12.5 Seconds

Breakfast was good.

We've weaned off of YouTube (YouTube; simultaneously the salvation and bane of ASD Mom existence) so now during meals he wiggles, wriggles, skips, hops and basically does everything except sit down to eat, but the food gets in him and I can see his eyeballs so it's progress.

I was watching his little YouTube-free eyeballs.

And I saw it.

After a weekend that was mostly filled with denial, punctuated with a couple dozen (okay, a hundred) YouTube videos I had convinced myself that he does not, in fact, have seizures. Petit mal/absence or otherwise.

But I saw it.

Staring at his plate. "Hey Buddy. Can you hear me?"

"Yeaaaahhh...."

Then nothing.

Nothing. 

Nobody home.

"Hey, Boy. Can you hear me?"

Nothing.

"Gee gee goo goo."

Nothing

1, 1 thousand.

2, 1 thousand.

...

...

...

12 1 thou....

Blink.

Hey Buddy.

Blink.

Shakes head.

Blink.

"You okay?"

Blink.

"Momma, you give me too much sugar

And sugar is a headache."

"I just gave you a banana, sweetie."

Wiggle. Wriggle. Skip and hop off the bench.

That did it.

One super-routine EEG coming right up.

"Bring an iPad or something with movies or games to keep him busy."

I can do that. Exceptions to the YouTube ban can be managed if the excuse is good enough and being strapped to a cot with electrodes sticking out of your little AutoBot head is certainly up there with "a good excuse" in my book.

Momma needs some chocolate.

YouTube eyes.

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.

What do you do?

I got asked.

 I knew it was coming because I was second in line. I had a full two minutes to think about it.

"I'm retired."

It was all that I could come up with. 

Until I heard "I wish I was retired, too." That lit my fire. 

Nothing makes you realize the absurdity of your own statement like a good reflection.

Plan B.

"I'm retired from ____. I'm a full time student. I'm a stay at home Mom to a four year old boy who is severely autistic."

It still wasn't enough though. 

"What do I do?"

Nothing really. 

I don't "go to work."

Don't go shopping.

Or out to restaurants.

Vacations.

Coffee dates.

Pedicures.

What do I do?

I wake up a half a dozen times a night to make sure my son doesn't get hurt during night terrors.

I chase him when he bolts, often grabbing him by the collar right before he runs into parking lots or streets. Because he won't wear a leash and he's too big for me to carry him around like an infant.

I hold him like a yogi-Jedi master-pro wrestler when he's having a meltdown. I strain back and stomach muscles doing it.

I make certain he doesn't eat cat poop and cat food. 

I decide which counters he can lick and which ones are off limits. 

I take him to occupational therapy. And physical therapy. And speech therapy. And behavioral therapy.

I hide toys in bins of rice.

I plan his sensory diet.

I practice PRIDE skills.

I laminate PECS.

I help him line up his toys so he is perfectly, ecstatically happy.

I write his name on bathroom walls with shaving cream and teach him to trace it with his finger. And I make him wait 30 seconds before he can rinse it off.

I wipe his bottom.

I turn his straw a perfect 90 degrees.

I read stories to him. 

I talk to him about the seeds in his watermelons and how they grow new watermelons. 

I tell him about G-d and I hug him and kiss him and tickle him.

I schedule play dates with children even knowing there will be fighting and screaming and meltdowns. 

I rub essential oils on him that I can't afford and I give him deep tissue massages even though it's my back, neck and muscles that ache.

I fail daily at teaching him how to comprehend danger or sing the alphabet or recognize sight words. I try everyday anyway.

I fail daily at teaching him how to ask for help or answer a question. I try everyday anyway.

I try. I fail. I research. I try again. And again. And again.

I read about and research everything he struggles with; SPD, expressive language disorder, receptive language disorder, lack of post rotary nystagmus, artic and phonological disorders. At night. In my quiet room. Waiting for the next time he needs me.

I live in an 18 hour per day time loop that is full of frustration and exhaustion and miracles.

I am determined that we will not survive this life.

We will conquer it.

I show him how to live in this world and I watch over him and guard him and teach him 24 hours a day. Not because I am super human or paranoid or have nothing better to do. Not because I need to be needed. Not because this is the way I thought it would happen. Or because this is the way I planned my life.

I do it because I'm a Spectrum Mom.

And that's what we do.

RAWR.

PT re-evaluation

PT re-evaluation today.

Every six months doesn't sound too bad, but that 6 months comes and goes so fast! It's hard to believe it's been 6 months since we started getting services through insurance.

He will be 5 at his next PT eval. 5. It's been the slowest, most difficult 5 years of my life. 

And yet it must have gone quickly. 

Because I'm wondering where the time went.

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.

Waterboarding

His eye itched. 

I know this because he was rubbing his eye. Repeatedly. 

So grandma and I, full of the vile hate natural to maternal figures, conspired to torture him. The concencus was swift and decisive; death by eye flushing. 

Determined to lure my captive to a tiny room where I could force my will on him, I teased him with fond memories such as "you just spent 30 minutes playing in the tub. You love water so much!" And "Mommy is going to take care of your itchy eye. Momma's job is to take care of you."

With my prey finally trapped between the sink and the door, I bent over him and.....

Flushed his frickin' eye with water. 

Repeatedly. 

We both have battle wounds from my cruel act. 

And the screaming. Omg the screaming. 

If DHS isn't knocking at our door tomorrow then, well, either I have deaf neighbors or waterboarding is legal.

(Insert evil laughter)

(Sobs)

Cyber Raping the Mommy Blogger

I had dreams of starting a blog. My FB posts go over well so I thought, "Self, time to branch out." Then Self started reading other posts about autism, being the mother of an autistic or special needs child etc etc. It's not the articles that hurt; most of those articles I understand. It's the comments. Since when does ''freedom of speech'' include terrorizing, insulting and verbally abusing people? Since when is it acceptable and common to tear people down? Do I dare reach out to the ''back in the day'' crowd and cry over the death of social etiquette? Who are these people that, behind the safety of smartphone, tablet or computer, can cyber rape other human beings for entertainment?

I have a son I love more than anything in the world. I would be lost without him. Loving him, loving him through his difficulties, loving him in spite of his challenges... all of this LOVE I have drives me. It drives me to be kinder than I thought I could be. It drives me to listen to others. It drives me to improve. To be a better mom. A better woman. A better human being. It's been quite the journey.

Here I am on this journey, starting for the first time to reach out to others, to share what I've learned by being Mom to a wonderful, amazing, challenging, frustrating, miraculous little boy. And immediately I discover that while I am trying to reach the next level of ''better than yesterday'' these 'cyberbullies' or 'trolls' are out there, tearing us down.

Maybe it's always been like this. I know horrid atrocities have occurred ever since humans began leaving their mark on this planet. Humans have the ability to act and live as animals. But humans have the ability to live like angels; to fight wrong, to help the hurting, to serve the sick, to hug an enemy and to make life and memory something golden and beautiful. I can see it in these other ''mommy blogs''. Women trying to bring sunshine and warm hugs to others. To everyone within shouting distance they scream from their Blogger page, ''this is how I made life better today''.... and then someone finds that post, scrolls down, and with bravado, cyber rapes them. Tells them they should die, be murdered, tied down and tortured, children taken from them etc etc etc. They are emotionally raping these Mommy Bloggers because it's safe and legal for them to do so. That's pretty scary stuff.

Something in me thinks that for every 10 that hate, one will need what I have to say. I took a break while I thought about it. I don't want to be cyber raped, hated or verbally attacked because I have things I want to share and writing them is how I share best. So I'm going to write anyway.

I decided what I already knew; paper beats rock.

So let's roll.