Programme about autism?

[snuggles3]

Hi all

I breifly saw a programme advertised thats going to be on boxing day? I think its was called raising Thomas or about Thomas, i didnt catch what channel or time, anyone heard about it? I will prob record it cus it will be a bit to emotional for me to watch.

But what are we refering to as 'severe'? Many autistic children can have 'mild' or 'moderate' autism but could seem alot 'worse' because of their degree of learning difficulty.

My ds has a diagnosis of 'severe' autism by a leading world expert, but he can do as much or more than Kyle.

But just because ds doesn't have learning difficulties and can talk to sentances doesn't mean that his autism is less of a problem.

This is the reason why people park in our disabled space or question why we should get moved to the front row at the theatre (another story)...because he seems 'able'.

My main objectiion to using the term severe in the way that they did is that it's depressing for us as a family- if he's severe then god knows where ds1 is. And it would give an unrealistic idea of what ds1 is capable of - for example he can''t do picnics in the park, or sit and listen in the way the boy did, certainly couldn't go to church, nor be let go off outside in the street. And as for 7 GCSE's. I'll be pleased if he learns to write his own name. I do think it showed well the massive problems that a child that can talk and appear "normal" can have, and I have often commented on here about the problems children with HFA/AS can have. But his level of functioning, and more importantly the things he could access were way above any of the severely autistic children in ds1's school.

I'm worried about offending- because I do know how difficult life can be for peolpe right across the spectrum, and in my last post I wasn't trying to downplay that. I spend a lot of time explaining to people that we can't do stuff because of ds1- for example someone wanted me to bring ds1 to the cinema a while back, another person wanted us to meet in a big group (with all 3) in a child friendly pub. We just can't do that sort of stuff- and that's the biggest difference I see between my situation (and that of ds1's classmates) and a friend with a child who is similar to the child in the film- bit further along the spectrum- her speech is odd iykwim- but similar) she can access a whole load of things that we just can't. Like the cinema, and holidays, etc. None of it is easy- and her autism affects the entire family enormously. I just felt this film gave an unrealistic picture of activities a severely autistic child would be able to do/access- and for anyone watching when I next say "I'm sorry we can't because of ds1" they won't understand why. Not trying to downplay the very real difficulties of children who can still access those things.

Jimjams maybe the holding it together bit is art of it- the problem I have is that I only meet kids like Sam with HFA, or the nes I used to work with who lived in a unit because they were considered (and were) a risk to tohers. Have little idea about the in between section. Harold never really understands much or tries to communicate, but he can interact, be v. loving ewtc- then he'll just pace out entirely and go behind the closed doors and you canot get in. There'sone of these episodes captured in sloce up on the nativity DVD, i am hoping it didn't freak the other parents too much.

Not that harry has even seen an preofessional so a DX is a joke! He's waiting for Paed and SALT, can't be referred anywhere else until after.

The combination is a laugh-a-minute. San can't share won't ahre, DS3 can't undertand... ob bliss

Sam is getting rude as well, he picks these things up and then doesn't have the empathy not to hurl them at you endlessly. And of course its Christmas- season of joy for all asd famillies. A meltdown a day keeps sanity away (sigh}

I don't think its about language etc. I've been pondering this. I went out with ds1's class- all severely autistic - the 2 that were completely uncontrollable were ds1 and another boy who was the most verbal (he talks "normally"- completely, can read etc). There were other children there who were say less accessible, more shut off - and more "severe" but were alsmo more passive. The one thing that was common to all the children is that they couldn't access the things this boy could- and that's where I think it was unrealistic to pile it on as him being severe .

Something that Ros Blackburn talks about- she said in her talk that she can't access anything unless is is set up for people with profound and muliplte learning difficultiies- give her a PMLD level of support and she can do it- I think that for me is my definition of severe autism. Never mind that Roz can stand up on a stage and talk to 100's of delegates she can't have a trampolining session without a huge level of support and can't walk down the street alone. It's something that I have started to bang on a bit about because locally projects with very high levels of support have been closed in favour of "inclusive" projects- supported mainstreasm activities and the ds1's of this world cannot access those things at all. There are no activities locally that he can access (something I am trying to change), nothing at all. I think it can be hard to understand that. We've recently re-started the NAS locally- they want to encourage more parents of children from ds1's school to attend- but currently they don't offer anything that they can access. It's things like family day trips to the zoo- we can't do that. I'm trying to organise trampolining sessions - because I think providing its set up properly then it is something that people from across the spectrum can access.

We have an NAS support group here, a drop in, but it closes in the school holidays so it is useless to us, that's when we need it.

Sam can access thngs- his violin sessions are going wonderfully, nothing else really lasts though- he has gone off rugby (but still goes, he needs excercise) but that is set up for SN; they don't freak when he runs round flapping during the session. Infact they seem intrigues how his disability id graduallyr evealing itself as he grows to know them.

Most things though are no-no. Swimming happens bevause Mum ives near the river / docks so he HAS to have it, as he could feasibly jump in. But meals out withut 2 adults couldn't happen; even with two often one of us is taken up with restrqaint. But we feel we have to do it for ds2.

Hrry on the other hand is mroe 'severe' and has no useable language (can now do mine, Harold (if he sees a photo) and some objects) whatever his final DX is; but he is so passive. Unless he's with someone he doesn't know. People at Uni say oh just let me have him for an hour, so you can get a rest.

Ha bloody Ha. He'd scream.

FWIW we went to see FIL yesterday and his explanantion for DS3 was to turjn to Dh and say 'Yeh but you're backward'

I think not.

Just rewatched After Thomas and spotted something I missed on first viewing... Kyle is studying Childcare at college. Great to hear of another male soon-to-be child carer. Wonder if Kyle will go on to work with children with autism, expect he might.

UPDATE:

After Thomas will be available on DVD from 7th May 2007. DVD details and online ordering

ITV may also be repeating AFTER THOMAS, possibly on Bank Holiday Monday (7th May). So keep an eye on the schedules.

nannynick- are you male? (sorry that never occured ot me before!). DS3's nursery has a male childcarer.

Yes, I'm one of the men on mumsnet And I am one of the few (I think 2% was the last figure I read) male childcarers in the UK.

I do wonder if my gender has anything to do with how children with autism react to me - shouldn't make a difference - but I do wonder.

ds1 loves men! He likes big high fives and been thrown in the air (difficult for us laydees now he's almost 8 )

He's pretty high functioning dino, so its not depressing really. an it's all alright in the end type story. my friend's dd locked her out of the house the other day- I reminded her she was like the dog woman (you'll understand if you watch it).