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.

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

Storytime

Our local library has a "sensory storytime" for children on the spectrum or with other special needs. We went once last year but at the time we were still struggling with the whole 'get in/get out of the car' process. So we hadn't been back. We've pretty much mastered that now so I signed us up again.

Well... Sensory storytime was a bust.

The room was double booked so storytime was out in the kids area. And there were a LOT of kiddos there. 

Okay like ten, but that's 10x more than he can usually handle. And then add in the parents. And it was a different librarian. And there were drawers of shared Thomas and lego toys. Yeah.

He really did okay though until the bubbles. Bubble. MACHINE. That was just all kinds of exciting. So there he was, flapping his hands and doing what we call his "scarecrow dance." Super scrumptiously happy.

Then ear hitting/face slapping panic when it was over.

We didn't even get to check out the book he'd picked out. He was done.

Oh well.

We tried.

#AutismAwareness

#WhenSimpleThingsAreHard

<3

Pic of me carrying my 5 year old one block back to our car. Post-storytime.Yeah.

Eclipsed

My Boy's language development has hit a bump.

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

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

It's had us all in giggles.

Then suddenly last week we noticed something was wrong.

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

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

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

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

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

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

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

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

Cue angels singing.

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

It's okay to feel that Wonder Bread knot in your throat choking you now. I know I did.

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

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

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

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

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

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

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

Yet there I stood. Staring at the eclipse.

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

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

An eclipse.

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

Preposition loss eclipses 'wh' questions. Eclipses him. My son.

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

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

So here's to sunshine.

G'nite <3

Ecliiiipse.
Not that you can tell from the pic. But I could tell. Because I looked at it. 20 minutes before it was safe . Because I'm a rebel.

#Eclipse.

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

Road Rash

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

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

Oh no, no, no, no, no.

That would be incorrect. Not right.

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

And then I can't anymore.

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

And he can't and I can't.

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

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

He can't.

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

I knew when he was on yellow.

It came fast and it came in a panic.

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

My poor little guy. I don't want to say it isn't fair because no one's life is ''fair''. Living in this world comes with a 'buyer beware' tag that most decide to ignore as best they can, but it's sticking out from every purchase. You can't exchange your lot and I don't think I'd want to anyway. I love my Boy. I love the freckles and the giggles. I love the lines of robots and searching for legos with a flashlight because that missing 1x1 Lego is SOMEWHERE.

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

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

Life is good.

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

But he can't.

Not yet.

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

A visit that isn't policed by autism.

But not yet. Not yet.

YET is the word.

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

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

Today it thinks, "Maybe we will dig that stroller out of the garage.''

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

Thanks for listening,
Spectrum Mom

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

Buried treasure

There comes a time in every rightly constructed boy's life when he has a raging desire to go somewhere and dig for hidden treasure. - Mark Twain

For every moment that I can look at him and say, "That's the autism" there is another, glorious moment where I can look at him and say, "That's my boy."  ~Letters From A Spectrum Mom

"Dare is buried tweh-zure some-whey-uh!"

"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

Letter A

We've had some success with the ''type it yourself into YouTube'' practice so I pushed the envelope today.

Play D'oh lettering.

Most Pinteresting Mommies know this one, but my guy hates letters. He does love him some Play D'oh though.

Well, now that he knows LETTERS = YouTube cartoons, he's a smidgin more pliable. Just a smidgin.

But here's the growth factor from the above little factoid that really blows me away; my Boy doesn't understand why we do things. Curse those "wh" questions!

But really;
 "Why do we wear shoes?"  Shoes and socks on feet.
"Why do we eat?" Apples and banana peels.

That's our language reality. So....
"Why letters?"  So that I can find my cartoons on YouTube like a big man.

Window. Opened.

Why answered.

Welp.... I jumped all over that like hotcakes. Spectrum Mom + Pinterest = Homeschool success.

Here's to ONE letter of success. One letter? Yup!!! I'll take it!



Hi there, Momma 'A' and Baby 'a'. How you doin'? (If you didn't read that in Joey's voice, you're doing it wrong; click here to become edjumacated: https://www.youtube.com/watch?v=YjQ1xD6UL-4  )

Lovely free printables found on Pinterest via http://www.123homeschool4me.com/ . Printed, added to slickies and put in 3 ring binder.

BAM!

'A' is for "ausome".

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.

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.