need some input

[needmorecoffee]

I'm doing a report on inclusive education and need some input from non-disabled parents. Already got input from disabled adults, disabled kids and disabled parents but we need to hear non-disabled views on inclusion given the vast majority of disabled poeple have non-disabled parents.
So
Thoughts on inclusion vs segregation and WHY.
Is it lack of suitable support or the actual impairment that leads to parents wanting segregated education?
What do parents know about the sociel model vs the medical model and which do they subscibe too, as it were.
If a child got a suitable level of support plus all the required equipment (look, a flying pig) would more parents be happy about inclusion?
Do parents think co-location will take away their rights to insist on an inclusive education?

Any thoughts would be welcome as we are meeting with the council next week. ta muchly

I think several schools/units for different needs on the same site can work if thought out carefully. When I attended such a school (back in the early 70s) there was not a lot of cross over and mixing. We all knew which building each child attended and at times that could be negative (think silly boys in early teens), but mostly it was positive. Children attending the special building always seemed happy. Doors (and gated walkways)between buildings were locked to prevent wandering! There was also a (privateley run) residential/day school across the fields with beautiful facilities and grounds and fantastic staff. I am not sure how inclusive it all was (only a childs perspective)! Where it probably worked best was for children whose needs fell in between.

Our experience of moving DS2 (6) from special to ms has been very positive. There were a few teething problems at the beginning but these have been sorted (with a great deal of effort on both sides). The school sounds very like yours - geared up for SN - there's a language unit on site - and with great deal of liaison with the special school next door. So although DS2 is now based at the ms school he goes to the special school almost every day for various activities. It's the best of both worlds for him - he is in a class where his peers are both verbal and social but the curriculum is entirely individualised for him. It helps that the school's philosophy is to teach to each individual child's learning style anyway - and they really do it, rather than just talking the talk.

BUT - it helps that DS2 is very compliant and calm in general. He can cope with the 'sensory onslaught' of a ms classroom and is also very tolerant of his peers. His social interaction with other children has improved HUGELY since he started ms - and I think his friends benefit from being with him too! It has also helped that DH and I are confident about being in the school environment (both teachers by background) and so are able to be very, very proactive about what happens there with regard to DS2. I feel as if I live at school some days!

And having said all this - we are still home educating DS2 part time (3 afternoons a week atm). So it's not perfect!

Full 1:1 support in mainstream is still cheaper than a place at an SLD/PMLD school. I looked at the figures at the time- think it's about 2 grand cheaper (although its not easy to get the figures as the LEA present them differently).

ds1's special school has a mainstream unit. I think it works well for the children with LD's. No-one has ever suggested ds1 should be in it

FT 1-1 here is actually 16 hours; I can't find any child who gets more than that no matter how severe their needs, LEA state it's the maximum they award.

But then our LEA is fast getting a really bad name for itself.

hit a new MS block with ds3 today..... they installed a whiteboard in school. So ds3 is doing exactly what he does in a pace where there is a PC / Wii....... tuning out completely unless given access.

maybe p[eople should get involved in these forums and active with the council if they want certain things. Its the same old faces.
Most councils have a gender forum, a senior forum, a race forum, a disability forum, a gay and bisexual forum.
Go join.
The forums act as advisers to the counsellors on the issues of their forum.

I wanted mainstream inclusion for my ASD child because his experience at special school (nursery) was not impressive (lots of well-meaning but ultimately useless half-baked theories about autism, a form of benevolent neglect in my view) and because I wanted him to have the chance to socialise with and perhaps learn from non-ASD kids.

With the best will in the world, he was never going to learn to be social at an autistic specific school, as autistic kids do not socialise (or the vast majority didn't at his school). I also wanted him to have the best possible chance of living in the mainstream world, and therefore wanted him to learn how non-ASD children react to things, talk, play etc etc. For me, the fact that he gets invited to parties and playdates is almost as important as his learning to read.

I also think there is another important point. If the kids in our schools grow up WITHOUT coming across children like my son, or the wheelchair user in another class, how will we ever get a more open-minded society? The kids in my DS's class now see him as just him, with all his funny little ways, and hopefully that's at least one classload of 30 kids who will grow up thinking that disability and autism are just parts of life, rather than something to be shunned or scared of.

But, and it's a big but, my DS has a statement and a permanent one-to-one, and without that I simply don't think the whole thing would work. It would be too much work for the teacher, and he would certainly disrupt the class. I for my part have also worked very very hard for several years on making sure my DS is not aggressive, and on some of his former anti-social behaviours (eg noisy stims). I also recognise that I am lucky that my son's autism does not include any anxiety about noise, crowds etc - as otherwise I don't think he would cope in the smallish classroom containing 30 rumubstious kids.

And of course it's early days .... I have no idea what I will do at secondary school, where the kids are far less sweet and bullying could get a lot more serious. Home education and some social groups are my best guess at this stage. Primary is an easier stage.

Hope this helps - sorry so long!

its fine saying go join but there are so many things

i am on the fairtrade forum, the pta, about to start reading with kids at school

there really are only so many hours in one day, especially when you have a baby and no childcare

yup I know. I'm also on the disability group at the children's hospital as a parent rep.
But I joined the disability forum cos a, i'm disabled and b, I want things in this crappy city to change before dd grows up and there's no point complaining about it if I don't do anyhing.
There's a huge lack in poeple with ASD's in this forum. As in none.

and please don't accuse thos of us disabled people who are doing our best of prejudice.

I think representing ASD is a huge problem though. I've tried it through the NAS and have given up. So many meetings where parents (of autistic children) talked about children like my son as if they are some sort of monsters (because they can't talk or use the computer or do maths etc) and would comment on how 'lucky' they were not to have a child 'like that'. From the things that Amber has said she has experienced the reverse prejudice. The NAS does not (in the opinion of many) represent the views of the entire autism spectrum right now - if they can't get that right then it's going to be even harder at a local level.

I think having some sort of recognition of the needs of people with LD's is essential. They're the group who really cannot talk for themselves very easily and are also the group who are assumed by many (even those who should know better) to be rather uninteresting and not really worth bothering with. They're the group who end up thrown off bridges, locked in sheds or abused in NHS run care homes. And yet as someone said earlier some of the changes that disability activists demand would be potentially damaging to this group (such as fully subscribing to the social model). I think it's essential that we take the time to listen to and seek out the views of those with LD's & if they really can't represent themselves - their carers. Yes it's hard and takes time, but it has to be worth it.

The social model isn't very useful at all for LDs, alas. Or anyone who experiences pain or other sensory issues that really do affect how they can cope with the world.

Those with LDs certainly do get a very poor deal in life, no doubt about it. Yet at the other end, those at the 'capable end' like myself can also experience different forms of hell, and there's a lot of research being done into depression, self-harm, suicide, drug misuse etc resulting from the relentless pressure with not enough help available. Either way, it's not a good picture and the NAS needs to be doing all it can to change things.

I think the disability forum is hardest of all. Race forum, gender forum. easily defnied.
Getting a definition of disability is bloody hard. Not everyone who is disabled thinks they are. Where's the cut off between illness and disability?

Off toa conference for parents for disabled children then an hideous hozzie appointment.

I think you have to remember you are only representing the views of someone with a disability who thinks like you and has the same sort of disability as you.

I recently went to a conference where someone with AS stood up and said what was needed 'for autism'. Except the things he was insisting on (full inclusion in school for example) would have been an utter disaster and totally unworkable for ds1. So you might say 'ok we can say he represents the views of those with AS, but not those with 'LFA'', but having listened to Amber on here I don't think that was true either. He represented himself- the things he needed to make his life with his version of his disability better. But I don't think that he really represented anyone else.

It kind of hammers home how much disability awareness needs to be about the importance of responding at an individual level - what does the individual need?

And lets chuck ideologies out the window. Forget models of disability, that's just imposing something external.

If we started by seeing everyone as equal (and people do not see those with LD's as 'equal'- the prejudice towards LD's revealed in everyday talk astounds me)- and then looked at what that person needed then it would work. The thing that is missing is often an understanding that a disabled person's life is as valid and their well being is as important as someone without a disability. Get that bit hammered home and the rest should follow.

Think we're a hugely long way of that though (judging by public reaction to my son) and would be surprised if we ever get there.

Appreciate it must be frustrating NMC.

Afaik (and I'll admit it's hard to tell because I'm completely out of the loop, haven't the faintest who is "representing" my child or indeed how to find out) representation on our local disability committees is by invitation or election from voluntary associations and these associations are specifically for mentally able disabled people only. So as the parent of a child with a learning disability you are preselected out.

The only exception I know of is the local early years education committee which has one seat for a parent of a disabled child and I have been approached to fill that (it really is like that - bigwigs sidle up to you in focus groups) but wasn't free on Wednesday lunchtime which is when it meets (so they sidled off again.) They didn't seem bothered what sort of disability DD1 had, though perhaps they were desperate.

And as Peachy says, I'm already a parent governor, DH works ridiculous hours (when he's in the country at all) and at the moment we have no help at home. I could find the time somewhere in the day, but I have to be there for the school taxi etc, meetings, hospital appts, cart DD2 to various activities and ime these committees will move heaven and earth to rearrange a meeting round their lunch hour but not lift a finger to move it round the school run which is somehow trivial and frivolous and "mumsy". Getting to Governing Body meetings is a nightmare but there is no way the old buffers on it will meet any later than 5pm.

Not that I'm complaining "at" you iyswim. It must be frustrating when everyone complains about a thing but you're the only one doing anything about it. All I'm saying is that in our area, the way things are set up present - ha ha - "barriers to inclusion".

Peachy- you need to come up here loads of huge statements to kids on the mld/sld border.Though then getting reduced once in S/N school.F/t 1:1 at 28hours etc doen to 1:5 in S/n

Jimjams, I think you're right about the individual with AS who was representing his own views. It's a constant peril, of course, for those of us with an ASD, as our brains are world-class at "thinking only about ourselves" and it's something I struggle with absolutely constantly. But if I'm to do a good job as an adviser, I have to learn all there is to know about disability issues and talk to tons of people and work with tons of people. It helps that I've had far more disabilities to learn about - my own mobility one, and in the family dyspraxia, dyslexia, mental illness, clinical depression. Plus having been an SEN school Governor and a trustee of an autism charity, I've had so many chances to learn. And many friends have children with various disabilities, or have disabilities themselves, e.g. visual, hearing, wheelchair users, M.E, epilepsy etc. If we're putting together a conference for general disability, I have to be able to think about the needs of every one of them and get it as right as humanly possible. Not at all easy. But possible with the right build-up to it and the right training for me and support for me.

'There's a huge lack in poeple with ASD's in this forum. As in none. '

Thats the thing though isn't it- forums are nt generally ideal for people with asd.

Sam keeps getting letters from the council suggesting he come give his views in a young persons group. Pardon??? Sam would choose never to leave the house at all if he could, he currently has a terrible phobia of being kidnapped and that accentuates his need to be secure further. Sam is articulate when he chooses, extremely able (my opinion NOT that of the school!) but a forum simply wouldn't work.

Now if he could contribute by say taping his opinions and posting, or e-mailing then I'd love him to be able to take those first steps into self advocacy. But the forums etc don't work like that. Be there, or don't exist.

Indeed don't exist is quite real- the SS still haven't managed to put Harry on the register! They promise it repeatedly but after 2 yeras in the system still not isted so he doesn't and we don't get to feedback on anything for him.

I could write a a letter complaining, I have done in the past, that would then entail a SW coming round asuring me that they did all they were supposed to and it must have been a (select from comuter blip- my error- junior lacky - message left on my phone I nevr responded to). Anything but their fault.

They would do anything but what they are asked, in fact.

Whilst naming no names, I was very recently asked to be part of a big government advisory panel, helping them to be more disability-friendly. They said "Yes of course we know everything about making meetings ok for ASDs and LDs - no problem". They then sent through forms far too complex for those with LDs to complete. When I asked them for detailed instructions on the building (essential for me), they didn't send them. They'd set up a social event in the middle of the day (How are we at social events?!). The trainer who was running the day sent a CV that was full of metaphors/idioms etc which made it very difficult for me to understand. She was an expert in LDs and ASDs. If they are, why write something we can't understand easily? I asked. I didn't get a response.

I didn't go to the meeting, but I did send in an email response and plenty of background info which they're now using.

Nothing makes me more nervous than a meeting where they say "Oh yes, we know everything about ASDs".

sickofsocalledexperts

"I also think there is another important point. If the kids in our schools grow up WITHOUT coming across children like my son, or the wheelchair user in another class, how will we ever get a more open-minded society? The kids in my DS's class now see him as just him, with all his funny little ways, and hopefully that's at least one classload of 30 kids who will grow up thinking that disability and autism are just parts of life, rather than something to be shunned or scared of"

I can see how this can work with child who have milder developmental disabilities or physical disabilities but for a child with significant delays I do not really think the answer is for them to be part of a social experiment. The answer is all children should have access to an education that suits them. Mainstream does not suit every child. It does not even suit alot of children with moderate learning disabilities yet our government has seen fit to close most of the MLD schools. So where do the children with MLD go? well in our area they go to mainstream, cannot cope, get very distressed and end up attending the sld/pmld school which is not appropriate for their needs. This is not fair on anyone. We need to think about whats best for our own child, not ideal world secnario where little johnny from south road who has never seen an autistic boy will be educated. Often the opposite is the case and little johnnys contemporary gets bullied, gets inadequate schooling, becomes increasingly distressed and depressed and his mother has a nervous breakdown. We do not live in an ideal world and I am damned if I would put my child in that position. My child needs special schooling, she needs to be kept safe. She needs to access academia on her terms. She needs specialist support. She needs to make friends WITH HER OWN PEERS.

Needmorecoffee, not sure if your prejudice comment was aimed at me but people with disabilities can be prejudiced too.

Also the flip side of the education argument and inclusion is. If education being fully inclusive does not work on all levels, what about inclusion socially? Why are children with SLDs not allowed to go to normal swimming clubs, brownies, football club etc etc. Its not just about school. Its about making things accessible on all levels. Surely an inclusive football club would educate people more than a distressed child in the class who can't learn at the same level or way as them, oh but we will try anyway

'"I also think there is another important point. If the kids in our schools grow up WITHOUT coming across children like my son, or the wheelchair user in another class, how will we ever get a more open-minded society? The kids in my DS's class now see him as just him, with all his funny little ways, and hopefully that's at least one classload of 30 kids who will grow up thinking that disability and autism are just parts of life, rather than something to be shunned or scared of"' (sorry dont want to you to think bullying you just ahd a thought)

I wonder if the inclusion of people like my ds1, AS / HFA but a real aggression issue is working against the social inclusion of other disabed poeple?

When those children in his class whose aprents have written letters asking him to be expelled- seven atm I believe- grow up, will they think all people with ASD are like DS1? because ds1 is very much an extreme.

DS1 is righty in MS for his ability but as his teacher says, long term (post teens)
MS simply will not take him and the AsD unit will rank him too mild so I suspect a pupil exclusion unit will be his final place.

My son isn't aggressive. He very rarely hurts anyone (except himself) when frustrated or cross (he hurts himself a lot).

However a lot of his behaviour can end up hurting someone else (adults usually) because he thinks pinching is funny, spitting is funny, kicking is funny. This needs a very careful response from people who know what they're doing if these irritating one-off type behaviours aren't to become something dreadfully awful that begins to limit his ability to go anywhere or meet anyone. Maintream teachers just do not have the training, interest, time or ability to deal with this sort of stuff.

He's non-verbal with limited language so there's no way that it can be dealt with in a standard way, and it can quite easily be very different from setting to setting. What I do at home makes no difference if school makes a total cock up - he doesn't carry good behaviour at home into school (or vice versa). Wherever he goes he needs people who know and understand and who have the experience to respond to any incidents appropriately. I suspect the same is true for many children/adults with LD's.

I agree, what is more we (as in my family) need teachers that can understand that the tiniest thing- a swapped snack, a mufti day- might not affect ds3 at school but it does hugely at home (recently we've had to restart potty training and the trigger was the teacher swapping his dried fruit bar for a banana). MS teachers don't seem to exist within that culture of continuiity and that will always negatively affect a child with ASD.

Do people with ASDs socialise? Yes, we do. I use 'we' in the widest possible sense of LFA/HFA/AS and anywhere in between. We do, but it looks totally different to how you expect. We do it our way, the way that fits with our needs, and in far far less quantity than others. No, it's not the same as learning to socialise in an NT way, which is I think what is often meant, but it's a different kind of socialisation, and for us, a valid one.

I vastly prefer to talk or work or just 'be' alongside someone rather than face to face with them. I won't choose to make direct eye contact with them, but I can see a surprising amount out of peripheral vision if I need to. I'll socialise online rather than face to face with people. If I do socialise directly, I prefer one to one, and it'll often result in me needing a day off to recover from the strain even after 4 decades of skills training and practice and all the brain ability I have. I can 'do' NT behaviour so well that there's not a soul who can spot me for what I am, but the cost to me is horrific. I got so worn down by it that I ended up with heart problems.

In a meeting, I can cope with the structure. The moment the meeting finishes, anything could happen, and I'm usually first out of the door before I have to do anything social. Yet people still (mostly) respect me and work with me and are still friends with me, despite all of this.

Do we need social skills training? Yes, in the same way as if we'd landed here from Mars and found we didn't speak the native language and needed to learn the basics for "which way to the loo" and "Mine's a glass of red please" etc (well, surely two essentials ). But our own 'social language' is not a broken sort of your language, but a language and way of being all of its own.

Does this mean we don't need help? Absolutely not. Just the right sort of help. Does this mean that children can't re-learn social skills without it exhausting them? I've no idea. I don't think anyone's ever tested them for happiness before and after, just measurable NT-appropriate responses.

I worry about anyone emphasising the social aspects before their wellbeing. Most people get it absolutely right, and make the right choices and for some children the socialisation is vital, so this is not a criticism of any one parent and any one child's situation. But generally, there is just such emphasis in some part of society on 'normalising' us and people saying "yay, they're cured!" when we're not.

What would actually help us I think is specific training and provision so that we're able to communicate our needs and have our needs met, specific funding so that we have an education we can cope with, specific assistance to find approriate jobs for those that are able to work. And society being aware of our differences so they don't bully or pity or deny or minimise, but respect us and work with us to enable everyone (us and them) to learn together. When there's respect, friendships follow.

I hear what people are saying about schools needing to respect us as individuals by having us in their midst, and for some children it works well. But for the majority of us, that's not a reality. We're just sitting targets for bullies, predators and perverts, whilst the rest of the class look on, wondering whose job it is to do something about it (not theirs -only about 1 person in 100 actually stands up to a bully on someone else's behalf, I read).