MSE Parents Club Part 13

BrunoM

Oh my god I have to go to a meeting for the rest of the day without hearing 3's horrendous story hope you're a bit better today!

Evansangel

Eep, bad mummy moment. Lily was playing on her tummy earlier and was whinging, i thought it was because she was pushing her toys away from her, so i kept pushing them back.

Then she looked up at me and had sick all round her mouth..:o

Then we i picked her up to wash her face, i smelt poo :rotfl:


((HUGS)) 3, i hope your feeling ok this morning

Mel, Lily smiles at DH alot more than me, and always used to settle with him rather than me. Maybe she's sensing that your a little stressed and picking up on that? I hope it gets better soon ((hugs))

My_Fathers_Daughter

BrunoM wrote: »

Oh my god I have to go to a meeting for the rest of the day without hearing 3's horrendous story hope you're a bit better today!

...she is 'here' (you can always spot her, she thanks obsessively ) so she might spill before you leave...

Sarah_Joanne

MFD, ever the eagle eye! :rotfl:

My_Fathers_Daughter

Sarah_Joanne wrote: »

MFD, ever the eagle eye! :rotfl:

:cool:

I will take that as a compliment



Anyone seen Susan? She has been awol for a few days.

Sarah_Joanne

Oh absolutely!

Where's 3 disappeared to?!

Evansangel

(TMI alert!)

I have the worst period pain

3onitsway

redmel1621 wrote: »

She is approaching 5wks now and has smiled at dh TWICE....she hasn't smiled at me once, even though I am with her about 80% of the time....I passed her over to dh yesterday after I had been holding her for ages and she grinned away at him(for the second time, he said). She barely ever settles when I am holding her, she just claws and scratches me while screaming. I pass her over over to dh and she snuggles up and goes off to sleep, or just lays there staring adoringly up at him.

Mel You're being a silly one!
If she's looking at you for 80% of her time, when OH gets her he's just looking interesting/different for her, so he gets the smiles.
Use it to your advantage, let him have her for 80% of the time so you can rest, then eventually you'll have the different/interesting face that she'll smile at.


Thanks for your posts everyone, this is going to be a long one.

I don't want to mention any names as it might turn into some kind of legal situation, but you all know where i've been, and it was booked as a lovely special type of holiday especially designed for autistic children. It was stupidly expensive for 5 nights b&b - but my uncle had paid, and was happy to.

From the booking it's been a little disorganised, but they were in the process of one leader leaving and a new one starting so we thought that was just a minor blip.

We got there Saturday night, a beautiful huge stately type house with attached cottages. We thought we were in a cottage, but we'd been told wrongly (by the lady who left) and were in two rooms as the main house. Again, a bit disorganised but not a problem.

Then we find out it's not b&b, but self catering. We'd brought other meals but not breakfast stuff and the nearest shops were 30 miles away including a ferry crossiing. The other families complained and after the 'organisers' having some chats with the owners, they decided they would provide breakfast after all.

There was us with J, L & V. The lady 'in charge' with her 9yo DD and 6yo autistic son, another family with a 5yo autistic son and a 2yo DD, and a lady with her 3yo autistic son.

Saturday night the volunteers took J & L and some other children up to the stables to meet the horses. We had some dinner and a lovely nights sleep.

Sunday we had a lovely cooked breakfast - J was a little unsettled and a little bangy but no where near as bangy has he could have been.
After breakfast we went up to the stables, and had horse and carriage rides around the estate. J observed the horses as I expected, but was quite happy with the volunteers watching what was going on - a lovely morning.
After breaking for lunch, we went back to the stables to ride down to the beach. J again observed, getting a little closer to the horses but not too close. L & I got to ride down to the beach, then once at the beach everyone took turns riding. A couple of the little ones got onto horses, J and the 5yo boy again observed. After a while J took me over to one of the horses and stroked it, which I thought was a breakthrough and I thought after a few days he might actually get onto one. L & V were having a brilliant time getting to ride and play on the beach with plenty of people about to play with/help with J so I could play with her.

Then we had some free time. We sat in the garden of the main house playing with the dogs and chatting, again a lovely afternoon.

J was quite happy outside in the garden and I went in to make a cuppa and start dinner while some of the volunteers stayed outside with J. Then L comes running in, J had smacked and broken a little pain of glass in a window. I went out to see what had happened and one of the paid staff said he was sitting there very calm and chilled, when he got up and ran at the window. It turns out (L told me) that this woman is a 'healer' and when everyone else but her had gone inside, sat close to J and started waving her hands around his head/body & chanting, he'd jumped up and ran away distressed! He doesn't like strange people in his personal space and doesn't have the ability to tell them to p'off out of his bubble.

He was quite distressed after this but again, not as bad as he could have been, and calmed down and came in to eat dinner with us.

After dinner, the organiser and her helper (the healer) came into the kitchen where me & mum were doing our dishes. They said that they'd had a meeting and suggested we leave as this 'situation' isn't helping J as he is very unsettled. I said it's day one, he's autistic which means they don't like change to routine but for 95% of the day he'd been perfect. They said that they'd spoken to the main man (the author who'd started the camps in America) and he'd also suggested we leave.
I was absolutely raging and told the organiser exactly what I thought of her and the organisation. I told her they were aware of J's age when I booked, and if they only welcome younger (under 4ft and 4st) autistic children who can be manhandled easier they should have said.
I mentioned a full refund and she said I could discuss getting a partial refund. :eek: Cheeky bint.

L was absolutely distraught so I told the organiser to explain to L why she was being sent home from the holiday she was really enjoying. I also told her I hope her son never gets bigger than 5ft tall or they'll find themselves barred too. :rotfl:

Not just because he's my boy, but in total honesty the other autistic children were a lot worse behaved than J, but they were all small enough to be picked up and taken to their rooms out of sight.

Mum suggested to them that maybe we're being sent home because they're worried seeing a 13yo autistic boy is worrying the other parents because they're seeing what they face in the future.

Two of the volunteers were absolutely devastated. One of them was an absolute star. She was only 24, but works with autistic adolescents in Manchester. She was absolutely brilliant with J and you could see she was the only person there with real experience. She'd told the organisers that they were being ridiculous and that she'd dealt with much worse than J but the organiser told her she'd been desensitised due to her job. The poor girl was disgusted with them and would have come home with us if we'd had space in the car. She text Mum at about midnight as we were travelling home saying that she and the other girl were trying to organise going home today as they didn't want to stay.

I told you it was going to be a long one!

I'm not really sure what to do now - but i'm still raging and upset.

I emailed the main man this morning when we got back and asked for him to contact me to discuss the situation, and I opened a payment dispute (we paid by paypal).

Mum phoned our local radio phone in from the car on the way home, and got on the radio. The presenter was also raging after our call and said the BBC newsdesk would contact Mum this morning for the full story.

Mum wants to phone GMTV/This Morning/the press quoting disability discrimination! :rotfl:

We're really not sure what to do - but we'll see if we get a response from the Man first.


Thank you for reading - if you got this far!

Has everyone else had a good weekend?

3onitsway

My_Fathers_Daughter wrote: »

...she is 'here' (you can always spot her, she thanks obsessively ) so she might spill before you leave...

Sarah_Joanne wrote: »

Oh absolutely!

Where's 3 disappeared to?!

BrunoM wrote: »

Oh my god I have to go to a meeting for the rest of the day without hearing 3's horrendous story hope you're a bit better today!

I'm here - i was typing the longest post in the history of MSE - see above. :rotfl:

And MFD I am not obsessive!

jillie1974

omg!! thats horrendous and what a despicable attitude!

and they are meant to be helping???

i would definitely take it further.

and to say that a staff member is 'desentisised' is terrible.

is this a uk verson/link to a US group? if its linked to a US version or part of a wider UK organisation i would definitely get in touch with the highest person you can do.

even I (with no actual experience of someone with autism) know that routine is a major part of theri lives and that new people and situations can be difficult to deal with

(((hugs))) to all of you
x