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How to (almost) break your autistic child & a few suggestions on how to help when you do . . .

imageThis is a cautionary tale, based on a true story. My story.

You don’t need to have a special needs child in your life to relate. I’m certain just about any parent can, and has, used a similar formula to the one I’m about to present to ensure a similarly awful outcome to any given day as the one I’m (somewhat reluctantly) sharing.

While I cannot guarantee your personal success, I’m fairly certain you could achieve at least a bad day by following my example.

Which I suggest NOT doing.

Before I begin, I want you to know I am not an expert, but I know a few things . . . I’ve done this crap before. I have four children. The youngest will be twenty soon and the oldest, twenty-eight. The ‘child’ used into this particular example is the oldest of my quartet of kiddos.

He is autistic and awesome and I’m pretty proud of the way I’ve raised him and all I’ve learned . . . that being said –

How To (almost) Break Your Autistic Without Even Trying

I find it best to begin the process of an unplanned, catastrophic day ahead of time by informing my child about our plans for the following day, this ensures he feels comfortable with what will be going on.

The stars don’t always align just right, but it’s helpful if he is just getting over an illness. Any illness will do, in this particular case, our culprit was pneumonia. He’d just finished a round of Prednisone and his mind and body were readjusting from the effects.

In our case, it works particularly well if my son didn’t get a restful nights sleep before I rouse and ready him the next morning. It doesn’t always matter, but it’s really helpful

I generally think it’s a good idea to go over our plans again before we head out, I find it gives my son, many folks really, a sense of security knowing how the day will unfold.

On this occasion, I used our morning time together to do just that. We went over the plan. First lunch, then his follow-up medical appointment, a bit of shopping, and a quick stop to the pharmacy for meds on the way home.

Everything was well and right with the world, so I thought. I’d no way of knowing what had already begun to bubble beneath the surface of his rather calm, almost cheerful countenance. I should have known. How could I not have known? It had been a rough and restless week for him.

IMG_1238Unlucky for both of us, I didn’t realize the countdown toward detonation had been triggered before I cut the first wire (okay, that analogy works better in my head than on a page.) I’m likening this situation to a bomb, wires everywhere, and they all look the same. If I cut the wrong one –oopsie– it starts counting down faster.

The day began fairly well, but then, I inadvertently severed the first wrong wire when I made the decision to stop somewhere we don’t generally frequent for lunch.

. . . . . . . . . . tick . . . . . . . . . . tick . . . . . . . . . .  tick . . . . . . . . . .

I could see his hesitation, but everything is a teachable moment, right? Stepping out of comfort zones is something I regularly work on with him. There’s a timing to these teachable moments though, I picked the wrong time. The salad bar and deli counter, filled with a multitude of choices, served as the knife I utilized to cut that first wire.

Ignoring what I should have recognized as minor distress and discomfort, I unwittingly snipped another wire.

. . . . . . . . . tick . . . . . . . . . tick . . . . . . . . . tick . . . . . . . . .

For lunch conversation, I decided to discuss some of the positive changes I wanted to implement into our family life, such as a new exercise regime, trying some new foods and forgoing some of the old favorites. I made sure to talk about new tastes and textures, I thought I was really sealing the deal by including facts and summarizing studies I’ve been reading. He loves facts.

Apparently he loves them less when those facts include things IMG_1259about why we should sustain life with better quality foods and things like, unbreaded chicken. Autism and breaded chicken chunks – it’s a thing. He has a hard time with change. He kind of hates it.

. . . . . . . . tick . . . . . . . tick . . . . . . . . tick . . . . . . . .

He seemed to perk up by the time we reached the office of his favorite doc. He quickly unperked when the doc ordered an allergy panel and handed him a paper for flu and pneumonia vaccinations while simultaneously talking about creating a nutritional plan, one that didn’t include breaded chicken. That wire wasn’t on me, the doc gets full credit as an unwitting accomplice.

. . . . . . .tick . . . . . . . . . tick . . . . . . . tick . . . . . . .

Obviously, I can’t always control the unexpected, but an unforeseen event that changes our plans is always a bonus when I’m inadvertently making sure our day will end up in a meltdown of some severity. The next wire snipped itself.

The unplanned plan buster had to be handled, (the unforeseen event being his brother locking himself out of the house) which meant instead of the shopping, which was next on the list, we had to make a u-turn toward home. I didn’t help matters by continuing to talk about the stuff we’d been talking about as we drove toward home. Changes. I didn’t even realize he was not even close to being an active participant in my rambling.

. . . . . . tick . . . . . . tick . . . . . .tick . . . . . .

When we got to the house, his safety zone, his sanctuary, I took the opportunity to snip another one of those pesky wires. I had a couple of calls to make, so why not take advantage of our time back home? We were there just long enough for him to get his bearings before I went on with my mission to deconstruct his psyche by telling him it was time to go again.

. . . . . . tick . . . . . tick . . . . . tick . . . . .

There were two things left on the list, shopping and picking up meds. By now, you likely know I sliced myself another wire, right? Actually, I think I may have just ripped out a handful with the next decision I made. Instead of a trip to the grocery store, I chose to enter the sensory hell called Costco.

. . . . tick . . . . tick . . . . tick . . . .

Made with Repix (http://repix.it)I find It’s best to visit Costco when they are super busy, just in case the vastness of the space, the harder than normal store floors, and florescent lighting won’t be enough to break my child. There will most always be guaranteed success if the aroma of several food product demos are wafting throughout the building.

I cut a few more wires while trapped in there.

I made certain we walked right passed a pungent salmon burger demo, and then . . . then, and I don’t even know why I did it, I lost my mind and suggested he try a taste. by the way, not defending myself, okay, a little bit defending myself I was completely sensory overloaded myself. Don’t forget, kids on the spectrum sometimes have mommas on the spectrum and our house should just be labeled, “Spectrum House, home of the Cook family).

. . . tick . . . tick . . . tick . . .

At this point, all the classic signs of an approaching sensory overload and emotional hurricane are present in both of us, we couldn’t get out of there fast enough.

One more stop, it should have been in and out, but I dawdled around and browsed the aisles just long enough to yank a couple more wires.

. . tick . . tick . . tick . .

I’m almost sure the ticking was now loud enough for everyone around us to hear. There was stimming, heavier than usual breathing, his Tourette’s was triggered, and he couldn’t  make make eye contact with anything other than the floor and a bottle of Ginger Ale.

*tick*tick*tick*

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By the time we got home, BOOM! Full on distress.

And it was all my fault.

The bad nights sleep, the constant coughing, breathing treatments, and coming off the prednisone – all working their magic before he even opened his eyes that morning, compounded by a day which did not go as planned . . .

How could it possibly not be my fault?

I should have known as it was happening how it would all end, right?

Wrong.

It’s so easy to blame ourselves and feel unwarranted guilt whenThe Pit and the Pity Pot things go awry. There is this negative little bully inside our minds, just waiting for things like this to happen so it can torture us, if we don’t stand up to it, we’re screwed.

We have to override that nasty little voice with our own.

I know it wasn’t my fault. I may have been a contributing factor, but it wasn’t my fault.

I didn’t plan it, it wasn’t my intent. Things happen. Plans change, sometimes things HAVE to change and we have to learn how to handle those changes. Guess what, so do our children.

Hey – we all make mistakes. It doesn’t matter if you’ve been a special needs parent for 2 years or, in my case, 28. This kind of day will happen. It just will, but it’s not the end of the world, just a bad day. You’re not a bad parent, you’re not a bad special needs parent. You’re human.

Sometimes I forget that applies to me as well.

Life is not usually going to cooperate with the needs and schedules, the likes and dislikes, our children have. They may be resistant to change, but that doesn’t mean they’re not capable of handling it.

We need to teach them (and ourselves) coping mechanisms; skills that will get them, and us through those rough days.

When my son was younger, we learned some amazing techniques from our Occupational Therapist. Joint compressions and brushing have saved many a day from ruinDeep tissue massage and weighted blankets have worked wonders.

One thing I’ve learned is this, once a meltdown has started, you often have to just let it run itself down. If you’re shopping, leave your cart and head for the car, return home if you must. Attempting to diffuse a meltdown in public is difficult and most often impossible.

I’ve seen parents struggling with a child during what looked much like a meltdown, but once they gave the child what he wanted, it stopped. There is a huge difference between an autistic meltdown and a tantrum. Sometimes it’s tough to tell the difference. The thing is, a tantrum can be stopped, a meltdown is an entirely different beast.

imageNow, as an adult, my son has an arsenal of coping techniques to choose from, and if he senses the storm brewing, he can often find shelter, but sometimes, he gets caught up in a tempest.

When this happens, we practice deep breathing, we talk if he wants to talk, we don’t if he doesn’t. Sometimes he needs to be left alone, play a video game, or listen to music. He’s allowed to check out, sit in a corner and stim, or whatever he needs to do to pull himself out of it.

Then when we talk. After. We try to figure out what triggered it. It could have been sensory overload, an oncoming illness, or something he misunderstood. Sometimes there isn’t an identifiable reason. It could have been something leftover from the day or week before.

If we can pinpoint it, we discuss ways we can prevent it from happening again and ways to handle it if it does. It’s taken hard work and perseverance on both our parts, but he has come so far from those early days when he was a puddle of flailing limbs and tears on the floor in the middle of the supermarket.

I used to wonder if a day would come when he would be capable of coping and it did. There is hope, there is. It’s hard to see it in the middle of the storm, but those dark clouds always pass.

We know every child on the spectrum is unique, what’s worked for us may not work for you, but that hope is there. You have to look for it sometimes, but it is always there and you’re not alone.

I know it can feel that way sometimes, that’s the little mind imagebully I was talking about. You are stronger and have more resolve than that voice telling you things will never change, the thing is, they won’t change on their own.

You have to seek out support and professionals who can guide and give advice, other parents who have been there, done that, and are still doing it.

So fear not when it seems you’ve almost, accidentally broken your child . . . they can’t really be broken.

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Tears & Tulips – My own Holland

 

I started writing a post this morning to kick off Autism Awareness Month, but I stumbled upon this one from 2011 and since I’ve not consumed nearly enough caffeine yet this morning, I’m going to start with this one . . .

I haven’t always liked living in Holland. I’d like to visit Italy, just for a day. There’s a part of me that feels a little guilty saying that, but I’d be lying if I said I never felt it. I’m sure many of you already know what I am talking about, for those of you who may be thinking I’m nuts because I don’t actually reside in Holland, not the real Holland anyway.

April is Autism Awareness Month, for some of us, every month is Autism Awareness Month. Every week, every day, every hour, every minute, every second, every moment, we are very aware of autism because someone we love is autistic.

Why Holland? Because in 1987 a mom named Emily Pearl Kingsley wrote a moving piece about having a child special needs child. Her analogy has touched many hearts.

Her Holland may be different from mine, different from yours, but the her trip resonates in some way with just about every special needs parent I’ve ever known.

Her description is about the experience, the moment you realize your forever plans have been forever changed, and while those plans you’d made would have been wonderful to experience, the unexpected upheaval of them can be a whole new kind of wonderful.

Welcome to Holland brings tears to my eyes every time I read it. The first time I read it In 1989, was ‘planning my trip’ to Italy. I was consumed with everything I would do while I was there.

I never made it to Italy.

You know what? My Holland is beautiful and I’m thankful to live amongst the tulips, but I’ll admit, every now and then I wonder what it would have been like if I had just made it to Italy. I planned my trip more than once and each time, I arrived in Holland.

I can say now, with hesitation, if I had the opportunity to go back and choose my destination, I would choose Holland. I know this without a doubt in my heart. It’s not always an easy place to live. People from other places will often come here for a visit, but some of them make you feel like you aren’t good enough because you’ve never been to Italy or to Paris. They never stay long though.

There are other visitors too, ones who arrive with love and acceptance and a willingness to learn the culture, they make my heart soar.

Some days I’m sad. I watch my boys try so hard and when they get knocked down it hurts. I know I can’t keep it from happening, they need to fall if they are to learn how to stand, but sometimes I swear if I could carry them, I would.

I don’t think sad is the right word. I’m not sad. I’m not angry, and I’m certainly not mourning. I’m not sure there is an actual word to accurately describe what happens in my heart sometimes. I am so proud of my boys. They face trials and hurdles every day, more than some people face in a lifetime, and sometimes I look at them and it just doesn’t seem fair. They shouldn’t have to work so hard while others sit on the sidelines, not even cheering them on.

Not everyone sees them the way I do. They avert their eyes or stare accusingly at them, at me. Maybe if everyone could just visit Holland and give it a chance . . .

People tell me how strong I am and how much they admire me, I just want to tell them I’m not really that strong person who can handle everything all the time. I get tired and I cry and I feel weak. They don’t truly reach out because they think I can do it on my own. I feel alone and hurt. This feeling though, is thankfully fleeting.

There will always be days I just have to fall upon my knees and ask God to renew my strength.

HE always answers my prayers and sends angels my way to lift me up and wrap me safely within their wings until I can stand. My children are my greatest source of strength and when I am at my weakest, I look into their eyes and find it.

How can something as fragile as they be so strong? I wish I had the fortitude they posses. At times, I envy them their innocence. It shields them from much of the pain the world tries to inflict on them.

I know the day will come when that innocence won’t provide the protection it does now, I just hope and I pray I am able to help them learn the skills they will need to protect themselves from it all and I will be able to instill in them such a strong foundation nothing will be able to uproot them from where they stand.

I have faith and I believe with everything in me they will be okay, God would not have given them to me if he didn’t think me worthy of the job. Maybe it’s the other way around. Perhaps they were sent here simply to teach me. I’ve already learned more from those boys than I could teach them in a lifetime.

I’ve tucked my old itinerary away in a special place, it’s been so long since I’ve taken it out, I’ve forgotten where I put it. When I am tempted to try to find it, I go out to play beneath the windmills. Holland truly is a beautiful place. I wouldn’t wish to be anywhere else . . .

Welcome to Holland by Emily Perl Kingsley (c)1987

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

(C) 1987 by Emily Perl Kingsley

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Happy National Grammar Day!

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Some of us geek out when it comes to grammar, some of us don’t care, and a few of us are asshats about it. Unfortunately, for grammar nerds, our love (fascination, obsession), in regard to the proper use of language has in some ways ostracized us from mainstream society.

We are called names, shunned, ridiculed. It’s quite sad, really.

Not all grammar groupies are the same. Sometimes, we even break the rules. We are human, after all.

In honor of National Grammar Day, take this grammar nerd test and see where you fall on the grammar geek scale.

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Click HERE to take the quiz

My resultThe Pedant’s Grammarian

You may drive your friends and family nuts, but you would make Strunk and White proud. You love enforcing rules just about as much as you love the rules themselves. For you, grammar truly is one of life’s greatest joys.

Disclaimer – I’m NOT now, nor have I ever been a member of the Grammar Nazi party, nor have I any association with the Grammar Police. 

Take the quiz and tell me just what kind of grammar nerd you are!

Bleeding Ink

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Artwork by Loui Jover

I’m bleeding ink
with each beat
of my heart.
With every pulse
the words flow faster
than my fingers can
can guide them
to a page.
These words,
unlike so many others,
are mine,
mine alone.
I fear they will be
skewed,
twisted,
misused,
misunderstood.
Wasted on eyes
only looking
between the lines
for something
conveyed
without my intent.
Used to wage war
without my consent.
These words I spill,
I fear
will not be
what you hear.
You’re listening
for something
I’m not trying
to say.
I’m bleeding ink.
It pours out wounds
from words
you shot
like arrows
without aim.
Spoken daggers
flung in the dark
without regard
or reason.
Misplaced outrage
felling the innocent,
breaking their hearts.
I’m bleeding ink
upon pages
no one can see.
I’m bleeding ink,
and it’s killing me.

CRC

When Words Take Wing

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Artwork by Okalinichenko

Lines escape.
Letters become words,
become sentences,
become living poetry
breaking the veil
between reality
and belief.
Creatures created
from the twitch
of a synapse
within a stirring mind,
Flowing from pen to page
toward freedom,
words take wing.
Soaring thought,
ideas awakened,
loosed to roam
wither they will,
to set upon
unsuspecting souls,
stirring hearts,
provoking contemplation,
sharing wisdom,
creating dream.
Finding their way,
waiting to be found.
Lines escape,
letters become words,
become sentences,
become living poetry . . .

CRC

People Who Fart in Bookstores and Other Heinous Fiends

img_0997Every weekend my husband and I head off to the bookstore . . . It’s a crucial aspect of my mental health regimen. Coffee and books. There are plenty of studies out there to confirm my position on the positive effects of coffee and bookstores, at least that’s what I told my husband. I know I’ve read it somewhere.

The bookstore for me is a sanctuary of solace. Coffee is the elixir of life. Barnes and Noble is my Shangri-la. Sometimes though, my experience is bittered, polluted in this case, by other people who obviously do not understand bookstore behavior.

My afternoon started off with promise, with a bit of bliss even. I roamed the aisles, scanning tables and shelves, making mental notes of what treasures lay scattered about as I made my way toward the Sci-Fi section. I’d barely began reading the synopsis of Summerlong by Peter S. Beagle when I sensed a disturbance settling uncomfortably around me.

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Image -Pinterest

I looked up to see a man quickly rounding the corner at the end of the aisle when it hit me. The smell. The god-awful, putrescent stench of whatever fowl food was decaying within his inner workings filled the air about me. My eyes began to burn. I held my breath lest it enter my lungs and spread throughout my respiratory system, making me quickly and surely dead within a matter of moments.

I fled as quickly as I could, taking what I thought would be refuge in Romance, but when I dared begin to fill my lungs with air I realized it wasn’t over. Weakened by lack of oxygen I thought I was done for, but the sheer will to survive gave me strength enough to continue. Teen Fiction was the next aisle over, I was sure I’d be safe there, I was wrong.

I-Could-Still-Smell-It.

I am fairly certain that man was in need of medical attention.

img_0992I heard rumblings from Fiction and Literature and sure enough, there were other survivors, huddled together for comfort.

From there, I quickly made my way to the Starbucks Cafe at the opposite end of the store where my husband sat, flipping through a magazine while sipping a venti iced coffee with half and half and classic sweetener.

I must have looked dreadful after my harrowing experience, but he was kind enough not to mention it. I told him what happened through gasping breaths. He raised one eyebrow, told me to stop being melodramatic, and went back to the latest issue of Hot Rod  magazine. If he’d been there, he wouldn’t have been so flippant about it.

Anyway, I composed myself and ventured back out into the stacks, keeping an eye out for that flatulent fiend, thankfully, I didn’t see him. He must have fled the scene of the crime. He dropped that bomb and ran. Monster.

I made my way to the restroom for a bit of freshening up. Maybe img_0999I was being silly washing my face and my arms and my hands as thoroughly as I did, but I’d just been exposed to a toxic cloud of gas. I didn’t want to take any chances. Of course, all that running water made me need to pee. I waited for a stall to open. When one did, a little boy skipped out, followed by his mother.

When I shouldered the door open I was horrified. Pee. Everywhere. How? Why? Was mom watching videos on her fricking phone while her little angel was painting the place with piss?

Now, I raised three boys, I know what can happen in the restroom, but seriously?

I backed out and waited for the next one to open. A well dressed woman exited, her smile lulled me into a false sense of security. You know what I saw? Pee! Drips and dribbles of pee on the seat. What the hell? It wasn’t just one or two either, it was on each side and the back. Again, how? Why? You might be wondering how I know it was pee, you might be thinking it could have been spray from the flush. No. She clearly needs to up her water intake. It was grown-ass woman pee.

I decided to hold it.

img_1001Determined to enjoy what time I had left before my bladder forced an end to my bookstore day, I again composed myself and decided to head over to Biographies, I never made it that far. See,  the direction I was traveling took me past the children’s books, I wasn’t two steps in front of the entrance when I was body slammed by a runaway kid, who was followed by another runaway kid who was followed by an agitated mom who told me to watch where I was going.

Despite everything, I somehow managed to make it to the register with two books. My bladder held until a suitable restroom could be found. While it wasn’t the best bookstore day, it wasn’t the worst either. Actually, it was. It was the worst bookstore day ever and I think I’m deserving of a do-over.

A plea to my fellow humans . . .

If you can, please hold your farts until you’ve found a suitably airy and unoccupied space to release them. An empty aisle in a bookstore does not fit that criteria, the restroom will work, exiting the building will work. If possible, please refrain from eating gas inducing food items prior to entering a public space.

Thank you.

Moms, from one mom to another, for the love of all things not disgusting, please teach your young boys to aim. Toilets were designed with a great big hole filled with water, that is where the pee goes. If they do happen to miss, these things happen, please clean that nastiness up.

Thank you.

Ladies, I can’t believe I even have to ask, please stop dribbling piss on toilet seats. What are you even doing? Use the damn toilet seat protectors, hover if you must, but geez, don’t piss all over the seat and walk away. That’s just nasty.

Thank you.

Moms, I know kids can get rambunctious, especially in public, but if you can’t keep them from running and screaming and turning mischief into mayhem outside of your home, take them to the fricking park. Teach them to behave for goodness sake, I managed it, so can you.

Thank you.

 

 

 

 

They are always with me

Throwback Thursday . . . Words

The Qwiet Muse

Words

They are always there.

Constant companions

following whither I roam,

lending themselves

to use as I please,

offering their worth,

asking nothing of me.

They assist me to rise,

they sing me to sleep,

they catch up my tears,

and dry them for me.

When my voice

has gone silent,

they offer me theirs,

and when it’s too loud

they soften the sound.

I’ve pushed them away

I’ve cursed them be damned

and still . . .

they remain –

without hurt or disdain,

and still . . .

they remain –

to unburden my heart

and vanquish my pain.

They make music

from thoughts,

transform what I think,

spilling my dreams out,

painting visions in ink.

My constant companions,

my most faithful of friends,

they live and they breathe

with each word that I pen.

Crystal R. Cook

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