It Was Only A Little Nap--Yeesh!

Boy, did I hurt my neck.

And, it was all so innocent, too. What I would love to say is that it happened while I was participating in some extreme sport, something daring. But it didn't. In fact,  I was just...standing. That's all.  You know you are old when you can hurt your neck simply standing.

I blame the entire situation on the bee.

It entered my home uninvited, after all, and, there I stood ready to leave.  I didn't ask it to come in. Certainly, the screaming 9-year-old next to me did not enjoy its presence. It needed to leave.

"It's a BEE!" my younger son screamed, as if I didn't already know that. "What do I do? What do I do? What do I do?"

What was I to do? I'd lost the darned thing.

"Mama! A BEE! A BEE! A BEE!" he screamed like a girl.

With my phone and keys in one hand and the doorknob to the open door in the other, I raised my chin to look up to the ceiling just slightly, -ever-so-slightly, so that I could see that blessed bee, and then I felt a current of pain shoot from my neck down through both of my arms and into my hands that felt as though I had touched an active electrical wire, one that, afterward,  made brushing the surface of my skin feel like someone was scrubbing an open wound that stretched across it. One that numbed my fingers.

Darn it all, it was also one that landed me in an imaging unit at 6:45 this morning so that I could have an MRI to see what my old bones were doing to my poor nerves. My poor, fried nerves.

"You aren't claustrophobic, are you?" asked my technician, Jeff.

He was a man--a boy really--one that made me realize that I wasn't so young any more. I realized this because, despite the fact that my hair was pulled back into this cute little ponytail and that I was wearing skinny jeans, Jeff, this man-boy, looked like a baby to me. How could he be old enough to have gained the education needed to be my technician? I guarantee that he missed the entire 1980s. I guarantee it.

So Jeff, my new best friend, guided me to the throne where the imaging would take place, talking to me as I followed timidly behind. Dressed in an open hospital gown and strange footie socks, I felt exposed.  I kind of wanted my clothes back.

"This machine is very loud," he said while helping me onto the table and placing a set of soft earplugs into my ears. "Try not to get nervous. I'll place this ball into your hand so that you can squeeze it. That will keep you calm"

I looked at the machine, large and round. My perch completely prepared to be encapsulated in the impressive machinery.  "So, people really freak out in this thing?" I asked in response to his precautions.

"On a daily basis," my man-boy said.  "Please, don't worry.  I'll be here to talk to you. Squeeze the ball. Listen to my voice. You will get through it."

A ball? For comfort? Jeff's voice? For comfort?

Well, Jeff, okay. If you say so.  I was certainly out of my element.   He might have been a mere child in my eyes, but he had to have some training to be in this lab. I opted to listen to him.

Dutifully, I reclined into position. I lay still, and I looked around me as my throne moved me backwards into the machine. It was a small capsule, tight-fitting and round.  With the ear plugs in my ears, noise was muffled.

"Try not to move," I heard from...well, I don't know from where. It was my man-boy, Jeff. He had a secret connection into my capsule. He could talk to me, but I didn't know how.

He told me not to move.

That's right. I was lying down, inside that capsule of a machine, and I had been ordered to not move.

I had actually been ordered to lie down inside that machine, the machine that envelope me, that protected me from the chaos of life. And, there, I began to think, what would happen if my kids walked in right now?

Well, you all read it: Jeff said that I had to lie still. I had to be still. Inside this machine. If my kids walked into that room for some impossible reason, well, I'm sorry, it would simply not be my problem. Whatever plugs became unplugged and whatever machines became reprogrammed...whatever person became held hostage to a reptile monologue, whatever vacuum cleaner was suddenly pulled out from nowhere but was now running full tilt in the room...

...I'm sorry, that just would not be my problem. 'Cause at that point in time my man-boy Jeff  told me that I was not allowed to move within my  new cocoon. I had ear plugs in my ears. And, the test had started.

Loud? Did he say the test was loud? Would any of you say that this is loud?

I don't know. I mean, my man-boy Jeff ordered me to lie down inside of this machine. I was at his mercy. At the moment, I was not a mom. I was a patient told to lie still. I had ear plugs in my ears, and, well, this didn't seem too loud.

With at least 30 minutes on my hands, I did what any special needs mom in my slipper socks and hospital gown would do. I fell asleep. Yes. Yes I did.

This morning, I fell asleep while having an MRI.

"I'm sorry," there was Jeff's voice again, "but your arm just twitched. We'll have to do that test over again. It will take an additional ten minutes. I know it is very difficult to lie still."

Yes, Jeff. Yes it is. That is because I am falling asleep. What else is difficult is when your voice appears out of nowhere and interrupts that cycle.  Could you please try not to do that?

"Oh, dear, there was that twitch again," I heard from Jeff.  "I'm sure that you are nervous. We will need to add another ten minutes to the procedure and do this test again."

Drat. Another ten minutes due to my "nerves".

I frankly don't even remember the last test. I don't know if my arm twitched. I don't know if my friend Jeff finally gave up on me or not. I was out like a light in ear plugs, white noise and a place where nobody could touch me.

It might not be a traditional view of Utopia, but if it is one thing that special needs parents have learned is to adapt, adjust and find whatever works for the individual.

So, what's wrong with have a little shut-eye in an MRI machine?

I parted ways with Jeff, thanking him for his close attention to my well-being and happily switched into my street clothes. By the time I made my way into the parking lot of the imaging lab, the sun was bright in the sky. People were rushing about, anxious to start their days.

It was just a couple hours earlier that I, too, had started my day anxious to get to my destination. I had prepped our kitchen with our older son's lunch and snack bags, special food items and notes on how to cook for him. Medicines were prepared. I had notes everywhere--mornings in this house aren't for sissies.

I rushed into that imaging lab to beat the clock, and here I am refreshed from my secret nap. The clock doesn't seem to matter so much right now. If only it could be that way all the time.

I smiled and slowly walked to the car. Little Brother was waiting for me at home. We had a full day of home school today. Onward and Upward, my Friends!


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This entry was written in response to a word prompt issued by the Group Blogging Experience 2 (GBE2): If Only.

Visit Me On the AutismUp Website!

 Hello, everyone!

I'm a guest blogger on the AutismUp web page!! Woot!!!

AutismUp is an organization dedicated to enhancing the quality of life for those living with an autistic spectrum disorder in Rochester, N.Y. and its surrounding areas. Whether through social groups, interest groups, summer camps, sibling and family support groups and even continuing education, this organization actively strives to provide inclusion and learning opportunities to members of the autistic community.

My children have participated in programs provided by this organization, and I am so proud to have been invited to discuss life with my family on its blog.

Come check us out and see what this organization has to offer. Perhaps it can serve as a model for something similar in your area.

AutismUp

Half My Life Ago

Half my life ago.

Half my life ago, I was a college co-ed, a biology major, determined to graduate from medical school so that I could then foster greater care to those living in Third World countries.

Half my life ago, that was my lifelong dream.

Half my life ago, I knew that I had it inside of me to better the quality of life of a population that I had decided must live across the ocean from me.

Half my life ago, my vision did not include the care of people inside my own home.

I was barely twenty when I realized that I was not well suited for  pre-med course work. So, I changed paths, and, in doing so, I soon let go of my dream.

Half my life ago, I started down a different road, never imagining that I would find myself where I am today.

Mom to an eleven-year-old with severe autism, I look at our son and think that, half his life ago, he was not toilet trained.

Half his life ago, he was a three-year veteran of a 30-hour therapy work-week in an effort to bring him out of his world and into ours.

Half his life ago, he said with regularity less than ten words.

Growing up beside of him, with his ever-present smile and cheerful laughter was Little Brother. When I think of Little Brother, I remember that, half his life ago, my parents and I flew him across the country for surgery to reposition his left arm. That surgery was the journey of his young life.

Half his life ago, he had yet to be diagnosed with autism, but he spent his days alongside his older brother in therapy of his own.

Half his life ago, what became a normal childhood to him was a house with locks, windows with Plexiglas,  and chasing after his brother in public.

I have sat in the surgical recovery room for my children more times than I can count, and I have looked in the eyes of doctors while having difficult conversations about mental illness, dependent futures  and the question of what will their lives become when I die.

I have pinned my children down to administer medications, brush teeth and to keep them from violence.

Yet, as unexpected this path to parenting has been for me, I can't help but note that, while I'm sitting in the surgical recovery room,  I am sitting next to children.

When I am face-to-face with their many doctors, it is not lost on me that these rough conversations are about my children.

These are young lives.
  
This is their childhood. 

These will be their memories.

Half my life ago, when I quit following my dream because I thought I didn't have what it took to succeed, perhaps there was different course work I needed to learn in order to fulfill that dream in a different manner.

With hope, the quality of life that I am working to improve is that of my own sons.

Half my life ago, I had yet to learn that there is so much more to life than just me.

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This entry was written in response to a writing prompt issued by the Group Blogging Experience 2 (GBE2): Half My Life Ago.

Staring Off Into The Distance

His eyes always carried with them a far away look, as if he were lost, deep in thought.  I watched him, our older son. He was just two years old.  Oh, how much I watched him, wondering what it would take to free him from his trance.

Try as I may, I never could.

"I think he ate some gluten last night," I would offer visitors to our home by way of explanation for his actions. They would watch his far away gaze with dissecting eyes. Never did I chalk his behavior up to autism, although he was already diagnosed. Never, ever did I leave him alone to stare off into the distance.

His detached stare hurt.  I always offered some excuse.

"I hear the pollen count is very high today. Perhaps he has sinus pressure in his head," I would offer feebly.

I knew that he was in there. I knew it. I felt it. I had seen it during his moments of clarity and connectivity.  He was so smart. He was capable. He could do this. He could do everything the therapists were asking him to do and more.

He could sit.
He could attend.
He could answer to his name.
He could look us in the eyes.
He could talk.

He could do it...if he wanted to.

But, just when I thought he was about to do it, he'd turn his head and stare off to a distant land. Somewhere I did not know. Somewhere I could not reach.  My heart would fall. It must have broken a million times over in those days. For, each day I woke, positive that day would be the day--the day our son would break through his autism--and that day, as with every day, he would eventually turn his head and stare off to some unknown destination.

What did he see? What was he thinking? How I wished that some way, some how he could give me even the slightest clue as to what was drawing him away from us.

Years later and immune to his staring--was it better? I wasn't quite sure--I found myself left on single parent duty while my husband was out of town for work.  By day's end, I was happy to close the bedroom doors to each child's room knowing they were happy, comfortable and that I was heading to the quiet couch for some hard-earned relaxation.

Down the stairs and past the first floor powder room I walked, reaching in to turn off the light, when I was greeted with this lovely sight:

Touche, my Little Men. Touche.  And so it was, on the tiled floor of that downstairs bathroom, that I was reminded of a few things:  Flushed bubbles multiply, paper towels are useless, and, yippee, our respite worker had left for me his copy of "Temple Grandin",  the 2010 biopic about the famed autistic woman and how she first overcame her every day struggles to earn her education.

Not one to enjoy immersing my leisure time in autism, I usually preferred to stare blankly at the television, or at a spot on the wall when I found myself with free time on my hands.  Sometimes, I did nothing in particular at all. At the end of my day, I had often felt as though I had witnessed a war of sorts, and reliving that war during my recovery period was not my idea of fun.

So, why did I do it? I don't know. Curiosity propelled me to turn it on, I suppose.

Seated on my couch, my dog on one side and a glass of wine in my hand, I settled into the movie, unsure of whether I could truly last until the very end. Struggle. How could I watch yet another person with autism struggle to live in a world where everything around her is so very offensive?  That's when I saw it.  The blank stare.

The scene showed a young Temple Grandin, staring off to an unknown place. I knew that look. I knew that child. As I watched the movie, I saw in place of the young girl my own son, and I started to understand.

The sun bouncing off of a piece of glass.
Dust particles floating through the air.
The hum of the family computer.
The swooshing of water running in the dishwasher.

Even when we all think that the world around us is still, all is not still--not to the autistic mind. As I watched what I already thought I knew, I became hyper-aware of all that I took for granted. Every sight, sound, touch, and smell that I move on from without a second thought. Things that could stop our     son in tracks.

"Perhaps his stomach hurts and he can't tell us? It is so hard to concentrate on speech when there is stomach pain," I had suggested on more than one occasion during that time.  How little I actually knew about the one thing I thought I knew the most.

The next morning I rushed about to wake, medicate, feed and dress him in time for his morning bus.  Pre-teens are so apathetic to the bus deadline in the morning.  Mamamommy was pressed for time. It felt as though I pushed, prodded, ordered and flat-out demanded of him the entire time we spent together before I was to walk him out of our front door.

Frankly, I prefer to start his day on a friendlier note.

However, this day needed some pushing, and once I finally got him down the stairs and I heard his bus back into our driveway I could taste the Finish Line. We were just about there.

"Come on, Buddy!" I begged him when he dug in his heels at the threshold of our doorway.  There he stood, looking into the driveway where the bus sat. He was in no hurry to move. His slow gear was frustrating to me. I simply wanted to get this process going, but, just as I was ready to scold him, something caught my attention out of the corner of my eye.

The red flashing light of the bus right above its  'Stop' sign was flashing.  I took in the environment a little longer and noticed that the bus was beeping to warn to those around it of walking students.  The exhaust was terribly loud, and, in the background of all this was the sound of morning traffic.

There was a lot to take in, and that was when I noticed that I, too, was staring off as if to a distant land, right there along with our son. However, I now realize that the land wasn't that distant at all. It was the same land that everyone else shared.  We were just viewing it through a different, more detailed lens.

That morning, I gave our son a little extra time to allow for that viewing, and then together we walked to his bus before he climbed on and made his way to school.

This Post Might Make You Lose Your Cookies: Autism and Getting Sick

"UUUhhhhhhhh! Mamamaaaaa! I'm gonna throw up!" our younger son said to me yesterday between fits of gagging. He was sick.

"Honey," I said to him calmly, "you already are throwing up.  Getting more anxious will just make you feel worse. Let it go."

We were in the family room of our home with our heads hanging over a trash can, and this child was on the cusp of an anxiety attack.  Parents hate when their children are sick, it's true. Me? I absolutely dread it when our kids are sick, not just because of their general discomfort but also for the added discomfort that comes along with the sensory dysfunction and communication gaps courtesy of autism.

Little Brother has sensory aversions to the textures of things that he puts in his mouth. He won't eat mashed potatoes. He's the only child I know that won't eat macaroni and cheese. Forget about spaghetti and don't you even think about putting sauce on his pizza.

Oh, and, by the way, vomit makes him vomit.

"But what if I puke and the puke makes me puke moo-oore?" he whined to me. "I can't. I just can't handle it."

"Just breathe, Honey," I told him.  "There is only so much puke a stomach can hold."

I personally do not understand these kinds of anxiety attacks. I do not worry to this degree; however, what I do know is the manner in which a thought can strike pure fear in our child, take hold of him and render him crippled in a shockingly short amount of time.  While he hovered above the trash can, my goal was to talk him down from that proverbial ledge.  The last thing we needed was for him to be puking and freaking out. The potential of that situation was downright ghastly.

 I started to have flashbacks to just two weeks prior to when he had a respiratory virus, the only other time this season that he was sick.

"Ewww!" he said with dread. "You aren't going to give me that colored medicine, are you? I hate that medicine. I don't like it. I don't want to take it. I don't."

Unfortunately, that time, I wasn't as quick to understand him as I was yesterday.

"Tough," I told him. "You need it. You're taking it. End of discussion."

"Uhhhhh," he whined.

I hated that. I just hated that. It made me go into drill sergeant mode. No kid of mine was going to wear his pants up and into his armpits whining about the taste of a cap full of medicine.

"Open your mouth and knock it back!" I told him.

He's such a good kid. Really. He really is. He's a people pleaser, which tends to increase his anxiety all the more because he doesn't want to make his true feelings known for fear that he will upset someone. So, as he was ordered, he "knocked it back". And, in a matter of a minute, he promptly barfed it all over his shirt.

I guess I should also mention that our younger son has sensory aversions to strong tastes, and, for the most part, by "strong" I mean anything other than bland. If he food has even a speckle or two of black pepper in it, he has to grab a large glass of water to drink, and he will force it down, fanning his mouth as though he had swallowed a mouthful of Habaneros.

When he vomited that medicine back upon himself, my instinct was shock and frustration. I shouted his name. I asked why he did that. I took off his shirt and directed him to the bathroom where he could promptly clean himself. And, while he was there, I had a moment to reflect, and I realized, geez, it isn't as thought the child wanted to vomit. He had a genuine problem, and the one person who is supposed to be there for him the most just criticized him.

Why did I lose my patience?

When he returned, I apologized to him, explaining that I didn't think about his sensory needs. "But, you kind of yelled," he said. "You acted frustrated and asked why I did that." He looked embarrassed. I felt horrible. No matter how many times I understand it and say it, the fact still remains that my brain is not autistic. I do not instinctively think the way that an autist would.

The challenge for me was to reduce my response time between reacting with my own instincts and adjusting those instincts to allow for what I understand about my children's needs.

"The problem was not yours," I told him. "The problem was mine. It was my fault that I didn't think about the fact that strong tastes truly bother you. I thought that you were being wimpy."

This felt good. It felt right. Yes. I was feeling enlightened. Yet, as I turned to find another form of medicine to ease our son's congested lungs, I saw him standing, just standing there, beside me with a look on his face as if he were in an unfamiliar building with no idea of what direction to take.

He looked at me the way people looked at him.

Son of a gun! My thinking was as foreign to him as his was to me! As the idea washed over me, I just wanted to scoop up our child and hug him. I felt so sorry for the sea of uncertainty in which he must swim nearly all day long. No wonder he wanted to become lost in his legos. Legos are easy to figure out. People, well, that's a completely different story.

I didn't hug him. He doesn't much like that. But I did explain to him that I did not have autism. I did explain to him that my brain does not think like his and that I do not have the sensory aversions that he has. He needed to learn not only how his brain worked but how my brain worked also, because, ultimately, this would be the only way he would learn to navigate society as a grown man.

Sometimes I look at these kids and think, goodness, they have a lot to learn still. Then, I think, goodness, I'm the one who has to teach them! Sigh. It's a steep, daunting learning curve.

"So, Mama?" he asked me later after we'd gone back to our normal routine. He was settled on his sick bed watching television. "Since you don't have the sensory problems that I do, does that mean that the feeling of barf doesn't make you barf?"

"Oh, no!" I said. "I totally agree with you on that one, Buddy. Barf is completely barfy."

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TV On. TV Off. TV On. TV Off.

Many years ago, I sat in the small blue room that was once our family room.  Far from spacious, the room felt even smaller due to the presence of large plastic toys that were scattered about.

We had two toddlers in the house.

Little Brother was approaching three, and we had yet to discover signs of autism in him.  Chatty and agreeable, his head covered with golden curls, he seemed to enjoy the constant buzz of therapy in our home.  At that time, Big Brother was not quite five.  It had been nearly three years since he had been diagnosed with autism and entered the state's Early Intervention program.  Yet, despite our tireless efforts with him all day long, day in and day out, his autism had only blossomed as he had grown.

In our small family room on that bright, sunny afternoon, both of our sons were conducting full-blown tantrums.  It was summer "vacation" time, you see.  There was not a therapist in sight.  I was alone without my support system, and our two children were having nuclear melt-downs all because of the darned television.

That dreaded thing.  As a parent, I had such a love/hate relationship with it.

On the most basic level, our older son required so much from us.  He moved simply all day long.  He slept but three hours a night, a period of time that was broken down into twenty-minute cat naps.  By sunrise each day, he was awake and ready to leave the house.  He wanted to move.  He wanted out.  He wanted to go, go, GO!

I did not know that he was in flight mode, scared by sensory overload, afraid of absolutely everything around him.  I just knew that he never stopped moving, never stopped crying and never failed to vomit his food onto every outfit that I wore.

You bet I turned to the television for help.

I didn't care if the programming was aimed to build his brain cells or to suck them out, I would have played anything on that television that caught his attention.  I would have played it continually, so that I could have sat down on the couch.  I probably would have had a good long cry and then slept for as long as I dared.  No, I'm not one bit ashamed to admit that I yearned to find eye candy for my son from the Old Boob Tube in those days. I wanted a visual babysitter.

Alas, I did not get it.

We purchased a library of entertainment DVDs in an attempt to foster his interest in television.  And, when he began therapy, we even purchased sign language and vocabulary DVDs--anything to help move his development along.  Nothing seemed to grab his attention. In fact, we couldn't even get him to stay in the same room with the TV.

Soon, Little Brother developed into his own person, and, well, it seemed that he actually did not mind the television so much.  Television made him smile.  I found that to be simply adorable.  He would laugh at the characters on the TV, dance around the room in delight and interact with the program.  To have a child in our household delight in television was a novel experience--both for that child and for his parents.

We wanted to preserve that experience for him; however, that was not so easy.  Because, as our younger son chose a favorite program or two to watch, television became a power struggle:

Little Brother turned it on and smiled.
Big Brother walked into the room, detached from us all and turned it off.
Little Brother yelled, turned the TV on and then smiled.
Big brother clicked it quickly off without a word and left the room.
Little Brother cried big, fat tears as I turned the TV on.
Big Brother returned to the room, turned off the TV and walked back out of the room.

"Mister (using all of his names), your brother is allowed to watch TV!!" I scolded our older son.  "You do not own everything in this home!"

Yet, as soon as I would turn on the television, he would mechanically walk back in, pushing a favored toy vacuum, never making eye contact, and he would turn off that TV.

"You know," one of his therapists told me when I complained about the situation, "he could be having an auditory sensory aversion to the frequency of that TV set."

What?

That's when it hit me:  The dishwasher.  The microwave.  The baby monitors that we used in the upstairs bedrooms. The hairdryers. The laundry machines and countless other household items.  He turned all of them off as well.  She was right.

I walked into the family room and turned on our television set.  To me, it sounded like any normal TV. There was no offensive static.  No ringing.  No extraneous hum.  Nothing.  Whatever he heard from it that was so bothersome was lost on me, and, I then realized just how much about autism, also, was lost on me.  In those early days, the learning curve was large, and I felt the responsibility of every last bit of it.

One could never understand, truly, how many sensory offensive sounds there are in this world until one has to try to desensitize her autistic child to them.  Every sound was a battle.


This is how I found myself in the small blue family room of our home that sunny day during summer "vacation" when both of the boys were throwing tantrums over the television set.  I was told to work on desensitizing our older son to the sounds that offended him around the home.  He needed to learn to live and cope with these sounds so that he could better live in our world.  And, the first battle, on behalf of Little Brother, was the television, so that Little Brother could enjoy the  right to watch a television program in peace.

We sat there during summer "vacation", and we started slowly. For two minutes the TV would be on. Then, for two minutes the TV would be off.  Two minutes on.  Two minutes off.  When this routine became predictable and comfortable to both, I would slowly increase the intervals.

My hope was that, soon, Little Brother would be watching his program.

On Monday, they cried at two minutes.
On Tuesday, they cried at two minutes.
On Wednesday, they cried at two minutes.
On Thursday, they were still crying at two minutes.
And here we were on Friday, and they were still crying at two-minute intervals.  No progress.

They were having full-blown tantrums every time the timer sounded and I changed the status of the television.  There was no therapist in sight to help me, and I was ready to lie down on the floor and tantrum along with them.

One child wanted the TV.  One child could not tolerate the TV no matter where in the house he stood.  I wondered how a family with autism ever functioned in the world with out going completely insane? We seemingly could not even learn even the most basic of things.

Today, I look back on those times with greater understanding. The first is that I was dealing with not one but two children with autism. Processing, aversions and transition difficulty ran abound on levels  that I did not even understand at the time; however, beyond that, I am now able to appreciate the journey at this stage on our path.

And it took so long!

Who knew that some people with autism have to learn to appreciate a television set? So long ago, I surely did not!  Our older son did. Just as we had to teach him to tolerate tooth brushing and haircuts and how we are still teaching him to keep his clothes on if they get wet.

The journey is long, and too many times along the way I have wanted to lie down along the path with my tantruming kids and forget about it all. The early days are the hardest for this reason.  For my family, nearly twelve years into life with autism, time has been on our side.  Now, every once in a while, I am able to look back and appreciate how far we have come.


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This entry was written in response to the writing prompt, "Television", issued by the Group Blogging Experience  2 (GBE2).

The Top Five "Big-O" Moments In Our Home

Tsk. Tsk. That naughty blogging group of mine!  It's topic week #100, and members have been challenged to be open with the world about personal experiences with "The Big-O".

Well...my goodness.

However, since it is week #100, a milestone for the group, I have accepted the challenge and will boldly admit to this:  My husband was out of town for four days this past weekend, and I experienced many "Big-O" moments.

In fact, "Big-O" moments happen to me all the time.  Most memorable moments in our house involve a "Big-O" moment.  I do believe that I can make a short list.  Giggle.


                                          The Top Five "Big-O" Moments In Our House


5.  Ornery

He who does not think that 'ornery' can rise to the level of a "Big-O" moment has not known the intense orneriness that comes from the active mind of a mentally intact, nonverbal autistic child. Our older son's orneriness can elevate the chaos in our lives in the blink of an eye.

Older Son:  Hm.  I don't really feel like bolting here in the mall, but...I'm kinda bored.  Let's have some fun with the talking non-autistic people.  I think that I'll run a few steps just to flip them out on 3...2...1..GO!  Snicker.  Should I really get them going and go out of sight and around a corner?

Older Son:  Attic.  Must unscrew every bolt to the attic stairs/ceiling fan/"obstructive" pieces of plywood that parents thought would keep me out of that wondrously, fascinating attic!

Older Son:  See this thing that turns on the light?  It's WAY FUN to unscrew all of them from every lamp in the house just before dusk!


4a. Oh No!

The first sign of trouble.  That first reaction to the realization that the climate around us is about to take a sharp turn.

The Whoosh! that is the flushing of the upstairs toilet.  OH NO! Older son has made a solo trip to the bathroom! His aim is not so great right now.  Has he urinated on the wall?

Older Son:  See this?  It is the Best toy in the world EVER!

This is where it is positioned on his bedroom rug. Always.  That is, of course, unless his bedroom floor is messy, or there is chaos, or someone is rushed or otherwise careless.  Then, the vacuum could be bumped.  Then, it could end up positioned here:

Or, here:

Or, here:

Gasp! OH NO! Whoever kicked it is surely thinking of this "Big-O" phrase, and I guarantee that our Big Guy is thinking of it also.  Up he will spring from bed as he settled into a string of OCD rituals aimed to moving the loving vacuum back to its precisely rightful spot on that carpet.  Back.  Forth.  Side.  Center.  Side.  Center.  Step away to observe.  Cock head.  Repeat a million painful times.

4b. OM(God)(Goodness)!

Take a pick based upon your own belief system.  I'm at the point where I'll admit to not being squeaky clean under stress.

Used when pressure settles in, sometimes laced with a dose of shock.

For example, upon examining the upstairs bathroom after hearing the Whoosh! of the flushing toilet, I learned that, yes, our son did, in fact urinate on the walls behind the commode...and the ones beside the commode...and the curtains...as well as the cabinet and sink behind him.  I guess the urine formed a nice big puddle on the floor in which he stood before leaving the room.  Across the bathroom floor and down the hallway carpet leading to the room was a trail of wet footprints.   OMG!!

4c. Oh Shazam!

Only, it isn't "Shazam" that I say.  I'll admit to it.  I'm human.  I have flaws, and one flaw happens to take the form of a potty mouth when the pressure of special needs in this house becomes intense.

I realized my problem when my older son learned to say...ahem..."Shazam"...before he learned to call me "Mamamommy".  He said it on the school bus.  Cringe.

3.  Octopus, Opossum, Osprey, Orangutan, Orca, Otter, Owl and Oyster.

I just asked our nine-year-old son to name every animal he could that started with the letter "O".  This was his list.  How could you do?

He additionally started spewing facts about various mating seasons, animal classifications, habitations, natural known predators and, frankly, I can't say what else.  By this point, #4b kicked in, and my left eyelid started to twitch.

His brain is at once lovely and relentless.

2.  Ouch!

Autism and gastric pain.  It often goes hand-in-hand.  Our older son does not know what it is like to live a day without pain, and it saddens me.

1. Oh Shazam! Part II

Absolutely, how I am spending most of my "Big-O" moments these days, because when our older son turned 11 years old, he decided to avoid using the toilet when going #2 as much as he possibly could.

'Nuff said.


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This entry was written in response to a word prompt issued by the Group Blogging Experience 2 (GBE2).

Celebrating my name in print: Chicken Soup for the Soul, autism-style

It was a crisp winter day in upstate New York, and I emerged from my salon feeling like a new woman. I was as close to looking like a supermodel as I was going to get, and I yearned for a destination. I needed somewhere to go, somewhere to swoosh my hair and to walk with a spring in my step.  After all, I'd just had two hours out of my house.

Away from my kids.

:)

I listened to hip music.

I drank a cocktail.

:)

I wore high heel shoes.

Suffice it to say, I was feeling anything but a special needs mom, and it was simply wonderful!!!

I unlocked my car door, slipped into the driver's seat and simply sat. The keys to the car remained in my lap, and I drank in the silence. Oh, how I longed to go somewhere, anywhere; however, I simply couldn't. My time was up. I was expected at home.  Who knew what condition that house would be in when I returned?!

Just then, my phone sounded. I had received a text from home which read, "There is a large box waiting here for you from the publishers of Chicken Soup for the Soul."

Gasp!  EEEEEKKKKKKK!

The advance copies of the Chicken Soup for the Soul: Raising Kids on the Spectrum had arrived!!!  Suddenly, there was nowhere I wanted to be that moment other than in my home, and I raced there with great anticipation.  You can sure bet I had that spring in my step as I approached my house and placed my hand on that doorknob to our kitchen door. Turning the knob, I flung open that door and bound into the house, ready to tear into that box and celebrate this long-awaited day--the day I would first see my name in print!

But, it didn't happen that way at all.

I opened the door and was assaulted by the sound of my older son screaming in pain and anger from the downstairs bathroom. Our younger son was acting like a spastic animal playfully beating on a respite worker, and, somewhere in this auditory chaos I could also hear sounds of frustration from my husband, who was trying to work with our older son, who is notorious for withholding his bowel movements.

Bye-bye newly minted author. So long supermodel. Hello special needs mom.

I figured the respite worker could hold his own with our younger son, so I charged to the bathroom to find our older son naked and hovering over the toilet. Daddy needed a break--believe me, we all do at one point or another. I tagged him out, bent to my knees in order to be on eye level with our son so that I could better communicate with him. As soon as I did, I felt something squish between my bare toes.

Mama had knelt into a pile of poo that was now on the knees of my (dry clean only) pants--pants that only supermodels wear on salon days.  Said poo was now globbed in a mess that ran from my knee down to the tips of my feet. Super! Just super!  I'll also add that once the damage was done, I didn't scream or get up. That's the hallmark of parenting special needs style. Yep. I stayed in the pile of poo to attend to our child, who was still hovering over the toilet and screaming.   Happy Advance Book Day to me!

Turning my attention to our older son, I saw that the pile of poo had apparently traveled because he seemed to have sat in it. Our naked child had it all over his bum and legs. In fact, he, too, had stepped in it. Good gracious, if the toileting job had not been completed by this point, it wasn't about to be from where things stood. I decided clean us both and abandon the effort.  Toileting is a tough process lately in this house. I judged no one, but I also knew a failed situation when I saw one. Time to move forward.

"It's okay, Buddy," I soothed him.  "This whole thing was a disaster, wasn't it?" I hoped that the tone of my voice would calm him, but it didn't. As soon as he was clean. He stormed out of that bathroom, crying, and began to pace around the downstairs indignantly.

I remained behind with all the bleach products I could gather.

Once I had finished cleaning, I walked out of the bathroom, smelling of bleached hands, soapy feet and poo-stained knees.  Our older son was pacing and screaming, pacing and screaming. Was something more bothering him than a bruised ego? Was he in pain? I studied him.

"Don't worry about him," my husband told me. "Let the respite worker deal with it for the moment. Let's look at your books."

The books! Yes! Let's celebrate the books!!! We walked into the kitchen, and I heard, "Mama? Can you make me some food?" Ugh. Our younger son's medication had him always thinking of food. What could I fix him that was healthy? What could I make?

"Not now," my husband said to him. His voice interrupted my thoughts.  "Mom's books are here."

"Her books are here?!" our younger son asked. "I want to see! I want to see! I wanttoseeIwanttoseeIwanttoseeIwanttosee!!!"

He was all hands. Having no concept of personal space, he was up in my space grabbing where I grabbed, spewing words up my nose as loudly as he could. All the while, in the background, our older son cried and paced, cried and paced.

I finally released the packing tape on the outside of the box and found my way to the stack of books inside.  Our younger son reached for his first, but then my fingers touched one of my own. They were simply beautiful.

"Where's your name? How do you spell your name? I don't see it? Where is it? Where can I find it? Where? Where? Where?" our younger son was screaming below me. My husband worked with him while I opened to the Table of Contents.

However, before I found them, our younger son grabbed the book from my hands and asked to see the name of my entries. I smiled and decided to give into his excitement. There would be time for quiet contemplation later.

"Let's take pictures!" my husband suggested.

Oh my, I thought, remembering what I had been doing just minutes before. Yet beside me, our younger son was already posing and saying, "Cheese." Sigh. I asked my husband to please take pictures from the waist up.

So, here we are, our younger son and his mom with poo on her pants. With imagination, one can hear the sounds of our older son, pacing and screaming in the room to the left, angry about a failed toileting session.  It was a celebration special needs style, 'cause we don't roll any other way.

Escape

Our older son learned how to stand when he was seven months old. He walked three months later.  By one year of age, he was bolting at a full sprint into moving traffic. My child. My baby who did not answer to his name.

He was completely oblivious to the safety risks present in the world around him, preferring to play in windows rather than with toys, making a game out of getting the car door open while the vehicle was moving on the interstate.   My husband and I lived in a constant state of fear, ready to spring into action at a moment's notice should he fall, should he cut himself or should he escape.

He was five years old when he first escaped from our home.

Barefoot and armed only with his security blankets and a plush Barnie, he left our home, and we didn't even know it.  Earlier that day, we were in our car, returning to our house after running a typical Saturday morning errand.

"Mall," he said.

"No, Buddy," I told him.  "Not now. Lunch."

"Mall," he repeated.

"No," I firmly countered.  "Lunch time."

"Mall," he continued.

"Lunch first, then mall," I told him.  End of story, my little man!

He started to whine in protest, but I didn't care.  After all, I wasn't saying he could never go.  I was merely saying not now.  Our son had very little language at the time.  A tense discourse on the matter was out of the question, yet as his protests grew, the closer we came to our house, his feelings on the matter were quite clear to me.  He didn't need language to tell me that he was angry.  I didn't need the two-way conversation to say that, too bad, he'd have to wait until after lunch.

That's what I thought, anyway.

By the time we entered the house, our big guy was red-faced and crying.  I was immune to the tears and intent on finding a mental happy place as I set about making lunch.  The sooner we ate the sooner I'd get him to the mall, and we'd all be happy.

I locked the kitchen door, a dead bolt lock which we had installed up at the top of the door frame out of our son's immediate reach.  It was the newest in a progression of locks that we had placed on the doors of our house to keep him inside and safe.  After all, our guy was a bolter.  He was smart. He enjoyed locks ever-so-much, and he enjoyed beating those locks even more.

As I prepared the food in the kitchen, I could hear him screaming upstairs.  The screaming.  For some reason or another, this child had screamed simply so much in his lifetime.  And, frankly, the more I got to understand him and his autism--his sensory pain, his gastric pain, his trouble forming words and moving his body in general, his comorbid anxiety and depression as well--really, I couldn't blame him for the screaming.

I just wish that I could help him.  How could I help him?

I spent every waking minute of every day trying to figure out how I could help this child.  His brother, two years younger and born with a paralyzed arm due to a brachial plexus injury at birth, required therapy of his own.  Brother often took a back seat to autism.  Little did I know that it wouldn't be very long before he would receive a diagnosis as well.

Just how did we find ourselves here, and what could I do to crate some semblance of a joyful childhood for our two boys?

As I mulled over these thoughts and put the final touches on the lunch preparations, I realized that our older son's crying had stopped.  I felt relief that the tantrum was over; however, in the next moment, I realized that it was just too quiet.  Although he had very little language, our son actually made a good deal of noise, and at that moment, our house was dead silent.

I bolted toward his bedroom but didn't have to go far. For, as soon as I reached the front hallway, I saw that he had somehow reached the lock at the top of the door frame, beaten it for the first time.  Out the door he went, leaving it wide open for us to find.

He was gone.

He not only had a head start on us, he was simply GONE.  Our child who couldn't speak.  Our child who wouldn't look before crossing the road.  That child had run out the door, and I could not find him.

I don't think that I had ever felt true panic before then.

Fearing the worst, I screamed for my husband at the top of my voice and told him that our son had run out the door.  I had no idea how long he'd been gone.  I had no idea in what direction he ran.  I did not know where he was!!!

The fear of losing your child is greater than losing your own life.  The fear of losing your nonverbal, autistic child because you simply could not lock the doors enough, lock the windows enough, lock the car or garage or ANYTHING enough was unbearable.

My husband ran.  He simply ran.  He picked a direction and ran faster than I'd ever seen him run.  I grabbed our preschooler, tossed him into the van and set out in the opposite direction of my husband.  We lived on a main road.  I was scared.

"But, where is he?" our younger son asked innocently, not fully understanding the crazy life into which he'd been born.

"I don't know, honey," I said to him.  "Can you help me find him?  Tell me if you see your brother out the window!"  I requested of him.  My voice caught in my throat as I choked back a sob.  No mother should ever have to ask her three-year-old to help locate his older brother on the street.

I rolled down all the windows and started shouting his name.  I don't know why.  It wasn't as though he'd answer.  If he were about to run into the street, he would not stop if he heard my voice.  Still, I called out to him.

Then, I hear it.  It was my husband calling my name. He'd found him!

Thank you! Thank you Dear God!!! I started to sob.

Circling the streets, I finally came upon them, father and son, both with their heads hung low.  Our son, barefoot and with his blankies and Barney, had decided that he could walk the few miles to get to the mall.  Forget us.  Forget our schedule and forget lunch.

The look on my husband's face was one of sad resignation.  Our son was sorry to be going back home. They both got into the car, buckled, and from the back seat I hear, "Mall."

"Mall," he said, as if this whole traumatic event had never happened.

I sighed and said, "Lunch first," knowing that on that day, our little family had turned a corner along this journey.


*******

April is autism awareness month.

The Making of a Godmother to Autism

I remember a day when I was seventeen--a lifetime ago now--when my parents called me out of the sanctuary of my teenage bedroom and asked me to join them downstairs. Join them. In the family room.

I was nervous.

What did I do? I didn't think I had done anything wrong. I was basically a good girl. Well, even good girls find trouble some of the time. However, on the whole, I was a good girl, darn it!

Dutifully, I went downstairs.

My parents sat very seriously in their chairs. I stood before them because I had no idea what else I was supposed to do.

"An exchange student is in need of a home, " my mother told me.  "Your father and I would like for her to live with us. But before we agree to do so, we wanted to ask how you felt about it."

Avid Rotarians, my parents had always participated in the student exchange program. We housed many during my formative years. The exposure was normal to me and yet always felt a bit awkward.

I thought exchange students were dorks.

That year, my father was participating as the district governor, the highest position of office one can take within a given Rotary district.  If there were any programs that demonstrated needs, he was sure to hear about it.

Enter Hanna Suomalainin from Lohja, Finland.

Hanna needed a home, and my parents wanted to give her ours. It was my senior year in high school. It was supposed to be the best year of my life. Soon, I would be on an airplane myself to spend a year as an exchange student in Australia. Did I really have to spend my last few months in high school with an exchange student in tow?

Forever a people pleaser, I told my parents that I did not mind. Sure, another exchange student would be fine. It was all fine. I was FINE.

I was also a big, fat liar.

"Man! My parents just told me that we have to get an exchange student!" I complained to my BFF at the time.I had run to my room to call her as soon as the conversation with my parents was finished.

"Aw, man!" my friend responded.  "She doesn't have to hang out with us or anything, does she?"

We grumbled about our teenage angst for a while, and then I hung up the phone. I'll mix no words. All I could think was that this was going to suck.

Hanna came to our house looking shy and defeated. Her head hang low, and she didn't smile much. It was obvious that she was not enjoying her exchange. I wondered if she missed her home.

It was a genuine feeling of sympathy that I felt for her, but it was short-lived.  As soon as I could, I excused myself to my room. The youngest of four children, I was enjoying the absence of my siblings, who were in college or living and working away from home. The upstairs of the house was my domain. I had even lost the art of closing my bedroom door for privacy.

Enter once again Hanna Suomalainin from Lohja, Finland.

She just walked right into my room. What the heck? She walked right in and started talking. Phhht. This was small town America. People our age didn't really DO that sort of thing. I thought she was being awfully bold.

She walked into my bedroom that night, and in retrospect, that was the day that she officially walked into my life.  She opened my eyes to the world, and, most importantly, she believed in me. She liked me. She didn't judge me. She encouraged and supported me.

We spent our days in cold hard labor: aerobics and lying out by the pool at the Country Club. By night, we would enjoy the countless parties that high school seniors enjoy as they are about to embark on the world.

Those were the days of wine coolers, talking about boys and sneaking out on the roof of my home so that she could teach me to smoke (an experiment that did not stick with me but felt rebellious and fun).

 In a matter of weeks, Hanna Suomalainen from Lohja, Finland,  had become the most important person to me in the world. She had transformed me (I lost 30-40 pounds thanks to her support), and she had transformed my life.

When Hanna returned to Finland, my heart broke. To this day, I can say that I was more heartbroken over that than I had been by the breakup of any boyfriend in my youth. It was the day that I felt as though I had lost my sister.

Less than a month later, I was on an airplane, embarking on my year of Rotary Youth Exchange to Surfer's Paradise, Australia,  thus beginning my long distance relationship with the best friend I had ever known.

During the next ten years, we wrote to each other faithfully. Those were the days before e-mail. Before Facebook. All we had were pencils and air mail paper.
We wrote about school, life, casual boyfriends and serious boyfriends. There was even a moral discussion or two regarding what each thought officially constituted "cheating" on those boyfriends. (Oh, my!)

We talked about our wine coolers. We talked about parties. We talked about our philosophies on life. Always, we were plotting the next trip for us to see one another. Quickly, we grew up. The cursing and the partying died down. We experienced the divorce of her parents, death of various family members, weddings, pregnancies and life as mothers.

Autism entered my life painfully. And, while over the years I have learned the beauty that comes along with the disorder, I also experienced great pain to see both of my children become debilitated and disabled in life.  They are fantastic kids with bright futures, but, in the beginning, I couldn't see the future. All I saw were the young and untamed behaviors of two little boys. What would be her role as a Godmother to our older son?  I didn't even know what the autism rate was in Finland. Would she understand any of this--really, really understand?  How can it be that someone who was born and reared in another country with such a vastly different life from ours relate to a life of special needs?

 As it turned out, I know that I could not have made a better choice.

 Just last week as  Hanna and I were texting each other when she said something that made me pause and think, truly, how many stages of life this friendship has seen!

There must be a book in this.

 An accomplished writer, herself, Hanna has just published a wildly successful BOOK in Finland on becoming the caretaker for her father the summer his life succomed to Alzheimer's.  She has a web page that can be found HERE.  This link to her blog displays a discussion on our friendship.
The text for all of this is in Finnish but can be plugged into any translating program (i.e. Google Translate) for a rough interpretation.

That's when I remembered it.

In my basement, I had a box that contained memories of my youth, and in that box was a notebook of every letter Hanna had written to me. The letters are dated from 1988-1995.  After that, e-mail became available to both of us. I have a couple letters in 1996 and our first few e-mails.

I ran down after our conversation and retrieved that folder.  Hanna did not know about it.

Is there a book in this? We think so. She suggested that we each post to our blogs about it; however, I'm feeling terribly inadequate. Her web page got 25,000 hits last month.  The Mom Cave gets 3,000 hits a month. Compared to us here in the Cave, she's a total rock star.

To me, she always has been.

Those letters are a look into her youth. She's not so sure about reading them. I've read them, and I have laughed until I cried.  And, I also think of the special sort of individual who we, as parents,  choose--and they accept--to play an integral role in the lives of our special needs children.

Did I know that day  when Hanna Suomalainen boldly walked into my teenage bedroom that she would one day be that person? No. Of course not. But, even at that young age, her spirit was so bright that I knew I could never let it go.

Today, we are asking our faithful readers:  What do you think we should do with ten years of letters? 

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Hanna Suomalainen Jensen, her husband, and  their two daughters live in Helsinki, Finland.