15th April 2019

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I just can’t physically make myself ring my dr’s surgery and get an appointment. The anxiety is so bad… I just can’t make myself do it.

I have a meeting with the people who will decide if I’m disabled enough to get help from the government, this week. I only found out about it today, so it wasn’t to blame for this latest spike in my depression and anxiety and what-have-you, but it’s not helping, either.

It’s too late to ring my dr tonight… I need to do it tomorrow.

I can’t.

Will this ever end.

14th April 2019

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CW (Content Warning: suicidal ideation, self-harm, suicide):

Yesterday was the first day in a while that I woke up and felt like I wanted to die. It was beyond the feeling of wishing I didn’t exist anymore–that feeling is an old friend, and I try not to let it bother me too much–no, yesterday, I actively felt the urge to harm myself.

I don’t usually go into this much detail, but I need to get it off my prefrontal lobe (I’m out of practice, uni was 2 years ago, but let’s pretend that’s where the synapses for our current thoughts reside). I’m gonna give another content warning here, because this is about to get graphic.

When I woke up yesterday, I was overwhelmed by visions of me stabbing myself with a variety of rusty farming/maintenance tools. I used my own hands to drive wood-handled weapons (they were being used as weapons, anyway) that I don’t even know the names of, into my eyes, ears, neck, stomach, throat. I saw myself in a quiet, abandoned barn, far away from curious stares or offers of help, removing my vision, hearing, and eventually my life, forever. I felt sad (just sad–not depressed, or miserable, or like crying–just a normal, low-level sadness) during the stabbing portion of my thoughts, coupled with a bone-weary exhaustion. There was a flicker of anxiety (when do I *not* experience at least a flicker of anxiety?) that I might be too weak or tired to finish what I was doing, which spurred me on to finish the job.

(Looking back, I am rather taken aback by the undeniable normality of my feelings and responses: sadness at a regrettable event, a little anxiety that actually helps one to complete their task, rather than the debilitating type I typically suffer, etc. Such “normal” responses to such an abnormal situation… ordinarily, it happens the other way around, and I’m crippled by a minor setback that most people would hardly notice. Anyways. I digress.)

As the anxiety sparked a final push of energy, I imagined driving the final blade through my own neck, nearly severing it on one side, I felt such intense relief and even a frisson of pleasure. I saw myself topple to the ground, my body torn and raw in places, bright red blood already drying to the colour of tea stains in the bottom of an old mug (drying on clothing I don’t own, by the way–I don’t know if I’ve ever bought a flannel shirt and a pair of pale, straight-leg jeans). My hair was long, like it was until about 7 years ago (I still mourn my hair–like Jo March in “Little Women,” it was “my one beauty”) and I seemed a little heavier than I am, now.

Parsing through the memories of those thoughts, I suppose I might’ve been looking at me when I was about 17: starting to lose a little weight (which I gained back, never actually hitting a “normal” weight until hyperemesis with my 1st pregnancy) still with waist-length, curly brown hair, wearing some male relative’s clothing, and in a rural community not unlike the one where I grew up. I was near the sea, though. I never lived near the sea until moving to the UK… which I did at 19. 19-year-old me, a little slimmer than I actually was, then? So odd.

This wasn’t a dream–I was definitely awake–but it really knocked me, to have such an intense, self-harming…. vision?… out of nowhere, before I’d even sat up in bed. I was a little off with Hubs, yesterday. I suppose this explains that, to some extent.

I wonder if it’s time to increase my antidepressant. Or change meds, or request some talking therapy. I feel a little flat, a little worn-down, lately, and I’ve had a cold for a week or so… I didn’t think I was getting BAD again, though.

Maybe it’s just April. This is my least favourite month. Or–my chronic pain has been worse, lately. Maybe this is a stress response caused by intense physical pain, and I don’t want to kill myself, I just want to kill the pain/stop hurting. Then again–that’s what most suicides are.

And maybe I should go see my doctor.

10th April 2019

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Today I want to share a blog entry from “non-verbal” autistic teenager Henry, who uses AAC to communicate. I believe he’s no longer a teenager and no longer blogging, now (or not blogging on this platform) but he makes excellent points about the need for AAC.

I wish someone had offered us AAC when my little girl lost all her words. Maybe she wouldn’t have been silent for so long, if we had helped her when she was 18 months old, instead of crying about her speech regression. (Don’t get me wrong–it’s STILL sad to me, when I go days without hearing her beautiful voice–but that’s *my* pain, and as her mother, I have no right to make her aware of, or responsible for, that pain.)

My son started talking when he wanted to (age 3) and despite obvious delays and the heavy use of scripted language (which sometimes requires an interpreter, for lack of a better word) I’m not sure he’d have ever used AAC. But–I wish we had known that was an option, I wish we could’ve made him aware that it was an option, and then, the choice would have been his, not society’s.

But don’t take my word for how necessary AAC is. Take Henry’s:

https://rosesareredforautism.wordpress.com/

9th April 2019

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Wow. I feel like I’ve let my team down–I was going to try and post every other day, this month. That is not going well.

However, I had forgotten that the kids are on Easter break, at the minute. I have been refereeing 2 high-needs autistic kids (most autistic people have high needs, to be honest–all I’m saying there is, my kids are obviously autistic in a way that makes it a little easier to qualify for support) and trying to do battle with an astonishingly bad cold + sore throat. (I’ve lost my voice, unless I talk in an unvarying monotone about an octave below my usual lower range… it’s great, I literally sound like a robotic dude who can’t show any emotion or alter my volume at all.)

I digress.

My kids are wonderful. They really are, and I spend a lot of time these days feeling awful about all the times I invaded their privacy, by posting on the internet about their meltdowns and toileting needs and self-harm and other things. I didn’t know any better; I thought it was okay, because in so many cases, I was posting about my own childhood and adolescent struggles, as well. Even now, I probably go too far sometimes, because there is SO MUCH overlap between the way my kids are, and the way I was/am.

I mean, I was an adult before I learned how to make eye contact, and it still physically hurts, most of the time; I couldn’t put on my own socks until I was older than my “severely autistic” daughter, who, at age 12, can put her own socks on. My son (diagnosis of classic autism as well, but in the USA he would qualify for Level 2 Support, not my daughter’s Level 3 Support) uses zippers and buttons more effectively than I can. My daughter and I can barely sleep–my son seems to sleep fine. My son and I can speak, although we need some help being interpreted–my daughter is functionally non-verbal.

My IQ has never tested lower than 122 (self-test) and never higher than 145 (let’s split the difference and say it’s around 130, shall we?) and I have a first-class science degree from a British university, but I can’t walk outside alone because my social deficits have led to a lifetime of bullying and genuine fear for my own safety. My kids don’t cooperate well enough to test their IQs, and they currently attend a school which will, eventually, offer them the chance to get 2 or 3 A-levels (4 A-levels is roughly the equivalent of a high school diploma, in the States) but they are confident, excited people who have never been ostracised for being different, who fly out the front door and head down the street without hesitation if I say we’re going to the playground.

In short, our experiences are very similar, and also, very different. That’s autism, to be fair. We autistic people all have very similar, very different experiences and reactions. (Just like neurotypical people.)

For all that my kids and I have faced similar challenges and I *know* how rough being autistic can be, I hope they know how loved and amazing and beautiful they are. YES, being a parent is the hardest job on the planet; YES, autism brings its own challenges to the situation; YES, there are things my kids might struggle with less, were they not autistic; but I would not change my kids for anything. I hope they understand that, and I hope that when they are my age, they will love themselves the way I love them, regardless of their unique struggles.

Final note, summarizing the “who has it worse, me or my kids” question (which isn’t a good question anyway): it’s called the autistic spectrum for a reason–it is a spectrum–but it’s not linear. It’s more like a sphere, and we all have “high” and “low” points on it, regardless of cognitive ability. I am great with language (at least, written language and one-to-one conversation) but terrible at motor skills and perception, and somewhat bad at sensory filter and executive function. Rebecca Burgess has done one of the best graphics I’ve seen, which explains her “high” and “low” functioning areas… please, try to keep this graphic in mind, when thinking/talking about autism:


4th April 2019

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I’ve decided the way I’m going to approach this month is to alternate between negative and positive posts.

Today’s post is about Ido Kedar. He’s a young adult, I believe (20ish?) who spent the first half of his life classed as non-verbal. Because he couldn’t speak with his mouth and had motor difficulties which made it hard for him to type, use sign language, etc, “professionals” assumed Ido was much less capable than he actually is.

The post below is from his blog, and features a link to a podcast about the ways researchers are now trying to explore the experiences of so-called “low-functioning” or “non-verbal” autistic people. Ido participates by using Augmentative and Alternative Communication (AAC).

This is just one of the many reasons we should always presume competence/understanding/the ability to make choices, even in young children or people who struggle to communicate in more typical ways.

http://idoinautismland.com/?p=808

2nd April 2019

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Autism Awareness Month:

This is always a hard month for those of us who are autistic, or for parents who love their autistic kids. This month has been turned into a fund-raising event for Autism Speaks, an organisation with a TERRIBLE human rights record, which exists primarily to make money for its board, and also, to fund research into eradicating autism.

The only way to get rid of autism, is to get rid of autistic people.

I’ll say that one more time: the only way to get rid of autism, is to get rid of autistic people.

Autism like being left-handed, or being gay, or having red hair–these are things you can hide, but they are always a part of you. Denying that, trying to eradicate it from yourself, can only cause harm. In coming weeks, I hope to talk about “masking” and how harmful it is to autistics; it is, essentially, the same thing as left-handed people being forced to write with their right hand, and it causes untold psychological damage (bed-wetting, regression to a younger age, meltdowns which are sometimes mistaken for behavioural problems, PTSD, etc).

This month, I hope to share some links about autism, and I’m going to start with the history of Autism Speaks. You can find many posts on this subject, especially within the autistic community, but this one is relatively short and the links to Autism Speaks videos seem to work, so this is a good introduction.

Some of this is harrowing–one video made by Autism Speaks features a “mother” (I use the term loosely) who talks about wanting to commit child murder IN FRONT OF HER CHILD, for one thing–so be gentle with yourself:

https://swirlymind.wordpress.com/2017/03/11/please-dont-support-autism-speaks/

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.