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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