Recent Memories, September 2018, 1


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His hazel eyes gazing up at me, crinkled at the corners, so like mine except for the colour, fringed with thick black lashes that belie the pale, wheaty brown, almost blonde, of his jaw-length hair. “Mommy!” he shrieks delightedly, with enough excitement for a boy half his age, “You PRANKED me!” A simple prank, just waiting until he wasn’t looking and tossing a pillow at him, and well worth the risk of upsetting him; he is literally vibrating with joy, his laughter and excited fidgeting causing him to visibly quiver in front of me.

Her still, watchful stare, huge irises a pale ice blue that used to look as if the colour were bleeding into her sclera–she leans into me, and I realise, after a breathless second, that she is leaning against me for a hug. I cuddle her back, I tell her she’s a sweet girl. “Who does Mommy love?” I ask–it’s been a long time since I felt the mood was right, to ask her that question–I’ve timed it well, she smiles a little, and points at herself, using the thumb of her right hand (is she the only person I know, who regularly points with her non-dominant hand?).

They rely so much on non-verbal cues, and I rely so much on explicit, spelled-out, unchanging instructions. How ironic, that one form my autistic spectrum issues should take, is an obsession with words… and she’s non-verbal (not literally, but in the sense it’s usually used, nowadays) and he chatters on about anything and everything, and it’s funny and engaging and he delights me at least as much as I delight him, but there is very little verbal instruction given, between the pair of them.

Every day is a balancing act, and I feel like I lose my balance so often… but actually, I’m better at walking this tightrope than anyone else I’ve ever seen, with the kids.

My own mother would be excellent, of course. She walked a similar tightrope with me, when I used inflection-less, seemingly sarcastic words without any eye contact at all, and she somehow understood that I wasn’t being snide or sarcastic; I was just saying the words, as if reading them from a page in a book, but not acting them at all.

I’m better at the acting part, now. Sometimes I get the inflections right; how very amusing, in a cosmic joke sort of way, that Gabriel especially and even Naomi, more often than you’d believe–the really autistic members of the household, versus me with my probably Asperger’s or HFA, we’ll know soon enough–that the “more” autistic members of our little family, often give me a better idea of how the words ought to sound.

They’re good mimics, like I was/am. Echolalic, though in Nae’s case, not as much as I was (am…). Scripted language, Gabey uses as much scripted language as I ever did, maybe more, but I think his acting is better than mine was. It helps. It all helps. And when they get it wrong, and I see myself in their mistakes, it’s easier to see how to fix it.

Again, this is one of the most constant sources of amusement in my life: by being so unusual themselves, they have made me almost normal… at least on the outside.

Memories, September 2018, 1


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He poked me in the face, that first day. D___ had chuckled at something he had said, and I caught D___’s eye and smiled a little, trying to walk a balance between them, and he poked me–4 or 5 times, just under each eye, not quite hard enough to bruise–and I “slapped” his face (not hard enough to leave any mark, never mind a bruise) and told him that if he ever did it again, we were over.

There was the time we were having a good-natured, playful argument, and he picked up a pizza and “playfully” rubbed it into my face. I stood up, walked silently to the shower, and didn’t speak for several minutes. It was in jest, and he hadn’t struck me; it didn’t count, did it?

The times (plural) he followed me from room to room, shouting at me, and when I refused to engage, he loomed over me, using his extra 9 inches of height and exponentially stronger voice to full advantage. One time, he even admitted he was trying to goad me into hitting him.

The same in the car, the raving at me for anything and everything, too many times. Shouting at me for not being a better navigator, until I was sobbing in helpless fury, while he was driving us somewhere. Handing me his phone despite my protests that I can’t read maps–he never offered to show me how, because he’s rubbish at reading them as well, but his vanity won’t let him admit it–and then snatching it back, shouting, “Don’t touch anything!” when I tried to zoom in, to read the street signs.

The car again, ignoring first my pleas to let me out, and later, my warning that if he didn’t either let me out or stop screaming at me, I’d hit him. Eventually I did–the same way I did it the first time, when he poked me, not leaving any signs I had touched him–and he blacked my eye. It was swollen nearly shut for a week, and purple and green for 2 weeks on top of that.

I won’t talk about the time we “had sex” that I mostly don’t remember, when I’d had 100 mg of Sertraline, 300 mg of tramadol hydrochloride plus paracetamol and ibuprofen in the 12 hours before going out, and 4 glasses of red wine in 4 hours, but he was perfectly sober… I remember coming to underneath him, which is so unlike me–why wasn’t I on top, especially drunk, disinhibited?–but I do remember flirting with him in the other room, even brushing my foot across his (fully clothed) crotch, and asking someone else if I should have sex with him… I must have consented, even propositioned him, after an entire summer of explaining over and over again that I wanted to be friends and turning down his advances, AND already having fought off the unwelcome advances of another friend, who told me he needed a friend to talk to, led me around the corner from the doormen of the club, and forced his teeth and tongue into my mouth while he held me, struggling, against a brick wall.

I’m sure that if I’d wanted to say no–after repeatedly begging these 2 “good friends” of mine (and longer-term, better friends of each other) to just BE MY FRIEND over the course of several months–I would have done.

I think he thinks I miss him, and that’s why I had to stop talking to him. I think there’s some part of him that thinks I’m not over him… that might be true enough, but not in the way he thinks.

The only thing I’m not over, is how I could have allowed myself to be used, so many times, and still believed all the bullshit he spouted at me. Was I born that naïve, or did I learn it, somehow? All the signs were there, and he wasn’t the first man to work up to blacking my eye, over a period of months/years… I do not know what I will do, if that ever happens to me again.

Sometimes, statistics are true. Some conditions (ASD, in my case) make you so much more vulnerable than you realise, at the time.

A Link to “Supporting Claimants: a practical guide by Jay Watts”


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This is important to me, and it’s excellent advice for health-and-social-care workers in the UK. It is also (am I giving a trigger warning?) harrowing reading, if you have a little imagination and read it thoughtfully.

I periodically fill these forms in for my own beautiful, beloved children–40-odd pages, covered in questions which instruct me, in various ways: “Tell us, as explicitly as possible, how broken and helpless and developmentally stunted your children are. Give us as many grim details as you can, think of everything you and your children just endure bravely, all the things you just accept and try not to dwell on, in your everyday lives… Now describe that all in excruciating, minute detail, and remember to be honest about the emotional strain caused to both you, and your children.”

The respite is never more than a year or two, before they’re asking me to claim again, answer questions by phone, clarify something. I suffer from anxiety and depression anyway; spending hours fixated on the reality of all the struggles my children face… well. It usually takes me a week or more to complete the forms, and at the end of it, I feel as if the government would prefer me to kill myself and my children too, rather than give us money to live on. That’s not hyperbole or the disordered thinking of a depressed mental state: in a rational frame of mind, regularly taking my antidepressants, after a good night’s sleep and some tea and toast, I genuinely believe most high-ranking officials in this government would prefer our deaths–even by murder/suicide–to our continued survival, as long as the blame didn’t fall on them.

I remember the last telephone conversation I had with the DWP. I was asked if my autistic, non-verbal, self-harming, incontinent overnight (both bowel and bladder) 11-year-old could just change her own nappy, and why did I have to be awake in the middle of the night to help her?

When I described her efforts to clean herself, the things she understands (she needs to be clean, she doesn’t want to smell) and the things she doesn’t understand no matter how many times I show her, walk her through it, remind her (how to clean herself properly, how to make sure the poop is disposed of hygienically) when I spoke of how she sometimes grows frustrated and hits herself during self-care tasks, and how the last time I let her clean herself for a few days, to help her learn, to try to give her a little privacy and independence, she got thrush (a yeast infection, we’d call it back home) from repeatedly, clumsily, uncomprehendingly cleaning poop into her vagina, I broke down sobbing.

I cannot imagine how much worse it would be, were I claiming for myself; like most mothers, I’m willing to suffer intrusive questions and beg for mercy and cajole and plead for my children, in a way that I wouldn’t be able to find the energy for, if it were just to help me. I am unsurprised that, in the face of the increasing harassment of disabled people in this country, suicide rates in the disabled population are rising (and have been, since this party took over the government). Anyway. I digress, or at the very least, I’m growing long-winded.

Perhaps I should have just shared the following link without any introduction; I could write another 750 words on this, and still have more to say, so what was even the point of sharing this much; but it seemed important to tell you, and especially my new readers, why I care so much.

The article I’m linking you to isn’t about some hypothetical, pitiable, but ultimately distant human beings I’ll never have to look at. It’s my own sweet babies, their futures, what would happen to them if something happened to me, it’s about the system that would swallow them up and maybe, maybe look after them–and maybe leave them to their own devices, scared and unsafe and unable to properly clean themselves, each of them a constant fire risk, a risk to themselves when their ungovernable, autistic meltdown rages send them into a fury of self-harm, of dashing their heads against walls, of my little boy trying to hurl himself down the stairs, because (as an actual example) there was an unskippable ad (commercial) that interrupted his favourite YouTube channel.

It is so hard to keep them safe, clean, fed, even when I am with them 24 hours a day. It is natural that I live in a state of recurrent terror of what would happen to them, if I were no longer here; how could they navigate the welfare system, themselves?

Mental Health Update, September 2018, 1


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Should’ve written before now.

The thing about looking in the mirror after a bath or shower, is that I can see the smears of black and grey below my eyes, where my mascara and/or eyeliner has melted; the worse thing, is that I’m pretty sure I actually look better with smudged, clownish, day-old make-up gathering in the tiny creases there, than with no make-up at all.

Do I look so old, at 34, that even the half-destroyed remnants of yesterday’s cosmetics look better than my clean, freshly washed face? Where did all these lines–mostly fine, but some not–even *come* from?

When did my high cheekbones and readily-flushed face start to look fat and maybe as if I have a drinking problem, rather than sculpted and youthful? Have I looked like this all along? In fact:

Was I *ever* pretty? I gave up on being beautiful a long time ago–or I thought I had–but now, I doubt that I was ever even genuinely pretty, the way everyone is, before a certain age.

I think these silly, useless, vain thoughts, and I add more wrinkles (I can feel the skin creasing) between my brows, and I laugh, just a little, at myself. I will be 35 soon, and my ex-husband is 39 sooner, and my children are 10 and 12, and my parents are well into (if not past?) middle-age, and one of the four is dead already. My natural grandparents, save one, all died years ago.

This is life, I think to myself. “The slow, inexorable march… to the grave,” as someone cheerily wrote before me (no, wretched brain, I see you evidently will *not* deign to recall where you heard it, nor from whom). No matter. That is what all this is–only a passage from birth to death, and why should I care if my crows’ feet are worse than my mother’s were, at my age?

(Not fair, not fair, she’s smoked 2-4 packs of cigarettes every day of her life since before I was born, I’ve never smoked beyond taking a drag off a friend’s cigarette now and again in my teens and early 20s to confound people who KNOW how anti-smoking I am, why should my skin be mottled with acne scars and rosacea and surgical cuts from boils that had to be excised in a doctor’s office, why should I have lip lines at all, why should a single glass of wine–taken no more than 5 or 6 occasions per year, and most years, less often than that–flush my face beetroot, and stain my teeth, which used to be so lovely and white and are now just pale beige, despite my still brushing them 2-3 times each day… )

Shush, now, I tell myself, trying for the firm, yet somehow still gentle, endlessly soothing tone you would use with a small, slightly hysterical but generally good-natured child, that you love with all your heart. Shhh. It will be alright. You are far from home and you are older every day, but you love, have loved, will continue to love, and you are loved in return. Can you doubt it? 

And even I cannot.

Shhh, there now. It will be alright.

Mental Health Update, August 2018, 6


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A little dip is to be expected; school starts again soon; ringing about transport (where is the letter we should have received a week ago?) new uniforms, new shoes, and psyching myself up to actually wake before 7:30 each morning, all take their toll.

My sweet babies, my darlings. They’re nervous about going back, as well. Summer flew past so quickly this year, and they lost me for a fortnight of it. Guilt will not help me to parent them any more successfully–rather, it is almost certainly a hindrance.

Breathe, breathe, breathe.

The playground, today. Gabe’s friend remembering us despite the long break, and walking us home, after delighting Gabriel with his antics for the best part of an hour. (What does it say when another child remarks on my boy’s energy levels? He is so ALIVE, he is so beautiful.)

My precious, tempestuous girl, so far into puberty and adolescence now, so much a teenager in every way but actual years, wanting Squeezy, and letting me comfort her.

Being a 12-year-old girl is hard–I know, I remember, I can even now be tripped up by the things that happened when I was her age–I wish I didn’t empathise *quite* so much, some days. I worry that my empathy is sometimes excessive, and makes it worse for both of us… and yet. She let me do Squeezy, today. She let me help, when she was distressed, and she always has, really. Perhaps I’m not so terrible at being her mother.

It is typically easier with Gabriel, provided I have the energy to engage fully… but it’s just as rewarding, special, important, to interact with Naomi. I’m not trying to convince myself of that–I know it, in a way I know few other things–but I worry. If she ever finds this blog, what will she think?

The main thing I know of both my children, is that I love them more than my own life. Do they know it, though?

How many times have I said “worry” (or obliquely referred to my anxiety) in this one post? I should’ve made time for an entry yesterday, mayhap.

Breathe, breathe, breathe.

Go do a mindfulness. Don’t try to get out of your head–that’s where you live, and don’t you know it–but you can try for a little equanimity inside your head. Think (but not too deeply) about 2-3 weeks ago, and be grateful. This is imperfect, but it’s so much better than it was, and it will get even better again.

Breathe, breathe, breathe.

At this point in time, a little dip is to be expected.

Mental Health Update, August 2018, 5


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Better again, today, overall. The shadow of How I Felt Yesterday And The Day Before and the Day Before That, etc, is humming a sly, mocking tune under its breath, and I will have to stop and listen at some point (I know by now that it will trip me up, if I go too long without acknowledging what it has to say) but for now, I am safe. For now, I can breathe a little, and just take a day or two to feel like “myself”–the myself that is, for the most part, relatively content.

One good thing, I will write One Good Thing: Naomi and Gabriel, the play-acted scene where Spin was arrested. I imagine that makes no sense to anyone who wasn’t there; but I *was* there, and it’s worth a lot of misery and heartache and even some terror, just to hear them playing together.

You see, Amanda? You see. I am willing you to see.

Things always get worse, again–you won’t feel this peaceful forever–but then, they always get better, again.

Did you think, when she was 4 and had lost all her words, and he was 2 and had never so much as babbled “da” or “ma” that they would act out a scene, using full sentences and different voices and laughing with joy at each other’s antics? You didn’t dare hope, and yet, here it is.

It is objectively good, that your children enjoy each other’s company. Even when *you* don’t feel it, even when you’re too lost in your own despairing ruminations and unrelenting terrors to feel anything but pain, their relationship is A Good Thing.

And today, you lucky girl, you *could* feel it.

Mental Health Update, August 2018, 4


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Not back to normal–unless we’re taking my “normal” as “moments and even minutes of relative calm, liberally interspersed with minutes and even hours of abject terror” and I hope that’s not my fate–but I *am* better, today.

Oh, ye gods, though. The sick upward spiral of nauseating fear, and the silent scream of despair as you start to come back down. I wish I had the words, just so I could talk myself out of being afraid of the sensation itself.

Still. I went to the mall, today, and it was crowded and awful and I still had fun, in between the moments of really NOT having fun. When the kids returned from their weekend at their dad’s, I kissed my son on the top of his head, and he asked me to tie the drawstring on his shorts which was an easy thing I could do to help him, and he made me laugh, some way or other. It is worth noting that he makes me smile every day, possibly more often than any other person on Earth. My daughter spoke to me (she spoke as her imaginary friend, in not-quite her natural voice) and she was playful and funny; and if I’m tempted to complain about her putting on a persona in order to speak, I should remember that there was a time when we never thought she’d speak at all, and now, she speaks in short sentences, responds to my sentences, and makes jokes. Also, she let me cuddle her, briefly.

My husband has made me laugh at least 3 times, today. I’m the sort of person who laughs dozens of times in a day, when I’m at my best… but 2 weeks ago, I was crying dozens of times in a day, and having panic attacks, besides. Nary a laugh to be seen.

Forward progress is being made, and that’s all we have; the hope that things will be a little better tomorrow, or will stay nice for a little while, when they are nice. I shall be 35, before this year is out. I thought I might not make it that far, at earlier points in my life (not to sound melodramatic, but it’s usually best to be honest) and just the realisation that I have, gives me a little hope and a little peace and a little desire to try a little longer.

Good Lord. Reading back that last sentence, I actually sound worse than I thought I was. The “anxiety,” though… that utter, awful, unrelenting terror of nothing and everything that they call “anxiety”. I do wonder if I’ll lose the battle against it, someday. (Again, I’m just being honest.)

But. But but but. I might lose the battle, but I haven’t today. I know it’s a cliché, but there it is: I am happy I’ve made it through one more day, a little calmer overall, and that’s enough, for now.

Mental Health Update, August 2018, 3


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How can it have only been 4 days since the last entry? It feels like a fortnight, and every second of it stressful.

Waiting for an assessment with the mental health team (not to be confused with the crisis team, who already saw me) and hoping for some long-term support. I’ve been so afraid of being thought of as weird for so long, I’ve avoided getting help and to some extent, let myself get to this state; at times, even been smug about it… I’m trying to get it sorted out now, but dear God, the waiting.

Will it always be like this? Will *this* feeling always be just around the corner?

To put it into perspective, though–it has been years since I’ve felt this terrified, for hours and days on end. It lasted about 3 weeks last time, before settling noticeably… awful as this is, I have to believe that if I can hang on a little longer, this, too, shall pass.

My Christian upbringing is showing, again. Well. There’s nothing wrong with that, as long as you don’t let your upbringing turn you into a dickhole.

Always a risk with me, but I’m trying my best.

Mental Health Update August 2018


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Just what it says on the tin.

I was doing so well. Volunteering with a suicide prevention helpline, making tentative plans to see actual people out in the actual world, had a mini-vacation with my husband and kids… now I’m spiralling. Down, not up, but not happy… just anxious.

I got 5 hours of sleep Saturday night, and less than 4 last night, despite being exhausted both nights. The real acid test is this, though: I couldn’t sleep right now, in broad daylight, with another adult in the house, despite being so tired I’ve had a fatigue headache since before going to sleep this morning (it was light outside before I dozed off, despite having been in bed for 5+ hours, at that point). I just can’t switch off enough to rest.

If it makes me feel any better (it does not) I have yet more evidence that social media is the trigger. I joined a large Facebook group about a week ago, and I’ve been more and more cheerful each day–as soon as I got some genuinely negative feedback in the group, eventually getting one of my posts removed (they disliked a pic I shared, despite it being a legitimate reference to the overarching theme of the group) I was ripping at my nails, crying a little bit, starting to hyperventilate, the whole 9 yards. I tried to move on; I engaged in what I thought was going to be a civil discussion on a friend’s FB Wall.

After a few opening comments were made (both by me, and by other people) some random suggested I “find something more productive to do with my time” rather than joining in a discussion between several of my friends, and someone I’ve known for the best part of a decade liked the comment.

The same guy (who has never met me, as far as I know) went on to call me self-righteous, a horrible person, not a real friend of my friend, etc, because….? I genuinely don’t know. I didn’t launch a single ad hominem attack at him, nor at anybody else.

I can’t understand why my “friend” would like me being bullied (that’s what it is, when someone singles just you out, tells you to leave the conversation that’s open to everyone, and then starts hurling abuse at you). I don’t understand what to do about it.

Yes, I do. It’s just hard. Wish me luck.