Posts tagged ‘autism’

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

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

A Pain in My…

This past week, I’ve been struck down – and I mean down – with a severe case of shingles. I’m not even telling you where, but imagine the worst possible place one could experience this most painful of diseases and then light it on fire. Yup.

I have had a lot of time to think. And cry. And overthink. And not think at all because it hurts too much. Yet I landed on one thing: things with C used to be more fun. I remembered, reading through the whole of What We Need, how entertaining he was. How charming. Cute. Funny. I also remember worrying that if we didn’t get his elementary school tantrums under control, teenage C would be scary.

I was right.

I do recognize C’s tantrums now are much like his tantrums then, except on a grander scale and with far more serious consequences. We have listened to mental health practitioners and juvenile justice officers tell us that he needs more help before he turns 18, because everything changes then. Police officers won’t sit and calmly try to talk him off the figurative ledge, they’ll just put him in the back of the car and take him away. And if we aren’t with him when something happens? They won’t know he has autism and mental health issues – they’ll just think he’s being aggressive and violent. My greatest fear, if I’m honest, is that he’ll end up in the “system.” Because at some point, he won’t be here, or we won’t be here, and someone won’t understand.

So C is somewhere – a state away, in fact – getting that help. Or at least we hope so. We won’t really know until he comes home, around the time he turns 18. He will have been gone seven months at that time. He is in a place with other kids with ASD, and he sounds like he is thriving when we speak with him. While I can’t speak for Hubs, sending C away was both the hardest and the easiest decision I have ever made.

What I am still waiting to see is if it was the best decision.

 

October 21, 2018 at 7:56 pm 6 comments

A Life Worth Living

I stopped writing here mostly because I felt like C’s story was not mine to tell, he was getting older, and he was online. It felt like a violation of his privacy, and I know I run that risk again now. Yet it is not – it should not be – just about him. So much of his story is intertwined with my own, and mine with his. They are impossible to separate, it seems.

However, that is exactly the problem. My problem. In my quest to help C along his path to become a productive and happy adult, I fell into that cliche of a trap that I never thought would happen to me. I lost myself. Or, rather, I lost my identity. I became nothing but wrapped up in all things C, and it dominated my life. I was isolated, lonely, and miserable. My physical health suffered, my mental health suffered, and my marriage suffered. Of those three things, only Hubs didn’t rock the boat by startling me into paying attention. He understood, bless him. My body and mind did not.

First came cancer. Breast cancer, to be exact. I became that statistic that scares most women to their very core. Cancer forced me to focus on myself, something I had not really done since C was born, if I’m honest. I am all the better for it, despite still living in fear of its return. I went from having one friend with cancer to being surrounded by people with cancer, and while that at times makes me very uncomfortable, it also helps challenge my fear of it.

Second came depression, or rather the acknowledgement of it. After nearly a year of C’s therapist repeatedly pulling me aside after family sessions asking if I would like to talk to someone alone, I took the bait and have not looked back. Whether NC is particularly talented or he just landed in my life at the most opportune moment, I will never know for sure, but I take it for the great gift it has been to me.

So now I walk my own path once again. No longer willing to sacrifice every single thing for C, I am still coming to grips with my own judgement about what kind of mother that makes me. At the end of the day, the conclusion at which I must arrive is that it makes me a mother who is alive, in every possible, wonderful, messy way.

 

 

 

October 14, 2018 at 4:12 pm Leave a comment

In the Weeds

It has been so long since I’ve done this I don’t even know if I know how to do it anymore. Many, many years have passed, and the more things have changed, the more they’ve stayed the same. This journey, while less about C and more about me now, revolves around C – still.

With massive health challenges, painful behavioral challenges, moves, new schools, a whole lot of therapy for everyone, and alternate living situations, we have all grown up, myself included. The sheer volume of events since last I visited here would fill a book. And after spending a 5-hour chunk of time last week reading every single last word of What We Need, I came away with one conclusion: I need to keep writing. I need it for me. I need to record our journey. I need to document this life we share. If that doesn’t answer that question I’m always asking – just what it is we need – I don’t know what does.

So once again, I welcome you here. If you go way, way back, you’ll see and read about C at 8, 9, 10 years old. He’s halfway through 17 now. He’s been hospitalized more times than I can count, both for physical and mental health reasons. The police have been called numerous times. Cancer has visited our house. Relatives have died. In short, life has happened. Life has gone on, albeit somewhat painfully. Still, there is light at the end of our tunnel, I know there is. I hope you will join me in my search for it.

 

October 10, 2018 at 12:08 am 7 comments

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