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.

<3
#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.

— feeling blessed.

The Hard Stuff

I'm a Mom. So I worry.

I worry about the gruesome death of a five year old by consumption of excess sugar and the vitamin deficiency of a broccoli-free childhood.

I know, right?

But some of the things I worry about are harder to pin down. And infinitely more terrifying.

Maybe NT Momma's worry about some of these things. Maybe every momma does.

But I learned for certain this weekend that my worst fears are shared by a great many Spectrum moms. So if nothing else, at least I'm not alone.

I attended an autism conference. My first.

And it was amazing.

It was also really, really, really hard.

Because some of my worst fears are already real life, actual, serious concerns in the autism community at large.

And isn't that awesome?

And isn't that terrifying?

Because whether it makes you angry or not, whether it scares you or makes you sad or not, many of the Spectrum Mom's fears aren't just "fears."

They are realistic concerns about the trajectory of some children on the spectrum.

Especially children, like my Boy, who come with an alphabet soup of diagnoses.

Fears that reach into the unknown, frightening, far off adulthood of our babies.

Fears that are shared by therapists and doctors and teachers. And other moms.

It's a bit overwhelming to hear your fears coming out of other people's mouths.

To hear their concerns about emotional connectivity and relationship awareness and ever-elusive, hard-to-pin-down concepts like life and death and love and hate and how our actions are connected to our feelings.

Or how our actions have consequences.

Or how those consequences can be harmful. To themselves. To others.

Concepts some of our kiddos haven't grasped yet. Concepts they maybe will, but maybe won't ever, grasp.

l know that all a Mom can do is her best. And I'm giving it.

Cuz this kid deserves everything I've got.

Not because he earned it or asked for it.

Not because I love him or he loves me.

But because he's here. His very existence qualifies him to receive the absolute best he can get from me.

I think more people need to remember that: he deserves it because he's here. It's that simple.

Loving him just helps fuel me to give it to him.

Well, love and life and the fact that he's very, very cute.

<3

#SpectrumMom

Our alphabet soup: Autism, ADHD, SPD, ODD, Anxiety, Impulse control disorder, expressive language disorder, receptive language disorder, articulation disorder, phonological disorder, global developmental delay, weakness of the musculoskeletal system....(more here)

And the cutest dimple you've ever seen.

Just one of the many, many, many awesome seminars from the conference.

Isolation

I'm going to start this one with a post script. Because I can. So here ya go...

P.S. After I wrote this I decided to save it as a draft and not publish it. Not because it's a rambling public display of ADHD thought processes, which it totally is, but because it was such a downer coming right on the heels of the meltdown junk I shared.  I didn't want another bummer clogging up the blog. Life's more fun than that as a rule, but sometimes life just doesn't seem fun. Sometimes the heavy weighs a little more, the hurts tug a little more at your heart.

This was written on a hurting day.

And then today... well... today was so awesome that I'm able to put this out there in a way I couldn't when I wrote it. Today, instead of hate and frustration we had happy and funny and friendly. We escaped, for one beautiful Indian Summer day, the pressures of our burdens and just ... existed.

No, he didn't like leaving the neighbor's house. But we were AT our neighbor's house. He played with their children. Two ridiculously sweet and adorable and fun little girls. Took turns too, which is a whole other level of where-the-hell-did-that-come-from.

He ran and climbed and smiled and giggled and watched and participated. He tried to swing, wasn't quite sure what to do. he tried to play tag, wasn't sure about the whole you-me-you thing. It was ... awkward... but it was great. It only took... I don't know how long... two years? Have they lived here that long? It was only a few months ago he was growling at these same girls when they came into our back yard, trying to chase them away. Today was a culmination of work and timed interactions and a kind of panicked road block attitude I always had when he interacted with them; let him play for just a few minutes, kept it short, then re-directed quickly before he realized what happened.

There was hardly any roadblocking today. Today everything was awesome.

And then we came home and played in the dirt in our pjs. We ate pizza. We swang for hours, just regulating. Being quiet. Being together.

So when you read the rest of this post and think 'dang that sucks' just remember that even when I wrote it I knew that everything comes in phases. Nothing is the same forever. Some things get worse over time. Some things get better. There's good and there's bad. 

And sometimes, on rare and beautiful days like today, there's awesome.



As he gets older, most things about our life get easier.

We understand each other better.  We can anticipate each other more often. We communicate better. We enjoy each other even beyond the mother-son relationship: we are friends.

But as he gets older some things get harder. The biggest one right now, the one that causes the most heartache and is the reason behind family drama, is social.

Social-emotional.


He was SUCH a friendly baby. No, he didn't want anyone else holding him, but MAN could that kid charm you. He could giggle and run in circles. He could flirt. He could bring you into his world. At the store he could play the cashier and wrap the greeter around his finger.

And so, so, so much of that has gone away. As his difficulties have solidified, they have also permeated more of his personality. They have overshadowed the free spirit he was born with. The spirit I promised never to break is right there in the danger zone: cracked and fragile. It's the hardest part about our journey. I want the smiles back. I want the flirts. I want the side gazes that let me know that even though he would not give all of himself to the friendly adult requests for child affection, he would give a big enough chunk to leave us all laughing.

And I miss it. I miss the way he would charm people and reel them in.

I miss it terribly.

Because he is getting more and more selective about people as time goes by.

I don't know why.

My guess is that he is blaming those around him for his discomfort. That the sensory and emotional overload that is wrecking havoc on his little body needs a persona for him to fight; and that persona can take the form of anyone in the vicinity. But that's just a who-knows-Momma-is-just-trying-to-rationalize theory. I don't really know for sure.

I do know that our circle is shrinking.

I'm the only one who doesn't get the regular ''I hate you'' treatment from him. Not many people are good with a 5-year-old telling them he hates them. He hates them looking at him. He hates them touching his things. He hates them being in his space. Hate.

He sticks out that little proto-declarative index (yay for small victories) and says "I hate you."

Not many people get that he doesn't actually hate them, he hates the way he feels when his bubble is being poked. It's his word when he's angry or frustrated.  When he's stressed. When he's overwhelmed. When he can't get away. When he just wants it his way and doesn't understand why you aren't giving it to him NOW. Sometimes it's just because he was thinking one thing and you didn't know it. Freaking theory of mind crap.

And then there's the fact that he wants to be around people. He asks for it every day. He wants to see kids. See his ''teachers''. See family. Go to stores. To go to parties. He asks to go back to the pumpkin patch. A lot.

But when he's there his anxious-overwhelmed-little self can't deal. Sometimes he tries to tell me.

I love home.

I want to be at my home.

..but then it builds so fast I can't keep up...

I hate it here.

... and our favorite...

I hate that (person/people/place/thing/etc).

Because the idea of all these wonderful things is .... wonderful. The reality of them is more... real. More difficult. More noisy. More frightening. More frustrating. More confusing. More. And he wants to escape.

Disordered fight/flight response.

Even our family is getting tired of it.  And that's the hardest part for me today. Because it's one thing for strangers to be put off by it. Awkward. Embarrassing.

It's another when friends are. Sad. Lonely.

But when it's family? Heartbreaking.

Neither of us want the isolation that's coming. But it circles closer and closer as our world shrinks.

I certainly 'get' what's happening, don't misunderstand. I 'get' that it's rough on people. That they don't want to be around the negativity. That their kids simply can't understand hearing another child act certain ways they can't approve of or empathize with. Doing things they don't want their child to emulate. That they also want the happy little toddler with the dimples back. They want to be able to say "Hi!" and get a hug and play around with him when they drop by or when we go to visit or when we have a play date. They wanna hang out and have this great, light-hearted time. They want to say goodbye without a fight or a scene or a fit. That they want to stay for longer than his 10 minute welcome threshold.

But our life doesn't work like that right now. Our life is structure and sameness and therapy and lots and lots and lots of really hard work because behaving in a socially acceptable way takes lots and lots and lots of really hard work and therapy and sameness and structure. And even then it only comes in bubbles.



We just completed one of the subtests of a retrospective comparison test.
DAYC-2 (Developmental Assessment of Young Children)

90 days ago on the social/emotional component he registered at age 9 months.
Now he registers at 21 months.

Of age.

That's HUGE progress. Huge. In this one area to make that kind of progress in that kind of time is phenomenal.

His therapists are happy for us... But other people in our life look at him and see a 5-year old boy and expect to get ... a 5-year old boy. A typical 5-year old boy. They don't see the advances and the breakthroughs that were so hard-earned. Because they're invisible.

Autism. The invisible disability. It. Absolutely. Is.

I want to jump up and down with excitement and tell people that today he showed me a Lego project he built from his imagination. OMG. And that he made eye contact with his OT today without prompting. WOW. And that he actively generated a pretend play social story that was perfect down to the tiniest detail. What in the world?!

I'm reveling in his progress.

And then someone comes along and says his behavior is unacceptable.

That he should be behaving better.

That he should be ... more. More than he is.

And maybe he should. Probably, by some mystical scale that I don't have and can't possibly measure with, he should. But all the shoulds don't help us.

He's doing his best. I'm doing my damndest. We have absolutely no idea what we are doing but we're giving it our all. And we're doing it together.

And in my mind, that makes for a beautiful life.

I'm not giving up, either. We'll have more play dates. We'll keep trying the hard things. I'll keep trying to understand him. I'll keep learning what is worth the trouble and what isn't a deal. And I'm going to keep going no matter how tired I am and how crazy my hair looks or how long I've lived in these same gray yoga pants because he is still going. And he is still trying. Whether anyone else understands or not, I'm proud. I'm proud of him. I'm proud of me. I'm proud of us.

Hopefully everyone else catches up.

Love,
Spectrum Mom

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.

Momma letters, baby letters and squeakless learning.

Writing his name is coming along. Slowly. Very slowly. Painfully. Slowly.

So slowly that I've learned something new; Letters are not writing.

I am just starting to wrap my brain around this.

Letters are not writing.

Letters are the base of the pyramid of written, typed and most other non-spoken forms of communication.

Writing involves fine motor skills and squeaky sounds on delicate paper.

Letters are not writing.
Typing is not writing.
Writing is not reading.

And which do I want more? Writing or reading? 

So we are taking a mini-break from writing to learn letters. Not A is for Ant because Boy couldn't give a Hootie's Blowfish about Ants or Aunts or Alphabets. And no, he can't sing the song. So I'm trying a work around.

He learned the letter 'H'.

 "It's a line (finger down his chest) and another line (finger down the other side of his chest) and a line (finger across the middle). That is Hero Factory."

Ahhhhhhhhhhhhhhh....

Light bulb moment. I love light bulb moments.

"Yeah. That's called an 'H' and 'H' is for 'Hero'."

Now he's telling everyone. Our world is the letter H.

So progress a few to rainy day/not enough to do/Youtube day/Momma's beat day.

"What do you want to watch?" YouTube, I love/hate you.
"Hero Factory." Of course.
"Ok." (Starts typing)
"NO! I will do it! I will type it." (proceeds to find iphone's mini letter 'H').

Spectrum Mom mind blown.

I tried to help him with the rest but E & R.... they don't mean anything. They are rambling sounds that his little auditorilly challenged self just can't grasp.

Ok. Open up your brain.... think...

"Boy, what shows do you want to type into Youtube?"

"Hero Factory. Mixels. Thomas."

Type it up for him. Print it out. Let him follow the letters like he follows his Lego directions.

Problem solved.
https://drive.google.com/file/d/0B-iqosn6ny4ZcEtjb0NsNVRpb2c/edit?usp=sharing

I thought.

But typing in himself he noticed the 'E' he typed came up on Youtube as 'e' and we narrowly averted a meltdown.

Ok. 

"There's a momma letter and a baby letter for each letter you type. They sound the same and they build the same words. You might type a momma and baby comes up. That's ok. They're the same letter."

Got it.

Problem solved version 2.
https://drive.google.com/file/d/0B-iqosn6ny4ZQ3Y4ZmRPU1lucUU/edit?usp=sharing

If any of your kiddos are struggling, I hope you give this a try. It took me about 5 minutes on a computer doing pic searches for Google and copy/paste. Let me know if it works for you!!!!

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.

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.

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.

Welcome To The Spectrum

    We didn't actually just arrive here. We've been here the whole time, but our immediate family was the only group who knew it. Oh, there've been the few, wonderful/amazing/supportive therapists along the way who knew that we were here, and who bravely helped us find our way. The rest ... not so much.

     He's four and a half. Well, almost five. And when he was two weeks old I was already staring at him wondering what was wrong. At two weeks old I was told it was the crazy-mommy-baby- hormones talking. At two months, still baby hormones. At one year, paranoia. At two years, low thyroid. At three years, still paranoia and Xanax might help. At three and a half, someone finally watched the videos and listened to me. At four he finally started receiving services. A lot of services. At four and a half I finally got a diagnosis that made sense.
     It's three nights after my one-on-one with the PhD. The one who came as close to understanding him as someone possibly could after two days in a locked room with my boy and his Legos, watching him stim, watching him run around the room in circles, try to escape the exam room through a window, giggle at the Play D'oh ... and listening to him scream when they pulled me out of the room to fill out forms. There aren't any more tests to run at this point. Every inventory, assessment, diagnostic schedule, observation pattern... they've all been run and I have a 4-inch binder where I keep them like some sort of golden trophy, hole punched and sorted and waiting for someone to try to tell me, once again, that it's all in MY head.
     Even now, after all this time, I don't understand. Why would anyone, let alone a medical professional, tell a parent they were paranoid, overly worried or depressed instead of just sending the kid out for an eval? I look back and I can still see him, running around the exam room of our (former) pediatrician's office, touching everything, climbing on everything, not making eye contact, not responding to questions. Just running in circles giggling. She looked me in the eye and said, "He's perfectly fine. You're worrying too much."

The 4-inch Dx stack says differently, my dear indifferent Dr.

299.00 Autism Spectrum Disorder; Requiring very substantial support.
312.9 Unspecified Disruptive, Impulse-control and Conduct Disorder (R/O)
314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly hyperactive/impulsive presentation (R/O)

...Dyspraxia... Dysgraphia... Sensory Processing Disorder/Neurological Sensory Differences... Poor Muscle Tone... Abnormal Gait.. Receptive Language Disorder.. Expressive Language Disorder... Phonological Disorder... Articulation Disorder... Fine Motor Difficulties.... Normal Vision... Normal Hearing... Impaired Verbal IQ... Average Non-Verbal IQ...

     I've been told

     He also giggles and hugs and smiles and runs in circles and finds joy in everything from pattern walking to popping Legos on and off over and over and over and over.... So I don't care what the diagnosis is. I only care about the help he's going to get, the services and finally... after four and half long years... fewer people looking at me like I am out of my mind. Maybe. Maybe they will see him in his monkey halter, wearing footie pjs and giggling or, if we are at the grocery store, tantruming and screaming like he needs an exorcist, and think I need serious Mommy-intervention.
     But the ones that matter, the OT's and PT's and SLP's and Behavioral Therapists... they will look at the papers in their hands, usher us in the door. and we will start fighting as a group what I've been fighting on my own for a very long time.

   I hope.