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.

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

RIP London McCabe.

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

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

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

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

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

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

And think about it.

I know humans are capable of horrible, horrible atrocities.

I know humans are capable of great beauty.

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

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

So.

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

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

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

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

RIP London McCabe.

<3

London McCabe. Lover of hats.

For more on the story:

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

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

Melted

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

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

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

But I do wanna talk about it.

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

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

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

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

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

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

And then there is the fact that he has autism.

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

He’s not one thing; he is many.

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

Is that clear as mud? MMMkay.

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

Behaviors like meltdowns.

So… what am I calling a meltdown?

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

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

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

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

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

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

Because it’s scary.

And it’s hard to watch.

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

He … melts…

 There are millions of theories about tantrums.

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

In our experience, none of them work on meltdowns.

None.

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

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

So what triggers a meltdown?

Ahhhhh jeez.

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

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

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

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

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

Have it.

Read it.

Tried it.

Nope.

Yes, tried it consistently.

Nope.

No, really. It didn’t.

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

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

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

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

Meltdown.

From too much joy.

Yeah.

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

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

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

But there is always the unplanned.

My phone rings.

Or I get a text.

Or something spills.

Or I don’t understand what he is saying.

Or … or …

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

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

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

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

So, until then…

How do I know he’s not being a brat?

I don’t always.

How do I know when it’s autism?

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

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

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

Love,
Spectrum Mom 

Almost meltdown  ...  &  ...  recovered

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.