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.

Jell-O.

Because today he heard Grandma say the gelatin was on the same aisle as Jell-O.

And he'd heard of Jell-O before.

Somewhere.

I blame YouTube.

So Grandma made him Jell-O.

And he couldn't really manage to eat (new food alert) Jell-O.

So instead he licked it.

Peeps, we have so, so, so much Jell-O left.

Oh. And then he snuck into my room and chugged my kale juice.

Every drop of it.

Go figure.




<3
‪#‎SpectrumMom‬

Pic of my boy with his grandma. And Jello-O. And hands flicking so fast they're about to fly off.
Because he was THAT excited.
Oh. And proof he licked the Jello-O. Serious OT kuddos, kid. For reals.

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

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.''

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".

Lettering

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

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

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



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

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.

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.