Posts tagged ‘autism’

The Other Mother

I am reposting my favorite post ever. It’s called “The Other Mother,” and it still makes me cry when I read it. Those feelings are always there, and always raw.

She watches mothers, constantly, and is fascinated by their sheer volume. She wonders if she will ever take up that much space again? She feels smaller than she used to, less a presence in the outside world, but more a presence in her own home. She feels dependent; on schedules, routines, the refrigerator, her child’s mood. She feels depended on for sheer life. She wonders what would happen if she were no longer here, and she worries about it. She knows kids can survive without mothers, but what about these kids? What about her kid? She wants to download all the information about her child from her brain to something else – just in case.

She watches mothers, on the playground, at the grocery store, and at school, wondering if they are even aware of mothers like her. What must their lives be like? She pictures their households, and pictures an easy life. Not easy as in simple, but easy as in normal. Are those mothers blissfully unaware of mothers like her? She reminds herself not to judge her insides by someone else’s outsides (she read that somewhere), but she can’t help but wonder what that normalcy must be like. Not normal in terms of her child being not normal, but normal in terms of just being a typical, average family. She gets lost sometimes in the added layers of complication of their lives; the trying to find the after-school activity that promises the largest chance of success for her child, the hope of her child finding a playmate that might become a real friend.

She watches mothers, and she reminds herself she wouldn’t change one thing about her child (he is perfect) save the chance to make things easier for him. It’s not that she doesn’t want him to learn the tough lessons, but rather that she wishes he didn’t have to learn so many of them. Where’s the equity? Why do these kids, already challenged, have to be challenged so much more? That’s what makes her cry.

She watches mothers, with a feeling she can’t quite describe building in her heart. It’s not envy, judgment, anger, self-pity or sadness. It’s distance. She feels on the fringe. She imagines that’s how her child feels most of the time, and that disturbs her most of all.

May 12, 2019 at 10:45 am Leave a comment

The Calm After the Storm

So things have settled down a bit. C is doing pretty well even though his room looks like a toxic waste dump. I just try not to look in there very often. It seems to work fairly well.

I admit, I’ve kind of given up and let go to some extent. I still make him come back downstairs and clean up the mess he leaves in the kitchen, but unless I remind him of each step multiple times, about 75% of them don’t happen. He still wants to spend his entire paycheck on Pokemon related things five minutes after said paycheck hits his bank account. I’m not sure what else we can do at this point to turn him into a fiscally responsible adult beyond our requirement that he save 50% of his money in an untouchable account. He still binges way too late at night, which is not good for his war-torn belly, but it seems to irritate me more that he’s so obliviously loud when doing so than the fact that he’s eating at 11 p.m. Yet I continue to have concerns about his health.

This is just who C is, and while I know this, I find it difficult to accept. What bugs me even more, however, is that our job as parents (in my opinion) is to prepare a child to be a functioning adult – have we done that? I’m not so sure, which is probably why I hang onto an urge to parent C. I find it a myth that parenting stops at 18 years old, but I also doubt the level of change *I* can bring about in C’s life at this point. I see stories about adult children living at home, needing their parents too much, and ultimately failing at many areas in their lives, and I make the mistake of reading the comments on those stories…bad move on my part. The little voice in my head starts asking what else I can do, what else I should do, what else I need to do.

Because ultimately, I want C to be independent (or I want him to be able to move out – it depends on the day how I word this goal). And not just independent, but safely, happily, and successfully so. Frankly, I’m not sure which of these, if any, can actually happen. And my mind goes back to him being my job and all the things he needs help with, and ugh, it’s a vicious cycle.

Then I remind myself I’ve done my best. I’ve done all the things. I’ve given it my 100% for C’s whole life. And I pat myself on the back a little bit and focus on the thing I can actually do, which is take care of myself and try to heal from the years and years of stress, drama, and pain. It is all I can really do, and probably the sooner I accept that little fact, the better off I’ll be.

May 1, 2019 at 8:22 pm 1 comment

Silence and Heartbreak

Many years ago, when C was in second grade, I experienced the single most traumatic event as his parent – even to this day. This is saying a lot, given his birth could not have been much more dramatic than it was, or all that’s occurred in the last several years. Even now, all these years later, I can still conjure up the pain of that day in vivid detail. It taught me a valuable lesson, however, about silence, trauma, and what it really means to be a Mama Bear. Moreover, when looking back on it, I am reminded that despite all of the frustration I have felt over the years at being the person who gives C the most while being the biggest recipient of his anger and despair, I would do anything for this kid. I might screw it up completely, but I’ll go to the ends of the earth to help him. If that isn’t being a Mother, I don’t know what is.

You can read about that day here. Be warned, it is a bit longer than usual, and perhaps a bit more painful. But silent? Never again.

April 24, 2019 at 12:06 am 1 comment

Mrs. Fix-it

I am undoubtedly harder on myself than I am on anyone else. I am a fixer, and recognizing that I probably can’t fix the situation we’re in with C brings me a lot of discomfort. In my mind, there is some flaw I could have repaired along the way that would have ensured a different outcome than this.

“This,” is a simple word that involves a complex set of issues and solutions. My tolerance level for all things C, surprisingly to me, is very low. I thought I would have recharged while he was gone, but instead I grew used to not living on edge, not feeling like drama was around every corner, and not feeling tense at any given moment. So happy was I, enjoying my own life for the first time in too long to remember, that any threat to that enjoyment brings me down further and faster than I would like.

What Therapist NC told me today is that I need to accept it. All of it. Accept that C is a challenge and always will be. Accept that I’m frazzled and fried and maybe am not capable of having a good relationship with C. Accept that I can’t fix everything. Accept, accept, accept. But don’t go so far into acceptance that it crosses the line into giving up and giving in.

Just where is that line? I admit I don’t really know. I have been badgered by the reality of life with C for so long that while part of me understands I suffer from compassion fatigue, the other part still thinks I can fix (or could have fixed) all of it. On one hand, I moved mountains for this kid, I know I did. I did everything humanly possible to prepare him for this life of his. I did all the things, I know that. On the surface, I can look at it all and know. But what I wonder, deep down, is if in doing all the things, I somehow lost sight of just being C’s Mom, and if that somehow had some effect on where we are now.

And there it is, that self doubt at which I am exceptionally skilled. NC says parents of kids in residential treatment think their kid will either come home totally changed or that their kid is incapable of change. I don’t believe I fall into either camp, really, because I still maintain that I’m the one I expected to change. Whether I changed too much or not at all, I’m not sure, but I know I’m the one I’m most frustrated with. One way or another, I think I expected too much, and mostly of myself.

Today NC middle-named me. Yes, he *actually* middle named me. Right before he told me I am good enough, I have done enough. In perhaps the most therapy-ish moment I’ve ever had with him, he said these words to me. And then he repeated them. And then again. I suppose I needed to hear them. The trick now is to believe them, even way deep down.

April 15, 2019 at 11:29 pm 2 comments

Tears and Fears

Things have not been All Quiet on the Western Front, truth be told. The adjustment to having C home has been difficult to say the least, and his ability to slip back into old habits has proved exceptional. This I did not really expect.

Adding to the challenge has been my realization that the person I really hoped would change in the last seven months was me. I guess I thought C’s arrival home would bring with it a completely clean slate. Instead of feeling like I’m living with the dog that’s been biting me for years, I hoped the walls were gone and I wouldn’t have to protect myself.

It has not been so.

I have had a harder time with C being home than anyone else in the house, C included. For so long, I sacrificed so much that I often feel I have nothing left to give. The well feels dry. And that results in more detachment than I think is good for a parent-child relationship. Couple that with the sense that I have to guard myself with C in order to survive emotionally, and I’m left with something that feels less than good. There’s no fun there, no joy, no playfulness.

But here’s the thing. After a horrible weekend of many tears and fantasies of escape on my part, I arrived at the difficult conclusion that maybe I just can’t co-exist with C. I went from a 10 on the happy scale to a 2 in the span of a week of him being home. It shocked me how quickly and dramatically that happened. Yes, it’s early days, but I feel like I perhaps don’t know how to be happy if C is in the house. And then the guilt piles on, because let’s face it, what mother feels this way? Apparently this one does, and that leaves me feeling like I’m circling the drain. It’s a vicious cycle.

After a weepy message that resulted in urging from Therapist NC, I dragged my sorry self into therapy yesterday and laid it all out. The pain, the guilt, the frustration. All the dark feelings that make me feel like a monster. It was perhaps the most honest, intense session I have had, and there have been some doozies in the time I’ve been working with him. I figured I had nothing left to lose.

I left there in zombie mode, and that lasted the rest of the day. I felt drained and empty, but surprisingly calm after days of turmoil. I went to bed and slept better than I’ve slept in a week. And what do you know? I woke up this morning feeling better. I wonder if just by talking it out, and almost getting “permission” from him to feel the way I feel, it took some of the power of those feelings away. It’s almost as if by admitting all the horrible things and not being immediately struck down by lightning, I realized that maybe I don’t quite feel the way I think I do.

And that gives me some hope. Some hope that perhaps just by giving voice to all of this I can perhaps move past it. I know my relationship with C will never be easy and straightforward, but maybe – just maybe – it can be better instead of worse or even non-existent. There is a glimmer of peace in my heart and head again, and I welcome it so.

April 4, 2019 at 1:39 am 2 comments

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

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