There She Goes - anyone?

[hazeyjane]

Anyone watching?

How did you message Shaun. I have wanted to today but he isn’t on Twitter.

Found him on Facebook

Also how he hasn't managed to learn any terminology to explain her condition or behaviour to other people

I'm not sure I have the terminology to explain ds's condition or behaviour (or the inclination tbh).....other than fucking exhausting.

...I should add. Ds's condition/behaviour is also....confusing, incredible, constantly surprising, sometimes very funny, sometimes fucking terrifying and dangerous, irritating, still a puzzle despite a diagnosis, a source of constant worry and wonder and ultimately 100% uniquely ds.

I think the language thing is a way of him expressing that it doesn't matter what you call it, she's Rosie. Or something like that.

Someone corrected me for saying Dd is autistic (instead of has or has a diagnosis of). I see the rationale, but the point is to give understanding to someone about her behaviour/needs.

Language changes all the time and whats acceptable and whats not acceptable , years ago ds would have been reffered to as "mentally handicapped" years before that people would have used the word every one hates so i can kind of see hos point that whatever terminilogy you use it doesnt change your child or their disabilities .

I agree with @IntentsAndPorpoises I think it sounds because to him she’s just Rosie.

My DS is NT but had a lot of health issues after birth and was basically in pain for the first 5 months so cried, non stop. The scene where Rosie’s mum says she’s leaving could have been me. I’ll probably get slated for this but I think it’s easier to say how much you love your child if you don’t actually deal with them most of the time. Eventually, no matter how much you love them, you get burnt out, and if your partner isn’t acting as a partner it creates a horrible situation for you all.

The hope Rosie’s mum has at the abilities Rosie is showing really resonated with me too. My DS’s birth was mismanaged and we are on constant watch for falling behind, missed milestones etc. I get exhausted trying to help him meet them and keep up.

Dark comedy and exceptionally well writen. Heartbreaking at times. Nothing but respect for people in this position.

Ah, I notice Tiredgirly's posts are deleted, that's a shame.

One thing I was thinking today was that it is often really hard to stop to explain/recompense/apologise (if any of those things are actually appropriate...) because actually trying to deal with the child and possibly siblings is enough of a job in itself. In a swimming pool it easily takes 2 adults to wrestle a slippery angry child out of the water, and often you just want to minimise what is going on.

I remember ds having an absolute screaming meltdown in a little chi chi gift shop once, kicking, spitting and throwing himself around all these fragile geegaws like a demented porpoise. It was as much as I could do to get him safely onto the floor and sit on him, and focus on his 2 sisters and their distress. I was suddenly aware of some woman saying, 'he's going to break something in a minute, if you can't control him...'. I managed to throw him over my shoulder and hoist him into his buggy and bundle him out of the shop. I said nothing, and just dealt with the aftermath.

Just a note that Episode 3 is being repeated tonight on BBC4 at 10.35pm. It's apparently the usual repeat slot for it.

I watched the third episode last night. I laughed and cried in equal measure. The frustration, the notes, the files - dear god the files.

It is endless, relentless, and rewarding, especially when you get what they really want which opens up another door of frustration for the parent in a way.

With us it was lamp posts and lorries. Thankfully we lived near a park on a main road and had lamp posts in abundance. The neighbours all knew his lamp post obsession. It must have looked very weird standing beside a child staring up and down at a lamp post for about 15 minutes and then going on to the next one. Madness!

I love how his educated neighbour corrects his description of his daughter , mentally handicapped, or is it learning disabled?

A reminder that episode 4 of There She Goes is on BBC4 tonight at 10pm:

The Wrong Grandad
Simon's mum and step-dad want to take Ben to Devon for 3 weeks, which causes Emily and Simon to wonder why they don't want to take Rosie.

Starting in an hour

Finding the series a bit difficult in regards to how the parents communicate with Rosie, and had to laugh at the ‘tuck her in and walk away’ bedtime routine in episode one. I wish!

I originally came on to say that all the stares and misunderstanding/ignorance of strangers was a bit far fetched. It’s not something we’ve encountered! But then I got to TG’s comments and thought ‘oh, there genuinely are people out there like that!’ (Truly not starting a PA, but the username does kinda tickle me because let’s face it - there’s no one knows tiredness like the parents of kids with additional needs 😂)

Had two little weeps with tonight's episode. We are very very lucky that our parents have looked after DS for extended periods when he was smaller. My PIL actually took him away for a week when he was about 8. Only last week they told us what a huge eye opener it was for them. Laughed at times too tonight. Love this programme and looking forward to next week.

I found tonight's episode the most emotional so far, Partridge. A few tears dropping in the G&T. We don't have care for WB, other than a couple of hours very very occasionally to do the essentials for siblings, thanks to close friends. Some laughs too - like the Dave Hill fringe (that's partly why I'm so particular about WB's hair and clothes - he's got enough to deal with), and grandad reading from the African story book (Rosie's consternation, and Ben's face!). I'm already feeling sorry that next week is the last episode, and hoping for a second series.

We've always encountered lots of staring unfortunately, 3out. It's very hard for siblings especially, when people do that. A first glance or short inquisitive look I can cope with, while decent people quickly work out what's going on, but the starers, no - it's just awful. We've wondered if we should sell tickets and popcorn?! We try to ignore, but at other times a stare back is good, or a cheery wave. I try to avoid giving the 2-fingered salute, where possible!

I'm finding much to identify with, but bedtime, like you, isn't one of them, nor the flimsy stairgate. We'll probably be settling until 3am or 4am, or worse here.

And yes, good point 3out - how I long for my pre-WB understanding of 'tired', 'busy', 'worn out' and 'exhausted'.

We've been watching this.

Ds2 is autistic, presenting as sld (no idea if this is true because severely autistic)

DS1 rather autistic, highly 8btelligent, presenting as DS1.

Saturday night has become our night for watching it. X and treadmills really bloody resonate. Baths also compulsory.

The unexpected thing is DS1 enjoying this and recognising Ds2 and the concomitant funny side , even if he would still gladly beat the crap out of him for breathing all wrong.

misunderstanding/ignorance of strangers was a bit far fetched. It’s not something we’ve encountered

We got mostly well meaning nods, some irritating nosiness or the odd bit of surprise until recently. Ds2 now well into puberty and we mostly get verbal abuse and nasty threats. No longer feel safe taking him on the bus and am currently wrangling with la for solo transport to school because he's struggling and other kids can't cope with him.

I can cope with the well meaning nods and surprise, less so the prying questions. It's a very poor reflection on our society when the norm has become verbal abuse, threats and feeling unsafe. I hope you manage to get the school transport sorted out soon, Our.

This recent episode has made me quite sad, because we definitely have family who make plans for our neurotypical children and leave our autistic child out. She is mostly ignored and neither my or my husband's side have ever shown any interest in learning how to communicate with her or look after her. So we certainly sniggered and raised eyebrows at the beginning of the episode but we will never get anything close to the resolution at the end of the episode. And definitely will never get a night out while anyone watches the kids! Certainly, the grandparents have told us that when our child grows up and gets better, they'll maybe have her then.

I hear you Mabel we dpnt have babysitters either if we gonout its seperatley unless we get any respite i cant see that changing any time soon

We don't have babysitters either. My mum is ace, but they live 200 miles away. Dh's parents have never looked after dd really. They used to when it was just ds. I'm not sure I'd be happy tbh. I'm fairly certain they still think she just needs a smack to sort her out.

Recently dh went to a comedy gig with a friend as we couldn't get anyone. We just take it in turns.

If I lived in the UK and I was near to any of you I’d look after the children so you could go out.

A story for you - my son is severely autistic. He also has Tourette’s and Frontal Lobe Epilepsy. He has 2-1 round the clock care here at home but for the first 21 years of his now 27 years I did it on my own. I love 1000’s of miles from my family and my sisters in law etc were getting on when he was born as the youngest of 5. My Boys s not even been to school so I know how hard it is.

Anyway he’s learned ways to handle some situations via the TV so for example when he became an Uncle he wanted cigars to take to the hospital so he could stand outside his sisters room and give them to visitors whilst saying ‘have a cigar’. But there are also the hospital visits like this week when he went for his 6 monthly blood tests and there was a young woman in the female waiting room who was in some distress. She was about 19 and also severely autistic, and for some reason she was also in a wheel chair. My son was quite curious about the girls distress and he went to see what was going on before we could stop him. He told her in his very limited way it would be ok. He was making gestures with his hand and saying lady, it’s ok. About 10 mins later they ended up in the extraction room together and she was stimming very badly in exactly the way he does when stressed and he looked at her and said to one of his cares ‘why she doing that’ before pointing to his arm and showing her his blood test being done and saying ‘see it’s ok’

On the other hand he has been known to once see someone in hospital in full traction (my son was a patient because broken his arm during a meltdown) and he then spent about 5 minutes in absolute hysterical laughter saying ‘man fall on banana skin’. Thankfully everyone saw the funny side of that.