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

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

Sanctuary

“Going home is my sanctuary,” a doctor once said to me. “I doubt it’s the same for you.”

It hit me like a ton of bricks. Home was not my sanctuary. Home was where I was my most tired, stressed, and unauthentic self. I would lose myself in fantasies of being alone in a cabin, alone on a beach, alone in a jail cell, alone in my car. None of these were things I really wanted. I knew those fantasies were simply my brain’s way of reminding me I needed a break. But I never seemed to get one.

It was strange, because at that time I couldn’t imagine any life other than the one I had. I knew I was simply where I was supposed to be, doing what I was supposed to do. I struggled with the feeling that I no longer had my own identity beyond the one given to me the day C was born. Still, I couldn’t imagine my life being anything other than exactly what it was.

Fast forward many years and enter a combination of things – C being gone, having a new job in which I thrive, and some hard therapeutic work on my part. I have grown to love my life in a way I haven’t since C was born. So much so that when C called the other night saying he was being released early (a mistake on his part, that’s for another post), I cried, and not in a happy way. Yes, in a Mother of the Year moment, I cried when my kiddo told me he was coming home. Granted, there were other things going on that contributed to that reaction, but nonetheless, there it is.

It took me a few days to fully process these feelings, but it boils down to this sense that peace is swirling around me now, and I want to protect it. Fiercely. What I have realized, however, is that sanctuary is not necessarily something around me, it’s something in me. Amidst the chaos and total discombobulation that revolves around C at times, I need to find my calm and live there regardless of what’s going on around me. Fortunately, I have two more months to continue to cultivate that skill.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.” ~ unknown

 

 

January 27, 2019 at 3:01 pm 10 comments

Clearing the mind

I am not a huge fan of “stuff.” I don’t own 100 pairs of shoes, tons of make-up, or hordes of purses. Hubs is similar. We each have our collection of things, though…I have lots of tennies (comfort is important to me), and Hubs has lots of camping gear (his days as a park ranger aren’t that far behind him). Relatively speaking, we don’t own a ton of possessions. However, we differ in a way that I find interesting: Hubs likes a clean surface and I like a clean drawer. I like to think we complement each other in that way.

In my mind, my desire for organized dressers and kitchen cupboards was always a metaphor for what was going on in my mind. I would clean a drawer in an attempt to clear my head of its figurative clutter. It never really worked all that well…my restlessness and general melancholy were only relieved in small doses.

I often think C’s brain is just so full that he can’t settle enough to experience peace. Whether it’s autism, teenager-y, or his general personality I’m not sure – probably it’s all three. In my journey toward mindfulness, I have come to recognize how difficult a skill that would be for C, and he in fact struggles with it greatly. Not that I always find it easy, but I have calmed my inner clutter enough and have experienced enough reward for it that I want him to get there too.

Enter Marie Kondo. I have been familiar with her concept for years, but only generally. Lately, however, I have been watching her show on Netflix, and to say the connection between outer and inner clutter has become more clear to me is an understatement. I spent many hours yesterday Kondo-ing my closet, and despite my comment above that I’m not a girly-girl with lots of clothes, I managed to get rid of at least half of what was in there. The sense of relief has been palpable. I can’t wait to get to everything else.

For me, it seems I needed to calm some of the inner clutter before I could tackle the outer instead of the other way around. I am not sure what the key is for C, but I find myself hoping that his months of living without all of his stuff while in residential treatment has aided in his ability to experience inner calm.

January 13, 2019 at 6:12 pm Leave a comment

Make new friends, but keep the old

If you have kids, you know that a lot of the time you make your friends through your children. For us, that meant we didn’t have a lot of friends when C was growing up, because he didn’t have a lot of friends. I can count on one hand the number of close friends I have had since C was born, and two of them I have been fortunate to see while visiting my parents this holiday.

J was C’s habilitation worker when he was in early elementary school. She was often the only other adult I would interact with in a given day besides Hubs, and C would get jealous when she and I would chat for too long. Even though we moved away long ago, J remains a light in our lives.

The other friend I met online before we moved to this town I am now visiting. R was the head of a special needs group that I contacted before we arrived. We happened to be standing next to each other on the first day of school pick-up, both anxiously awaiting our boys’ faces coming down the hall. We chatted for a moment before somehow figuring out we already sort of knew each other, and a friendship was born.

Our boys, both on the spectrum, are to this day quite different. We tried to make them friends, but I suspect C’s boisterousness and constant chatter annoyed the heck out of B (believe me, B, I get it). There were times R and I said to each other in the same moment, “I can’t believe they have the same diagnosis.” Still, we managed to find common ground. Years later, when I am fortunate enough to see R, we pick up right where we left off. Most of the time we are talking about our boys, and while their challenges are different, there are random little similarities that bring us together in our understanding.

Being back in this little town always makes me nostalgic. Had we stayed past C being in 4th grade, would he be attending the local high school or would we be driving him to the big city over the hill to a different school? Would C have a level of comfort he does not have now? Would he, with a support system we have not had since we left here, have experienced things differently than he has? Would we all have?

I guess I’ll never know the answers to those questions. But what I do know is that I will always miss those two friendships I have not been able to replicate since we moved away.

January 6, 2019 at 4:15 pm 5 comments

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