Monday, December 7, 2015

A Change in Plans
formerly: Work

(Published by Chicken Soup for the Soul: Multitasking Moms Survival Guide)

Tell me, what is it you plan to do with your one wild and precious life? ~Mary Oliver
Winter had arrived in New York State. Outside, the chill in the air cut clear to the bone, and the fallen, neglected leaves across our lawn were now covered by a thin layer of snow.
Moving slowly after spending a sleepless night with our older son, I was thankful for the warmth of our house and the comfort of our large red sofa. Curled next to me was our younger son, home sick from school. He was not feeling so comfortable. Actually, he felt pretty crummy.
To distract him, I started a conversation about severe weather, his favorite thing in the world. I settled into the blankets and prepared for the endless stream of fact-sharing for which this child is known—barely a pause for a breath, just fact after fact after fact.
“So, what sort of work do you think you want to do when you get older?” I asked.
“I'm going to be a storm chaser,” he replied with a raspy voice. “Dad says I can start next year when I am ten.”
This was news to me. And, suddenly, instead of lying in wait for the merciless stream of weather information, I realized that we were actually starting to converse, albeit, about his upcoming plans... to chase storms... somewhere.
“Dad says we can start by chasing one or two storms in the summertime,” he continued. His eyes were round and bright.”
“Wait. You mean your dad is going with you?” I said, feeling more than a little rejected.
I didn’t make the cut for the imaginary trip to chase imaginary storms? I was hurt.
Fortunately for me, he sneezed me out of my moment of self-indulgence. My sick boy. I pulled a quilt around him in an effort to make him feel better. After all, it’s my job to make him feel better. That’s what I do. I’m mom. I’m the nurse, the scullery maid, the cook, laundress and caretaker of all things furry, slimy and swimming. I’m the drill sergeant, chauffeur, arbitrator and heavy hand.
In addition to all this, I’m also an autism mom.
Toilet training will perhaps be my lifetime job. And the mess in our bathrooms? Volcanic. I’m an advocate and a home schooler. Special diets, intestinal disorders, comorbid conditions—I’ve learned enough for a lifetime. Bowel movements. Did I imagine knowing, really, so very much about bowel movements? Really?
Now a mother of two children with autism, I have stopped amidst the chaos of the day and wondered: how did life bring me to this point?
“Where’s my employment contract?” I asked my husband one day. There was a time I had brainpower, you know. How had my life been reduced to this?
He just laughed it off. Only, truly, I wasn’t joking. I had plans for my life, after all. Yes, those plans did include children, but did they include special children? All the doctors? All the therapies? Frayed nerves? Diminished patience? Never, ever sleeping again?
That cold winter morning I sat next to my storm chaser on the sofa as he told me

of his summer plans, knowing full well that he expected me to be where I always was— where I have always been during his lifetime: at home, keeping those home fires burning. In his mind, while he and his dad are out chasing the great F5 tornado, I was to be in my rightful place, taking care of our older son, the house, the pets and all that comes along with family living.
That’s what I do.
I wonder, why didn’t he ask me to chase storms with him this summer? I could, you know... if I wanted to...
But, the truth is, I wouldn’t want to chase storms. First of all, I think you’d have to be a nut to chase storms. Our son is that kind of a nut. He loves storms. It is his passion.
My children are my passion.
It happened without my realizing, perhaps during one of the sleepless nights as I sat in my familiar spot at the top of the stairs in the hall, forcing our older son to stay in his room during the wee hours. Or, was it while cleaning the tenth, fiftieth or one- hundredth toileting accident, knowing that it was a sign of a child just not able to control his body?
Was it the first time our tantruming child hit me, and I realized it was a cry for help and not an act of anger?
I’m hopeless. Somewhere along the very path that will surely drive me to insanity, I have found my life’s work and my purpose.
Leaning over my sick child’s head, I gave him a kiss. He just taught me a lesson and didn’t know it.
“Yuck, Mama,” he said while wiping away any possible remnants of my affection. Too late. I knew I’d already made my mark.
~Amy McMunn Schindler 

Friday, August 23, 2013

The Friend

He had a new friend, and he wanted to invite him to our home.

A new friend.

Let's be honest.  It was perhaps the first or second friend my younger son could claim.  That was a direct result of  the type of autism he had, and it was the darndest thing.  With a casual glance or two, a person may not realize how deep, if at all, his issues ran. 

"Higher functioning" autism can be quite deceptive. 

In reality, he struggled in many areas, most notably in his attempts to make friends. He would like to have them, but he just did not know how do make them.  His best opening lines usually sounded something like, "Hey, I know everything there is to know about the mating period of the ancient Megaladon.  Do you?  Really, I could also tell you how most modern day sharks mate.  Do you wanna hear?"

That wasn't exactly a crowd pleaser.

He didn't understand how to approach people, not really.  He didn't pick up on social norms.  He stood in people's personal spaces and was even known to hiss and lick others as he pretended to be different animals.  Those weren't the kind of deficits that children easily forgave. 

So, when he recently became friends with a neighborhood boy, I was thrilled.  They seemed to bring out the best in one another.  They had common interests--Big Foot and bugs and things of that sort.  My son had a twinkle in his eyes that I didn't often see, and then, unexpectedly, he turned to me and said that he wanted to invite his new friend to our home.


Yes, I said to him.  Yes, of course he may come to our home.  I didn't hesitate to answer. However, after that, I just froze.  A friend.  In our home.  We didn't really do that.

It's just that, my older son never had friends.  Even at this stage in his life, at twelve years old,  he would sometimes react to other children in his small class,  but he didn't play with them.  He didn't walk over to them and motion for them to share with his toys.  He didn't motion for me to invite other children to our home.

No. That was not where Big Brother's interests lay.

It took years of work for him to get to the stage of even tolerating other children in the same room with him--other children, with their loud noises and unpredictable actions. I'm grateful that he can enjoy a moment or two with his peers. Thank you medication and maturity.

And so it has been left to my younger son to blaze the social trail in our home.  You know, the shark boy.  The licker.  The boy who is also school phobic and receiving his classes at home.   Our social calendar has had cobwebs on it for a little while.  We'd simply been tackling larger issues until, WHAMO, our family's social event of the year sneaked up and sucker punched me.  I barely had recovery time when I was forced to look into the excited eyes of my son, who was waiting for my answer.

Yes, I said to him.  Yes, your friend may certainly come to our home. No problem at all.

HOLY BLEEP!  My mind went into overdrive as it started going through the overwhelming list of problems that were naturally coupled with letting a non-family member through the threshold of our front door:  How bad is the pile of clean laundry that was in the living room?  How long will it take for me to tackle that mountain of dishes in the kitchen sink?  Were the dirty clothes still lying on the basement stairs, you know, that third stop on its long trek from our upstairs bathroom down to the basement laundry room?  Ohhhh, boy, that was when my cheeks burned as I realized that I really could not remember where I'd thrown my spare bra the night before while rejoicing at the realization that I could finally, finally--THANK YOU THERE IS INDEED MERCY IN THIS WORLD--finally go to sleep at the end of the long day.

There was no question. Our family was not fit for public.

Whatever. I would make it work.  Besides, they were boys.  Boys didn't care about things like dirty dishes when there were cool things sitting on the counter next to those dishes like tanks of tadpoles, fish and a gecko.

Yes, I said to him.  Yes, you may have a playdate.

Then I stopped myself.  At ten and twelve years of age, the boys wouldn't call it a 'playdate', right?  Good gosh!  This household had no idea how to have friends!

I couldn't remember the last time I brought my son and a friend over to our house to play--or to 'hang out'...or, whatever.  I was sure that it had been years--long enough ago that I had to facilitate.  But these boys weren't little.  My jumping into their space would be an insult.

So, when they got to the house, I hung back, at least a little bit.  When dealing with autism, it is never good to hang back too far.

I was not looking at them.
I was not looking at them.
I was not looking at them.

Who was I kidding?  I was totally looking at them. And, it seemed to be going okay. It really did.  They grabbed the tadpoles in our tank, and they held the gecko.  They checked out the giant snails that were slurping the algae on the sides of our fish tank. Once they moved to their favorite nature show to delight over the python barfing up its recently consumed chicken, I smugly admitted to myself that we absolutely had the coolest place in town.

I no longer needed to pretend not to look, I thought, because we rocked. We simply rocked, and this playdate, um, er, uh...this time to 'hang out'...was running itself.  And that was when I heard it.

"Hey, man," the friend said, "do you want to go outside?"

Outside? Ohhhhhhh. Thaaaaaaat.

Outside.  He meant that place on the other side of our kitchen door. The place with no air conditioning. Where the weeds grew. Where the neighbor boy thankfully mowed once a week.  That place.  Oh. Well. Nobody really went out there.

It was the land where nothing had worked. Motor planning had never worked. Help from therapists had never worked. My bright ideas to teach play had never worked. Our landscaping? Pffft. Never worked.  And, my dreams of watching my children run happily while having friends over during glamorous cook outs, well, those had never worked.

I watched the two new friends as they walked outside to that land where things never worked, and they stood, unsure of themselves in their bodies,  their new friendship and that strange environment. They opted for two tire swings that I had mounted myself from the massive maple that stood near my kitchen window. I was sure it would see years of summer fun from my boys.

I didn't know that vestibular sensory systems would render those tire swings virtually unused.

Soon, Friend jumped down from the swing and looked around. From the kitchen window, I looked with him. My eyes became those of a twelve-year-old boy's, and I mentally wandered the yard with him past the quiet see-saw and the small jungle gym, beyond the sandbox with plastic animals. There was a smattering of punctured inflatable toys lying lifelessly around the yard, a graveyard of carcasses left to their fate.

I'm positive that when Friend said, "Hey, man, do you want to go outside?" he wasn't asking to play on the see-saw.


That is how I felt for this new stage of life.  Both my son and I we not practiced in something seemingly so simple to the rest of the world as having friends. Those driving by this house just see our peeling paint and poor landscaping.  Inside these walls, the ones I rarely leave, we've worked on tying shoes for ten years.  And brushing teeth. And how to sit. 

I guess we are still working on those. 

Our yard wasn't just a graveyard for dead inflatable toys. In lots of ways, it was also a representation both of a life gone by and a life never lived.  Toys never used, toys under-used and toys forgotten.  It was a physical representation of our mental state, and, watching my younger son as he twirled himself sick on his tire swing, I felt a pull to not let it define his future efforts as well.

"Hey, guys," I called to them. "Why don't you come hang in our basement?"

It wasn't perfect, but it was better than our yard. 

"Dude!" I heard my son say for perhaps the first time in my life as the happily ran through the door.  "Do you want to come to my room?"

"Ok," Friend said, and they both ran up the stairs, promptly slamming the door behind them.

Pre-teens.  In the room.  Closed door.

That's a whole other issue.  A normal issue. But, for that day, I was willing to take it!



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Monday, July 22, 2013

That Slippery Slope

I sat beside him on the edge of his bed this morning, lingering. I sat, and I looked at him, my older son.   I looked at him, although I suspected that he would not return my gaze.   He had stopped doing that recently.

His eyes were blank as he stared off to his side.  Slowly, he lifted his right hand, and he began to shake it.

Over and over again, he shook and he shook. He shook that hand as though he was trying to fling from his fingers something that was sticky and stubborn. He shook. Quickly. Purposefully. Then stiffly and awkwardly.

At times, he would stop, frozen in his space.  And then, I could see the expression in his eyes. His thoughts had changed. It looked as thought he was thinking about shaking that hand. Perhaps? Yes, certainly, the intent was there. Yet, somewhere along the long neuro-pathway that wound its way from his brain to his lower arm and wrist and hand, intention alone lost the ability to life and shake his muscles.

At best, all he could execute was a series of deliberate twitches. I watched those twitches like a hawk.

Ten days ago, in the early hours of the morning, as he was returning to his room from a bathroom break, my older son stopped at the end of his bed.

"What's going on, Buddy?" I asked him, wishing I could somehow urge him to crawl back under his covers.

Instead, unexpectedly, his legs stiffened, and he fell to the side. I lunged for him and caught him in my arms. It wasn't long before not only that one hand but his entire body began to shake.  He was having a seizure.

For not the first time since becoming a parent, I held my child as he shook, protecting his head from injury. There. In the quiet of his room while the rest of the house lie sleeping unsuspectingly, my older son and I were at the mercy of his epilepsy. We were waiting out the storm of just one of the special needs that had been dealt to this household.

In the early hours of the morning, before the sun had yet to light the sky, before the first of the morning birds voiced their greetings to the day, my son seized in my arms. And, when he finished, I cleaned him, helped him into his bed, and kissed him softly.

"I love you so much," I told him.  "Rest well."

Leaving his room, I closed the door and stopped, standing still in the hallway outside of his room. I immediately drew in a deep breath, holding it for a short while, and when I exhaled, I listened to the silence of my sleeping household. Perhaps I could sneak a few minutes of rest before the rest of the day unfolded, I thought.

I climbed in bed, closed my eyes and thought of far away places.

By comparison, this seizure was not as large as some of his others. I sought solace in that fact; however, in the days that followed, I saw him struggle to pull even his common words from his brain. He would look at me. He would try, but he just couldn't do it.

And then the twitching. And the shaking.

For some reason, it is the after effects of a seizure in my son that affect me worse than the seizure itself. I can't explain why. I'm not scared or upset when I see him seize.  After all, I've seen him through a lot of things during his life. This is just another. Different, perhaps, but still the same.

Yet, when the emergency is over and life continues, it is when I see his body still suffering from the upset that has happened in his brain, when I see the halting movements and the loss of skills that were so hard to acquire to begin is then that my blood races. I see unnatural movements, and my heart jumps. I catch my breath.

I fear that slippery slope.

I think most special needs parents at any given time feel that they live at the top of a slippery slope. Or, perhaps, it is the good day that they are at the top. Maybe most of the time, they spend their days slowly slipping down or climbing back up from a regression.

Epilepsy is fairly new to my older son, but when it hit him, it hit him hard. I guess I fear the fast fall down that slope.  I hope that it never happens, yet the realist in me must always prepare for the possibility that it might.

Wednesday, July 3, 2013

He Asked Me Why He Couldn't Talk

He asked me why he couldn't talk. I really wasn't prepared for that. Actually, I wasn't prepared for that at all.

The day had been just like any other.

The boys were home. They were rowdy, and I decided that we needed some structure, some teaching time, perhaps.  Only, I'm not really a teacher, I just play one when I'm at home with them.

After years of watching the boys in countless hours of therapy sessions, a mother tends to pick up a thing or two, and I have asked my share of questions, too. I'm not a bad fake educator. In fact, I can be quite a good one.

However, there are always times when slips happen, when words are sloppy and cues are missed. There are always times when what should have been expected simply was not and times when something astonishing happens that completely throws you off of your game.

Like when your son tells you that he doesn't understand why he can't talk like everyone else.

Those simple questions that come from a mind that is largely intact and untapped seem to rock my world the most. Most of the time, I'm unaware of how much he really knows.  Most of the time, with his vocal stims and his ticks and postures, he looks as though he doesn't know as much as he really knows.

But, then, he'll show you that he knows not only things but things and so much more!

That is when I struggle to make nice with reality.  How can I just gloss over what he lives with on a daily basis? I can't. Because it is right there. In front of me. Put into terms that I understand.

I understand the depth of his understanding.

I understand the depth of his disconnect with life.

When it is put that way, I understand it loud and clear.

And it makes me angry.

I am blessed with a very good natured son. His smile carries with it the warmth of the sun. Often, if we don't understand him...meh...he'll move on to something else. He's good like that. I guess this is why I don't wake every day feeling anger in my heart. I guess this is why the harshness of his reality doesn't smack me in my face every single day of his life.

He is a happy soul.

We are fighting for his future but we are loving who he is today. Anger is not a part of me. I am not a bitter person. I do not cry for the loss of a child that never was. Not now, anyway.

In front of me is the child that I have. He is such a great kid. He has these beautiful blue eyes, ones that have always been filled with curiosity. And, on that particular day, even though his hands were moving about and his voice was stimming, even though it looked as though he was not paying attention to me, he was, indeed, very focused. I saw those blue eyes looking intently on our answer cards.

"Are you telling me that you don't understand why it is that you can't talk like everyone else?" I asked him.

"Yes," he indicated.

My heart dropped. It was a day that I wish I carried a true-to-life educator in my pocket. One that had all the answers. One that could wave her magic teacher's degree and say the right words to him so that he could understand and be okay with why he is different in that way.

I wanted someone with me that could take away the pain--if, indeed, he felt any pain.  Do you think that he did? Do you?  I know that I did. I felt pain. I felt sorrow. I felt so darned mad and cheated for him that I wanted to scream!

In the end, what good would that do?

I decided to play teacher one day and sat cradling my preteen as I asked him some questions.  He caught me off guard, and I suddenly became a parent, woefully unprepared to answer for him a question he had every right to ask of me.

I had no good explanation.  I wanted one. Oh, how I really, really wanted one. I tried, but it didn't work. He still didn't really understand, and we both left the conversation empty.

"Do you understand?" I asked him at the end.

"No," he indicated.

I felt as though I had let him down. I felt as though everything in his life had let him down.

"Tickle me," I heard him say to me from behind my shoulder.

I smiled and turned his way.  There he was with that good nature again.

"What? Did I hear someone say that he wanted some tickles?!" I teased.

He laughed, and I walked back over to him, relinquishing that anger to a distant memory.

Saturday, June 15, 2013

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!

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

Monday, June 10, 2013

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.


Tuesday, June 4, 2013

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.


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

Tuesday, May 7, 2013

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.

Wednesday, May 1, 2013

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."


Wednesday, April 24, 2013

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."


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.


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