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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.

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.

Recent Memories, September 2018, 1

24 Monday Sep 2018

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asd parenting, autism, autism parenting, autistic children, autistic kids, autistic spectrum disorders, children, kids, my babies, parenting

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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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.

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

07 Friday Sep 2018

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anxiety and depression, asd parenting, autism, autistic spectrum disorders, benefits, parenting, social security, welfare state

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?

http://asylummagazine.org/2018/08/supporting-claimants-a-practical-guide-by-jay-watts/

Mental Health Update, August 2018, 6

30 Thursday Aug 2018

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anixety, anxiety and depression, asd parenting, autism, autistic kids, depression, guilt, new school year, parenting, stress, worry

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

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.

One Post a Month–My Daughter

26 Thursday Apr 2018

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asd, autism, autism parenting, autistic, autistic spectrum, parenting, parenting a child who self-harms, self-harm

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.

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