I'm sorry.

I'm sorry, baby.

I'm sorry that I couldn't give you the attention you desperately needed this morning.

I know you need more of your Momma than some 5 year olds do. I know you struggle when my attentions are divided. I know that isn't your fault or something I should resent. I know it's something I need to remember when I'm planning our days. But I messed up.

Momma's been messing up for a long, long time but I promise you, Momma is learning.

See, when all the smart teenagers and twenty-something's were going to college, graduating, getting homes and growing up, I was doing my own thing.

I was messing up.

I withdrew from classes if I didn't like the teacher. Or if I liked them too much. (Oh dear Spanish teacher. You cutie, you.)

I worked and worked and worked but more for the social interaction than to earn and save money. My focus was on talking and chatting and shopping and pretending to be a grown up, rather than actually growing up.

I was messing up. I wasn't learning anything.

When I finally found a job I was good at I spent my time lording that success over others in an I'm-the-queen-of-the-universe kind of way instead of keeping my nose to the proverbial grindstone and focussing on getting and being better.

I wasn't growing up, I was messing up. I wasn't learning anything.

When you came along, brilliantly and surprisingly turning my world upside down, I wasn't ready.

I've spent the last five years with you playing a viscous game of catch-up. Trying to make up for all the things I hadn't figured out about life before you came. About who I was. About who I wanted to be.

I started learning.

I went back to school. I learned to stay with the class even if I was up working on assignments at 3am. If you woke I nursed you while I typed. I learned to stick with it.

Then I learned to research developmental milestones.

And I learned what it meant if they weren't met.

Then I learned all about language disorders and fine motor skills and sensory processing and Thomas the Train.

Oh dear Lord did I ever learn about Thomas.

And then I learned about autism.

And I learned about you.

I still messed up but my messes were cushioned by you. By your curiosity and your hugs and your dimple. By your needs and your successes.

I'm still messing up though.

Sometimes I procrastinate. Sometimes I think about myself more than you.

Sometimes instead of stopping to think about what it is I have learned and what I should be learning, I mess up.

That's what this morning was all about.

You needed my attention. You asked for my attention. You begged for my attention. And then you GOT my attention.

I messed up. I didn't put you as a priority when I was busy procrastinating.

When my other responsibilities reared their ugly head this morning, your still-messing-up-Mommy had to fix it.

And I learned from it.

I learned that every time I mess up it isn't just about my fixing it. It's about me and you and us and our time together that I'm compromising. That my reliance on the adrenaline of procrastination and impending deadlines HURTS you.

I messed up. And I learned from it.

But I'm going to mess up again.

I'm going to forget something important or say or do the wrong thing or make a mistake. But I promise you that I'm going to keep learning from it.

I'm going to keep learning how to be a better mom.

A better woman.

A better human being.

Because of you.

<3

P.S. Pic of my boy hunting zombies yesterday in the sunshine.

When he had my full, undivided attention.

P.P.S. Written while I was at the Drs office. NOT ignoring my Boy

Melted

UPDATE: Please note that we do NOT EVER use restraints. Nor do we leave my child in a ''safe, padded area to work it out himself." The photos and methods used are the least aggressive possible and have been approved by a team of specialists. He is only ever held by a therapist or parent and only in a manner that prevents self-harm and no other restraining methods are used, nor is he EVER left alone. The goal of this method is to reduce self-injury and encourage self-regulation improvement while neither isolating nor punishing.

I saw a video of an autistic child that was titled ''Meltdown.'' Said child was sitting on the floor, leaning against a couch and crying. Wiping his own tears.

I don't want to belittle what that child was feeling. I don’t know how else the chid behaved or what the trigger was. I don't want to be ''that'' Mom who thinks she knows all.

But I do wanna talk about it.

I watched the video in its entirety. From crying through to re-direction ...the child cried. Sniffed. Wiped his own tears. Looked around. Cried some more. Then was bribed away from the meltdown to a new activity.

Now, we’ve had these moments because … well… yeah... but we don’t even discuss them as a rule. And if you think this is what < I > mean by ''meltdown'' then we are on different pages, you and I. I would never post a video of my boy in full on meltdown. I wouldn't do it. There are a plethera of reasons not the least of which is that people would begin crossing themselves when we walk by. I’m sure there’s education to be had this way, education about autism and meltdowns and learning what is or is not part of life with an autistic child, but my self-serving online venting is not the place, nor do I want to share a visual of my boy that way. It’s too hard.

I do want to shed some light on this though because after my last post about My Boy's meltdown at the grocery store a friend asked me how I know he isn't just being naughty. How I know it’s the autism. What's the difference?

I'm going to start with this: He CAN be naughty. He can be bratty, selfish, obnoxious, defiant. And there ARE times when it appears to be simply the result of his being a 5 –year-old only child who is also a wee bit spoiled. Yeah. Spoiled. K? K.

And there are times when it seems that he is simply obstinate. Strong-willed. Defiant. Opinionated. Because he undoubtedly is: he’s mine. K? K.

He can also be sweet, funny, silly, playful and obedient. The result of his being a 5-year-old only child who is loved and cared for. K? K.

And then there is the fact that he has autism.

And well, the kicker is that we can't always separate the 'autism' from the 'typical' in him because, for lack of a better analogy, it’s not psoriasis. You can’t say ‘’this patch is psoriasis/this patch is typical skin.”  They aren’t distinct and separate quite that way. And no matter what his diagnoses (and there are tons), he's a 5-year-old boy. So outside of language issues and comprehension issues and social issues and, and, and... he's five. And he's a boy. And he's unique. He’s an individual. He’s a person. And there are a myriad of thoughts and ideas and reasons in him just as there are in any other person. 

He’s not one thing; he is many.

And separating a diagnosis from his personality is often close to impossible because it's like asking me to separate all the books I've ever read and experiences I’ve ever had from my thoughts as an individual. They are a part of who I am. Even the thoughts that are negative and that I am working to improve are a part of who I am. And I can’t say ‘’I have this thought only because I read ______ book” because one of the truths of being human is that we don’t know if I would have had that thought eventually anyway, or if I only had it because I read something that triggered it. It’s possible. But we don’t really know. I can’t unexperience my past and say “this is the essence of me minus _____”. And as much as we try, we can't unautism him and say "this is him minus autism.”

Is that clear as mud? MMMkay.

So here is what I do know. With autism there are certain behaviors that are common that are not as common in neurotypical children. Like lining up toys. Or smearing poop on the walls. Or having rigid behaviors. Or disordered language. Behaviors or ‘symptoms’ if you will, of autism. Behaviors that vary amongst the spectrum but that are still associated with autism. Behaviors that you can address with therapy and intervention and medication.

Behaviors like meltdowns.

So… what am I calling a meltdown?

Well, it’s not a fit over a lollipop at the checkout (although that can lead to one). It’s not kicking me in the shin because I took away the pretty knife he was inspecting (although that can lead to one) and it’s not throwing himself on the floor and pounding it with his fists because I interrupted his playtime (although that can certainly lead to one). Those are what I would call ‘NT’ behaviors. Things a 2 or 3-year old would do when they are learning boundaries and believe they are the rulers of the universe. Only my son is 5. So he does these things (still) not unlike a 2-year old, in spite of the fact that on a non-verbal IQ level, he is 5 (More attempt at separating ‘this’ part of him from ‘that’ part. Yes, technically there is a difference between verbal and non-verbal IQ).

And here’s where ‘’is it brattiness or autism’’ gets tricky; what can start out as something we would otherwise call brattiness (aka 2 year old behavior in a 5 year old) can turn into a meltdown.

One of the defining characteristics of autism is the absence of, or reduced ability in the area of, emotional regulation.

I can’t say ‘’they’’ all do such-n-such but I can tell you about my boy; he can NOT regulate his emotions.

So it gets too cold in your house you either *turn off the a/c or *turn on the heat. It’s the same with emotions. We’ve all known adults who don’t know how to ‘’turn it off’’. Road rage. Abusers. They get angry and it just builds at an uncontrollable speed until it explodes. That’s what happens with my boy. But instead of it all being outward (like road rage) it’s primarily inward. I might get caught in the storm, but he turns in on himself like some kind of imploding bomb.

As he gets more and more upset he transitions from crying to screaming to a kind of guttural bellow that gives me fantasies of holy water-water guns; like instant ‘get thee gone’ in a pocket.

Because it’s scary.

And it’s hard to watch.

He gets so upset that no, you can’t distract him. You can’t re-direct him. You can’t stick a lollipop in his mouth or toy in his hand and pop the bubble. So the whole ‘’giving in’’ debate about fits in public does.not.apply. This isn’t just a debate about strong will, although he has that too (yay). It’s about being out of control. At its worst he hurts himself. He can knock himself out on the floor. He scratches at his face. He thrashes. Sometimes he cries for me but even as I try to hold him he’s so gone that he is thrashing and screaming in my arms. I can’t comfort him. I can’t make it better. I can tell him to stop but it’s an empty and ultimately heartless response because he CAN’T stop. He is so overwhelmed by the emotions as they build that they tear him apart.

He … melts…

 There are millions of theories about tantrums.

Spanking. Time-out. Time-in. Ignore. Talk it out. Distract.

In our experience, none of them work on meltdowns.

None.

All I can do is be there and wait. Hold him to keep him from hurting himself. Keep calm when he can’t.

At some point (vomiting or coughing maybe, but more usually exhaustion) he will stop. He gets so exhausted that he will fall asleep still screaming or sobbing. This leads to night terrors. He will be caught in a fit and unable to wake himself. It’s inevitable after a meltdown. How can his subconscious rest when he falls asleep utterly distraught? It can’t.

So what triggers a meltdown?

Ahhhhh jeez.

Sometimes it’s the lovely word ‘’no.’’ My fallback word that, in spite of all my ‘positive re-direction’ training, I still use.

No, you cannot have a bag of artificial corn, BHT and red food dye. No, you cannot touch that woman’s bottom. No, you cannot lick that wall. No, you cannot punch that 4-year old just because he is breathing in your ‘space.’

But let me assure you it isn’t just the word ‘’no’’ itself. It’s the re-direction. It’s the inability to have ‘it’ now. It’s the inability to anticipate what will happen next if option _x_ does not happen. It’s a change from the plan in his mind that I am not always even aware exists.

So some of that might be personality. Some of it might be autism. Some of it might be receptive language disorder or expressive language disorder or it might be the direction of the wind blowing. Whatever it is sucks. It’s a little boy overwhelmed and a Momma doing her darndest (my Mom reads these posts) to help her boy manage life.

And let’s pause right here at the eve of a helpful oh-I-know-how-to-deal-with-your-kid outpouring: don’t recommend The Strong Willed Child to me. Again.

Have it.

Read it.

Tried it.

Nope.

Yes, tried it consistently.

Nope.

No, really. It didn’t.

Because this idea only takes into account tantrums or defiance that are triggered by a negative or ‘control’ factor. It doesn’t account for the meltdowns that are triggered by a siren. Or a cellphone playing some awful pretend-music. Or a stranger making eye-contact with him. Or someone telling him he’s cute. Or the nice greeter offering him a sticker. Or the kid who asks him to play. Or sleeping late. Or waking earlier. Or I put strawberry-orange juice in the blue cup instead of the red cup. Or music is playing overhead. Or I put his right sock on before his left sock.

Or I touched his Legos immediately after washing my hands and now his Legos are potentially contaminated with water and wet Legos = hell on earth.

And it doesn’t consider that positive emotions and experiences can also trigger them.

He does something amazing? He gets super excited? He gets tickled to hysteria? He plays chase until he is giddy? He enjoys something so much that his excitement or joy exceeds his ability to regulate?

Meltdown.

From too much joy.

Yeah.

So even in play, when other kids are jumping and bouncing and hopping along like Tigger, free to use up their boundless energy, He has to be contained. I have to do my best to keep him level. I have to balance his emotional state like blood sugar; never too high, never too low.

I am the keeper of boundaries; emotional, physical, cognitive. And when I can’t manage them, we both suffer.

Now, it is getting better. I can anticipate him better. His language is improving so that we can understand each other better. Our routines are fixed with all of his therapies so for the most part we’re good.

But there is always the unplanned.

My phone rings.

Or I get a text.

Or something spills.

Or I don’t understand what he is saying.

Or … or …

These days we are much, much better. These days little hiccups don’t always end in a meltdown. Right now we might go whole days without a meltdown. A year ago we didn’t. A year ago … we were in a much different place.

Now we have whole hours at a time when he is just floating through the day playing with me, living in a bubble of therapeutic play in his comfortable, predictable little world. It’s easier to get him back after a small upset and it’s really freaking awesome. So awesome that meltdowns are no longer the driving, maddening force they once were. They aren’t what fuels me and keeps me going. Now, more than before, I’m fueled by hope. Hope and the knowledge that we are making headway. That we are moving forward.

So there ya have it. And I wrote all of this because someone said their crying child was having a ‘meltdown’ and I, in all honesty, said out loud “If that’s a meltdown then what the hell do we have?” And I posted it for all of you to read because a friend, not knowing what the difference is and what we really have on our plate, asked an honest question that I gave a vague, rambling answer to, not unlike this post which is ridiculously long and probably still doesn’t answer the question. A question I am still trying to find a suitable answer for.

I was given more than my fair share of words in this life, but never enough of the right ones. When I find them, I’ll share them.

So, until then…

How do I know he’s not being a brat?

I don’t always.

How do I know when it’s autism?

I can feel it? I can see it? I can hear it? I am making an educated guess based on diagnoses, experience, therapies and working with and watching and loving him every day of his little life.

How do I know when it’s a child with autism struggling to understand a world that doesn’t make sense to him?

It always is. Always.
Even when it’s not.

Love,
Spectrum Mom 

Almost meltdown  ...  &  ...  recovered

"Momma, can I have a candy stick like a hamburger?"
Um. Huh?
"It is a cheese stick in the box. Come on I will show you at the garage sale."

#HeWantedAnIceCreamSandwich  
#ButWeWereOut
#PlanB
#icecreamonastick 
#GarageDeepFreezer
#autismspeaks
#figurethatoneout

Lettering

So here's an updated version of our typing project. Boy added ''Lego'' as something he wanted to watch on YouTube. Good call, my Boy.

So here is a .pdf template and I will post pics this afternoon of his typing prompts. Heeeeeeeeeeeee

https://drive.google.com/file/d/0B-iqosn6ny4Zekg1NU51SlEwWkE/edit?usp=sharing



If you're new here and have no idea what I'm talking about, no worries. Click here and catch up!
http://spectrumletters.blogspot.com/2014/07/momma-letters-baby-letters-and.html

EEG update; To be or not to be... it's up to us.

Ok.

So according to the neuro #2+++ "idiopathic staring spells" are common in severe autism and the prolonged episode we experienced after his EEG was not a seizure but rather my Boy's brain shutting down from over-stimulation. Which is the OPPOSITE of a seizure. Okthen.

He felt that Boy's "autistic spells" are mild enough in nature as they occur in daily life that they can be accommodated (rather than medicated) and that it is up to us whether we want the 24 hr EEG. Yeah-NO.

Because of the severity of my boy's autism** (**Cue Boy hiding under exam table and growling) he said that if we decide to do that he would like us to go to the epilepsy center, but again, because they are short and mild in nature, they would likely choose NOT to treat medically, even if the diagnosis were epilepsy. Which they can't be sure it is. And can't be sure it isn't. Got that? Good.

So that's a pretty firm yes/no/I dunno accompanied by a very adamant "move forward with life as you're doing it".

Additionally, (because there's always more and it's always an after thought) previous Drs who were unable to elicit post-rotary nystagmus and patellar reflexes may or may not have been incompetent. I didn't share this diagnostic opinion with our pediatrician (who rotated under neuro #2) when we updated him yesterday. I'm thoughtful like that.

So.... odd reflexes that come and go? Who knows. Epileptic? Who knows. Idiopathic staring spells are 'best guess' by a highly revered Neuro? Um... ok.

On with the show.

#EEG

#SunnyDayBeatsTheEEGBlues

#Jeez

 

+++Neuro #1 said that despite his obvious Challenges (cue Boy licking my shirt and rubbing his teeth on my arm) we are doing an amazing job and to keep up his therapies.

v40.31 ; Wandering under the diagnosis of Autism Spectrum Disorders

Wandering. It's kind of a calming word by itself. "To wander.'' To aimlessly stroll without care or concern. Weightless. Worry free.

ICD-9 codes change things. They can, by their neatly organized placement in the DSM, suddenly change the very meaning of words.

Because the ICD-9 for ''wandering'' (v40.31 secondary diagnosis to Autism Spectrum Disorders 299.00) is not worry free. It is not weightless. In fact, of all the numbers tagged onto my son's electronic existence, this is the one I hate. If he wandered I would still hate it, I'm sure. But I hate it most because he doesn't ''wander''. He bolts. Technically ''bolting'' or the ''atypical fight or flight response of a child on the Autism Spectrum''. It is the scariest, maybe the only truly scary thing about our journey through diagnosisland. These diagnoses, the words, their meanings are all arbitrary. They don't mean to anyone else quite what they mean to me. Most of them are just labels. Scotch sticky labels on a box or binder where I keep his what-have-yous for our seasonal updates.

But bolting means something more. It isn't just a sticky label. It is frightening. Terrifying. It makes me feel helpless.

I've never lost him before, but it's always been coming. He's never been in (or near) harms way, but it's always been just around the corner; waiting for me to look the other way, to bat an eye, to miss a step.

v40.31 is a little dagger just waiting to cut.

He's almost five years old. Most five year olds play t-ball or ride their dogs around the back yard or put firecrackers inside of frogs to see what happens (yes). Mine goes to therapy. Occupational Therapy. Physical Therapy. Speech Therapy. Behavioral Therapy. Animal Therapy. Water Therapy. And every one of those scheduled, planned events comes with a qualifer; he bolts. He panics when he leaves the car. When one therapist tries to walk him to the next one's office. When a child he doesn't know is playing in the waiting room. When Momma leaves the room. Or the car.

He bolts.

There is something in the anticipation of  the transition that his little mind, bent on the all-consuming comfort of routine and predictability, cannot tolerate. And he bolts. Like a teenager being chased by a knife-wielding maniac, he just...takes off.

I used to put him in overalls. They were like built in handles for grabbing the bolter. But dad-blast-it he outgrew Thomas. So now we have graduated to a monkey; I used to say I would never put my child on a leash like a dog and now by-gawd give me the freaking leash.

Mr. Monkey working hard.

Today he didn't have Mr. Monkey on. He was in the car. In his car seat. He was fully harnessed. A/C running, door cracked while I made my heck-of-a-sale from one of those swap sites on Facebook. (Have you tried that? I can sell anything on those sites. I've seen people sell used shampoo bottles. It's like garage sale heaven.) So this transaction takes MAYBE ten seconds. I stand up out of the car, hand my gently used item to would-be buyer, take money and BAM.

It's like someone hit me with a baseball bat.

I see, out of the corner of my eye, Boy running by me full blast. Right through the gas pumps (I was parked up by the door so by the time I realize this is MY child, he's a solid 30 feet away and running hard) headed for the grassy knoll beyond. Grassy knoll; otherwise known as a median. Like.... the BORDER OF THE HOLY FREAKING HIGHWAY.

Some blonde angel in scrubs and diamonds jumped out of her Mercedes and grabbed him as I was running, gasping and screaming bloody hell at my 4 year old to come back. Which was hilariously silly because he doesn't respond to yelling or his name being called so I was really screaming just so people would stare at me like the moronic, helpless mother I obviously am.

I'm still see spots in front of my eyes.

Thank G-d in heaven she was blonde. And pretty. Boy loves a pretty girl. So when she grabbed him he looked at her with a smile, fully under the impression he had nowhere else to be. She followed us back to my car and from the expression on her face and the scrubs she wore I expected something worse than what I got. What I got was an absolute gift. She stood there while I potato-sacked my kid into the car (giggling and squealing because who doesn't like to be tossed into the car like a sack of potatoes by a Momma who's hyperventilating). She stood behind my car. Looking at it. And I watched her. And then her eyes came up and met mine and she said "We got him. He's ok." And she walked away.

See the thing is, when she braked her expensive car and flung her body out into the traffic of that gas station, she didn't know. She couldn't. When she caught him and looked at him she couldn't tell. There isn't a chromosomal-related physical characteristic to tell her why she was there, stopping a child from being shredded by oncoming vehicles.

All she had to help her process, all she saw that made any sense in the world, was my ''I could care less what you think about bumper stickers, my son is autistic and he bolts so I am going to plaster my car with warnings in case, G-d forbid, anything ever happens. So someone will know. So whoever sees this car will understand, for just a brief moment in just a tiny way, that the child inside is precious, but the child inside needs extra understanding." And she saw them. And she read them. She read them. And she understood. She understood that v40.31 sucks. And whatever else is going on inside that car, v40.31 is the worst.

"He's Ok."

And then she got into her car.

And she helped v40.31 suck a little bit less.

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.