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

If You’re Happy and You Know It

I love to write. I have often thought if I could somehow make a living writing, I would. Teaching linguistics deepened that interest as I found new ways to rejoice in the language humans use. I had an entire lecture centered around the “F” word. I took my classes to cemeteries to study the use of language on gravestones (thanks, Dr. B., for sparking that interest). We debated whether behavior follows language or language follows behavior. All of this brought me great satisfaction.

Words are my happy place.

When I came back to “What We Need” several months ago at the urging of Therapist NC, it was pretty easy to write. Even though at some point in the past I felt as though I’d said everything here I needed to say, NC reminded me that this blog could now be about me more than about C. The words flowed. Then things slowed down a bit and I found myself struggling somewhat. The words did not come as easily as they used to.

Writing is my way of working through things. As my happy returned, I had less of a need to process, I suppose. I find it hard to write when I’m happy. When I’m happy, I’m out living my life, not processing it. Still, it’s practice, like everything else I’m doing to help stay on this road when C comes home. To remain calm amidst any chaos that may occur. To keep peace in my heart and head no matter what is happening in my home. To somehow walk that fine tightrope line of balance between what I need and what C needs.

It does seem like a tug of war to some extent. I’m reminded of that poem about special needs mothers by Erma Bombeck (excerpt below). It always resonated with me because I’ve never thought of myself as particularly patient and I have equally thought myself selfish. Somehow reading it justified those qualities or lack thereof, and I felt less guilty about not being the perfect mother.

Words have power. So I will continue to write, happy or sad, as I make my way through what is to come.

The Special Mother, by Erma Bombeck

“Give her a disabled child”. The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

The angel gasps – “Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider any step ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see… ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”

“And what about her Patron saint?” asks the angel, his pen poised in midair.

God smiles… “A mirror will suffice.”

 

March 10, 2019 at 11:01 pm Leave a comment

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

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

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