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

"Momma, can I have a candy stick like a hamburger?"
Um. Huh?
"It is a cheese stick in the box. Come on I will show you at the garage sale."

#HeWantedAnIceCreamSandwich  
#ButWeWereOut
#PlanB
#icecreamonastick 
#GarageDeepFreezer
#autismspeaks
#figurethatoneout

Letter A

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

Play D'oh lettering.

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

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

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

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

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

Window. Opened.

Why answered.

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

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



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

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

BAM!

'A' is for "ausome".

EEG update; To be or not to be... it's up to us.

Ok.

So according to the neuro #2+++ "idiopathic staring spells" are common in severe autism and the prolonged episode we experienced after his EEG was not a seizure but rather my Boy's brain shutting down from over-stimulation. Which is the OPPOSITE of a seizure. Okthen.

He felt that Boy's "autistic spells" are mild enough in nature as they occur in daily life that they can be accommodated (rather than medicated) and that it is up to us whether we want the 24 hr EEG. Yeah-NO.

Because of the severity of my boy's autism** (**Cue Boy hiding under exam table and growling) he said that if we decide to do that he would like us to go to the epilepsy center, but again, because they are short and mild in nature, they would likely choose NOT to treat medically, even if the diagnosis were epilepsy. Which they can't be sure it is. And can't be sure it isn't. Got that? Good.

So that's a pretty firm yes/no/I dunno accompanied by a very adamant "move forward with life as you're doing it".

Additionally, (because there's always more and it's always an after thought) previous Drs who were unable to elicit post-rotary nystagmus and patellar reflexes may or may not have been incompetent. I didn't share this diagnostic opinion with our pediatrician (who rotated under neuro #2) when we updated him yesterday. I'm thoughtful like that.

So.... odd reflexes that come and go? Who knows. Epileptic? Who knows. Idiopathic staring spells are 'best guess' by a highly revered Neuro? Um... ok.

On with the show.

#EEG

#SunnyDayBeatsTheEEGBlues

#Jeez

 

+++Neuro #1 said that despite his obvious Challenges (cue Boy licking my shirt and rubbing his teeth on my arm) we are doing an amazing job and to keep up his therapies.

Momma letters, baby letters and squeakless learning.

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

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

I am just starting to wrap my brain around this.

Letters are not writing.

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

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

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

And which do I want more? Writing or reading? 

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

He learned the letter 'H'.

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

Ahhhhhhhhhhhhhhh....

Light bulb moment. I love light bulb moments.

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

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

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

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

Spectrum Mom mind blown.

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

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

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

"Hero Factory. Mixels. Thomas."

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

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

I thought.

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

Ok. 

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

Got it.

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

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

v40.31 ; Wandering under the diagnosis of Autism Spectrum Disorders

Wandering. It's kind of a calming word by itself. "To wander.'' To aimlessly stroll without care or concern. Weightless. Worry free.

ICD-9 codes change things. They can, by their neatly organized placement in the DSM, suddenly change the very meaning of words.

Because the ICD-9 for ''wandering'' (v40.31 secondary diagnosis to Autism Spectrum Disorders 299.00) is not worry free. It is not weightless. In fact, of all the numbers tagged onto my son's electronic existence, this is the one I hate. If he wandered I would still hate it, I'm sure. But I hate it most because he doesn't ''wander''. He bolts. Technically ''bolting'' or the ''atypical fight or flight response of a child on the Autism Spectrum''. It is the scariest, maybe the only truly scary thing about our journey through diagnosisland. These diagnoses, the words, their meanings are all arbitrary. They don't mean to anyone else quite what they mean to me. Most of them are just labels. Scotch sticky labels on a box or binder where I keep his what-have-yous for our seasonal updates.

But bolting means something more. It isn't just a sticky label. It is frightening. Terrifying. It makes me feel helpless.

I've never lost him before, but it's always been coming. He's never been in (or near) harms way, but it's always been just around the corner; waiting for me to look the other way, to bat an eye, to miss a step.

v40.31 is a little dagger just waiting to cut.

He's almost five years old. Most five year olds play t-ball or ride their dogs around the back yard or put firecrackers inside of frogs to see what happens (yes). Mine goes to therapy. Occupational Therapy. Physical Therapy. Speech Therapy. Behavioral Therapy. Animal Therapy. Water Therapy. And every one of those scheduled, planned events comes with a qualifer; he bolts. He panics when he leaves the car. When one therapist tries to walk him to the next one's office. When a child he doesn't know is playing in the waiting room. When Momma leaves the room. Or the car.

He bolts.

There is something in the anticipation of  the transition that his little mind, bent on the all-consuming comfort of routine and predictability, cannot tolerate. And he bolts. Like a teenager being chased by a knife-wielding maniac, he just...takes off.

I used to put him in overalls. They were like built in handles for grabbing the bolter. But dad-blast-it he outgrew Thomas. So now we have graduated to a monkey; I used to say I would never put my child on a leash like a dog and now by-gawd give me the freaking leash.

Mr. Monkey working hard.

Today he didn't have Mr. Monkey on. He was in the car. In his car seat. He was fully harnessed. A/C running, door cracked while I made my heck-of-a-sale from one of those swap sites on Facebook. (Have you tried that? I can sell anything on those sites. I've seen people sell used shampoo bottles. It's like garage sale heaven.) So this transaction takes MAYBE ten seconds. I stand up out of the car, hand my gently used item to would-be buyer, take money and BAM.

It's like someone hit me with a baseball bat.

I see, out of the corner of my eye, Boy running by me full blast. Right through the gas pumps (I was parked up by the door so by the time I realize this is MY child, he's a solid 30 feet away and running hard) headed for the grassy knoll beyond. Grassy knoll; otherwise known as a median. Like.... the BORDER OF THE HOLY FREAKING HIGHWAY.

Some blonde angel in scrubs and diamonds jumped out of her Mercedes and grabbed him as I was running, gasping and screaming bloody hell at my 4 year old to come back. Which was hilariously silly because he doesn't respond to yelling or his name being called so I was really screaming just so people would stare at me like the moronic, helpless mother I obviously am.

I'm still see spots in front of my eyes.

Thank G-d in heaven she was blonde. And pretty. Boy loves a pretty girl. So when she grabbed him he looked at her with a smile, fully under the impression he had nowhere else to be. She followed us back to my car and from the expression on her face and the scrubs she wore I expected something worse than what I got. What I got was an absolute gift. She stood there while I potato-sacked my kid into the car (giggling and squealing because who doesn't like to be tossed into the car like a sack of potatoes by a Momma who's hyperventilating). She stood behind my car. Looking at it. And I watched her. And then her eyes came up and met mine and she said "We got him. He's ok." And she walked away.

See the thing is, when she braked her expensive car and flung her body out into the traffic of that gas station, she didn't know. She couldn't. When she caught him and looked at him she couldn't tell. There isn't a chromosomal-related physical characteristic to tell her why she was there, stopping a child from being shredded by oncoming vehicles.

All she had to help her process, all she saw that made any sense in the world, was my ''I could care less what you think about bumper stickers, my son is autistic and he bolts so I am going to plaster my car with warnings in case, G-d forbid, anything ever happens. So someone will know. So whoever sees this car will understand, for just a brief moment in just a tiny way, that the child inside is precious, but the child inside needs extra understanding." And she saw them. And she read them. She read them. And she understood. She understood that v40.31 sucks. And whatever else is going on inside that car, v40.31 is the worst.

"He's Ok."

And then she got into her car.

And she helped v40.31 suck a little bit less.

Waterboarding

His eye itched. 

I know this because he was rubbing his eye. Repeatedly. 

So grandma and I, full of the vile hate natural to maternal figures, conspired to torture him. The concencus was swift and decisive; death by eye flushing. 

Determined to lure my captive to a tiny room where I could force my will on him, I teased him with fond memories such as "you just spent 30 minutes playing in the tub. You love water so much!" And "Mommy is going to take care of your itchy eye. Momma's job is to take care of you."

With my prey finally trapped between the sink and the door, I bent over him and.....

Flushed his frickin' eye with water. 

Repeatedly. 

We both have battle wounds from my cruel act. 

And the screaming. Omg the screaming. 

If DHS isn't knocking at our door tomorrow then, well, either I have deaf neighbors or waterboarding is legal.

(Insert evil laughter)

(Sobs)