Tag Archives: autism parenting

9th April 2019

09 Tuesday Apr 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:


Recent Memories, September 2018, 1

24 Monday Sep 2018

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She called herself, “Spin”–one of her alter egos, one of the media through which she accesses the verbal communication the rest of the world seems to take for granted–and she spent an hour with me, playing on my phone and laughing at our shared jokes. I can tickle her again, it seems (and I *promised* her there would always be tickles, 6 and 7 and 8 and more years ago, and I KNOW SHE REMEMBERS, so I’m glad there are tickles now, just like I promised) and she laughs again, not every day, but at least she’s not crying every day anymore, and this may not last forever (what does?) but it’s good right now.

He plays Uno with us, almost every day. We’re about equally good at applying the rules, he and I, and perpetually appeal to the other adults for further instruction (I should be an adult, but I understand why I sometimes don’t seem like one–I catch on so slowly, at team games, at rules with variations, at anything with social give-and-take, so of course my own children are sometimes tempted to see me as one of them, just a strange older child who sometimes tells them what they can and cannot do, and makes their food, and sends them to their rooms to calm down when they get agitated). I digress.

We spend so much time laughing, the 2 of us more than anyone else in the room, and I help him, I suppose I “make” him cheat, to be quite frank: “If you do x, y will happen to me/Jake/Douglas…” and I chortle in my joy (yes, that’s from “Jabberwocky,” and yes, I had to look that one up, and no, it’s not a perfect quote even though I did look it up) and I don’t even care if he knows he’s my pick to win every game we play, even at (especially at?) my own expense, because what *is* a mother, if not the person you can count on to always be on your side, to tell you right from wrong and then turn around and declare that, ultimately, she would still love you and your sibling(s) best no matter what evil you committed?

And besides: he really *doesn’t* understand the rules, yet. When he’s a little older, we’ll stop reminding him to say, “Uno!” every time he’s down to one card. Or we won’t, and he will hardly be the only autistic teen/adult in the world, who gets some special dispensation so he can join in with everyone else, now will he? And if you don’t like it: FIGHT ME, BRO. It is right and just and good, for the more vulnerable to be given more help. I doubt my stance on that will ever change.

Stop digressing! Okay, I will.

She watches us, sometimes. She’s not yet confident enough to play, but I wonder if she would try if it were just the 3 of us? I’ll ask, in time; but only once I remember the rules better myself… that’s not a bad idea, generally speaking. How could it be bad? It’s a chance for me to properly be the adult, in the only situation where I’m convinced I can really be fair: arbitrating between the 2 of them, each the only entity I love in the same way, and with the same ferocity, that I love the other.

Recent Memories, September 2018, 1

17 Monday Sep 2018

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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.

Posting More; My Son, 1

15 Tuesday May 2018

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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.

One Post a Month–My Daughter

26 Thursday Apr 2018

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Look at my blog. I haven’t looked in any depth, but I feel sure I’ve noticed this trend on numerous occasions, and it certainly holds true for this month and last month.

What is it that makes things seem so much sharper (things past or present, or future worries) in this week of the month, every single month? I have very regular periods… I’m guessing it’s therefore something to do with my menstrual cycle. For whatever reason, at this point in the month, I feel more creative, but also more sensitive. I’m actually not hugely productive; I’m too busy trying to quietly deal with all the stuff that hurts me all the time, but is worse this week.

Tonight, I was lucky. My daughter (I’ve got to stop calling her my little girl–she’ll be 12 soon, and autism or no autism, she’s becoming a woman so fast the changes are more visible each month) was hysterically upset, self-harming, and saying she hated us all and wanted to live somewhere else… but she calmed down relatively quickly. I asked her to lie down in my bed, turned the big light off, and rubbed her back and shoulders and then her head (which she’d been hitting) as I suggested ways to make her feel better. I told her some stories about what she was like as a baby (she loves that, for now at least) and after a while, she felt safe again and went back to her room. Later, she came back to sit with me, and I wrote her some limericks (not THAT kind of limerick; a child-friendly limerick about her toy goat, another about her brother’s toy goat, another about her dad’s cat, etc) and it was glorious to see that she understood what I meant when I explained about an A, A, B, B, A rhyme scheme.

I don’t have any particular expectation that she’ll remember anything about rhyme schemes tomorrow, or be able to sound out one herself, even with prompting; but I don’t have any expectation that she won’t, either. She is the queen of keeping herself to herself, especially if she thinks she might have to demonstrate her learning before an audience (a prospect which visibly terrifies her) and so, as with so many things in our lives, we’ll have to wait and see.

There’s something ironic in the fact that one of the few sentences my daughter can utter, even in extremes of despair or stress when other words have vanished from her grasp, is a vehement and slightly guttural, “I HATE waiting!” Oh, Naomi. I know you do, baby. I know. And we’ve been waiting all your life, to see if you’ll catch up to other kids, to see what your diagnosis will be, to see if you’ll ever talk again, to see how many of the words might eventually find their way back to you.

No. That’s wrong. I won’t take her successes away from her–the words didn’t just fly back of their own accord, she went out and searched for them, and found all the ones she lost and some more besides. If she has fewer words at her disposal than most 5-year-olds, and fewer still when she’s in distress, that’s still thousands of words more than she had when she was 3, when ALL the words had disappeared. But I digress.

Lucky. I am so, so lucky. She and her brother have been my joy for so long, even with all the worry and fear and heartache being a mother causes, I can’t remember what joy was from before they got here. Did I ever truly feel it? Maybe as a very small child, when it was mostly just me, my own mother, my baby sister, and our dog (Pepper) and our cat (Miss Molly) and my dad was mostly not there, but sometimes there, and he didn’t *always* shout at Mama, and sometimes my Mimi (my dad’s mom) would let me come over and she would feed me a whole bowl of blueberries, deliciously cold from the fridge and sprinkled with sugar, and I knew I was her favourite grandchild and that everyone who met me loved me and thought I was clever and special.

But since those days–which came to an abrupt halt the summer I was 3–the truest joy I have felt began with the birth of my children. From the moment she arrived, I have loved Naomi more than I thought it was possible to love another human being, and I genuinely thought I loved my parents and siblings and close friends with all of my heart… I was wrong. I didn’t know. Naomi taught me unconditional love, and I am so lucky for having her.

If I could change one thing in the whole world, though, I would make it so that *she* could be the one who feels lucky… and I don’t have any way to do that. I guess she’ll have to keep waiting.