Here some suggested organisations that offer expert advice on SN.
do you think.....(29 Posts)
To the first question - yes. Although in an ideal world all "mainstream activities" would be accessible to all. But where there are practical issues preventing access, then special needs children should have priority re places in activities aimed at them
Re the "diasability" issue - a tricky one. DS3 is on the Register of DIsabled Children in our county - because he has a severe phonological disorder/verbal Dyspraxia. It just sort of happened when he got his Statement. But he would have no issues re access to most activities. DS2, with his bog-standard motor Dyspraxia, isn't registered disabled but would find, for example, any sort of football skills/outward-bound type thing inaccessible. But the thought of someone in Children's Services sat in an office making those distinctions would make me very uncomfortable. To sum up - I don't know .
well it depends
ds2 with dyslexia gets no support, why would he? I clasds him as NT in every way
otherwise though its impossible to judge- some would say ds1was able to access things and he is physically but he has to have such high levels of support that it wouldnt be feasible. I do send him to a ms scheme but the only one I trust costs so much i only get 2 days this summer
The schemes here are mixed ms / sn, the only one ds1 can access (for all but the most severe) has an open door policy where kids can wander out; therefore its paently not suitable (its for over 8's)
I was going to send ds3 to a local chrch club (2 hours a day) with his brothers to transate but i chickened out, he's not ready
oh and I think kids in need should get priority- sn kids, but also those who have sw involvement, or who (like ds2 if the bloody unit hadnt lost his forms and refused to send more) are classed as carers / or siblings of sn kids who need that bit ,more support sometimes iyswim?
Kids with additional challenges, I'd call it.
This is an extremely difficult question.
As a mother of a child with special needs, other people (usually without a child with special needs) often tell me that there are other many kinds of "disability" such as social or cultural disability.
I remember when we inquired about a mainstream school for my son, we were told by the headteacher: "Your child is disabled but some of the children here come from a home without a book - that is a disability."
I was enraged by the comparison between CP and coming from a home without a book (I've been in houses worth £3/4 million and not seen a single book) but when I mentioned this to friends, I was astonished to find that most sympathised with the headteacher.
Sorry if I'm rambling. To return to your question, I think it depends on the amount of funding available for any scheme. If funding is extremely limited, then it should be restricted to the most severely handicapped. If extra money is available then the criteria can be widened. My son used to go on a playscheme and the children were allowed to bring a sibling or friend along. This meant there was a more integrated approach.
I think that if a child is unable to access mainstream activities then yes they should get priority places when it comes to things being organised for children with SN.
My two with ASD would find it easier to do certain activities as part of an SN group but generally could access mainstream stuff as long as the adults running it had some kind of understanding about SN.
I think that if a child's SN means that it's absolutely essential that the staff are fully trained and/or that they need the physical environment of the place where the activity is being held (eg secure doors and windows to prevent escaping, 'toddler-proof' safety equipment still in place even though the children are much older etc) then they should take priority.
hmm I don't really know
my dd1 is moderately physically disabled but has been excluded from things like sn swimming because that is just for children with learning disabilities
it a) means she cannot access things that actually, physically, she does need and b) at an age where she is forming her own ideas about her identity as a disabled person, she is not able to mix with children with multiple disabilities because she is not disabled enough
she can access mainstream activities but is often the only disabled child there, and that must be tiring for her
Interesting - this came up at our local NAS committee meeting this week. I told the NAS manager that there is an opinion that the NAS no longer caters for the most severely autistic in terms of courses they run, clubs they set up etc (I know they do in some schools). This was in response to a problem that had arisen when someone who has a severely autistic child attended a Help course which was advertised as being suitable for all but was very obviously aimed at AS. So the mother concerned got upset (I knew the background, so was able to answer the enquiries).
I think there needs to be different schemes for different levels of disability. And different support groups etc (unless the support group is large- nothing worse than a small support group with you the only one from one end of the disability spectrum whilst everyone else is at the other)
I have been to many events supposedly suitable for my son only to find that he can't access it because lots of children who are far more able than him are there. This means that the scheme has no locked doors which is essential for him to be able to access something, and an expectation that that children will queue - impossible for him without being held down. Poorly trained volunteers gabble away at him etc. If I see something is open to all with ASD/AS I don't go unless I have at least one other adult because I know it won't be any more accessible than a standard mainstream event. And I treat it like a mainstream event.
I think events/courses/provision needs to be clearly aimed at particular sectors. And this needs to be be clear in the information. I would have no problem seeing a scheme is set up for the more able and I would know not to waste my time going. Ideally there would be a mix of schemes allowing everyone to access something appropriate.
Also at the moment councils can get away with thinking they're providing provision for disabled children when they might be missing out a whole sector. For example locally most provision for playschemes is provided by an inclusion scheme with further provision provided by a charity that is not suitable for many of the more severely disabled children (they won't take children with epilepsy for example and it's no good for children who don't understand they have to stay in the same room- too easy to escape). There are only 6 places a day in a special playscheme for the most complex children. And that only caters for particular age groups. No-one has been given the hours they wanted (or more to the point were promised by SS- they really haven't got a clue they were promising stuff that isn't available) and there is a waiting list. So families with the most complex children have nothing available to access. They get offered direct payments but can't find anyone with the skills. In the meantime the council ticks it's checklist of 'provision for disabled kids' .
I haven't read threadyet as want to answer the lovely fio honestly.
I think they should be first for those who cannot access mainstream activities. and yes I think they should get prority.
there are so few arround to me it make sense.
I can't see why someone with mild dyslexia and or a very mild condition/disability. would want to be at a sn play scheme imo.
(now will read thread)
'Ideally there would be a mix of schemes allowing everyone to access something appropriate.
thats it in a nutshell really
places here are allocated by SS (more likely help at a ms group), as ds1 / ds3 aren't supported by SS (ds1 thrown off as i was non compliant and wouldnt let him attend a setting i felt he'd endanger others; ds3 because they jus6 gorgot him so many times i gave up)
NAS woman would prom ise the earth and never even get baxck to us either
we gave up, we now cope as a family with it all- alarms on doors etc- and just realised there is no hope of any normality. Somehow knowng I just cant do all these things s easier than tjhinking but maybe... with the maybe relying on someone else
Interesting thread. DS has mild SN (language delays, some problems socialising, no physical/health problems)- like Coppertop's DSs' mine could I think access m/s provision if the people running it had a suitable understanding of and patience with SN. But I couldn't assume he would cope at a bogstandard m/s summer playscheme or at m/s activities that are held without parents. The playscheme issue hasn't arisen because I am not working, but may arise next summer. When I have thought about holiday care at all, I've thought more along the lines of finding a sympathetic childminder rather than looking for specific SN provision.
I agree that those who cannnot access m/s activities at all should definitely get priority.
I do think organisers need to consider this more. who are they aiming their scheme at? I have been to so many schemes that are supposedly aimed at ds1 but because they're trying to cater for everyone then they become completely inappropriate for him.
I have no problem with schemes being unsuitable for him. But I wish they would a)make it clear at the beginning and b) realise they they're excluding the more complex.
Unfortunately schemes for the more complex kids cost more, so it's very very hard to find something suitable.
The 'everyone's disabled' line is very depressing. It reminds me of a radio program in which the presenter argued that 'there is no such thing as disability, it's just that children have different levels of skill (or something like that) but then the most severe disability she could think of was dyslexia. That was her idea of the worst case scenario. I think it is fairly common for people to feel more sympathetic to normal children who are economically deprived than to SN children - who are seen as not likely to 'achieve' anything.
I have come across a remarkably common belief that severe/complex children are less needy than 'normal' children - with some sort of assumption that they're little more than blobbish vegetables who don't need to get out and about as they don't notice where they are anyway
My DD is registered 'disabled' (has genetic condition causing overgrowth and delayed development). We get invited to lots of schemes but the only one she has ever attended was an occupational therapy (1 week) scheme last summer and it brought her on leaps and bounds. If she gets invited to any play schemes, we always turn it down because I feel other children would benefit more (whether because they are physically/mentally disabled or because they have behaviour problems). I don't like the organisers to think we are ungrateful so I always say she is at her dads that week (and to be honest, she normally is). She only attended the o.t. therapy scheme last year because she was at her dad's a different 2 weeks in the summer holidays to what she normally is.
My DD can and does attend mainstream activities (swimming lessons, dancing lessons, etc.) so I would not take up a place that might benefit another child.
Saying that, I did get offered to take place in a drawer to win free London Eye tickets through 'Contact a family'. I did take place (as I have on other occasions) and this year finally won 5 tickets (meaning 6 people can attend as I would go as a carer). I feel a bit dismayed that I won so many tickets - I would rather have won just 1 (me and my DD) and let another family go as well (although there were 100 tickets to be won). It means that I will go on the London Eye (to be booked at any time to suit us - not a group booking) with my son, my other daughter, my boyfriend and my mum.
fio I can't find anyone
I can't find a pool that is warm enough for her or anyone to teach her
and she loves swimming, can get around on her own
I was discussing a similar issue with DS1's social worker this week, whilst doing the core assessment.
There was several questions about your community and its resources and your feeling of belonging.
I said to the SW that we are very aware that there are lots of great projects in our community being faciliated by some very dedicated people (more often than not on a voluntary basis), unfortunately none of them are accessable to DS1 or other children with such complex needs.
However we accept this and understand it would be totally unfeasable (which in its self is very said) to try to offer this in every community, mostly due to financial restraints.
Our anger and frustration, is due to the fact that there are no projects or activities that DS1 can access in the whole city!
Yet there clearly is enough need to make it viable, when aiming city wide. The fact that this is not on the agenda at all, is disgusting and I am taking every opportunity I get to tell the decision makers just this.
Graciefer - let me know if you come up with ideas on how to bring this to people's attention. I'll do the same. I have a friend who feels the same as well. I think it's shocking that the city has totally ignored the needs of the most complex children.
As an aside, the NAS were looking for somewhere to run some days. I suggested they try our school. The head has told me he wants more community events in there, and I figure if something is held there then the locked doors etc might make it accessible to our kids. I have no idea if it will come to anything but I thought I'd suggest it as a possibility.
I most certainly will.
On that note, did you hear about the 2 sessions at the school over the holidays?
Being run by that charity you were referring to earlier.
I got all excited about it, seemed an ideal situation bring the provision to the school, albeit only for 2 days over the holiday.
However my excitement didn't last long as it is for 8+ years, grrrrrrrrr.
May be ok for your DS1 though, if you haven't heard about it.
I will send you an e-mail later, need to ask you a question.
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