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

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

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