Spoons (1st Draft–Sloppy)

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“Spoons”

They scoop a little energy, like porridge to a waiting mouth.
Invisible, yet rationed—and when we’re out, we’re out.

One spoon might equal waking after 16 hours’ sleep.
Another three might get me bathed; one more, a cup of tea.

To dress my kids? A dozen, on the days their spoons are low.
On other days, just 2 or 3—depletion still, but slow.

I recall the spoons for making up a smoky gothic eye,
Or scarlet lips and glitter blush… those times have passed me by.

Now, at best, it’s a long-sleeved t-shirt, paired with joggers loaned by Hubs,
Add a cardigan as shivers wrack this girl that winters loved.

To leave the house takes courage even more than it takes spoons;
I look a fright, a gruesome sight—I  used to make men swoon.

But agonies of pain and fear, that robbed my carefree ways,
Have left no more than a spoon or two, at the close of my best days.

And today? Was not a good one. I was back in bed by noon,
As the spasms twist, my only wish: let this be over soon.

And I know you can’t all see it—the pit of pain inside,
But I’ve told you how I feel, and there’s no need to be snide.

And if seeing were believing, well: you can see my muscles, taut,
You can see my jawline, tight with pain, hear my breathing, laboured, fraught.

And if you’ve anything to say, oh, I hope it will be kind;
A sarcastic jibe, a diatribe? Those should be left behind.

So be careful of your clever words, your judgments harsh, contrived;
For I’m all out of spoons, today—and all I’ve left is knives.

Autistic Apraxia

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That’s a new term, for me; I learned it today, and spent the afternoon crying (off and on) because I think my daughter may have it, and I didn’t know, and we didn’t get her assessed for it, and she struggles so much with language and I haven’t known how to help her, all these years.

When she was a completely non-verbal toddler, Speech and Language tried to get me to ignore her; “You anticipate her needs so well,” they said. “We’ve never seen any parent understand what their non-verbal child wants the way you do. How do you do it?”

I couldn’t explain it… she’s my darling. Of course I can read her. That’s my only real job, in this life–to love and support my kids.

“You actually anticipate her too much,” they continued. “If you could make her wait a little longer, make her ‘ask’ for things non-verbally, for example by making eye contact with you, it might encourage her to speak.”

I *said* she couldn’t speak. I *told* them. I’ve been telling everyone that she can’t do it (except her; her, I tell she can speak, she’s got a beautiful voice, I love hearing it, and I don’t ever point out how she muddles words and her voice is garbled and she sometimes can’t force even a garbled half-word through her lips; I loved it when, age 4, she learned to say “fish” and what she actually said was “boosh”).

No one offered us anything, other than Picture Exchange and a lanyard with little pictures she can select to indicate what she wants (she CAN select them… as of THIS year…. she is 12). I tried, a little, for a little while, to ignore her into speaking. But I’m not a monster–I was utterly incapable of ignoring my baby’s needs, just like I could never “just ignore” her round-the-clock (yes, literally) crying as a baby.

Who are these people? How can this be “neurotypical”? How can anyone, with any empathy at all, claim we’re the ones without it, when they treat us like this?

I’m so sorry, Naomi. I didn’t know what to do. I’ll research, I’ll find communication aids, I’ll find specialists, I’ll do better. Mommy loves you so much. I’ll do everything I can, to get you whatever you need.

Sorry!

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So… applying for benefits for myself went about as I expected it would:

The government department that pays me 2 separate payments, each month, 1 per child, and has done so for the last 7 years, doesn’t know who I am. I find this unlikely, and just more proof of the lengths this government will go to, to avoid paying vulnerable people enough to live on.

The thing is, I can’t prove my married name–I need a passport in my new name to change my residence permit, and I’ve lost my passport (I’m a foreign national, remember). And do I have the funds to travel to the American Embassy in London to get a new one? Maybe I would, if I’d been claiming the payments I qualify for, for all these years…. c’est la vie.

We soldier on. But I had a pure autistic meltdown (several, actually) in the weeks following my last blog post; I’m sad to say, I did spend a few days contemplating whether it would just be easier and better to kill myself. (I always hope those days are behind me, but somehow, they never are.) I’m sorry I disappeared, but survival is all you can manage, some days.

On the plus side, I’ve stumbled across the autistic Twitter community, and the amount of support I’ve found there is unprecedented. Expressing myself well in 140 characters is a challenge, but one that’s actually helpful, to me–I do have a tendency to waffle on, and a lesson in brevity never hurts. I just wish my brain didn’t reset and send my train of thought every which way when I move to start a new Tweet in a long thread…. I hope I improve at staying on topic, but I’m 35, rather old for the learning and performance of new tricks. We shall see.

I hope you all, my dear readers, are happy and healthy. Thanks for sticking around, erratic as I am–it makes me feel a little less alone to know that I have readers who come back time and time again, to read my musings.

Disability Payments

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After 10 years or more of realising I’m disabled, I’m finally going to do it. I’m finally going to apply for government assistance (benefits or welfare, you might know that as) so I can have some quality of life, and get some help for my various and debilitating care needs.

In time, I hope to be able to refurbish my house, so that I don’t have to bend–if I never had to lean and pick anything up, my back would go out less frequently, and I could reduce my reliance on strong painkillers, which would result in my having more energy and thinking more clearly. This would likely make a return to higher education more feasible, which could, in turn, eventually lead to a paying job that I could work from home (that’s the absolute pinnacle of the dream, anyway).

For my autism and social anxiety, I would love a service animal. I have never felt utterly terrified when stroking a dog, but I would need one that was incapable of jumping up, barking excitedly, etc, as my little girl is terrified of dogs… I’m only going to be able to afford an animal like that, if it’s a government-sponsored deal.

With a service animal, could I even work outside the home, one day? Not to spout a cliché, but stranger things have happened.

Most of all, my husband could feel better about his reduced hours at work (he went from working full-time to part-time, in order to help take care of me and my kids, also both autistic) and whilst he’s happy to do it (and knows we’re all safer with him here–they can’t physically attack me if he stands between us, etc) he worries an extraordinary amount about the money we have (or don’t have, really) coming in. If I could take a load off of his mind, I would consider that only fair.

He’s the reason that, for the first time in my life, all my short stories and blog entries seem to have happy endings.

13th January, 2019 (Suicide)

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I was on Twitter, today (never a great idea, when controversial topics are being thrown about…). I managed to read a beautifully written, poignant account of one man’s struggle to keep his friend from committing suicide.

He lost the battle. They both did, I guess–his friend had saved his life a year earlier, and they had leaned on each other for support, but eventually, it wasn’t enough for the older of the 2 men. Despite multiple calls each day, and lots of empathy and talking therapy, this terminally ill, soon-to-die man took the final step himself.

Most people who read the story were concerned for the surviving friend (especially as he’s also a pretty high suicide risk) but there’s always one, isn’t there? One person always stands up and tells everyone else why they’re ALL wrong, and someone did. “How can you all say this is okay? If it had been me,” they glibly Tweeted, evidently without reading any of the actual history between the 2 men, or the surviving friend’s tireless vigil, “I would have done everything I could, to stop this from happening.”

Well, no, sweetheart. You wouldn’t have. You would NOT have been on the phone multiple times a day, risking your job and your own sanity. You wouldn’t have given the unconditional, positive regard that lets people know they can really open up to you, without fear of judgment… the regard that has postponed so many suicides, and prevented some deliberate losses of life forever.

You sure as shit wouldn’t have given the guy a piece of your liver, so that he could continue drinking himself to death slowly, would you? No. Of course not. And if you would have, there’s not a surgeon in the world who would’ve taken those odds and performed the surgery. So… what *would* you have done?

My guess is, you would’ve shouted at this end-of-life liver failure patient to get his life together–about 10 years too late–and then, after screaming at him for 2 or 3 phone calls, you’d have washed your hands of it. All you’d have done, would be make a dying man feel worse.

Shame. On. You.

All the love in the world to the surviving friend, who put his career, his very new romantic relationship, and his own well-being on hold, to figuratively hold the hand of a dying friend who had done the same for him. This is what makes the world a place worth living in… people who can look past their own needs, and the fear of their own mortality, to be there for someone in the most dire of circumstances. This is what makes us special, among the other animals–the ability to communicate gently, with understanding, with compassion and love, in all kinds of extremity. We would be so much less than human, without the ability to love others at least as much as we love ourselves.

Everyone probably gets tired of hearing this from me, but if you need to talk to someone WITHOUT JUDGEMENT:

Samaritans (UK only): freephone 116 123
Samaritans email (Worldwide): jo@samaritans.org

Those are not only numbers for suicidal folk–most of the callers are lonely, anxious, depressed, at their wits’ end, self-harming, or even just old and isolated–but by all means, if you’re suicidal and want to talk about it, rather than being told why you just shouldn’t be, please contact Samaritans. The understanding really helps.

12th(?) January, 2019

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I can’t believe I’ve kept writing in this blog–however sporadically–until I now spend more of my time feeling “super” than “depressed”… it’s vaguely fantastical, to think that I can type that, today.

Not that I didn’t have a major episode of anxiety and suicidal ideation last summer; but those are par for the course, with me. The important point is that those are fewer and farther between these days, even if when they come, it’s always the same shit on a different day: sleeping 2-3 hours or less per day; perpetual feeling of terror, of something catastrophic that is imminent and unavoidable; self-harm just to switch my brain off and take a nap; the unshakable conviction that everyone I love would be better off without me; a return to higher doses of antidepressants and, if I’m lucky and have an understanding GP, a round of sleeping pills to reset the internal mechanisms that have sprung so wildly off their tracks… and then several weeks of that fragile, almost newborn feeling: not sad, not happy, but intensively sensitive and at the same time removed, as if I know I’ll never form proper memories of this time, and so I won’t have to contend more than once with anything that happens during it.

I’m thinking of returning to university, later this year. As it turns out, even a 1st class degree in psychology is good for literally nothing, unless you’ve got clinical experience as well (I have not). And aside from the suicide prevention helpline, I’ve not even found a volunteer post that’s related to my field of study… so. It seems I should return to the drawing board, as it were, and go from there. One question remains: do I return to psychology, or my first love–language and literature?

No one ever comments on my blog, but I’d love to hear anyone’s thoughts. Hit me up. And have a good January… I seem to be having one, somehow.

A Brief Bio, 3rd January 2019

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I posted this elsewhere, and I thought it might go nicely here:

As an adult (and during the diagnoses of my 2 children with autism) I realised my “quirks” were, at least in part, due to my undiagnosed autistic spectrum disorder. Struggling through a world made for NT folk has left me with serious anxiety, depression, and other issues; it has not stopped me from achieving a BSc, parenting my 2 lovely kids, volunteering for a suicide prevention helpline, nor getting married to my wonderful husband… but it can make me a bit much at parties, what with the run-on monologuing, misunderstanding of personal boundaries/private information, and debilitating social anxiety.

I have one parent and at least one sibling with Type I Bipolar; my other parent has undiagnosed HFA (never spoke until age 3; inability to grasp abstract concepts; special interests; uncontrolled mood swings, especially when outside routine situations; terror of social situations; trouble understanding the difference between private and public info; visual stimming… all traits my children and I share).

Luckily for me, my mom and I share a special interest (reading for both of us, and in my case, creative writing and journaling) and that helps me cope. I can escape into books, poems, short stories, movies, or videogames; and when the pressure is too much internally, I can write about my feelings and the effects of my ASD, which usually lets off enough steam to keep me coping.

Emotional/mental challenges are the bane of my life, but I’m also in limbo waiting for tests re: some physical symptoms unexplained by my anxiety or depression. In no particular order, the 3 things I would most like to know are: can anything make my sciatica significantly better, aside from pills I don’t care for; what would my life have been like, if I’d seen an autism specialist (NOT an ABA salesperson) when I was trapped in puberty; and will I ever finish a collection of stories good enough to publish?

I am recovering from a childhood and adolescence spent in a fundamentalist Christian home, with added elements of child abuse and psychological trauma. I practice mindfulness meditation, journaling (as I said above) and the fine art of trying not to lose my damn temper. Autistic meltdowns are *much* more forgivable in children than in plump middle-aged women who look relatively self-contained… right up until the moment the cup runneth over.

Christmas, 2018

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It was wonderful.

I was so, so ill, both on the day and for about 10 days before. (I’m still coughing fire, sometimes hard enough to wet myself… gotta love stress incontinence, amiright?)

New Husband Jake sorted everything out. I did a 2-hour shift on Christmas morning at the suicide prevention hotline, and then, I basically slept until an hour before the kids came back from their dad’s. (We alternate; it was his year to have them Christmas Eve and Christmas morning, and mine to have them Christmas afternoon and overnight.)

While I slept on the couch, Jake finished wrapping their presents, cleaning their rooms, rearranging furniture (including building new beds and hooking up new electronics) and he brought me coffee and cold & flu tablets when I finally woke up.

The kids–sometimes overwhelmed by Christmas–utterly loved their gifts, especially the lay-outs of their “new” rooms, and for the first time in my life (including my own childhood) I witnessed a Christmas with no child meltdowns.

I am so, so blessed. I have never been this happy before, and yet, I feel like overall, I am becoming happier.

I love you, Jake. I love you, Sweet Babies. Thank you for making this life worthwhile.