Posts tagged ‘teenager’

Tears and Fears

Things have not been All Quiet on the Western Front, truth be told. The adjustment to having C home has been difficult to say the least, and his ability to slip back into old habits has proved exceptional. This I did not really expect.

Adding to the challenge has been my realization that the person I really hoped would change in the last seven months was me. I guess I thought C’s arrival home would bring with it a completely clean slate. Instead of feeling like I’m living with the dog that’s been biting me for years, I hoped the walls were gone and I wouldn’t have to protect myself.

It has not been so.

I have had a harder time with C being home than anyone else in the house, C included. For so long, I sacrificed so much that I often feel I have nothing left to give. The well feels dry. And that results in more detachment than I think is good for a parent-child relationship. Couple that with the sense that I have to guard myself with C in order to survive emotionally, and I’m left with something that feels less than good. There’s no fun there, no joy, no playfulness.

But here’s the thing. After a horrible weekend of many tears and fantasies of escape on my part, I arrived at the difficult conclusion that maybe I just can’t co-exist with C. I went from a 10 on the happy scale to a 2 in the span of a week of him being home. It shocked me how quickly and dramatically that happened. Yes, it’s early days, but I feel like I perhaps don’t know how to be happy if C is in the house. And then the guilt piles on, because let’s face it, what mother feels this way? Apparently this one does, and that leaves me feeling like I’m circling the drain. It’s a vicious cycle.

After a weepy message that resulted in urging from Therapist NC, I dragged my sorry self into therapy yesterday and laid it all out. The pain, the guilt, the frustration. All the dark feelings that make me feel like a monster. It was perhaps the most honest, intense session I have had, and there have been some doozies in the time I’ve been working with him. I figured I had nothing left to lose.

I left there in zombie mode, and that lasted the rest of the day. I felt drained and empty, but surprisingly calm after days of turmoil. I went to bed and slept better than I’ve slept in a week. And what do you know? I woke up this morning feeling better. I wonder if just by talking it out, and almost getting “permission” from him to feel the way I feel, it took some of the power of those feelings away. It’s almost as if by admitting all the horrible things and not being immediately struck down by lightning, I realized that maybe I don’t quite feel the way I think I do.

And that gives me some hope. Some hope that perhaps just by giving voice to all of this I can perhaps move past it. I know my relationship with C will never be easy and straightforward, but maybe – just maybe – it can be better instead of worse or even non-existent. There is a glimmer of peace in my heart and head again, and I welcome it so.

April 4, 2019 at 1:39 am 2 comments

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

Memory

     We used to live in a seemingly idyllic neighborhood, one where everyone used their front porches, kids were let loose to play freely in the center greenbelt without supervision, and everyone knew everyone else. It was almost difficult to get any privacy there, really. It was the kind of place my Mom thinks could have cured C’s autism (although she would never use that word) had we stayed. She’s somewhat of the belief that lack of experiences alone is really at the core of C’s issues; as if we just let him run around unsupervised with the other kids in the neighborhood long enough, he would eventually overcome his social challenges.

     There was another boy with autism in the neighborhood – at least I think so. He was older, high school aged, and was also allowed to wander freely, sometimes appearing in our back yard silently and leaving moments later. The first time I encountered him, I was in our driveway with C, and the boy walked up to us, baseball bat in hand and an odd look on his face. I admit to being immediately frightened, not knowing who he was or anything about him. It didn’t take me long to figure it out, however, and my fear dissipated.

     I never met his parents, and wondered about their lives with this boy of few words. Had they struggled with his diagnosis early on? Did they worry about his future? Had they reached the point of acceptance of how he got along in the world, knowing he would continue to wander from house to house in our seemingly safe little spot on this earth?

     I’d like to think I would’ve gotten to know his family had we stayed more than a year in that little utopia, and they us. Yet my lingering memory of this boy was watching from an upstairs window one morning while he ran shrieking down the street in only his underwear to hug the neighborhood matriarch while she was on her morning walk. She loved him more than anyone, and clearly the feeling was reciprocated, as she greeting him with open arms and a chuckle. I watched as his Mom chased after him and hoped that if not that day, sometime later she would smile at that memory just like I do.

June 11, 2009 at 10:19 am 1 comment


It’s all autism, all the time.

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