Category Archives: Asperger’s and Autism

Homework Rant

I generally love our little school, but this morning I am frustrated that they really don’t get my daughter’s autism. Yes, she appears “fine” at school, but this is at a huge cost to her coping levels, her “spoons”.

If you had a child who hit herself on the head with the first thing within reach when she was stressed, you wouldn’t make her do homework either. Other children may also “be busy” but extra busy in this household means extra down time, and there *isn’t* time for homework – unless you’re the kind of person who enjoys watching a child suffer, which I’m not.

No, we can’t do homework after school – she is so worn out by then it’s too stressful. Friday evenings? Don’t be ridiculous – the *only* thing possible on a Friday after school is as much calm time as possible. Weekends are the only time possible, but if we do something else (you know, like be a family and go out occasionally), then more recovery time is needed so again approaching homework isn’t possible without screaming, hyperventilating, self-harm.

Would you put your child through that? For homework that is pointless for her as she’s so academically bright she doesn’t need the extra practice anyway? I wouldn’t. I don’t.

But the pressure to hand in homework also makes her so stressed. All she needs is to know it doesn’t matter, that it’s not important that she didn’t do this work that she could breeze through this week. Not to be told that “of course she should be worried” that she didn’t do homework; not for me to be told that maybe we should do it on Fridays after school so it’s done.

I’m not putting my child through that stress for a meaningless exercise in nothingness, but even our lovely laid back school is happy to put her through more stress because they “see” that she’s “fine”.

She’s not “fine”.

She’s awesome. She’s wonderful. She’s clever. She’s imaginative. She’s kind. She’s caring. She’s thoughtful. She’s amazing.

But, actually, she’s also disabled. And that matters too.

Who Am I?

Being diagnosed as autistic eighteen months ago was like having a rug pulled out from under my life.

[Aside: I then spent a while deciding whether this was a metaphor or an idiom and wondering what the etymology of the phrase was. No problem at all with using phrases like “raining cats and dogs”, and I understand their meaning, but my brain will always wander off wondering why…]

[Second aside: Why do wander and wonder look so similar?]

Eighteen months on and although I’d suspected autism for several years before that, I still feel like… Like a freshwater fish who’s been brought up in saltwater and then finds freshwater for the first time.

[Third aside: Can freshwater fish survive in saltwater?]

I’m still me but who is me? All the things I thought I understood, I now don’t know if I misunderstood them after all.

I’ve been told I miss the point many times, but what about when I’m not told? How do I know if I’ve missed the point if I’ve missed the point?

Having spent 39 years of my life trying to be something I wasn’t, I’m now in turmoil trying to work out how to be who I am.

In the meantime, life goes on.

I have two daughters who need me, who are also freshwater fish in a saltwater world, but they’re different fish with different needs and we aren’t compatible all of the time.

I am exhausted from another evening (and morning) of meltdowns. Of being screamed in my ear when I have sound sensory issues so today my ears are stinging and the one with tinnitus is loud and throbbing. At least I am on my own while children at school and husband at work, so only the sounds of the outside.

[Fourth aside: Aeroplane flying overhead. Cars. Tap tap of the keyboard as I write. Fridge/freezer buzzing in the kitchen. Birds tweeting. Laptop fan whirring. Tinnitus hissing.]

Sensory overload means being on the edge of a meltdown, and the tiniest sound or touch can make you flinch or cry out in pain, or most likely snap at whoever came near you. It’s exhausting. I’ll have to sleep soon or I won’t be able to cope with after school. I won’t be able to prepare food for my children, or do household chores, or manage a bedtime routine – and then they’ll stay awake far too late and be tired and meltdown themselves. And so it repeats…

But if I nap during the day, then the other jobs that need doing don’t get done. I can’t clear up the mess. I can’t declutter (try getting rid of things with people who meltdown at any change; it has to be done without them knowing.)

I can let go of stuff. It’s hard. It’s emotionally painful. I have to be in the right frame of mind. But I can do it. I’m 41. Life’s too short. I know stuff clutters the mind and doesn’t help mental health. My children are children, it’s too hard for them. Fortunately, they don’t notice when things they never use disappear when they’re not looking.

But I need recovery time or I stop functioning. Knowing why doesn’t mean I can function. Knowing why still doesn’t mean I don’t berate myself for being so useless.

I used to be able to work. I used to have a sharp mind. In my head, I can’t see why I can’t cope. I can’t accept that masking for so long has disabled me.

I can’t work out what I need help with when I evidently need help. I don’t know who to ask, even though I know there are lots of options. I can’t explain my needs, and I can’t support the needs of others.

Ask me how I am, and I’ll answer:

I’m fine.

Everything’s good.

Ha. Ha. Ha.

Half Year Goal Review

At the beginning of this year, I made a list of goals in my Bullet Journal. The year has been up and down so I’ve not achieved as much as I might if all had been good, but severe anxiety and depression plus impaired executive function are hard to work with!

GOAL: A place for everything, and everything in its place.
PROGRESS: Working towards it. Still have lots in boxes to sort but am trying to make the place first before bringing something in. This will be an ongoing goal.

GOAL: Separate spaces for all four of us. Children own bedrooms. Adults (quiet) workspace.
PROGRESS: MG and DG finally got their own bedrooms in May, after delays with clearing out the old ‘office’ and repainting the new bedroom. Keeping them tidy is another matter… Mr Chaos has office space in the living room, but it could do with a bit more of a division to make it quieter. My space in our bedroom is still a dumping ground for things to sort, but I’m making time to do creative things more often even if I don’t have my own space yet.

GOAL: Empty TARDIS and garage of storage boxes.
PROGRESS: Hopefully I’ll start doing this in September. The TARDIS is roofless and full of ivy and spiders so not being used as a playhouse at all (plus full of crud) and the garage is refilled as soon as it’s emptied, with more stuff from the house that needs sorting. Lots of culling needed.

GOAL: Create routines and habits that work.
PROGRESS: I tried a bedtime routine that worked for a bit then fell apart. Making good habits is hard, and even with the help we’ve been given from outside agencies, it’s a struggle. Work in progress.

GOAL: Create and keep a blog schedule.
PROGRESS: Ha ha ha. I always stick blogging at the bottom of my priorities, even though I really need to build up Chaos Castle. I’m currently in the middle of 16 reviews on Chaos Castle, but still seem miles away from finishing even one 🙁

GOAL: Lose 6 stone (84lb).
PROGRESS: Started dieting in March and have lost 38lb. I’m in a stalled phase at the moment and eating rubbish again because a few stressful weeks but will try to pull it together after this next week of stress is hopefully over.

GOAL: Couch to 5K.
PROGRESS: Not started. Not thinking about starting.

GOAL: Be authentic.
PROGRESS: Hmm. Not sure if I’m managing this one. Mostly I guess, but I think I still try to hard to play down autism and agree with the “we’re all a bit autistic” and “it’s not real autism” type comments to avoid arguments. I need to stand up for my and my daughter(s)’s autistic selves more. We are autistic. Not just labelled for the sake of it.

WORD OF THE YEAR: Happy.
PROGRESS: Not really.

I actually count that as pretty successful for half-way through the year, given that I usually get nowhere near this in a whole year! Yay for the Bullet Journal for helping me take the baby steps towards progress. Here’s to the next six months 🙂

10,000 Things

I’ve written regularly about the amount of clutter in our house and all the attempts to sort it out, which have invariably failed because of impaired executive function. But now I know that my executive function is impaired, I can work with that. Using a Bullet Journal has definitely helped, and I’m actually working towards my goals most of the time.

In one of my “try to work out what to do next” / daydreaming moments I had the idea to release 10,000 things before the end of this year.

Why 10,000? It’s a number plucked from thin air but it’s also probably realisable, albeit challenging. In order to have any chance of hitting 10,000 there has to be leeway in the definition of “a thing”. So for example I will count every piece of a puzzle or game, every sheet of separate paper, every pencil or crayon; but not every page of a book or magazine, or every teeny item like sequins or Hama beads 😉

My other self-imposed rule is that day to day rubbish and recycling don’t count towards the goal. Rubbish and recycling from hoarded boxes do count, that’s part of the point.

I’ve seen these challenges elsewhere but I’m not joining in with a community for this, it’s just extra motivation for me to do the decluttering I need to anyhow.

The most challenging part will probably be remembering to count everything!

I’ve no idea whether 10,000 is a ridiculous aim or not, but I may as well aim high.

The challenge starts now. I’ll keep you updated 🙂

 

Procrastinating

I have procrastinating down to a fine art. I tried to work against it, and did quite well, but here it is, almost the end of March and I’ve not posted anything for ages. So instead of finishing off all the half-written book reviews I need to do, I’ll procrastinate here instead…

I’m still loving the Bullet Journal. In January I got so much done, and I may feel frustrated that I’ve not got much done since (in terms of writing posts, and getting the house decluttered), but I am keeping on top of the day to day things more days than not, and have even stuck to a diet for two weeks so far.

In need of relaxation this morning, so setting up April in #bulletjournal

A photo posted by Anne-Marie Carslaw (@chaoscastleuk) on

We have another autism diagnosis to add to mine, and I now suspect that three out of four of the Chaos household will end up with official diagnoses. Despite knowing we were going through the assessment process, the diagnosis did take me by surprise and we’re all still adjusting to it. It does mean that I really need to start building up local Home Ed contacts because I can’t see that mainstream schooling is going to be that helpful for us.

We have a huge number of review books to get written. Many very excellent ones, and a few so-so ones that probably won’t get added. The best of illustrated books will go Chaos Castle, the rest here. Which will include some very excellent unillustrated books. Chaos Castle is all about the visuals.

I really need to update both blogs visuals.

But content is king, so I have a note to myself to not procrastinate by updating themes… I really want to…

I’ve not been reading as much as I feel I want to, but am currently on the third in the Tiffany Aching series, working up to Terry Pratchett’s final novel, The Shepherd’s Crown. It’s nice to read them all together, without several years between, as everything is fresh from one book to the next, and you can really see the development of writing over the years.

It seemed like a good time to (re)read these. Although reading The Shepherd's Crown will be hard.

A photo posted by Anne-Marie Carslaw (@chaoscastleuk) on

I wish they’d kept the smaller hardback and matt cover format for the last three. I preferred it, and I want the series to match!

I now need to convince myself to finish off writing a review that’s over a month later (never mind all the other ones), so I feel I’ve achieved something…

 

Planning

I feel like I’m letting my life slip through my fingers. Years of not knowing why I couldn’t cope with what seemed like simple things; years of on/off depression and constant anxiety; years of feeling like my life has no point whatsoever. And yet still battling on, because I feel I ought to. Then wondering why nothing changes.

Getting an autism diagnosis was an answer, but also it’s just a first step. I am still me with all my anxieties and foibles, but I feel like I’m only the rubbish parts of me most of the time.

I’ve been looking at planners for several months, considering several pre-made styles or printouts and contemplating designing my own and getting it printed on demand. I’d seen the concept of a bullet journal, but watching the intro video didn’t inspire me and I’d written it off. But then I found the #bulletjournal tag on Instagram and saw how other people were using the method to fit them, and I spent hours wasting time on Instagram and YouTube was inspired.

The person whose beautiful bullet journal really made me want to start is Boho Berry. I have a tendency to jump too far into new things and go a little overboard with collecting stuff rather than doing stuff, and New Year’s intentions always fall apart for me so I started reticulating splines (or something) and bought a Leuchtturm1917 squared journal. It didn’t have to be that brand, but that’s the one that seemed to suit what I was looking for best. It is very beautiful.

I have no patience, and I don’t believe that starting something at New Year is necessary the best, so I started for December. I’ve not got into the habit of using it every day, but I have found writing short to-do lists each day are more likely to get done and I was a little more organised for the first few days of new thing excitement!

I’ve thought about my goals for 2016, to become a better me (not a different person; me with all my faults and meltdowns but also with more structure and less procrastination) and my three main areas of focus are house, health, and blog. I’ve not included parenting because that is in every part of me, and included in specific house and health goals.

I think these are my 2016 goals. Planning and forming good habits are the basis of everything really.

A photo posted by Anne-Marie (@chaoscastleuk) on

So that’s my plan. Work on creating routines and habits that work for the family; work on creating a living space that reduces stress; work on living together as a family with all our foibles and traits; work on physical fitness alongside mental health. Keep reviewing. Keep accountable. Keep authentic.

Here’s to 2016.

How to depress an autistic

“Were all on the autistic spectrum somewhere. I know exactly how you feel. You just need to try harder.”

Just no.

I try hard every single day. That’s why I’m constantly exhausted.

I’m not lazy. I’m autistic.

I don’t have the words right now. There’s an excellent Tony Attwood video going round at the moment. I hope lots of people watch it.

Anxiety is Boring

Anxiety. Anxiety. Anxiety. Anxiety.

I am somewhat annoyed with it at the moment. When I’m not merely stuck in frozen fear of… nothing, incapable of thinking thoughts that make any sense.

Blah.

Gah.

Blurgle.

Seriously, most of the time this is the best my brain can come up with. I’d do something mindful, but I can’t concentrate right now.

Today I was going to tackle a small part of the living room and move towards decluttering again. I’ve been working on my mental state so thinking it should be easier and now I feel too anxious to start, and too anxious because I’m not starting.

Insert manic laughter here.

Today I am doing nothing again. I can’t think which book to read next. I’m distracted by the messy piles – which one first? I’m distracted by my brain buzzing with nonsense.

I thought I’d update my book spreadsheet. That’s usually a calming exercise for me, but looking at the books on my Instagram feed and the thought of typing all those words…

Words. Words. Words.

(What do you read, my lord?)

… the thought of typing is so tiring. I’m typing this. Somehow freehand (freefall?) is easier.

I’m in the middle of The Wolf Wilder. I forgot. Maybe I can finish that. Maybe a bath will soothe me enough to get unstuck.

My real thoughts are more scattered than this. I am concentrating to get words out, so the focus is better.

Focus. Focus. Focus.

I used to be good at that. I used to be good at a lot of things.

Didn’t I?

At my counselling session she said I should make “I am a worthwhile human being” my mantra for the week. I’ve never had much self esteem, but when did it get so low?

Words.

Apparently writing this nonsense helps. I’m thinking. I’m focusing. I’m breathing.

Do I publish? It’s a random mess of nonsense.

Oh well, why not?

Executive Function

Trigger warning: depressed thoughts

I’m struggling with life at the moment. I’m sick of feeling depressed and anxious, and I want to make little achievements that I know will improve my life. But I can’t seem to work out how to do it.

It’s not that I don’t know the theory, I just have a huge mental block on action. I want to live in a tidier house. The mess depresses me so much. I don’t want a show home, or minimalism, or anything Instagram or Pinterest worthy (I Instagram my mess anyway, but I’m odd). I just want tidier. Less crap.

I’ve written lists. I’ve broken tasks into tiny bits. I’ve sketched room layouts. I’ve categorised the “stuff”. I’ve thrown everything on floor and surfaces into bags in the garage so there’s less to deal with in the house.

I’ve stared into space. I’ve read novels. I’ve taken up doodling. I’ve completed Plants vs Zombies. I have a level 7 town hall in Clash of Clans. I’m on level 170-something on Candy Crush Soda Saga. I sleep during the day. I cry. I rock.  I procrastinate. I perseverate.

I know I waste hours and hours but I’ve forgotten how to live. I feel like I’ve done it all so many times before that trying again is pointless. Life is pointless.

I’ll try again. Of course I will. I always will. I’ll look for my diary/planner and break the tasks up again. I’ll get there. I have to get there.

I wish I knew where there was.

Knotty

My life is full of knots. Actually, it’s full of nots.

Not blogging every day (because my thoughts bore me, let alone anyone else)

Not writing reviews (because I need to face the fear of getting it all wrong and just write)

Not tidying the house (because I put everything on the floor into sacks into garage weeks ago so I could concentrate on what’s left, and there’s still too much. And I still don’t know where to start. And I still can’t expect my children to be tidy when they’ve grown up in this state. And I don’t know how to do it. And I’m always so very very tired.)

Not walking (because getting washed and dressed seems like too much effort so I drop the children off with jogging trousers and a fleece over whatever I slept in, and eventually shower just before I collect them. Leaving the house for anything else is just too much.)

Not leaving the house (because I’ve not showered, and I have a mental block about going out without a shower, although I am now capable of dropping children off to school in the morning without one.)

Not eating properly (because cooking requires a set of complex skills that I can’t quite manage. Bread and pizza are just about do-able. As is chocolate.)

Not booking a doctor’s appointment (because then I’d have to book it, and get there on time.)

Not replying to emails (because I start to hyperventillate just starting to think about all the things I should be doing.)

Not reading (because I can’t think. But I’ve read two books this week, because I had to do something to start; to stop; to whatever I need to do.)

Not living (because I don’t know what I’m doing at the moment.)

Not.

Not.

Knots.

So I guess it will be upward from now. Because as soon as I manage to put things into words, it usually means things are improving. But I thought that before. And before.

And before.

I think I’ll go have a shower and try to wash out the knots.