oh I do wish people realised how easy they have it

[2shoes]

just a bit of a moan, to get it out of my head.

just read a thread where people seem unable to cope with toddlers.oh wtf would they do in our shoes for a week
my BIL And SIL have jetted of with there 2 nt teen sons for a holiday, I mean a real holiday, not the type I will have in a week or so, where I just move to a different location and work twice as hard.......

moan over, green eyed monster back in it's box

imo it isn't about comparing more about sometimes envy.

sn is all about need imo.
not the level of sn.
at dd's school there are some young people who are really sever, much more than her, they have lots of health stuff, an LD'S
but just because dd is "less severe" than them doesn't stop her from having a whole new set of issues.
frustration/sadness/anger all the things that come from bing stuck.
so she is very demanding because of this.
useless to compare the 2 imo.
that is my example.
we are all in the same sn world.

I agree, 2 shoes/

I think the problem cones when needs aren't met. Until the very good local provision was opened there was nothing for ds1. Nothing at all that he could attend and I got so fed up if trying to and failing to access do called SN schemes when they blatantly were inaccessible to him. I don't think I would have minded if they'd advertised suitability - but they didn't.

Same with say the NAS - it claims to represent the spectrum but for (mainly political) reasons doesn't. They'll refuse to run classes for parents of kids with non high functioning autism, but then claim to represent the spectrum. That makes me cross - if they admitted they don't represent us I wouldn't have a problem.

So yes yes to different needs and impacts but I'd live to see more understanding about the differences. I'm sure recognising the different needs would low more to get their needs met as well. I've lost track of the number of times I've been given well meaning advice that is never going to work because ds1 doesn't gave the understanding. That's meant in a factual rather than competitive sense though. Providing achenes claiming to be able to meet his needs can I don't have a problem. When they claim to meet his needs but don't then I start banging on about what he needs - which also involves talking about his level of disability. Iyswim.

foloowing on from Fanjos reccomendations for anyone in Scotland there is also Linn Park in Glasgow for SN kiddies and siblings.
Sensory room, soft play, adventure playground, wheelchair accessible swing/roundabout etc.
The Glasgow schools use it thru the week but its open to all at the weekend and can be hired for parties etc

i did of course mean following!

We were lucky enough to eb away last week but my NT nephew was there and blimey my aoprents don't get it! there's only 6 months between nephew and ds3 yet they think ds3 is so much mroe able (ASD< attends SNU) than their precious little prince ('we have cared for him so much we think of ourselves as his extra parents'- subtle huh?). To teh extent that when she took (offered) ds3 and nephew to the toilets and nephew shouted I want nannneeeeee she left ds3 by a busy road to go in and wash his hands. They are 6, and of course nephew plays them: insists on being dressed by them, controls every morsel he eats ('you're lucky to not to have to deal with that'- yeah right, ds1 (also ASD) sees a psych for eating disorders and not drinking ffs) and kept telling me how nephew is so much more vulnerable.

Now, nephew is tiny as he was a premmie but is totally NT and doing well, whereas ds3 will need some form of lifelongc are and it basically really pissed me off.

And now I have whinged (ta 2shoes) and can move on.

And we had anopother row abouut working today

I don't like being alone all day (he was out with his mates) adn he said what will you do when I am back in FT work outside house (self employed atm but won'y always be home based as he is now whilst he gets qualified)

I pointed out that I have no bloody intention of being stuck at home becuase I want a job as soon as ds4 is in ft school (2 years)

And if that means he has to comp[romise on his dream job so be it

Give him his due he does agree it has to be a bit of both but I wish i could do something outside the house. There's even a CM would take ds3 now but she can't as school run clashes with SNU drop off (and takes 2 of us most days as it is- one to wait in and one to collect otehrs from school), even if we find someone for ds3 there's so many stupid practical hurdles that without both giving up 40% of what we want we don't stand a chance

Sancti that sounds dreadful (both your week away, and situation with work etc). Your parents' attitude would have really pissed me off too - would have had gritted teeth all week.

I am longing to go back to work at some point too, for the break away from dcs if nothing else, but dd is only 9mo, and ds's situation (re nursery/preschool/school) needs some serious thought over the next year, so I can't even really make plans as we may eg have to move area if there are no suitable schools, not sure of ds's out-of-school care needs yet, etc.

saintlydame you never do it in a competitive way. It is always factual/ descriptive.

I guess I'm talking about the black and white categorising of 'my child is in a wheelchair/ has down's syndrome/ has autism/ has epilepsy/ has Aspergers as on other thread ' and then assuming that that category means the same for everyone in that category and then assuming that blanket comparisons can be made with someone in another category.

Distinctions have to be made. Your son's autism is not my son's autism and I agree with you that more recognition needs to be given to different types of autism. I don't really get the new DSM proposal of putting someone who is independent and can run a home and a business being in the same category as someone who will need lifelong 1:1 care.

So yeah, there are different levels of disability but it's the competitive bit I object to, and the generalising.

oh yes agree completely.

I also think recognising differences can help direct appropriate care. For example my son is unlikely to have mental health needs - if he does it will be because he's not getting out enough, but he is unlikely to ever be reflective. He's definitely aware that he has autism and at times it bothers him, but if he is given opportunities to be active (which can be the difficult - or from the point of view of the LA the expensive bit) then he seems to be a very happy soul.

Someone who is higher functioning and having to be more independent is more likely to need support in the area of mental health. I don't see how appropriate support can be given without recognising/identifying the very very different needs.

I don't really understand the reasoning behind the new DSM. I think it is being criticised from all sides.

I am in favour of the new DSM. DS has AS and I get tired of people judging or minimising his difficulties because he seems able at first glance. People think I'm misusing the term 'autistic' because he's verbal and able, or seeming suspicious because we get DLA and have a disabled cinema card. Even the local disabled childrens' centre said 'Oh, you might not qualify for Family Fund, he doesn't sound that bad.'

TBH though I don't see how the DSM will alter access. All the 'big' services DS1 gets (such as overnight respite and SLD school etc) he gets because he has learning disabilities. It's something I've come across in the autism community quite a lot - the idea that we're 'lucky' (I have been told that) because we get overnight respite & higher rate mobility and because ds1 will, as an adult, get 24 hour 1:1 residential care. They don't seem to realise we're not getting it because he's autistic we're getting it because he's severely learning disabled. He's never been able to access any of the autism specific services because they don't provide enough supervision for him. I can't see how the DSM will change anything, other than make it even harder to carry out sensible research because an even more diverse group is being treated as one.

(Just to put this in context I'm a senco)

It's not even the differences between disabilities which is an issue and needs being judged on perceived needs for that type of disability, rather than on individual basis. I find a massive issue is how well some families can form-fill and can/ have support in filling in forms with all the key points to access funding etc. My sister was able to claim and access everything she needed as she had a family round her who were teachers/ academics who knew the system, what to write and could write very well. I see claim forms now at school which are rejected or statements turned down simply because of the poor phrasing on the form and lack of key points. THese kids often frankly have far greater need and so do their families, but I do see the middle class families generally accessing support better (bar the most severe needs). An example is the autistic boy who I discovered in a chat one year into school lived in a one room flat sharing the front room (and a sofa!) with his brother. This is a child who hated physical contact! We directed the family towards the support they could access (actually ended up with mother getting own flat away from abusive father with the boys). He is now able to function in mainstream full time again without the stresses of home life. On the flip side there's a very clued up family in school who claim dla/ have a statement upon entry to junior school whose child has a similar level of need. I think it's a shame how parents have to fight for recognition of needs, the system forces them to prove over and over and form fill again and again. It's enough to make a single parent crack filling in a huge form on a deadline with a child with 24 hour needs! It's disgusting (well at least from my experience in school) how families are left to chasing help.

By the I think it's amazing the poster who said people see respite care as a bit like a free holiday..just...wow.

IME it seems in the minds of service providers and proffessionals they seem to see children as either severe in LD terms and then they may offer respite or HF in which case they may offer some support in terms of therapy etc.... but it appears there is no cross over.
ds2'S Psych has known him (vaguely) for a number of yrs, in the past she has mentioned respite and support for us as a family, but nothing for ds2.... then all of a sudden at an appnt he responded to her & was able to engage with her, all of a sudden she was "excited" and felt she could work with him & offered some actual therapy sessions.
FFS if the so called professionals make such assumptions and categorise children what hope is there for the average joe public.

And Saintly, the NAS for us have offered nothing. They seem to have some standard literature and thats about it.

StrawberryCake - absolutely.

Even us meeting on here have taught each other heaps and we have all learnt about how to do things, what's available, and even about a wide range of alternative treatments.

But if you don't stumble across this site, or aren't literate enough to enjoy participating, or don't have a computer....

I too find it hard to see what good will come of "an even more diverse group is being treated as one".

My sister, who has a dx of Aspergers, is pretty mild in terms of her ASD 'symptoms' and can live (largely) independently and (with a degree of difficulty) hold down a job. Her more severe needs are her mental health needs: severe depression, self-harm etc.

J has those MH needs too but this is accompanied by what the ADOS and CARS scores show as severe autism...but he isn't, not in the sense of functioning. He's in mainstream, very very verbal, pretty able academically in areas he likes e.g. ICT/ history but needs 1:1 aand supervision 24 hours a day. He has no sense of danger whatsoveris very violent and volatile in many situations but meek and mild in others (usually when very relaxed at home).

There are some similarities between J and my sister but I would definitely not just lump them both together as the same thing because my sister has far more independence than J will ever have. Yet she is obsessive in her need to compete with him and gets very upset that he gets high rate DLA and a full-time Statement and the offer of direct payments because she never had them. 'But we're both autistic', she wails...she can't see that they are poles apart, both from each other, and also from someone with autism who is non-verbal and has learning disabilities (which neither of them have).

Autism isn't one thing and I don't see the benefit of pretending that it is except for those people like my sister (and their parents). She sees the 'all-in-one' classification as a way to validate her difficulties and stop people saying 'well, it's only mild Aspergers' (which it is) as she feels she'll then be able to say 'I'm autistic' and access more services (cos here autism dx = services and Aspergers dx = f all).

It has no benefit, in my eyes, for anyone anywhere further along the spectrum and I don't understand how this will make it easier for anyone except the people giving the dx as now there will be no debate about what to put on the dx report. However, this also leads to a lack of clarity which makes appropriate support harder to provide.

mrsturnip: "we're not getting it because he's autistic we're getting it because he's severely learning disabled."

I hope you don't mind me asking, but this seems unbelievably appalling to me. I am at the start of the process (ds is being assessed so no dx yet, let alone any idea of what will happen next), so don't know how it all works, but if your ds was severely autistic without being ld, would he not 'qualify' for higher rate dla, respite, residential care etc??

givemevodka you mention another thread....whta thread?
(I can't remember it so might have missed it)

2shoes over on AIBU, something like 'AIBU to think that Aspergers shouldn't be used as an excuse for everything' where posters go on about how anyone can be taught right from wrong and all this about ASD as an excuse is just disgraceful...and then some more rational people pointed out that perhaps this wasn't quite the case 100% of the time.

thanks, i did see it but gave up after one day.

baily- the severity of autism he has couldn't come without learning disabilities as he has for all intents and purposes pretty much no language, and if you don't have language you will have LD's. He's sharp as anything in many ways, no memory problems or anything like that, but having to make sense of the world without language.

I don't think he would get resi care as an adult without LD's - but I also don't think it would be appropriate, you would want someone without LD's to be living independently - with support if necessary, but not resi. He wouldn't access the respite he accesses without LD's but there would be a whole load of other play schemes etc that he could access which he can't because of the severity of his LD's.

He would access services -maybe not higher rate mobility or care, but tbh unless he had severe challenging behaviours he wouldn't need the level of care and supervision that he needs. He could access services which provided a different (lower) level of support - but tbh the level of support he gets now would be inappropriate if he didn't have LD's. So for example any services he accesses needs locked doors - I wouldn't want that for (NT) ds2 and ds3 as it wouldn't be appropriate for them, likewise if ds1 had the understanding to stay in a group and the understanding that cars can knock you over and kill you and you can fall out of windows if you lean out far to look at something then I wouldn't want a locked environment for him.

Locally the one area he would do a lot worse in if he was higher functioning would be education as there really is nowhere near enough suitable provision for those with HFA/AS in our LEA. But that is partially local lottery. The area we moved from had nothing for him but far more for HFA/AS.

Ah I understand (actually I did mean to say in my earlier post, perhaps the two conditions would almost inevitably co-exist and compound each other - not put very well but hope yswim).

It's mainly about different needs I guess. Ds1 does access quite a few services because of his LD's. Those with higher functioning kids who get frustrated that he has services are misdirecting their irritation I think. DS1 isn't taking services from them- they wouldn't want the services he has - there's just a gap in the provision their child (or they) need (esp things like drop in support for young adults with AS) - but that irritation should be directed at the LA and seen as something separate. iyswim.

But that's the sort of reason why I think it's essential to note the differences rather than use one name for something that is hugely variable. If we don't do that we can't hope to provide services for everyone.

Just read through this entire thread and although we ae still trying to decide if our 4 year old needs to be assessed for special needs i can totally sympathise (sp) with you all.

Ever since my son could walk he has been high maintenence and I dread going out anywhere with him - shopping, McDs, cinema, swimming, even the bus journey to and from school every morning is a nightmare with having to get hm to sit still, and then to stay in his seat and not to climb over the seats or get up and open the window, shut the window, ring the bell too soon, i could go on.....Then theres the walk from the bus stop to school where he just has no sense of danger and after several near misses by cars and vans i've quickly come to realise that even if he is a few feet in front of me i have to be ready to run incase he does something unexpected. And then if someone so much as stops to talk or calls my mobile i really cant stop because my mind is on what he is up to - total nightmare!

At the moment he is still in nursery throughout the holidays 2 days a week but i am dreading (maybe not the right word, don't get me wrong i love spending time with him) the next lot of holidays because starting school will mean no nursery and at the moment those 2 days mean doing the things with my other two that i couldn't usually do, like swimming, cinema, shopping even (although now i just tend to leave them all at home in the evening with daddy and go by myself just for an easier life and much cheaper shopping bill!)

Ummm. Jack - sounds like you do need to get him assessed for special needs.