Category Archives: Backstory
For those of you familiar with my old posts, you’ll remember the codenames I’ve used from the beginning. That was mostly down to starting my blog in the midst of a vicious divorce and custody battle (if I might laughingly use the phrase).
Well, I’m divorced now. And while I’ll still decline to publish the identity of my ex husband and his family – really just so they don’t take me to court for that, next – I’ve decided to do away with the ‘Cake’ and ‘Twig’ monikers.
So hello, reader old and/or new. I’m Amy. Nice to meet you. My son is D, and he’s recently been diagnosed (at almost seven), as having an ASD and possible ADHD, too.
I got married when I was 19. Of course, by then, you know everything, don’t you? Fantastic time of life. I moved to the States, lived with my then boyfriend, Shovl, for 3 months. Not in the most glamorous of places, it has to be said. First in his parents basement. Then, eventually, a tiny apartment in Arlington. I didn’t dare go out after 5pm, seeing a I could hear gunshots a block or so away.
Oh. And we didn’t really have a bed. Because Shovel decided to leave a bunch of our stuff in the loading bay while he went for a beer with some new neighbours. And was consequently surprised to find it gone when he returned 2 hours later. Among the missing items? The antique bedframe and box, and my entire collection of World of Darkness books. (Any geeks out there will understand my grief).
Anyway. The time came when my guest visa was about to run out. Our solution? Hey, let’s just get married. Then Cake can stay. In her oh-so-glamorous lifestyle to which she has become accustomed. Ah, that old 20/20 hindsight. Don’t you hate that?
We were married in a courthouse. I wore combats and a tanktop. The ‘priest’ doubled as our photographer, with an instant throwaway camera. “Do you, Cake.. *click*.. take Shovel.. *click*.. to be your lawfully wedded husband? …*click*
In the end, it turns out marrying a US citizen does not guarantee you can remain. You still need a visa. So I had to leave anyway. Oh, and he decided it would be better not to tell his family we were now a married couple. Sure, sure, fine. All made perfect sense at the time. I think.
So, we moved back to Europe. It was a nice opportunity to visit my family and friends. My dad even gave Shovel a job in his company, so we wouldn’t be broke. It was enough to afford a lovely little apartment in town, which I coveted and subsequently adored. Beautiful big kitchen with an AGA stove. Not that I cooked, at the time. Gorgeous living room with a real fireplace. Though Shovel gave our tv to his drug dealer. Go figure. Bathroom to die for, though. Black and white tiled floor, big tub, purple wallpaper. A little haven for make-up application.
A few months after that, I fell pregnant. Which posed a difficult question. How exactly do we go about explaining to his parents that we’re already married and now expecting a baby? His solution, apparently, was just to let them believe it was a shotgun wedding. And so began their long-lived view of me as a gold-digging waste of space, I guess. Just in time, since 3 months later we went for a visit again.
I say a visit. Really, it was a free babysitting service for his three sisters. I got to stay in the cabin we were lodging in on a military base (yes, there’s good reason I use codenames) and watch.. let me count.. seven kids. While they all went off on nice day trips. Position established. Bottom rung of the ladder. And believe me when I say, jet lag added to morning sickness did not a good-tempered Cake make.
It was just little things. Subtle ways to remind me I really didn’t matter, pregnant or not. Maybe it’s petty, but it drove me crazy. Like, I don’t like burgers. I really don’t. Yes, I know I’m a freak. But Miss Ellie insisted on going to Burger King every day for lunch. The woman doesn’t cook, I swear. It’s always fast food or takeouts. Anyway, trying not to be a pita, I just sucked it up and asked for a totally plain burger. No cheese, no salad, no nothing. Burger. Bun. That’s it.
So she returns, triumphant, with her banquet of greasy disgustingness for her family to feast upon. And, naievely trusting, I accepted what she handed me and took a healthy bite. I wavered between starving and puking, at the time. It was a starving stage.
I don’t know what else. I was too busy covering my mouth with my hand and bolting for the bathroom to really dissect it.
After that, I just said a polite ‘no, thank you’ when she offered to pick me up something for lunch.
Well, one large mug of coffee down and I think I’m semi-coherent. Despite Spongebob chattering away in the background. The actual show, not a codename!
It seems as good a time as any to explain the saga of Twig’s diagnosis, or lack thereof, before the jitters set in and I’m forced to track down cigarettes to balance it out. I’m very health-conscious, as you can see..
So. The first real inkling of anything amiss actually came from a surprising source; Shovel’s mother. Let’s just call her Miss Ellie. If you ever saw Dallas on TV, that might give you a sneaky insight. She decided, in that authoritative way that only nosy mother-in-laws seem to truly possess, that Twig had autistic tendencies. And my reaction? I couldn’t say if it was typical, since I’ve no real point of comparison. But I was immediately, guns blazing, on the defensive. How dare she imply there was anything ‘wrong’ with my baby?
The situation didn’t improve when she took him to her family practitioner, without my knowledge. Though he agreed (supposedly), I didn’t put much stock in the claim. That woman could strongarm Saddam Hussein into a needlepoint class, if she felt the need. She’s that scary. Plus, she has a tendency to hear what she wants to hear, which usually manifests itself as agreement.
Twig was just about to turn two, at the time. Despite our predicament (I’ll dicuss that in another post) he was a happy child. He made eye-contact appropriately, he was affectionate and empathic. Alright, so he wasn’t showing much interest in verbal communication. But frankly, neither did I. We barely saw anyone else, and we understood each other perfectly well. Yes, obviously that’s now a source of ‘mommy guilt’. I never stop looking for them.
By the time our mute muse was two and a half (funny how those fractions are so important, when it’s a child), he and I were back in Europe, outwith the influence of the Shovel family. I had expressed some concern to my own doctor, who emphatically discounted the idea of autism. But he organised an assessment, agreeing that something certainly wasn’t quite right.
Said assessment involved a team of experts in various fields assessing him over the course of a few hours. Speech therapist, paediatrician, physiotherapist, you name it. And all in all the results were fairly depressing. ‘Yes, there’s something wrong. We don’t know what, or if it will improve. Oh, and by the way, your kid’s currently operating at roughly the level of a child a year younger than his actual age.’
Spiffy. So now what?
Fast-forward a few months. Twig’s enrolled in Music Therapy, and Speech and Language Therapy, and has his own Play Tutor doing home visits. Music and Play, great. Whether it helps or not is anyone’s guess, but he enjoys it and that’s the main thing. It introduces him to new situations and experiences, with people who know how to handle the meltdowns. Speech and Language Therapy? Not so much.
I had to give that particular lady the boot. Not only was she stalwartly refusing to listen to me, but she also didn’t seem to grasp the fact that Twig was different. Her standard methods didn’t apply, didn’t work, and more to the point they ended up distressing him.
Better than the group therapy, mind you. When he had a meltdown there, they left him sobbing in the corner for twenty minutes (half the session) so they could focus on the ‘well-behaved’ children. Disturbing how much that could actually teach him about society.. be ‘normal’, or be excluded. Charming. As you can imagine, I did not deal with those so-called experts very politely, after that.
Another year or so down the line. After some horrendous experiences ruling out physiological aspects of his condition – sedating him so blood samples could be taken, for example – we were still no closer. Nothing seemed to be actually wrong.. it’s just something wasn’t right. And though I saw improvement in him, almost on a daily basis, he wasn’t where he should be on the all-powerful spectrum of development. So what gives?
As it turned out, the initial observation team had managed to overlook some crucial points. He still sat in the ‘W’ position. He likes running and crashing into things. He never sits still. Those might seem trivial things, but it’s eventually been noted and brought to our attention. Not by some miracle doctor in our health system, but by a family friend. Who just happened to be certified in Pediatric Neurodevelopmental Therapy.
Here’s a couple excerpts from the report she wrote up for us.
A very distressing sensory processing deficit for any parent is the area of touch. The difficulties seen in Twig’s profile include low thresholds for grooming, being messy, having others stand near him. He is greatly bothered by normal physical interactions such as having his hair or nails cut. These must be done while he is asleep to avoid screams. He hates to be physically messy – food or dirt on his body. He demands it be removed immediately. He is bothered by being touched by others and may rub the area. On the other hand, he has a high threshold for learning from touching objects and people – he does this more often than children with integrated tactile processing.
Twig’s behaviors seem to be explained by a poorly integrated sensory system that is inhibiting his efforts to learn about his world. Children demonstrating similar behaviors describe various environmental stimuli (sensory input) such as light touch or even clothing tags as burning, hurtful, scary, feeling like “fight or flight”; deep touch as comforting, more easily felt. Sometimes they may say they don’t notice what you or I may be intensely annoyed by, such as intermittent background noise. Adults who suffer with this issue say they “wish their skin could be removed”. Children learning to function without innate integration of environmental stimuli operate with definite deficits. They are aided by a predictable world so learning, play and socialization can take place without the need to seek or avoid input.
Why didn’t someone else pick up on this?
Anyway, as it turns out, our health system refuses to provide us with further help, not even contacts for local groups.. because I have chosen to home school Twig. Of course I have, there’s no way he’d cope with starting school right now. Let alone the fact that the nearest placement turned out to be less than suitable. We were assured that Twig could have his own aide, during classtime. Further investigation revealed that this person was entirely unqualified, just some Joe off the streets.. which to me implies their job would be to keep him out of the way, again, while the ‘normal’ children got on with their edcuation.
That’s not the experience of the world I want him to have.
To him, every day is an adventure. He doesn’t worry over what happened yesterday, or what might happen tomorrow. He doesn’t get self-conscious, or embarassed – you should hear him laugh – and everything is treated with the same amount of awe and wonder as it was last week. Now tell me.. if your kid was that happy, without fail.. would you conform to the demands to force him into the cookie-cutter ideal of ‘normal’?
It often irks me how certain situations are handled by legal systems. How is it, that in a case that centers around the welfare of a child, they can be detached from the emotional and psychological effects of the decisions they can make so candidly according to the clear-cut, bulletpoint lists in their precious ‘book’? One circumstance cannot be weighed against another, just as the quality of a parent or their importance in playing any role can be. Read the rest of this entry
The actual beginning is pretty far back, now that I think about it. And as unremarkable as you might expect. Girl meets boy. Girl likes boy. Girl gives up everything and moves from Europe to the US to be with boy.
Boy turns out to be a manipulative, controlling bastard.
Now, before I go any further.. boy also happens to be the son of a well-respected member of the US Government. And, seeing as they never directly helped him in systematically ruining everything, I’m not going to name names. So, for the purpose of my ramblings, I’ve given everyone very deep and meaningful codenames. Read the rest of this entry
It’s hardly a revelation, but I’ve noticed that the very best ideas are formed by the coming together of two things.
(I’m less of a fan of the latter, today.)
Anyway. During a terrible, disjointed conversation, intended to be a summary of the last few years of my existence for a friend that had somehow missed out, it was pointed out that I am really, completely and utterly hopeless at keeping things ordered in my head. And that perhaps I should *gasp! Behold the infallible drunken logic!* write it all down.
Long story short.. well, you’re looking at it. I am now the proud owner of a shiny new blog!
Without coming off as an ego-maniac (though let’s face it, everyone who writes their deepest darkest thoughts up on the internet has to have a little bit of a stroking issue), I’ve never met anyone with such a complex backstory. It’s the stuff made for tv movies are.. well, made of.
I’m a single mother of a child with learning difficulties. I’m still not divorced after three years of separation. I’ve been a lot of places and seen a lot of things.
And I’m going to start at the beginning. Tomorrow. Once my caffeine levels have dutifully balanced the lingering ‘Jaffa-Cake flavored shots!’ effects.