Posts tagged ‘residential treatment’

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

Focus

I can go entire days without much thought of C. This has troubled me somewhat; what kind of mother doesn’t think about her child on a regular basis? If I tracked my thoughts it would probably startle me how little I think of him. However, I have realized it isn’t really a lack of thoughts about C. Rather, it’s a lack of total brain consumption regarding all things C. For the first time since he was born, really, I haven’t had to think about the C to-do list. What specialist should he see next? Is he making friends? Do I need to have another conversation with the special ed teacher? Should we start occupational therapy again? What new supplement could we add to the list that might help? Is this school good for him? 

What, who, why, when, and how…my head has been full since day one.

No, I am not a helicopter parent. Not in the traditional sense, anyway. My goal has never been to protect C from life, but to prepare him for it. Any mama bear action has been with the goal of making it into a learning experience for him. Running him around to therapies, doctors, and IEP meetings was a necessary part of getting him to reach his independence. We still have miles to go in that department, and he may never fully get there in the way other kids do. Still, that will always be our goal.

But with C gone, I have found time to focus on me again. My happiness, my life; the focus is all me. I had been working toward all of that before he left, but now that he is fully someone else’s responsibility, I can focus on gaining my *own* independence once again. I recognize that I’ll have to balance this when he returns, and I’m hopeful I’ll have enough of a running start that I will not once again fall prey to the need to focus every brain cell on C.

December 30, 2018 at 11:11 pm Leave a comment

Trouble in the Water

C’s issues have almost always manifested at home instead of anywhere else, really. On one hand, I have been grateful for that because teachers, babysitters, habilitation workers have all loved him. I remember the first time he got in trouble in preschool -everyone was so excited that he finally did something they deemed normal.

On the other hand, the fact that his issues exist at home is cause for concern about the family dynamic. I have always known we were doing *something* wrong that was making C’s behavior worse, more explosive, and more troublesome. That may have been true to some extent in that we, by reacting to his behaviors, reinforced them. We have stopped that for the most part, yet the behaviors still continued. Cue the sigh of relief that it’s not all our fault.

Yet one place C has done remarkably well is in treatment facilities. He has been in the acute care hospital four times in the last two years, and he is always discharged with comments like, “We see no real issues, and he has behaved perfectly well during his time here.” It got to the point where, on his third “episode,” we waited in the ER for nearly 24 hours before the acute care hospital would admit him, despite there being no other option for placement. They attributed his behaviors to behavioral problems instead of mental health problems. I could see where they were going with this, but when my kid is wielding a knife threatening to harm himself, I don’t really care what’s at the root of the behavior, I just want him to get help.

His time at his residential treatment facility has been no different. We’ve already had one of his therapists express disbelief at him being there at all. We are used to that, although I still find it annoying, as if there is some flaw in the therapist that he can’t see past the happy, agreeable front C puts on. Therapist NC here at home promised us we would get a call at some point saying C was in trouble and that it would indicate he had finally settled in and the real work could begin.

The months had gone by and I had resigned myself to this never happening during his entire stay, because let’s face it, C is C and he does things in his own sweet time in his own sweet way, or not at all. But he called us the other night, in enough trouble that if he gets one more strike, he won’t be able to leave campus during the day with us at Christmas, and we’ll have to visit with him in the visiting room only. Yikes.

The relative amount of relief I experienced about this was palpable. I texted Therapist NC about this development, knowing he would be one of only a few people who would understand how ridiculously happy – yes, happy – this made me. Because I know that this means C is comfortable. He is comfortable enough to show himself and his behaviors. And that means he can finally get some help.

December 10, 2018 at 6:45 pm 2 comments

Holding Pattern

My goal at this point is to kind of just get through the holidays. Before C was born, I was all about the holidays. Starting with a pumpkin carving party for Halloween-to a massive feast on Thanksgiving-to decorating everything that moved for Christmas, I lived for October 1 to January 1. But this year, I’m just not in the mood. I am not in a bad mood, but I have realized that I would rather just “be” than pretend as though things are normal when they are most definitely not.

Like so much with C, things slowly started to change after his birth, and our holidays changed just like everything else. C was terrified of Halloween. Literally terrified. Pumpkin faces and costumes freaked him out, even the happy ones. In later years, he enjoyed trick or treating (even though he didn’t like candy) just to bang on people’s doors and get something from them. But slowly over time, my Halloween decorations were put away, and eventually just given away.

Thanksgiving was even more of a non-event with C because he simply didn’t eat. I have talked about his sensory issues with food many a time here, and they really impacted family gatherings. It took years for him to be able to eat around other people, and he still struggles with it to this day. His feeding therapist always told us eating was the second most difficult thing for the human body to do next to sex. Eating involves so many sensations that are overpowering for sensory challenged kiddos. True that, we have found.

Christmas? It was a bit better, especially given C firmly believed in Santa until well into middle school, which I loved. Yet he was all about the material gifts, which I didn’t love so much. When a kid starts saying, “Just give me cash, it’s easier,” it sort of takes the meaning and fun out of it. He enjoyed the spirit of giving at first, but even that faded over time.

Still, preserving traditions was very important to me, and I kind of mourned the lack of them in our home. I grew up with very entrenched holiday traditions, and I envisioned my own family being that way as well. Like so many other things, that has not happened for us, despite early efforts to make it so. I eventually kind of gave up, and felt somewhat resentful for it.

This year? I am oddly grateful for a newfound awareness. With C away and everything feeling so strange, I have realized it is not about the pumpkins, the feast, or the tree. I am not opposed to those things, but they just don’t mean as much to me anymore. I was caught up – not in the stuff as much as in doing the stuff. Right now? I’m pretty content with my 24/7 Christmas carols and reveling in the recent snow. Watching the birds at the feeder, smelling the scented pine cones I picked up at the store, and peppermint hot chocolate are filling my soul more than enough this year.

December 2, 2018 at 6:00 pm 2 comments

Woke

I read the message of a dear childhood friend with surprise. She talked about the impact of the various health crises of her special needs child on her other children, and how she and her husband had not really tackled that impact well in the midst of everything going on. She is kind of a pillar of amazing-ness to me; she has handled their child’s medical issues with a strength and grace I strive to emulate.

I quickly responded in support that we are all doing our best in any given moment, and I believe that of her completely. I then gently tried to extend that sentiment to myself to see how it felt. I found myself believing it, maybe for the first time ever.

I think I’ve spent 17 years judging – and often judging harshly – myself and how I have handled things with C. I am a fixer at heart, a researcher by trade, and I’m always convinced there is an answer just around the corner. I keep searching for it, because I know if I find it everything will be better.

But I give. I quit. I’m done. No more of that. Whether it took distance from C to realize it, or if I am just waking up, I don’t know. It brings me to tears to think about it – holy cow, I have been hard on myself. From day one, if I’m honest. Not good enough, not doing enough, not doing the right thing, not giving enough, not loving enough. Yet the reality is I have done everything, given everything, and loved so hard it sort of broke me.

I am always doing my best. And I can always do better. Therapist NC wrote this statement on a whiteboard at our very first meeting with him. How I hated that sentiment – and many others – during those early days of therapy. I couldn’t live with dichotomies like that one. I thought it excused things. Gave reasons for C to be an ass and then say he was doing his best in the very next breath (which he did more than once). But perhaps what it really did was bring to light my own deeply-held belief that I was never, ever at my best. Doing better was something I should be doing more of, even though I felt like I was constantly working at it. I had the second part of that therapy statement down, perhaps too much so.

It’s exhausting living with the belief you are never good enough. I am now trying to give myself a little bit of a pass on the “I can always do better” part. Even though I’m not doing exactly as instructed by Therapist Saying #1, I think it’s an okay way for me to work it. Putting down that heavy weight has been a great relief. And in this week of Thanksgiving, I find myself grateful to have finally reached this point of believing I am doing – and have done – my best.

November 18, 2018 at 3:36 pm 2 comments

Unpacking

I wandered into my appointment with my therapist this week without a whole lot on my mind, really, except ongoing pain around which life seems to revolve right now. What came out of my mouth, however, were several revelations I’m not sure I even recognized for what they were until I spoke them aloud. Whether a high pain level lowers my internal filter or makes me care less what anyone thinks, I’m not sure, but it does seem to be an effective conduit for getting things out of my head and into the universe. And somewhat surprisingly, lightning bolts didn’t strike me down immediately for saying these things. Go figure.

The worst of the worst? I’m fairly ambivalent about seeing C when we visit him over Thanksgiving. I haven’t seen him since he left here in August. And he left after a rather violent episode that left us both hurting. Hubs was out of town, C went for pills I inadvertently left out, and the rest is history that will haunt me for years to come. Truth be told, I don’t know that I have actually forgiven him for that incident which, if I’m honest, is probably more at the root of my ambivalence than anything else.

When we talk with C on the phone, he sounds great. Things come out of his mouth that astound me. He seems healthy, well adjusted, and happy. But I don’t really trust any of it fully. It all feels artificial. We won’t know how he’s truly doing until he comes home, and even a visit won’t tell us much. Only when we are all back in our daily routine will we be able to tell if any of these newfound skills will actually stick, and I admit to not having a whole lot of faith in this process. Not really because of C, his treatment center, or Hubs and me. It’s more about the best predictor of the future being the past. Habits, dynamics, behaviors…they are all difficult to change.

So I wait. I continue to work on my sense of inner calm and peace no matter what is going on around me, because I know that’s really all I can do. Staying in the moment and all of that. I am a lot better at that particular skill than I was a year ago. Still, when someone is throwing things, body slamming closed doors, going for knives and pills, and screaming hateful things, it is fairly difficult to be very Zen. I am trying to let those incidents fade from my memory and recognize that a seven month break is pretty significant. A lot of change can happen in this time C is away.

Yet that voice in my head and heart continues. “What if?” I just keep trying to counter the negative answers with, “What if it’s great?” I am reminded of my own Nana, who had unrelenting faith in all of her children and grandchildren. Cousin X could have murdered someone and she would chalk it up to a phase that would pass. So I’m left wondering. What if C grows up, gains insight, recognizes his own role in life, and chooses to jump down on the right side of the fence? Now wouldn’t *that* be something?

November 11, 2018 at 4:17 pm 2 comments

Older Posts


It’s all autism, all the time.

Parenting Blogs - BlogCatalog Blog Directory

Blog Stats

  • 79,506 hits