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SuperDepressed

Tag Archives: asd

9th April 2019

09 Tuesday Apr 2019

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asc, asc kids, asd, asd kids, autism, autism parenting, autistic spectrum condition, autistic spectrum disorders, parenting

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:


Autistic Apraxia

06 Wednesday Mar 2019

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asd, autism, autistic apraxia, autistic spectrum disorders, non-speaking, non-verbal, parenting

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!

28 Thursday Feb 2019

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anxiety, asc, asd, austerity, autism, benefits, depression, dwp, foreign national, proof of ID, residence permit, welfare

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

20 Sunday Jan 2019

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anxiety, anxiety and depression, asd, autism, disability, disability payments, government assistance, happiness, mental health, mental illness, spectrum disorder, welfare

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.

A Brief Bio, 3rd January 2019

03 Thursday Jan 2019

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amateur author, asc, asd, autism, autistic spectrum disorders, biography, bipolar disorder, chronic illness, creative writing, journaling, mental health, mental illness, parenting, writing

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

30 Sunday Dec 2018

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asd, autism, best christmas so far, children, christmas, family, happiness, husband, kids

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.

Recent Memories, September 2018, 1

17 Monday Sep 2018

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asd, asd parenting, autism, autism parenting, humour, irony, kids, parenting

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

11 Tuesday Sep 2018

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"nice guys", abuse, asd, autism, autistic spectrum disorder, Domestic violence, intimate partner violence, relationships, sexual assault, social cues, toxic relationships

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.

Mental Health Update, August 2018, 5

27 Monday Aug 2018

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anxiety, anxiety and depression, asd, autism, children, depression, parenting, parenting autistic children

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.

Posting More; My Son, 1

15 Tuesday May 2018

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asd, autism, autism parenting, autistic boys and girls, children, echolalia, family, language delay, parenting, selective mutism, speech and language

It looks as if I’m posting a bit more, these days; I can live with that. The day will come when I actually finish one of my half-completed/barely-started novels, and I’ll want to have an audience standing by *wink, but I’m semi-serious*

I thought I’d talk about my son, today; I can hear him in the other room, shouting excitedly and unreservedly about what’s happening on the Wii, rarely making the clearest, most linear sense, but always manufacturing joy as if it’s a thing that can be bottled; and he’s so loud and so animated that, if he keeps it up too long, the neighbours will likely bang on the wall.

I don’t care, to be honest…. the kids have lived in this house their entire lives, not counting weekends at their dad’s, and none of my neighbours has once asked me if I needed help raising 2 autistic kids (including during the period after I asked their dad to leave, and I was juggling a 10-month-old and almost-3-year-old with severe autism by myself, 5-6 days a week, on 3-4 hours of sleep a night…) bang on the walls, you small-minded, compassionless wretches.

Despite living next door and sharing a wall with us (terraced housing) you weren’t there, when my babies were actual babies, were you? You don’t remember a thing from when my 2 were tiny, and it was all I could do to keep them happy and healthy and safe. But *I* still remember that my Gabriel didn’t make a single purposeful sound (no babbling, no nothing, other than laughing or crying) until he was 3-years-old, and that his first “word” was, “1, 2, 3.” In a week, Gabriel could count to 10 and read the numbers. A week after that, he said, “Issa a dack. Wah wah wah.”

When he spoke for the first time, we thought it was a genuine miracle, befitting a child with an angel’s name… after all, by then, his sister (aged 5, at the time) had stopped speaking altogether; to this day, I believe it was only his determination to interact with her, that got her to begin trying to speak, again. (Nearly 12 now, she’s still functionally non-verbal, and far, far behind even her peers with complex needs, when it comes to spoken language–without my son’s encouragement, I very much doubt if she would speak at all. She didn’t, for the best part of 2 years, age 3 to age 5.)

That’s Gabriel, though. Whatever my feelings about the almost ludicrously fundamentalist way I was raised, the idea that I was right to name him after an angel persists. Even now, almost 10 years old, he is made of weather that’s mostly sunshine, full of bounce and energy and enthusiasm, and even when his skies are stormy, all he wants is to feel better, to be helped, to be better himself.

For my daughter, he can get her to smile and play when no one else can. I didn’t mean to have him be her caretaker; but it’s a role he seems happy to fulfil, and she reciprocates in the ways that she can. *She* might get cross with him, but woe betide anyone who tries to hurt her little brother… she finds her voice then, if the words still elude her.

For me, he’s everything that made parenting a little lighter. She was every profound and worthy and solemn feeling I’d ever had, rolled into one; he was no less deeply loved, but those same feelings were lit from within, by the light he generates simply by being himself. Between the pair of them, my light and my shade, my extrovert and my introvert, my morning sun and my evening star, they have taught me how to be a mother.

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