Posts tagged ‘residential treatment’

Heartache and heartbreak

Parenting has not been anything like I thought it would be. I hear comments from parents about it being the greatest joy in their lives, the best thing they’ve ever done, or the purpose for their very existence – and I want to scream. It has not been the case for me, not even close. Parenting C – through no fault of his own – has been the most difficult thing I have ever done. I recognize how awful that sounds as well as the ramifications for saying it. I wrote this long before posting it; letting it simmer in its sadness and reality long before I decided to share it.

I do remember having a sense of joy in parenting when C was little, despite the complications and before most of his anger and venom had a target. I wonder, had that anger been turned toward the world and not me and sometimes Husband, if I would have had a different outcome than I am experiencing now. I’d like to think so.

But the reality is that it didn’t. We are where we are.

We have landed right back where we started, and far more quickly than I thought we would. A mere two months after C returned home, he is now back in an acute care psychiatric hospital. His behaviors have been escalating, culminating in my calling the police yesterday morning. They called in their psych team that rides with the force, and they elected to put him on a 72-hour hold.

I think both Hubs and I are pretty numb at this point. We have realized we need to find C alternative housing, as we have to be absolutely *perfect* in order to manage C’s behavior, and even when we are, it’s no guarantee. It is no way to live. We’ve been told that if C isn’t in the home, he is very unlikely to finish high school, which is part of why we hoped we could keep him at home for the next year and a half. But the cost is simply too high.

In the biggest act of radical acceptance I can muster, I recognize that this is the way it is, and it is unlikely to change. C is who he is. I hope that he will grow up and grow out of his current mindset, but he may not. My hope is that if we can find him some placement, he will settle in and blossom much like he did while in residential treatment. Given that his issues exist mostly in our home, I find this hope possible despite my nervousness about the unknown in his future.

So where do *I* go from here? If that isn’t the question of my life, I don’t know what is. I recognize that while I have come very far, parenting C is likely always going to overwhelm me in ways I am unable to overcome. I will continue to hope that we can help C become independent and that he’ll live a life that is meaningful to him, whatever that looks like. While I want that for him, I also know that it is what I need in order to have the same for myself.

 

 

 

 

May 25, 2019 at 10:45 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

All in a Day

Last night, I sat on our bed in the dark, alone in the house. I listened to the silence and felt the lack of “vibration,” for lack of a better word, in our home. Recognizing that it would be the last time I would experience that for some time, I reveled in the sensory deprivation.

I spent the day yesterday finishing a painting I started five years ago. In a few weeks, I turn 50 years old, and to celebrate I made a list of 50 things I want to do in my 50th year. Finishing this paining was high up on the list. Unlike writing, which I tend to do when something is bothering me, I have to be happy to paint. I figured finishing this painting, which now hangs above our bed, would be a feather in my happy cap. It will forever remind me to find my happiness if I lose it again.

C is home now. He and Hubs arrived home early this afternoon. For whatever reason, I felt weepy all day. My pain levels have been high (probably just as much about the crazy positions I get into when painting as anything else as I paint on the floor), and I’m tired despite sleeping well last night. I think there’s been a whole lot more going on in the background of my head space than I realized. 

But we all made it through the day intact, and for now, that is enough.

March 25, 2019 at 12:49 am 3 comments

All By Myself

Yesterday evening felt like Hubs’ and my last night – not so much alone, but without having a care in the world about what is going on in our house. C will be home a week from today, and to say I am not feeling ready is an understatement.

Out to dinner we went. Apparently, it’s prom somewhere, and there was a huge table of dressed up kids having a great time. I watched them giggle and smile and talk and I was hit with a pang of sadness that brought tears to my eyes. C is nearly 18 years old, yet these moments still take me by surprise when they happen. You would think I’d be used to them by now, as the window of typical closed long before it could open.

I’m not sure what that sadness is about, exactly. I don’t picture C ever sitting in a restaurant with a group of kids before going to prom, but that is hardly a barometer of a life well lived. I think it is more about C having people. No siblings, no cousins, and I can remember every kid that has been his friend. They have been few and far between. He goes to school, goes to work, and comes home. He spends entire weekends seeing no one but us.

For me, isolation has been a sign of depression. For C, isolation probably causes his depression, perhaps without him even realizing it. He simply doesn’t know anything but isolation, really.

Still, I sometimes don’t think C knows who he is unless he has someone to bounce off of. He is so intensely social and desirous of contact, and most of the time, that contact is us. It’s no wonder this past seven months has been such a respite for Hubs and me, and I probably shouldn’t be surprised that my androverted self is anxious at the thought of C’s return. Because really, that’s the core of it: C needs more than we can give him. He needs a life outside of home, and we need a life separated from being his entire circle.

C has been around kids 24/7 for the last seven months. While they all have autism and I can’t expect he’s necessarily picked up any great social skills, I hope that he has experienced the joy of interacting with one’s peers. I hope that he will somehow have recognized the power of companionship and will do whatever it takes to get out there and make some friends, whatever that looks like for him.

 

March 17, 2019 at 11:51 pm 3 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

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

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