Resilience
 

Strength of character comes in all shades and combinations but I feel like resilience is a particular type of strength, so I dunno. I dunno. Let’s just tap into that this Sunday and have a good think about where we’d place ourselves on that continuum.

I get more upset/rattled about things happening to my family and friends more than myself. When it comes to me, I'm pretty resilient.

My parents checked out entirely before I turned 15, my mum died when I was 28 and I have a child with serious learning disability, no family support of any kind, no school system support of any kind, no NHS support of any kind (haven't even been able to get a paeds appointment since pre-covid) and we both work full-time.

Non-resilience isn't really an option ... if I have the worst day of my life tomorrow, I'll still have to get up and make everyone's breakfast on Wednesday. There's literally no one else. :joker:... :umm2:.

much the same my Dad died when I was 15, my Mum struggled financially so we all got jobs and helped her out, came to London with a friend, met Mr C had two kids, no family close by apart from and Uncle and Aunt but they werent babysitting material, bought and renovated numerous houses while working, bringing up the kids, reaping the benefits now but it wasnt easy and after saying I would never buy a project again, here we are in another project ...:joker:

Similarly we're getting there tooth and nail, lots to be thankful for, ever-increasing household income and the ability to work from home (my daughter's situation would have been an absolute disaster if I wasn't able to!) but I have to say ... it doesn't half sting to see pretty much everyone else getting either practical or financial help constantly and still talking about **** being hard :fist:.

Obviously everyone has their own stuff going on etc etc etc

there are very few people that sail through life without meeting some serious hurdles along the way and dealing with them as best they can. It's just life

I try to stay thankful really. On the one hand, not to be too woeful, but it does occasionally strike me that I'll likely be a 24/7 carer for the rest of my ife - or rather, until I'm too old enough to do it, at which point I'll just have to worry about my daughter being in a care system that's frankly horrendous and often abusive. The current plan is to continue increasing earnings until we can at least afford a regular full time private carer for respite/to allow us both to go out to work, as there is somewhat an eventual "ceiling" on my earnings whilst I can only work from home.

On the other hand I'm acutely aware that my kids are both great and (touch wood!) my older daughter at approaching-15 is thus far angelic really :joker:, and also I have a great relationship and we're both doing well... when I know that there are plenty of people out there in the same situation (full time caring responsibilities for disabled children) who are on benefits with a fraction of our income, or totally alone without family help OR a partner to split the load. So all things considered, today and the foreseeable future is hard but good.

I might not have said the same a few weeks back when both me and my wife were horribly ill with some gastro virus, but she was much worse than me so I had to carry on with the essentials (as mentioned, we have zero help), and I nearly passed out in the cheese section of ASDA. A real low :laugh:. Resilience was lacking a little that day!

How’s your child not getting supported by the school?

Been through some family traumas and Bankrupcy so I’m quite resilient…I always know there are people so much worse off than us…proved by stories on this page that are so admirable…

Hey, everyone has a story in life. That’s why I laugh when people boldly presume that person so-and-so mustn’t be a strong person on the basis of trivial, superficial reasons or because they seem to have to have been through much. Still waters run deep. It’s funny how people assume they can tell exactly what a person’s been through over the years just by looking at them or on the basis of little information. Even when you actually know the person well, you’re not them. There’s still probably a lot you don’t know.

Because - unfortunately - the only ASD school in the area is absolutely abysmal, and in the last year of her attending, they caused her what I worried at the time was permanent emotional and psychological harm. It's not fit for purpose. I actually get viscerally angry when I hear what's available for children in other areas... conversely to mainstream state schools; big-city ASD provision is usually excellent. Hers were a combination of incompetent and dishonest. To be fair to them, they were never uncaring or malicious: they just had absolutely no idea what they were doing, but didn't want to admit it. She's been out of school since mid 2022.

Home schooling is tough, not getting a break is tough, but not getting a break with a kid who is happy and affectionate 99% of the time is vastly preferable to having 6 hours a day of child-free time and a highly distressed, anxious, destructive, utterly lost kid the rest of the time.

Resilience
 

Hi

You may or not be aware but I work in an autism unit and from what you’ve explained I’d say you’ve 100% made the correct decision !

Sadly ASD units / mainstream schools aren’t for everyone


I’m sure you will work it all out !!

There’s so much information and advice out there ( online ) ..

I’d like to recommend a brilliant website to you

It’s called WrongPlanet.com and it’s a forum for anyone on the autism spectrum and also for parents of ASD children.

You can peruse without registering but if you want to post any questions or start a thread you just register ( for free) ..


https://wrongplanet.net/forums/viewforum.php?f=19

https://wrongplanet.net/forums/


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That sounds really rough but I thought she had just learning difficulties. I didn’t know she had ASD (which is totally separate anyway).

How do you feel about being called autistic, Zizu (just wondering)? Does it piss you off and have you insist on people saying Asperger’s instead (for fear of being lumped in with low-functioning people who have additional issues that make them like that in the first place) or is it just autism in your personal lexicon? I know some Aspies absolutely hate being called autistic, because it makes them sound more incapable and “disabled” than they are.

She has both, she's diagnosed ASD but has complex learning disabilities mostly centered around language. Her receptive language is good at this point, her use of language is still very limited, It's especially complicated because as far as anyone can tell she doesn't actually have an intellectual disability or developmental delay; i.e. she likes and enjoys age-appropriate entertainment (she is 11) and she absolutely hates to be patronised or "babied" - one of the major issues we had with the school. People assuming that because she can't speak at an age appropriate level they should treat her like a toddler, when she is 100% a stroppy pre-teen.

As it happens I've never been 100% convinced of the ASD diagnosis, I think it was potentially a slightly lazy catch-all diagnosis, I strongly suspect that she has a birth injury (cord was round her neck at birth and her face was very blue) and some structural brain damage (specifically language processing) but it's never been fully investigated, partly because her paediatrics care has also been terrible and partly because the testing process would likely be quite distressing for no real reason. It would literally just be for the sake of knowing, it wouldn't actually change what's available to her.

Aspergers is no longer an official diagnosis in the UK - essentially there's no such thing. It's just "ASD without learning disability".

Too right. If anything people with Asperger’s tend to be more intelligent than the average person almost inherently and that’s well-established: I know the most recent version of the DSM canned it but it does still get used unofficially by people who’d rather identify with that than a label which makes it sound like they have special needs. But then every third person doing bits on TikTok these days wants be autistic or otherwise neurodivergent these days and self-pathologise even the most normal of traits. It’s ridiculous. I’m not 100% sold on the validity of the concept of ASD (not just because the spectrum’s so broad) but that’s a completely different discussion altogether. I won’t go into that now. But what I do know is that I’d rather not call people autistic unless there was a reason for it or it was their preference. If I can refer to someone as having Asperger’s (sometimes just ASD), I will.

Resilience
 

If anyone enquires I just casually say I’m on the spectrum .. quite high up I’d guess

They say that everyone’s on the spectrum just at different levels

I identified as being Aspergers decades ago .


I guess at my age I’m just comfortable being who I am ..

I ACTUALLY embrace being like this .. my colleagues are all so supportive and I’ve basically got about 20 mothers in our dept as they all look out for me even though we’re all doing the same job … they just know that I can’t cope with certain situations and positively thrive in other situations .


Back in the day we were autistic then Aspergers came along and you were either Autistic or Aspergers or whatever

So now we are all ASD

There’s been loads of changes over the decades



I have loads negative traits and far , far fewer positive ones but I absolutely LOVE the positive ones so it’s all good


So after decades of just knowing that I wasn’t like anyone else in my family/ circle - after a lot of research I decided I was prob dyslexic ( why choose something so difficult to spell ffs) ( [emoji4]) but I soon realised that I also had Aspergers ..

I had more traits than the Asperger teenagers I was supporting .. and tested highly for Asperger’s.

Just recently my daughter who is a teacher and shares a lot of my traits tested positive for ADHD and I’m higher on the ADHD scale than she is judging by all the info and examples she shares with me

So I suppose I’m dyslexic/ Aspergers/ADHD !

I just got lucky :)


If there was a cure found tomorrow I would run a mile .. I love being like this .. he says typing away at 2:09 am

:)

Edit

I do feel a little guilty for our granddaughters though as two of them are already showing telltale “signs “ and I know now that they are gonna have some troubling times ahead of them .


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I think there's often just a failure to realise that there are different aspects of what makes a person intelligent. People with ASD can tend to lack some (typical) social skills and that can lead to struggles with emotional intelligence and there are sometimes some communciation and language issues. On the other hand, ASD people tend to be quite systematic thinkers and will also have had to find "workarounds" for things that come naturally to non-ASD people (often called "masking") and those combined can lead to well-above-average improvisation and problem solving skills.

On a basic level that really applies to everyone I suppose; a brilliant author can be borderline innumerate, and vice versa extremely talented technically minded people can struggle with language nuances.

A good friend of mine at school for example was offered an accelerated start (skipping 1st year) at University for Computer Science, but needed Higher English. His grades for CompSci, Maths, Physics etc were off the charts but they had a basic requirement of at least a pass in English. He failed it miserably on his first try, I managed to coach him to scraping a C on his second attempt. Extremely intelligent guy, not on the spectrum (or at least not apparently), he just straight up couldn't do it :shrug:.

That’s all true but on the other hand a lot of people with things like Asperger’s and dyspraxia have very high verbal IQs (and much lower performance IQs) and actually do particularly well in the languages. Hyperlexia (extreme opposite of dyslexia) is common in Aspies and again it’s almost because of their particular type of Asperger’s, not in spite of it.