Posts tagged ‘autism’

Mrs. Fix-it

I am undoubtedly harder on myself than I am on anyone else. I am a fixer, and recognizing that I probably can’t fix the situation we’re in with C brings me a lot of discomfort. In my mind, there is some flaw I could have repaired along the way that would have ensured a different outcome than this.

“This,” is a simple word that involves a complex set of issues and solutions. My tolerance level for all things C, surprisingly to me, is very low. I thought I would have recharged while he was gone, but instead I grew used to not living on edge, not feeling like drama was around every corner, and not feeling tense at any given moment. So happy was I, enjoying my own life for the first time in too long to remember, that any threat to that enjoyment brings me down further and faster than I would like.

What Therapist NC told me today is that I need to accept it. All of it. Accept that C is a challenge and always will be. Accept that I’m frazzled and fried and maybe am not capable of having a good relationship with C. Accept that I can’t fix everything. Accept, accept, accept. But don’t go so far into acceptance that it crosses the line into giving up and giving in.

Just where is that line? I admit I don’t really know. I have been badgered by the reality of life with C for so long that while part of me understands I suffer from compassion fatigue, the other part still thinks I can fix (or could have fixed) all of it. On one hand, I moved mountains for this kid, I know I did. I did everything humanly possible to prepare him for this life of his. I did all the things, I know that. On the surface, I can look at it all and know. But what I wonder, deep down, is if in doing all the things, I somehow lost sight of just being C’s Mom, and if that somehow had some effect on where we are now.

And there it is, that self doubt at which I am exceptionally skilled. NC says parents of kids in residential treatment think their kid will either come home totally changed or that their kid is incapable of change. I don’t believe I fall into either camp, really, because I still maintain that I’m the one I expected to change. Whether I changed too much or not at all, I’m not sure, but I know I’m the one I’m most frustrated with. One way or another, I think I expected too much, and mostly of myself.

Today NC middle-named me. Yes, he *actually* middle named me. Right before he told me I am good enough, I have done enough. In perhaps the most therapy-ish moment I’ve ever had with him, he said these words to me. And then he repeated them. And then again. I suppose I needed to hear them. The trick now is to believe them, even way deep down.

April 15, 2019 at 11:29 pm 2 comments

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

Backseat Driver

C gets released in just two short weeks. It’s hard to believe seven months have gone by – on one hand it seems like the blink of an eye, but when I look at everything that we have accomplished in that time it seems to spread out a bit more.

I seem to have attained a more Zen-like level of calm, but as tasks related to C’s return pile up, I see chinks in that armor. I quickly remembered how much work just goes into managing all things C. Today I spent a couple of hours finding an attorney for our application of guardianship, making an appointment with his psychiatrist, setting up an appointment for his evaluation for para-transit, signing up for city bus training, researching how to switch him from Institutional to regular Medicaid, and communicating with his school about re-enrollment.

I’m left wondering how people with less skills and pushiness navigate the system while simultaneously being frustrated at the challenges of navigating said system. It all adds up to one thing: stress. C has been someone else’s responsibility for seven months, during which time I have enjoyed the fact that no one needs me for their survival in this world.

Then I wonder if I’m over-estimating my own importance in C’s life. The fact is, this kiddo has done something I can scarcely imagine; he has navigated residential treatment with nothing short of great success. He has gone from being an only child to having three roommates. He has joined the basketball team. He has gotten straight As in school. He has been selected as Resident Adviser for his wing. He has survived and thrived in an environment that causes most people to shudder when thinking about it.

Perhaps when C comes home he will be more grown up, more responsible, and more ready to take control of his own life. Perhaps that will enable me to step back and watch a bit more, allowing me to continue to cultivate the joy I have found in my freedom to live my own life. Somehow we’ll have to reintegrate into each other’s lives, but I hope that we can do that while maintaining the boundaries I need in order to survive in his world.

Maybe, just maybe, we are both ready to take more of a backseat in each other’s lives.

March 7, 2019 at 12:04 am Leave a comment

Easy like Sunday morning

When I read through the drafts of posts many years ago that were never published, it’s like reading letters to my future self. I am amazed at how much things have changed and how much they’ve stayed the same. I still question myself, I question my parenting – I question everything. But it’s all in a more forgiving, empathetic way than it used to be.

While I am feeling calmer, easier, and happier these days, I continue to see Therapist NC in order to practice for the storms that are sure to come. He gave me an assignment to write a list of my “Signs of Decompensation” so that I would have a contract of sorts with myself to notice when things get bad and then call myself on it. (Never mind that the word “decompensation” is so darn close to “decomposition” that it goes all sorts of odd places in my head, and I end up down a rabbit hole of weird.) Ultimately, I had a harder time than I thought I would writing that list, and I left all kinds of things off it.

Then I found this in my drafts from many years ago…I talk a good talk about how calm I am in the face of the storm that is our life. One of these days, someone is going to figure out I’m faking it all, posing as a serene parent of a less than serene child. As we try to figure out how to deal with challenge number four zillion and two, I wonder if it will ever be less complicated. Our “normal” seems to be what sometimes feels like emergency management 101. Often it seems as though we are living crisis to crisis, and it’s impossible to keep perspective on things…

Whelp. First of all, no, it won’t be less complicated, past self, but nice try there. And you gave up talking the good talk long ago and just kind of fell apart, if I’m being frank. Faking it? Absoflippinglutely. If no one else figured out that you were anything but serene, your body and mind sure did. Perspective? Don’t even go there. You’ve graduated from emergency management 101 to emergency management 201, but still, there you are.

And there it is. My list. All in one little paragraph from many years ago.

What’s the difference now? I simply hope, with my whole self, that I have learned the skills to weather the storm, however it comes, however it hits. And that enough people have seen my “list” so that even if I don’t recognize my own decompensation, someone else will.

February 25, 2019 at 7:31 pm 2 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

Wild Child

“Tell me, what is it you plan to do with your one wild and precious life?” ~Mary Oliver

Someone I trust more than most recently told me I am a completely different person than I was two years ago when we met. Entrenched in anger, sadness, grief, and frustration, I was miserable. I was coming off the end of cancer treatment, suffering with significant nerve damage and body image issues from the surgery, and trying to manage all things C. No easy tasks on that list.

I ruminated on that statement for a day or two, and I realized something. I’m back. Back to me, my old self, and the happy, adventurous wild woman that I used to be. It looks different now than it did in my 20s, when I would (stupidly) take off alone in my jeep with nothing but a forest service map and some munchies. In my late 40s, adventure to me looks more like being vulnerable, taking on an exciting new job, and speaking my truth. Writing. Engaging. Sharing secrets. Asking for what I want and need.

This journey for me really started with C. Not *that* C, but the Cancer-C. It was the wake up call I needed, it seems. “Hey!” it screamed. “Your life could be over. Is this all there is, is this all you want?” And in the most cliche movie-moment ever, I realized the answer to both those questions was no.

That same someone asked me back then if nothing changed in my life, could I find a way to be happy? I remember groaning at that question, and I probably rolled my eyes. But over time, I realized I had to figure out a way to make that answer into a “yes,” and the solution to that was all me. Not that much has changed – my health still challenges me, and C most definitely still challenges me. Yet I am in a much better place.

The journey here has been full of ups and downs, and I know it will continue to be. But I most definitely know what I want to do with my one wild and precious life, and it is exactly what I am doing.

December 23, 2018 at 4:19 pm Leave a comment

Older Posts


It’s all autism, all the time.

Parenting Blogs - BlogCatalog Blog Directory

Blog Stats

  • 80,098 hits