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.

Fears and Hope

My greatest fear isn't autism.

My greatest fear isn't DD classes.

Or wandering.
Or language disorders.
Or night terrors or meltdowns.

Or the restructuring of my dreams for our future.

My greatest fear is that I am entirely capable of helping him become one of the most amazing people I've ever known. But that I will fail him because I didn't know how to do better than I'm doing.

That there was a better therapy, a better supplement, a better lifestyle. A better way.

My greatest fear is that all the understanding, patience, love and brilliance that he needs is all within me, and I don't know how to tap into it.

My greatest fear is that I'm capable of being enough. I just don't know HOW to be.

My hope is that by filling up our days with the kind of pleasant mediocreness I pretend would exist if he were NT, I am finding our way to that brilliance he needs.

So.

We shop in our pjs.
Because he has a hard time with clothes.

We share ice cream.
Because he hasn't figured out how to lick the backside of his cone.

I let him carry baby toys around the store.

I repeat with him, line by line, his favorite movies.

I hold him in the tub when he's scared of the water eating him.

We yell. We giggle. We tickle.

We cry.


And I spend my days with him chasing hope.

And outrunning fear.

May I be ever swift.

<3 Spectrum Mom

Pic of my Boy. In his pjs. Hunting zombies. From the trunk of Grandma's car.

Which everyone knows is the best vantage point for hunting zombies.

 

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

The Look

Hey friend,

I got a "look" today from a woman as we were leaving the grocery store, but it wasn't the usual look. It was the pinched smile, raised brow and sympathetic eye gaze of someone who, if nothing else, "got" that my Boy was miserable. 

I was alternating hips so his headphone-wearing self wouldn't give me a black eye, walking full blast past the pumpkins toward the parking lot.

And she got it.

She got that he was not wailing and screaming at the top of his lungs through the aisles because he thought he could manipulate me. He was not thrashing because he thought he could win. He was not crying and snotting and choking because he needed a stronger momma or a Bible thumping on his ass.

He was full on meltdown and long, long past rationalizing a way out of his torment.

I didn't know her. I don't know that I would recognize her again if I saw her. I have only a vague memory of light hair pulled back tightly from her face. Or maybe it was brown and just highlighted. I don't know.

But I saw her.

And I was grateful.

There are lots and lots and lots of blogs and articles online complaining about the rudeness of other people when autism affects their day unexpectedly. I've had a few of those incidents myself, but only a few.

The rest can usually be categorized as either blank-stared shock or awkward avoidance. A small percentage, usually someone of the more... Ahem... Grandmotherly persona, occasionally attempts to cajole him into distraction, which doesn't work and in fact usually makes the situation worse, but is actually very thoughtful.

The rarest of the rare though, the golden response, the creme de la creme of acknowledgment,

is sympathy. 

Not sympathy for me because 'my child has autism and OMG!!!' but sympathy because 'he is upset and his Momma is sad that he is upset.'

It might come from a place of experience or empathy or compassion or just flat out kindness. I don't know. And I don't know because it is so rare.

It's a very lonely feeling, having a child you love more than anything in the world fall apart in front of you when you know the only thing you can do to make it better is push through or leave. It's isolating. I can handle it like a badass, don't get me wrong. I can carry that 45lb, writhing five-year-old superhero under my arm like a football all the way through a super Wal-Mart and out through the parking lot like I carry the mail. I can stay calm and keep my head up, my keys ready, his shoes on and still make eye contact with anyone in my way. There is no defensive lineman that can block a Spectrum Mom.

I can usually even find my car in the lot the first row I walk down, too. This is part of my natural awesomeness: don't be intimidated.

But no matter how well I can manage grocery shopping during a nuclear meltdown, I still feel the social isolation of it. 

Deeply.

So, Ms. Eye Contact, I just wanna say "thank you."  Thank you for holding my gaze long enough for me to smile back. Thank you for breaking me out of the zone and spending 2 seconds out of your day to acknowledge me. 

Thanks for really seeing us.

Love,

Spectrum Mom


(& Super Underpants thanks you, too)

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.''

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.