Archive for February, 2019

I remember…

I remember standing in the elevator after C’s first neurology appointment  (with a doc so aged another doc acquaintance later said, “What? They still let that guy practice?”) and Husband saying to me, “How does it feel to know more than the doctor?”

I remember C crawling in bed with me in the mornings and saying, “Tummy hurts.” Every. Single. Day. For. Years. It was nearly 12 years before we found the problem behind that issue.

I remember C’s first day of preschool at three years old. He looked up at the Exit sign and said, “E. X. I. T. Exit.”  We took him home and wrote out the handful of words he used at that point and realized he could read every single one.

I remember C’s first throat culture, in the emergency room well after midnight when he spiked a fever we couldn’t get under control. I told the doctor I wasn’t sure how easy it would be to get one due to his sensory integration issues, to which she responded in her most condescending voice, “Who diagnosed him with THAT?” as if it was a completely made up thing. It took three staff members to hold him down.

I remember meeting the developmental pediatrician who diagnosed C with autism. Her first words to me, after hearing his screams and tantrums from down the hall, were, “You’re in for an interesting ride.”

I remember snippets like these. I suspect every parent does, but I wonder if parents of neuro-typical kids remember things in a different way. I can’t put my finger on what I would call a regular moment with C. Everything is so dramatic, so extraordinary, and of such significance. I look back and remember nothing average, nothing mundane, nothing banal. I’m sure those moments happened, but not frequently.

I don’t really know what to expect when C comes home, but I certainly hope for boring. Or at least more of it than we have experienced before now.

 

 

February 18, 2019 at 1:00 am 4 comments

What We Need

What We Need has functioned as a journal for me over the years, and in my draft folder there’s almost 100 starts that I never published (if you don’t know the meaning behind the title, here is an explanation: Just what do we need, exactly?). As I read through those drafts I am often startled at what I find. They are full of pain and hopelessness and desperation. It doesn’t match what I feel now, but I admit to feeling more than a bit anxious at the thought of C’s return home.

Anxious enough that during a session with Therapist NC and Hubs last week to discuss the “coming home plan,” I found myself admitting that I don’t really want C to come home. It’s not really about C himself, it’s more about not wanting to return to the way things were…or gradually doing so and not realizing it until we are right back where we were before C left.

When I read the old draft of a post (below), I was struck at how much that was our life at the time I wrote it (almost a decade ago), and how much that was our life when C left for treatment last fall. How, I ask myself, did we let it go so long? It astounds me just how painful, just how hopeless, and just how desperate things were for so many years. It’s not as if we didn’t try things – we tried everything. But nothing ever worked. Therapy, meds, interventions, home visits, school changes, homeschooling, living near relatives, living in social neighborhoods with lots of kids, signing C up for things…none of it ever did anything to change what was going on in our home.

Therapist NC would say, if I could channel him, that we’ve all done a lot of work in the past six months and there has been great change. I don’t disagree with him, but it is hard to imagine something different when things have been so much the same for so long. So once again, here I sit, feeling a bit anxious, with good reason to be, but also with some hope – again, with good reason to feel some. The trick will be – as it always is – to find the balance between my expectations and my own self-awareness, with a good dose of hoping I’ll know where the line is so that another decade doesn’t go by with us living so far across the line we can’t even see it any longer.

From 2011…Still, here I sit tonight, completely and utterly perplexed as what to do next. I have a child whose combativeness and behavior are at a crisis point. It starts in the morning when he wakes up, continues from the moment I pick him up after school, and rarely settles before bedtime. With every fiber of his being, C is screaming that he needs something, and we are all at a loss for what it is. While we try and figure it out, I try to ignore the venom directed my way and tell myself it’s not C. I try to stay calm while he screams, relentlessly, about how he doesn’t want to stand here, there, or anywhere. It’s that unreasonable. He’s like a gnat that won’t go away, and he follows me around, forcing my attention, until I lock myself in my room to escape his wrath. Then he starts trying to kick down the door. Yes, we are in an almost emergency state, our little family, and we are failing at being a family. We are at the point where there’s going to be some intervention, and I only hope the intervention comes on our terms instead of some random person walking down the street calling CPS because they hear what sounds like a tortured child.

February 11, 2019 at 5:23 pm Leave a comment

A way with words

There was a time when we thought C might never make noise or speak. When he was a newborn, I remember telling my mother that I would never complain about his crying if he could just actually do it. At the time, he was on a ventilator, and we couldn’t hear his “voice.”  I wasn’t convinced yet that C would actually live, so suddenly a screaming baby seemed like a wonderful thing.

Of course, C did live, and once he had the tube out of his throat he made his voice known. But it was years later when we wondered if he’d ever really speak. I prayed to hear his voice, only this time in a different form: words. I wanted to hear words. Shortly before his second birthday, he said, “MAH” (translation: “MORE”), and celebration followed.

It was a long and painful journey from “MAH” to words and then to sentences and then to spontaneous speech. C was about six years old before the echolalia became unnoticeable to all but those of us closest to him. Then people commented on what an interesting vocabulary he had when he said old fashioned things like, “Good grief” (Charlie Brown); or quirky things like, “Save money, live better” (Walmart slogan).

All these years later, we have a kid who rarely closes his mouth. His constant stream of words, even while asleep, changed the joy I felt when he first spoke them into craving any moment of peace and quiet I could find.

Yet missing from C’s language was the vocabulary of compassion. I didn’t realize how much it was missing until I realized he all of a sudden seemed to acquire it. Last week, when I suggested to him that perhaps it was vital to have all the facts about something important before relaying it to us as truth, he said, “You’re right Mom. Thanks for telling me that as I wouldn’t have known how it impacted you.”

Ho. Ly. Cow. A. Bunga. I about fell out of my chair. I have never heard words like that from C. Ever. And I’m hearing things like that more and more when I talk with him. I find myself believing there might be change when he returns home in a quick six weeks. Could it be real? Only time will tell, of course, and I admit to being skittish about getting my hopes up too much. Still, there is a glimmer there of something we have never heard in his words, and hopefully his actions will follow.

It is better to have a heart without words than words without a heart. ~ Mahatma Gandhi

February 4, 2019 at 9:06 pm Leave a comment


It’s all autism, all the time.

Parenting Blogs - BlogCatalog Blog Directory

Blog Stats

  • 79,506 hits