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SN children

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Original poster

Short Documentary Film on Autism Online UNTIL SUNDAY

41 replies

Davros · 20/05/2006 20:08

Documentary Film on Autism Stuns Internet Viewers
"Autism Every Day" produced for Autism Speaks.
From the Autism Speaks Website: Autism Every Day is a new film produced by Lauren Thierry and Jim Watkins of October Group and Eric Solomon of Milestone Video. The film was screened at A New Decade for Autism, a fundraising event held May 9, 2006 in New York City, and subsequently broadcast by Don Imus on his show on MSNBC.
Can't get the full link to work so go to this one and you'll see a link after the Intro.
\link{http://www.autismspeaks.org\here}
It can be seen until Sunday.

OP posts:

Jimjamskeepingoffvaxthreads · 20/05/2006 21:37

OMG Davros, that was brilliant. The first shot (kid in red coat lying on the floor screaming) was me today (ds1 wanted to shut someone's front door, I wouldn't let him). The talk about escape (ds1 has worked out the 3 locks on our front door and got out twice last week, I had to get an extra lock fitted on Monday and wear the key round my neck when he is here), even the bloody debt - money spent on autism. My life.

Thanks you

And I will bump this, because some weeks it is important to me that people understand what it is really like.

sphil · 20/05/2006 22:40

Just watched this - and some of the video links too. Really summed up how I'm feeling at the moment - especially the part when one of the mothers said that you get the diagnosis and then think "Well, I'll just work really hard for a year and then he'll be OK. And then a year goes by and you think 'Well, maybe another year' until eventually you realise that this is for life." I think I'm only just coming to terms with this and it's bloody hard.

I feel like I want all my friends and family to see it too - because DS2 doesn't have 'in your face' behaviour problems I'm always getting

comments like 'Well you're lucky that he doesn't... At least you don't have to ...' etc. And I know I sometimes invite those sorts of comments by always stressing the positive. I would love the people I know to see those mothers telling it how it is - and then understanding how it is for me. I just don't feel I can go on and on to my family or my friends with NT children about thwarted dreams and how autism has taken over my entire life but I still want them to understand.

Thanks Davros - why can't we have something like this on British TV?

Jimjamskeepingoffvaxthreads · 20/05/2006 22:44

sphil- I think the age your ds is at is really hard for the acceptance bit, that does get easier (partly because it all becomes clearer and you find out where you are heading iykwim, when they're little there's not way of knowing. When ds1 was your ds' age I found I was all over the place, from high hopes to pits of despair).

sphil · 20/05/2006 22:58

God - absolutely! He asked for 'i cream' yesterday and I was over the moon. PECS training is going really well and it seems to be motivating him to ask for more things using words as well as images. But at the same time his autistic traits seem to be increasing - lots of vocal stimming, terrible wakefulness, greater sensitivity to noise... and that's when I come down with a resounding thump!

Jimjamskeepingoffvaxthreads · 20/05/2006 23:06

Asking for i cream is brilliant. DS1 is much more vocal when he uses PECS. The rest of the time he is being vocal is when he's doing something he shounldn';t (like pinching me) and then saying what I would say to him (so hands down- ay own, or no (an) et etc) He likes the predictable response.

Mind you he impressed me today, we came back in from a trip out and the washing machine had finished (I'd put it on just before we left). he was not impressed, so he shoved me upstairs to the dirty washing basket and didn't give up or stop shoving me until I'd put another load on. Who needs speech? :o

Christie · 20/05/2006 23:39

This reply has been deleted

Message withdrawn at poster's request.

Jimjamskeepingoffvaxthreads · 20/05/2006 23:47

ha! Just like ds1. I only really understood why he does it a couple of weeks ago on reading the Intensive Interaction book. It's because its an exchange he understands (and is often quite a strong exchange iykwim- especially if he's hanging off me). She talks a lot about the need some autistic people have for you to repeat what they have said, espeically when speech is unclear (ds1 is really like this). Apparently that's a normal stage of development (I do remember ds2 doing it as well), but of course they are stuck there.

eidsvold · 21/05/2006 03:55

WOW - missed the last part - the no surrender part.... just amazing... totally speechless.That is brilliant.

Original poster

Davros · 21/05/2006 06:53

I don't know why the message I got with this link said its only available until Sunday and I'm not sure that's true, I hope not. I think it can be copied though.
It really is the closest thing I've seen to how things are for us and I thought it was brilliant but it did upset me. Sphil, you have really summed up what it can be like, there's so many stages WE have to go through, never mind our kids! As you get older and more jaded (like me) you do huff when you hear people saying the "at least you don't have to...." "at least he can...." etc, although they hardly say it to me (just one insensitive "friend" who should know better), but I hear it said to others who have kids who are so "capable/verbal" etc but that doesn't make it any easier necessarily.

OP posts:

2mum · 21/05/2006 09:48

I couldnt believe the similarities with the younger kids between my son whos 3. I did feel a bit sad watching it especially when the woman said about the wedding and she thought her son would never get married and have kids. I dont want to think that way about my son who knows what can happen in the future.

batters · 21/05/2006 11:39

This reply has been deleted

Message withdrawn at poster's request.

2mum · 21/05/2006 12:08

Maybe its the security on your computer? The link seems to be working ok batters.

sphil · 21/05/2006 12:45

It took me a while to get the link to work - I just kept bashing the key .

JJ and Christie - lol at getting 'stuck on' expressions. DS2's latest is 'ready' (because I've been doing lots of 'ready steady go' games with him. He uses it for absolutely everything he wants to do and says it with EXACTLY the same inflection as me. His other one is 'come on' - I wonder why that is? .

Saker · 21/05/2006 14:38

Sphil - Ds2 says "Now come on Mummy!" a lot to me -like you say I can't think where he's got that from.

goosey · 21/05/2006 18:11

Thanks for directing me to this thread JJ.
It is extremely moving, honest, loving and eye-opening, and gives me more insight into how different life really is for parents/mothers.

Jimjamskeepingoffvaxthreads · 21/05/2006 19:20

yes but I'm going to send him to you every weekend as he's always an angel for you :o (We had the new cooker in when we arrived home and he decided to test it out by roasting your present at 200 degrees C- luckily dh found it almost as soon as he'd switched it on. He's very attached to the present actually- keeps walking round with it now :)).

goosey · 21/05/2006 19:53

Delicioso

Jimjamskeepingoffvaxthreads · 21/05/2006 21:52

Oh and as predicted ds2 has been trying to pinch the present "ds1 doesn't like pink, pink is my favourite colour etc etc".

Hope you ds enjoyed his party.....

Blossomhill · 22/05/2006 15:06

Where can I find a link.

Be interested to watch :)

SaintGeorge · 22/05/2006 15:08

\link{http://www.autismspeaks.org/sponsoredevents/autism_every_day.php\Here you go}

Blossomhill · 22/05/2006 15:28

Thanks St George

ntt · 22/05/2006 15:33

That was difficult to watch

What an amazing statistic - 1 in 166! I realise this must cover the whole spectrum, but still. It's incredible how so many can live in society and be so invisible. It just goes to show what a long way our culture needs has to go to become properly inclusive

I'd love to know what the stats for all kids and adults with congenital sns is, I mean cp affects something like 3/1000, ds 1/700 - and that's just off the top of my head - it's got to be a hugely significant minority of kids - ie normal! So why do I and every other mum with a child with sn I've spoken to feel so excluded and find it so so difficut to socialise etc in the way we did before???

Anyone know where I can see sn statistics?

el0fant · 22/05/2006 18:01

Was anyone shocked that one mum suggested in earshot of DD1 that she would have killed her DD1 if it weren't for DD2, who is developmentally typical. To feel it is one thing, but to say it in front of DD1 another. I'm sure she felt there was no way that DD1 would know what she was saying, but that seems like a dangerous assumption to me.

Jimjamskeepingoffvaxthreads · 22/05/2006 19:29

ntt- because it is suddenly isolating, we can't go out with normal groups (think the film shows why), it's just too hard, so we either have to leave ds1 behind or stick to SN groups. Sticking to SN groups won.

I wasn't shocked elofant. I say lots of things in front of ds1 that I probably shouldn't, but if the choice is saying it or stewing on it and joining the other mums who have jumped off bridges I'd rather say it. When you live under such constant pressure, you find that perfect goes out the window tbh.

Jimjamskeepingoffvaxthreads · 22/05/2006 19:31

also ntt- you know what it's like if you try and go out, society really isn't geared to disability. There are very few public places we can access without many pairs of hands and risking a lot of stress.

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