A New Start (the way forwards)

I second Vi.

And even cognitively impaired people deserve respect and as much autonomy as they can manage. They deserve being talked to and being allowed to express themselves any way they can/choose that is safe (no throwing books across the room please, but be welcome to expressively paint or write or use sign language or pictograms or dance...)

I'm tired of people assuming autistic = cognitively impaired too. A lot of people have told me that I was either exceptionnal or not autistic because I have an efficient cognition regarding abstract data treatment (I'm a complete dummy regarding most social interactions tho and don't start me on my practical learning issues). Being disabled can take many forms and it's not limited to the two flavors of "wheelchair user" and "404 brain not found". People who cannot do this specific thing but can do that other specific thing, exist and they ARE disabled.

Autistic people who are non-verbal and functional and able to write to express themselves, are not rare. Call them "mute and shy" and magic, people stop seeing them as cognitively impaired.

It's annoying as fridge.

ArbreMonde wrote:I second Vi.

And even cognitively impaired people deserve respect and as much autonomy as they can manage. They deserve being talked to and being allowed to express themselves any way they can/choose that is safe (no throwing books across the room please, but be welcome to expressively paint or write or use sign language or pictograms or dance...)

I'm tired of people assuming autistic = cognitively impaired too. A lot of people have told me that I was either exceptionnal or not autistic because I have an efficient cognition regarding abstract data treatment (I'm a complete dummy regarding most social interactions tho and don't start me on my practical learning issues). Being disabled can take many forms and it's not limited to the two flavors of "wheelchair user" and "404 brain not found". People who cannot do this specific thing but can do that other specific thing, exist and they ARE disabled.

Autistic people who are non-verbal and functional and able to write to express themselves, are not rare. Call them "mute and shy" and magic, people stop seeing them as cognitively impaired.

It's annoying as fridge.

Our adult diagnosis from the psychologist said that we were 'highly unusual for someone with Autism but nevertheless 'x' is definitely Autistic. It is definitely Kanner's Autism rather than Asperger's Syndrome' ..written at a time back when they separated them and you either got a diagnosis of one or the other.

My father was still alive then and took us to that appointment so I'm guessing she also questioned him about our early life. we do know that 'Early Childhood Autism' was queried on our medical files by the thyroid specialist but back then with a diagnosis like that 'written in stone' we would have been shipped off to a special school.

Fortunately it seems because we'd also been born with our thyroid not working and they'd been so late diagnosing us and starting us on treatment they decided to give us longer to see 'if we could catch up' with a bit of intense intervention! Living in a remote village with fewer kids and teachers who had no idea what an autistic child was or should behave like, may have stood in our favour in a strange kind of way!

The system has finally decided on our biggest ever group decision yet! ... we will remain as a 'family group of multiple alters' rather than moving towards a complete fusion of everyone.

This has been decided because of the stroke and the realisation that being multiple gave us a big advantage over 'single minds' going through the same thing, going on past reports/experience from members of a stroke group- (or their relatives account if person was unable to type/communicate) going through similar experience at the same time.

At first Yuna struggled physically, us having a dog helped with motivation but she often felt she was 'forcing herself' through the day for his sake initially, but once others could get out too we started to progress faster particularly after Kit recovered and was able to get to the front too.


It's nearly a year since and we're almost back to where we were before with what the body can physically do except for we have lost hearing we won't get back and the Tinnitus is worse and constant it was previously intermittent and we sometimes got good days with no T).

so this is our progress report:

We have found all alters except two who had already previously disappeared from the system years before, leaving only memory fragments.

Speech is coming back slowly...simple short sentences are easy enough now (yeah, no...1-2 word commands to dog .. but long sentences or like hour or two having to try to talk (like socialising) is still exhausting and takes most of the next day to recover.

Occasional sentences throughout the day with rest breaks (like when talking to each other for practice) is not quite as exhausting.

We try and move from room to room using walking aids as much as possible trying to build strength while we get some respite in summer (from the knee arthritis - usually worse in winter)

Only using powered scooter for getting our dog out to ensure he gets the amount of exercise he needs and only using wheelchair indoors when our knees are really painful and/or swollen. (We're literally praying for a mild winter especially with potential heating bills too!)

Gross motor skills aren't too bad - eg getting your arms and legs into clothes. wii exercises. we can get in and out bed and wash.dress ourselves, cook a simple meal with some shortcuts (precut frozen vegfor slow cooker casseroles etc) and some adaptions.

Fine Motor skills - fastening shoelaces, buttons, zips etc ..slower and takes several attempts but can manage to do most things we need to do eventually. Usually wear pull on clothes and slip on trainers.

Memory - regained almost full autobiographical (long term) memory and short term memory is improving through the exercises and gaming. (remembering in game tasks,who lives where, how to do things in-game etc)

We're the only ones of the stroke group (who had similar strokes around same time) managing to live independently.

Area's to work on further - fine motor, planning and organising ourselves better. Sometimes we just don't know where to start so the whole task seems overwhelming to even think about.

Congratulations! You made such nice progress in all areas it's amazing! Good job team!

I'm going to second Arbremonde's comment, though it seems that as things improve there will always be challenges.

This morning we (Y & L) feel more closely blended than we ever have previously and feel more 'like one identity' though we all prefer to have the right to be separate inside as it is our sanctuary and we all feel that way.


[Yuna] for example I prefer to spend my downtime with Juno and games wise we really prefer Animal Crossing because you can have 2 players on one island so we can actively play as twins. We also enjoy cooking more and tend to tidy up more! {hint..hint} we function as conjoined twins when Juno and I are fronting together but like to see ourselves with seperate bodies in AC and on the inside.
Lee won't wear dresses or skirts and the chest area must be 'appropriately covered' with nothing that accentuates that area (such as push up Bra's)
If we have to look 'more appropriate for our age' for example out to an hospital appointment, Lee will change clothes and remove make up, the minute we get back inside to feel more comfortable

[Lee]..and games-wise I prefer games like Zelda and Minecraft and like to play them with Kit, although we're kind of enjoying Stardew Valley but miss the more photorealistic scenery of BOTW. Still the pixel art kinds of reminds me of the old Super Nintendo (SNES) games which I used to spend many a happy hour on as a child. We do NOT see ourselves as twins when we are playing or conjoined, even though we are also 'sharing the same body whilst playing'. Sometimes we will play individually when the other is not around and neither of us mind. We each have our own files on BOTW and MC. Kit tends to prefer the exercise based games anyway when playing alone or doing 'work outs' alongside video's.

Agreeing on clothes when we're having to go out together will be more of a challenge..Yuna likes more pinks I prefer greys and blues. Kit likes black. Thankfully we can't wear anything with heels because of the balance problems. I'll tolerate light make-up to cover blemishes or pigmentation when going out but don't like eye shadow, mascara and all the additional stuff which really isn't necessary in my view, so we agree on a light foundation and a light lipstick.


It's a challenge dressing to go anywhere outside, but we don't have many 'going out clothes' as we haven't been anywhere for years, most are still what Maddie bought years ago with a few newer items. Basically some cotton trousers or jeans with a baggy blouse/top. we can't tolerate tight fitting clothes either or certain fabrics due to 'touch sensitivity'.

We think it would be easier if Yuna fronted with Juno for things like social/medical appointments and I (Lee) fronted with Kit as we prefer similar clothes and colours and are happy to stay in rainy days or not go any further than local fields to walk the dog. We much preferred 'taking turns' to front than having to jointly front with someone with a very different style and preferences...even Yuna agrees with it's easier for her and Juno to dress.

We're still not dressed this morning, still wearing the pink PJ's Yuna chose last night cos she and Juno were out last on AC and watching TV. [Though it was teaming down here first thing and thunderstorms last night and early morning which is why we haven't taken the dog out yet]


so although we feel more blended than we have previously, neither of us like it or are happy with this combination. We both feel 'forced' and would rather be working with someone else. We get its supposed to represent both sides of the RL host (ie how the outside world views this body past and present) but can't see how we can be 'past me' and 'present me' simultaneously.

Joining past and present together in one coherent like / entity takes time. IMO so far you are all doing AWESOME because finding compromises when you have such differences in taste is a challenge! But I'm pretty sure that there are other things you have in common. If there werent any you would not be able to blend so well for everyday life

Juno and I found ourselves up front rather surprisingly this morning as we weren't expecting to be here until Monday!...we thought it WAS Monday initially so got dressed quickly, took the dog out and thought ...its quiet for a Monday morning! (no work traffic!) ...didn't have phone with us to check as it had been left on charge..so gets home and looks to see what it says and it's Saturday! ..well that explains why Lee didn't turn up to front with me...but where did Kit go???

Anyway we found out...Juno got message from our outside guardian, Kit was drinking too much which was getting dangerously too close to risking another stroke for the Guardian's liking, so she was recalled...obviously she also has more 'recovery' to do than we had initially thought. She was one of the most damaged by the stroke and still struggles remembering things even after we have filled her in and she has access to the system memory.

She's requested transfer to the inner sanctuary and no longer wants to work out or near the front, even in the background. So I'm not sure now who is going to be 'overseeing' myself and Lee training together from Monday?

Things are so frustrating right now, there feels to be no stability anymore especially since the bro split with his g/f too so we're not getting any social opportunities as can't get anywhere without assistance and there's such a shortage of carers even if we did have the money to pay someone's wages just to 'take us out'.. we don't qualify for free care as we can dress, feed & toilet/bathe ourselves..and that's all they do..you get 15 mins 4 times a day if you can't get out of bed yourself, get to the loo or make yourself something to eat.

Our energy bills have already almost doubled and its not even winter yet! ..we can't afford to take on a carer just for social outings as covid cases may also rise over winter and then we'll be left still having to pay someone's wages but not able to go anywhere and then unable to afford our heating bills.

I've no idea how we will cope Kit was our prepper and the one previously 'most able' to cope with these kind of situations...Juno says not to worry the system Guardians will work something out..maybe send others out to help who are more able to support us up front.

Sending a lot of moral support! I sincerely hope that the disability system in your country allows for some money help or human help to get things done. Sometimes the help we have a right to, is not easy to find. I know I'll have to have a thorough examination of all my options with a social worker to find what other crumbs of help I can get that are "hidden" on the social security website.

Maybe it is the case in your country too and you can get more help you just do not know where to look for? Fingers crossed you can find something!

And good luck for the system management. Tons of moral support!

Well Kit and Bobby-lee have gone back inside for some recovery time and to help Little Susie & Phoenix.

We had one last sunrise walk together to watch the sun come up, made their favourite cooked breakfast and they've gone in for a couple of weeks first.. Planning to visit on Mr Woof's birthday and see how they feel after a 2 week 'holiday' inside.

Kit' advised on what to start getting in or looking for (at a good price) for winter preps before she left and still have the physio and video game project so got plenty to be getting on with!

Juno and I have been having a go on Stardew Valley. Kit said its better for planning skills than Animal Crossing as have to organise yourself more for planting right stuff in right season to do the community bundles etc. Hopefully these skills will transfer to daily life too! We will still try to do some sorting and tidying a couple of days a week too.

The system feels we really need a stable fronting host not everyone flitting in and out as we really did best in life when we had hosts who stayed up front full-time though back then there was no awareness of others inside, myself originally as a teen and Thea and Maddie had no awareness there were other alters' back then.

Obviously we can't go back to believing we're 'a singleton' as we now know (not unless another bigger stroke wiped our memory) and there's more pressure to keep them safe and hidden. This 'communal farm/inner retreat' maybe the systems attempt at re-organising the inner world incase of another? Two Gatekeepers have been assigned too ....one at their end for leaving and one at front for 'arrivals'

So at the minute these are trials to see what works best but we definitely need to find a better way to be more organised, both in the outside world and the inner one!