Posts tagged ‘asperger’s’

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

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

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

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

Motherly Love

Until last spring when I accepted a job running a small environmental education non-profit, I was teaching anthropology at the local community college. I loved the job, and I can say that I was loved by my students. I went above and beyond to help students who needed it, allowed all voices to be heard, and met students where they were. My philosophy of teaching was not to tell the students what to think, but to teach in a way that made them think, wherever that led them.

I often wondered why I found relationships with students – which most definitely took on a motherly tone – so easy and rewarding compared to my relationship with C, which was difficult and frustrating. Clearly, I could distance myself from students in a way I couldn’t with C because he is my kid, and mother him I must, even in the darkest of days. I knew this in my head, but in my heart it hurt that I couldn’t enjoy C in the same way I could my students.

But maybe, I have since realized, that is not the point. Mothering, I suppose, is doing what needs to be done for your kiddo, whatever that may be. Much like my teaching philosophy, I think I just need to meet C wherever he is, give him what he needs from me, and not worry about what I think I need from him. Mothering C has never been typical in any way, and perhaps I should stop wanting that from him.

A group of students found their way into my life and filled that need for me. In that way, they have given me far more than I ever gave them. Last week, while a bunch of them were over for dinner, I was aglow in the noise and joy in the house. I found myself so ridiculously grateful that these kids were here, letting me feed them, sharing stories, laughing, playing games, and having a good time. Frankly, letting me mother them in a way I don’t really get to do with C. Giving me a glimpse into something different, and not with regret, but thankfulness that with these students, I can be the kind of mother C doesn’t let me be, doesn’t want me to be, and maybe doesn’t really need me to be.

December 17, 2018 at 4:10 pm 2 comments

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