How Did You Manage School?

Mr Chaos asked me this morning, as we yet again worry about choosing the right secondary school for our eldest daughter.

I honestly don’t know. I guess because I went to a small girls-only secondary, because my primary teacher recommended that my parents sent me private if they could afford it (thinking that I wouldn’t cope with a big secondary, quite accurately I suspect), it wasn’t the same as surviving a huge mixed state school.

There were 400 pupils at my school, aged 8-18, and about half were boarders. My mum drove me to school every single day from age 11 to age almost-18 (summer birthday) because we lived up to 25 miles away, although I expect a “normal” child would have worked out busses. But I was never “normal”.

I started self harming by the age of 17, but I was miserable for long before then. But also I was happy enough living in my own little world. I just read books constantly. I did school, then I forgot about it. I rarely did homework; I rarely studied (I was one of those annoying people who could pass exams with looking at the work ten minutes before going in to an exam); I didn’t see “friends” outside of school. I didn’t know that my experience was really quite different to most people.

Somehow I got through secondary. Somehow I went to university. I don’t really know how I did any of it, other than I just knew I had to and I was rubbish at breaking rules so I did what I thought I was supposed to. My school reports are full of comments like “we’re not sure if Anne-Marie is happy”, and “maybe she would benefit from outside help”, and “if only she would apply herself to all subjects, not just the ones she likes”, and “I was disappointed to hear her say that she finds most subjects irrelevant and uninteresting” (I learnt to not say what I really felt at that point!)

My daughters are not me. The small local primary school has been right for them. Not perfect, but better than our other options. Getting anyone to understand that your child is wearing a mask much of the time, and needs more support than they see, is difficult.

MG is in year six, in less than a year she will be in secondary education somewhere. Most of her classmates will travel to secondaries on their own from the start, age eleven. I can’t imagine my eldest daughter travelling to school alone. It takes five minutes to get her through the door to school most mornings, and those are the good days.

I don’t drive. I’ve failed ten practical driving tests. I don’t know whether that’s because of my autism (I know plenty of autistic people who drive, but we’re all different) but it limits our options. I want to send my daughters to a Montessori based school: no homework; no uniforms; 20% of all lessons taught outside; genuine individual support (25 pupils age 11-16). But it’s a drive to get there. There are busses, but the time to bus there and back would double the school day, which is not feasible.

We think we’ve chosen the most likely candidate for MG’s next school. £16K/year fees – we’ve been offered financial assistance, but I don’t want anyone to spend that kind of money if it’s not exactly the right place; and I really don’t think it is exactly the right place.

I know I’m accused of thinking of my children as “special snowflakes” and being an over-anxious mother. I am over-anxious. But in my parenting, my anxiety over my children has grown over time. I used to be utterly blase about sending my children to nursery and school, and completely trusting of the people looking after them.

After years of trusting everyone else, it’s not worked. Supporting my children with their unique needs does work. I’m only just starting to express my opinions more confidently; I’m only just telling school when I think things need to change; I’m only just starting to try to trust in my opinions.

But I don’t quite trust my opinions. I don’t believe in myself. I struggle through every day. I don’t know how to express myself in the right way. I do curl up under a duvet and cry most days.

I don’t know how I managed school. I don’t think I did. I don’t think I’m managing life much either. But I’ll keep plodding on, and trying, and hoping.

(Almost) Five Months Later

Apparently I didn’t manage to blog out May, or even post at all in the last (almost) five months. Oops. For the first week my head swam with posts that I didn’t quite get around to writing, and I replied to my lovely commenter (in my head) several times.

But here we are, in almost October, and nothing on this blog since. I miss blogging, but I don’t seem to be able to get in the right mindset.

Much has changed since May, and also nothing at all. We have a cat. A kitten really, he was born in May and we got him in August. I love having a cat in the house again.

DG got her official ASD diagnosis, no surprises there. Three ASD diagnoses in one household; Mr Chaos is outnumbered in so many ways.

I have a post in mind. I think I’ll go write it separately to this ramble. Maybe I will get back into blogging at last.

And picture books. I miss writing about that too.

Blog Out May

I’ve seen an advert which says “outrun May”, and I keep thinking it means the current UK prime minister. But actually it’s about running for charity. Or health. Or something. I’m not interested enough to remember. I’ve meant to do a blog every day month for years but instead I’ve barely blogged. But it’s the first of yet another month so I’m having another try.

I want to get back in the habit of blogging again because I enjoyed it. I need to get in a habit of journalling because my mental health isn’t doing too well and writing usually helps.

It seems that being diagnosed as autistic is the start of a long process and after over two years I still feel at the beginning of my understanding of myself. Over 40 years of not really being who you actually are isn’t easy to work out. I’m not sure who I am or how to parent the awesome beings that my body grew and expelled.

We’re on the cusp of puberty for my eldest daughter, and her diagnosis a year ago should help navigate that. Also being ridiculously open and honest for her whole life. Side affect of my autism, I’m rubbish at lying. We’ll have to apply for secondary school in a few months, and I am honestly scared of her going to a huge school, but an EHCP is unlikely unless she actually goes into crisis, which I’d prefer to avoid. Masking issues and appearing “normal” to get through the day equals “she’s fine” to the untrained eye.

Youngest daughter is still awaiting assessment, because two autism diagnoses in close family and a host of traits are still apparently not enough to avoid hoop jumping with CAMHS just to get on the year long waiting list. We don’t even have written confirmation she’s on a waiting list, and I don’t trust verbal notifications.

I won’t be writing specific details about my children because their lives are theirs and they don’t want it shared online. So if I seem self centered, it’s because I’m the only person I have permission to write about. My life is still child-led chaos of course.

My current special interests appear to be books (always, although picture books are fading, which I’m not happy about so will fight back); autism (especially female experiences and mental health); feminism (sort of, mainly for counteracting everyday sexism for my daughters); decluttering and organisation (because my house is too messy / stimulating for good mental health); and Lego (because.)

I have no plan for this daily blogging. I might hunt out some prompts, or diary stuff, or actually do some book reviews, or stream of consciousness. Or this might be or for another few months. Hopefully not. Please feel free to give me any ideas or questions and I’ll see how I do. Thank-you.

Scholastic Book Club for Christmas

Scholastic Book Clubs asked me to share some of my favourite choices from their Christmas selection, and in typical fashion I’m late (aarrgghh technical issues) and there’s only one day left to order for delivery on time for Christmas. However as a bonus, there an extra 20% off everything until 19th December too.

Even if you miss Christmas delivery, Scholastic Book Club books are at low prices all year round, with 20% of every order (over £10) going to a school of your choice. Win win.

Buy Illustrated Harry Potter and the Philosopher’s Stone or Chamber of Secrets from Scholastic Book Clubs.

My number one choice of gift is one (or both) of the illustrated Harry Potter books. I think these are wonderful gifts for any age – heirloom for a baby up to any age. Even those who aren’t Harry Potter fans should appreciate the wonderful illustrations. At £16.99 each they’re a bargain from Scholastic Book Clubs, and with 20% off that’s £27.18 for both. Bargain.

Buy The Jolly Postman or The Jolly Christmas Postman from Scholastic Book Clubs.

However for that awkward child age when they’re aware of getting presents until they’re ready to listen to (or read) the Harry Potters (about age 1-7ish depending on child), you can’t go wrong with The Jolly Postman with all the letters and leaflets to pull out. It’s unlikely to survive being read to death, so spares always welcome!


Buy The Wild Wilder or The Lie Tree from Scholastic Book Clubs.

Finally, the other awkward teen age where the recipient may feel too old for Harry Potter but is still too young to like whatever they like, one (or both) of these historically based, gorgeously illustrated novels might suit.

These are just a few pics from a wide selection, have a bruise and order quickly for 20% of and Christmas delivery.

Disclosure: I received nothing for writing this post, I just love gorgeous books and special offers.

Technical Difficulties

My laptop is dead. My less than 18 month old, 40th birthday present laptop. Sniffles.

Mr Chaos has backed up the files despite Windows not opening but it looks like the hard drive has been knocked too many times so needs to be replaced. It’s not happening at this time of year, even with the offer of a free old drive to check whether it will work again.

Sniffles sniffles grumble.

My children are banned from ever using my laptop again. Not that the ban has any meaning, with the laptop being out of action.

I bought a basic Kindle Fire in the black cyber sales, and have installed Google framework etc on it so I can do more stuff. Now I need to get the hang of image editing (I think I’ve found an app that will do layers) and putting pictures into blog posts.

I have a huge pile of Christmassy book posts I wanted to do, but it’s all taking longer working it out on a very basic tablet. Ah well. I used to be techy, I’m sure I can work it out again 🙂

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 🙂

 

Just Visiting

I try to remind myself I’ve been here before.

I try to remember that I won’t be stuck here. I will escape.

Thinking is foggy and laden down. My mind is so heavy I can barely lift my head.

What if this time I can’t leave? What if this time I’m here for good?

What if all the years of holding myself together, filling the cracks in, coping, have left me too broken to be fixed?

I can get free. I will get free.

Depression will not hold me.

But right now, I’m visiting.

Just visiting.