!! Pride in a child’s accomplishment may be a bit different for a Spectrum Mom, but it’s still pride in a child’s accomplishment. Hard. Earned.

And so we moved on to ‘wh’ questions. The bane of so many spectrum families. And he just started sailing through them.

Cue angels singing.

And that’s when we noticed. He lost the prepositions. He totally had them. He HAD them. A year and a half of work and he HAD them. And then they were gone. Not completely but so much so that I could feel myself physically shrinking under the worry. Some of his expressive prepositions are there still. The simple ones. Sometimes now he will understand receptively he is asked to perform the expressive ‘put this on’ something.  The rest? Gone.

It’s okay to feel that wonder bread knot in your throat choking you now. I know I did.

And since I’m always afraid of being that skiddish/paranoid Mom I asked Grandma if she noticed. She had. And was worried, too.

So yesterday I was hitting up the SLP’s with questions. Getting tips. Reeling in my connections. Panicking. Trying to break down possibilities. The causes. Track the next steps. Worried. Panicked. Scared. Overwhelmed. Sad. Panicked. Did I mention panic? It’s a great one when anything resembling regression or loss of skills pops up. Just. Great.

And then I had to go to school, because that’s what I do. And I’m sitting there in class trying to listen, trying to pay attention. Trying not to be distracted by anything and everything. Because it only takes one little chip off a porcelain cup before it starts crumbling. And my attention is fragile.

When it was time for the eclipse, I was grateful for the break from class and I ran outside to look. I blinked. I looked. My eyes watered. I blinked and looked again. Until I could see it. There was this tiny little bit of rock (aka the moon) blocking out a part of the sun.

And here’s where I’m about to get profound thoughts.

Where I stand there realizing that the moon can only block part of the sun because it’s closer to us. Because that big, freaking ball of fire in the sky could swallow the moon WHOLE if it was actually next to it and we wouldn’t even see it go.

And I thought about the sun. How I don’t run outside to look at it and marvel at it and stare at it until my eyes water and my head aches. Ever.

Yet there I stood. Staring at the eclipse.

Because, from my view, a huge chunk of the sun was obliterated by the moon.

And I realized that’s what we have right now. With my boy.

An eclipse.

A small, tiny thing in our lives was taking the glory that IS our lives away from me. The glory of him. The brightness of all the amazing things he has done and accomplished. The awesomeness of his determination. The strength of his will. Him. My sunshine.

Preposition loss eclipses ‘wh’ questions. Eclipse him. My son.

And my profound little mind decided that our eclipse was just a thing to look at. To notice. To address. To work on, yes. But not to be more than that. Not to panic over. Not to see instead of him.

I could either focus on it or focus on the sun.

So here’s to sunshine.

G’nite ❤

Ecliiiipse.
Not that you can tell from the pic. But I could tell.

Because I looked at it. 20 minutes before it was safe .

Because I’m a rebel.

#Eclipse.

Road Rash

Things have been going smoothly. Like really, really smoothly. We walk in to therapy. We walk out of therapy. He doesn’t bolt into the parking lot. He doesn’t bite anyone. Sometimes he even smiles at strangers. Sometimes. Ok, once.

A friend of mine offered to bring us with her to the Aquarium. What a blast. Right? Dark. Cool. Calm. Sounds like an outing we can mange, right? Right?

Oh no, no, no, no, no.

That would be incorrect. Not right.

He was so excited. He’s a four year old whirlwind and between his freckles and his giggles I forget. I forget that he just… can’t. When he whirls upwards the only way he can come back down is crashing. He doesn’t know how to just whirl back down and G-d knows I don’t know how to catch him. I try. I try as I sit on the bench and rock him. I try as I carry him as far as I can from whatever set him off. I try when I’m telling him what is next and watching to make sure he hears me.

And then I can’t anymore.

I just hit a wall. And when that little whirlwind crashes down onto the sidewalk and the screaming and crying tells me he can’t anymore I go autopilot. I pull or carry. But stuck on the goal of ”just get to the freaking car” I can’t seem to stop in that moment and help. I don’t know how to help. It’s 90 degrees and to my body that feels like 120 ( I mean really, that’s why we have air conditioning). I’m sweating. I’m seeing spots. My eyes are burning. And there he is on the sidewalk; prostrate under the 90 degree sun, back arched, tears streaming, sunglasses strapped to his head and monkey halter strapped to his back.

And he can’t and I can’t.

I can’t convince him that getting into the quiet car with lovely, cool air conditioning is better. That leaving is better. That going home is better.

He can’t hear me and process anything except that he’s done. It was too much.

He can’t.

I hate days like today. Days when I’m so excited to have some sort of human interaction that doesn’t revolve around autism that I push us both beyond our abilities.

I knew when he was on yellow.

It came fast and it came in a panic.

And I didn’t leave. I wanted to stay. So I stayed. I stayed til he hit red.

My poor little guy. I don’t want to say it isn’t fair because no one’s life is ”fair”. Living in this world comes with a ‘buyer beware’ tag that most decide to ignore as best they can, but it’s sticking out from every purchase. You can’t exchange your lot and I don’t think I’d want to anyway. I love my Boy. I love the freckles and the giggles. I love the lines of robots and searching for legos with a flashlight because that missing 1×1 Lego is SOMEWHERE.

I do not love 90 degrees on the sidewalk trying to drag a 40lb flailing ball of meltdown.

We’ve come so far. So very, very far. We have our routines and even the odd kink in the day doesn’t throw us off anymore. We just keep swimming. And our routine gets calmer and happier and we get to enjoy each other more and more every day. The past year we have seen beautiful things happen in our lives.

Life is good.

And then I go and figure that if he can handle a kink, he can handle a whole wrench thrown in, too.

But he can’t.

Not yet.

Maybe one day we can go somewhere new and I can visit with old friends and not worry about his halter or meltdowns. A visit where I can spend time oogling over her kids because I’m not on pins and needles waiting for mine to fall apart.

A visit that isn’t policed by autism.

But not yet. Not yet.

YET is the word.

Tomorrow will be a better day than today and tomorrow ”yet” will have more hope on it’s back than it does today. Tomorrow when I say “not yet” it will mean ”someday we will have this.”

But not today. Today it’s a little sad. Today ”not yet” has teeth marks on it’s arm and road rash on it’s bum from the sidewalk and a pulled back (on the right side, just below the ribs, thank you very much).

Today it thinks, “Maybe we will dig that stroller out of the garage.”

Today it realizes the stroller should have come out yesterday. Before the road rash.

Note to self; “Increased tolerance for new activities at home and increased pleasure in therapies” does NOT equal ”ready for an outing at a new place, in public, with new people.”

 

 

New Words

He spaces out.

We all know it. Me. The Grands. The Uncles. It’s just one of his ”things”.

We just wait a few seconds while his eyes grow wide and then one of us touches his cheek or says his name and waits for him to see us again.

Cuz he’s spacing out.

After all the exhaustive behaviors this has always been the least worrisome.

Until our (very nice) new Dr. Man addressed it. He was worried. His expression changed. He looked at my boy running around the office, flapping his hands and squealing. And Dr. Man said the word.

“Seizures.”

“Petit mal seizures. Zone out seizures.”

And that’s not even all of it.

All that screaming, chest arching, arm thrashing that has woken me up hour after hour at night for years? Maybe they aren’t night terrors after all. “Sleep seizures.” Who knew there were so many kinds?

“Have you had an EEG done? Do you want it set up right away?”

My boy didn’t become a different person with “autism, sensory processing disorder, impulse control disorder, AD/HD, speech disorders, neurological and musculoskeletal disorder” anymore than he did when Grandpa called him “B” instead of “Boy”. He’s the same boy he was before all those words came along; he just has more people helping him.

If only they ALL fit on that shelf! Problems, problems.

After almost five years into my adventure in mommyhood, adding one more log on the fire doesn’t really change much around here; Boy is playing Legos so I am pouring myself out to the internet. Same ‘ol, same ‘ol.

And tonight I will do what I always do at night when new words come into our lives, just as I have with the ones that have come before; I’m going to remember that new words are just new words, and we only need new words so we can address them and help my Boy get on with life.

So here’s to new words.

When Momma Fails

He was so wonderful this morning. Don’t get me wrong, he wasn’t easy. Never easy. But wonderful. He wanted his Momma. Kinda crabby and kinda clingy. His first words today were “No going nowhere today”. And that’s where I failed him. Right there. He told me he wasn’t up for it. He wasn’t ready for today. He needed a break.

So when the promise of garage sales dangled and he took the bait I thought I’d won. I thought he’d be fine once we were out and about.

I was wrong.

30 minutes into our first attempt at getting into the car, Grandpa had to come help. I had managed to get Boy IN the car , but not all the way to his car seat. Then I couldn’t get him back out of the car. Grandpa did though.

They sat and watched the brush fire, Boy on Grandpa’s lap, Grandma pacing with the water hose. Then boy decided to run TOWARD the fire. Grandpa promptly brought him back to me. Then grandma cajoled him into heavy labor. Then he got to play with the water hose. Then some jumping on the trampoline while I sprayed him with the hose (oh ecstasy). 

Then he wanted to go to the garage sale.

And I failed him.

Because we tried again. We didn’t make it. And sitting in the car I realized it was lunchtime and we still had to stop at the store.

Fail.

I don’t know if anyone in that store had ever heard screams quite like his before. They ranged from intentional/high pitched/tantrum to guttural/meltdown. They varied between the two in waves. The only bonus was that at this point he was so beyond salvation that he remained in the shopping cart. He couldn’t even fight it anymore.

Two cashiers checked me out. They scanned the card while I held his fists. One asked if he was my only. I laughed. Right there with screams on one side and horror on the other. Yeah, he’s my only. My one and only.

It took 28 minutes in the car before I could get him in his car seat. I rocked him. I kissed his tears. I apologized for not staying home. I plugged my ears when he screamed. I kissed him some more. I squished him between the seats. I wiped his tears (when he would let me).

I failed.

When he fell asleep, .5 a mile from the store, he was sobbing in his sleep.

When we got home he snuggled on my lap while he ate his hard won, organic, grass fed meatballs.

Then I snuggled him in his bed until he fell asleep. 

My heart hurt.

I had failed him. I failed him when I decided to treat him as if he were typical. I failed him when I didn’t listen to him. These past few years, working so hard every day to give him words. And I didn’t listen to them.

In the quiet of his room I looked at my beautiful little boy, napping under his glow in the dark murals. I painted those. Painted them because he asked. I had listened to him. I looked back at him as he smiled in his sleep, his breath steady and peaceful, and I realized I hadn’t failed him at all. Failure is when you’re done, when you stop trying, when you give up. Through all my wrongs in this life I have never, not once, given up on him. I didn’t fail. I made a mistake. I made a mistake but I was there with him the whole time and we came through it together. 

I didn’t fail; I learned, more clearly today than yesterday, to listen to him.

And now he’s napping. And everyone knows, nap time resets the day.

Name That Emotion

I’m not a crier. I don’t have anything against it, but in my own personal experience tears only flow when anger overflows. I never quite learned how to have that tummy-jarring, hand-shaking, strangle-an-apple anger without ending up crying. What can I say? I’m not a fighter. But otherwise? Crying? I just don’t really.

 I was thinking about Boy today. Thinking about how I don’t cry over his diagnoses. I didn’t cry about SPD, AD/HD, Dyspraxia or DBD-NOS and when the acronyms all meshed and flowed and settled on ASD like some overworked ouija board of acronym diagnoses I didn’t cry then either. That means something to me because, since I only cry when I’m angry, I’m therefore not ‘angry’ about his diagnosis. Right? What does that mean? Shouldn’t I be angry about it? Shouldn’t I hate it? Shouldn’t I be crying and shaking my fist at the evil autism fairies for striking my child? G-d knows how frustrating, tiring and helpless autism is. Being a spectrum mom ain’t a picnic.

 I’m trying to teach Boy his emotions. We still don’t have ‘sad’ or ‘happy’ down quite yet. Oh, he can name them on cards and point them out in a Disney princess, but naming his emotions we just don’t have. I got through to him one day though. Somehow the stars aligned as that venting, red little face tore through the back door and his eyes met mine ( aaaaaaaiiiiiiiii knooooooow, right) and instead of hitting, his little fists just hung by his side while he tried (apparently) to share some mental image with me via telepathy of whatever wrong had assaulted him. Like sunlight.Or leaves blowing. Leaves are a bugger.

 I pointed at his tummy and said ”That feeling you have right now, in your tummy, making you hot? That’s frustration. That’s when you tell me, “Mommy I’m frustrated” or “That makes me so frustrated.”

 Bam.

 Out. Of. The. Ballpark.

 If the kiddo is thirsty? Meltdown. Hungry? Meltdown. Sad, happy, excited, tired, etc to infinity? Meltdown. If he’s frustrated? “Mommy I’m so frustrated.” I hit that nail. On. The. Head.

 I taught him to name that emotion.

 It was only one.

BUUUUUUUUUUUUUT he has the name for his emotion. And in this kiddo’s life, frustration flows like water, so by all that’s holy I’m gonna polish that bad boy every day.

 Thinking about that, thinking about how I never cried over a diagnosis, I don’t cry at the end of a hard day, I don’t cry over him, I began to wonder. Can I name that emotion?

 It’s not anger. I know anger.

 What is it?

 I disagree with ehhhh… let’s pretend I know numbers… 50% of the other Mommy Bloggers; I say that autism is not a blessing or a gift.

 Autism is something that tortures my son, right? Keeps him from sleep and play and friends. It keeps him from learning to read and eating on his own and getting dressed. It prevents him from knowing what it feels like to run down a soccer field. Ha! Just kidding. No it doesn’t actually. He’s quite the runner, especially when I’m not looking. But it does keep him from playing soccer. Like, with other children.

 Autism sucks. I should hate it.

 So… name that emotion?

 What do I feel about it?

 I have a collection of paper growing for my little man. Every paper ever written about him is copied and organized and hole-punched and bound and waiting for the next time it’s needed. Now I want to be very clear; I am not Martha. You can’t walk across my bedroom floor without stepping on jeans, robes, blankets or socks, some of them worn, some of them tried on and promptly discarded, some of them just because they were in my line of site in the drawer. But if you need a document about Boy it’s all there. In chronological order. Color coded. In binders. What drives a person to do that? To go OCD on paperwork like that when she doesn’t even know if the renewal sticker made it to her car.

 OMIHOLYWHATDIDIDO. I don’t think the renewal sticker is on my plate. April. May. June. Oops. Um. Aww jeez.

 Ok. No. I just checked. I literally just took a break and went out and checked. APRIL 2014. This is June 2014. It came in the mail… I saw it… and that was most likely in April. But it’s not on my tag. GREAAAAAAAT.

 Ahem.

 Autism.

 So I’m a flake. But not with Boy. Not with anything about him. Speech therapy. Occupational Therapy. Physical Therapy. PCIT. Behavioral Therapy. This evaluation. That evaluation. Sedation dentistry. First step. First word. First meltdown. And on and on and on. I know it. Like driving to Taco Bueno Yum on autopilot I know it.. I know it all inside out.

 I don’t love autism. I don’t hate autism. Autism doesn’t make me angry. I think I just don’t really care about autism. I guess all ”autism” is to me is, well, the services and therapies we get because he has that label. Services I love. No. No, I don’t. I’d rather have play dates with another Mommy and sip Starbucks and get pedicures. But improvement from really great services by people who love my boy? I love that. Gratitude.

 And since I mentioned love; by all that is holy, I love Boy. And I think maybe that’s it. That’s what the other 50% of the Mommy Bloggers mean when they say they don’t want to kick autism’s butt. Maybe they mean “My child is my everything. And that label is just his paperwork. It’s not him. It’s his challenge. Like someone who is too tall or too short or too freckled.Only with meltdowns. Ha.

 At the end of the day, when my tired, sore self crawls into bed there is no anger or hate, there are no tears, there’s no venting. But there really isn’t any ‘autism’ either because ‘autism’ is the paperwork that I’ve sorted and filed already. It’s over there on the shelf where I put things I don’t think about until I need them.

  All there is here in this safe place we call home, all that is real in the quiet at the end of the night when I’m thinking instead of sleeping, is me and Boy. And if all that’s here is us, me and my Boy, then the only emotion I have here is love.

 So I named that emotion. The one in the pit of my belly that makes me a tiger Mom and a flake. Jack Nicholson-OCD-Crazy Eyes and a little bit shameless Ma Kettle.

 I’m me. But I’m ‘me’ fueled by love. A love that changes me into what he needs me to be, when and how he needs it. 

 Named. 1 job done. 10,000 left.

 So, goodnight.

 Goodnight, Autism. I realized I don’t care about you much. You’re filed with the other papers. Indifference.

 Goodnight my little boy. My Decepticon transforming in the living room. My frog catching man with a bubble beard in the tub. My snuggle boy at bedtime who smells like lavender oil and bananas. Love.

 Goodnight my love.

 Boy: I love you.
Me: I love you, too.
Boy, tell me about love.
Boy: Love is big stinky poo poo in the toilet because I eat so much food.
Me: Oh. Yeah. A big poop is always good.
Boy: Oh yes.