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.

Gulp.

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.

Unprepared. 

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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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 with...it 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.

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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The Lesson I Learned From My Freezer

There they sat in the freezer, directly in plain view, carelessly stacked on top of popsicle boxes and bags of frozen vegetables.  They were works of art and scientific studies at the same time.

They were, all five of them, created by our then-8-year-old son.

There was nothing convenient about the placement of the cups that held his treasures.  Dangerously tipped to one side or the other, they threatened to fall with even the slightest movement from any one of the other items on those shelves.  I was unable to get to anything without risking the entire effort.

And so, in the middle of my day, with an impossibly long list of things to do, these ill-placed experiments stopped me along my path, forcing me to live in the moment.

I blinked and looked at the cups.

Filled to varying degrees with orange juice, water, and milk, some thickened with different kinds of flavored syrup, they were each so carefully constructed. I peeked over the edge of them all and found that just beneath the thin layer of ice on their surfaces was an array of marbles, Legos, chocolate chips and fruit--things so different in size, scale and density that they provided absolutely perfect

conditions with which to conduct a study regarding the freezing point of different matter.

I took a step back, looked to the counter that stood across from the items in the freezer and smiled. There, ready for duty, sat a digital timer and a hand made log which our Little Scientist planned to use in order to collect his findings.

Which cup's contents would freeze faster and why?

I turned again to gaze at the cups in the freezer and realized that they did have one thing in common.

Planted in the center of each experiment was one of his favorite Lego men, his special toys, their presence putting into perspective for me the entire scene.

This was his play.

He was a kid just being a kid...the only way that he knew how. This is what his brain naturally liked to do when left to its own devices. In many ways, he was so far ahead of his peers. In other ways, he struggled more than his outward appearance showed.


He was the child who, at four years old, told me that my dangling, wet strands of hair looked like cirrus stratus clouds.

He was our expert on natural disasters by the age of five.

He was someone who could tell you everything there was to know about the mating habits of leopard geckos.

He was the boy who said this week that his jar of slime looked like ectoplasm.


 At his age, I'm pretty sure that I compared my jar of slime to snot.

This child was a child unlike any I had ever known. Yet, as with many children diagnosed with developmental delays and disorders, much of his life until that point had been focused on what was going 'wrong' with him.

We needed to know this. I don't deny that.

However, why there exists some mental shift in those who approach children with needs--why the forefront becomes clouded by the problems and not the positives--I do not know.

I am guilty of it.

"Hey, Buddy," I called out to him. "This is some very impressive work here!"

"Yeah," he said as he casually shrugged his shoulders, "I just wondered what would happen to the liquid molecules if manipulated and then all put in the same temperature below freezing."

But, of course.

Wanting to talk to him about how brilliant I thought he was, I gingerly asked him, "If you were to explain to the world what autism was, what would you say?"

"Autism is like a remote control for the brain," he responded thoughtfully. "It disables a lot of things--like scissors cutting a wire." I found it interesting that his definition of autism explained how it prevented people from doing things.

Both practically and clinically speaking, yes, we also needed to know this. However, as impressive as I found his answer to be, I also wished that his life had shown him more of the positive things that can accompany autism.

"Very true," I told him in affirmation of his words. I knew that he was thinking of his older brother who was low-verbal had faced many challenges due to his autism. "And, did you know that autism can also enable you to some really cool stuff?"

He shook his head.

"The way that you can learn every single fact about any topic that interests you?" I suggested. "That is likely a trait of your autism.  Heck, let's also remember that you know everything about the Japanese railway system. What kid knows that?!"

 He smiled.

"And, the way that you can look at something,take a mental image of it and store that exact image in your brain as it was the first time you saw it?" I shot him a look of complete admiration. "How about how you remember the day and the date of just about practically everything?!" I reminded him. "Very impressive, my friend. That, too, is all likely due to autism. It is your autism. This is how autism looks in you.  Pretty cool, huh?"

That day I realized that I had an obligation to our children to not only continue to shape the way that society viewed autism but to also shape the way that the boys viewed themselves.  I guessed that, because life often seemed to be thrown to me at warp speed, I wasn't so great at taking a step back and planning a more deliberate attack.

It often seems that I am flying by the  seat of my pants.

I do not have autism, and I do not have to function in society with that label attached to me for the rest of my life. However, our boys do.  What mother would want to send her children into the world feeling that a label had made them any less important than any one else?

I leaned down and planted a kiss on our Little Scientist's head.

"Wow," he said to me. "I didn't know all of that. I wonder if anyone wishes that they had my kind of autism?"


Right there. Right then, in that very moment and in our little world, everything with this child seemed at peace.


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This entry was written and submitted LATE in response to last week's writing prompt from the Group Blogging Experience 2 (GBE2): "In My Freezer".  Let's hope I don't earn detention for my late submission.