To not want non disabled children using our hard fought for sensory room ?

[ApocalypseCheeseToastie]

I'm probably going to get murdered for this but meh.

We live in a town with 3 softplay areas and various activites for nt children to do, for special needs children there is sod all, no softplay sessions, no sensory room. Nada.

A few years back me and some others started to go to meetings with our local council to arrange activities and eventually, after much fundraising a softplay area was built in our leisure centre and sensory room was built in our softplay area, it was entirely funded using money allocated for children with disabilities although the softplay is open to all and we get 8 hours per week when it is soley for use for disabled children up to the age of 15. HOWEVER, only disabled children are allowed access to the sensory room, the sensory room is also used by disabled adults and is the only one for 100 miles, it's a valued facility.

Parents have been complaining and demanded access to the sensory room and a meeting is being arranged to review the situation.

Bearing in mind the children/parents who use the softplay aren't always entirely respectful (taking food etc in) and the sure start centre does have a small sensory room for babies/toddlers, aibu to think, sod off, we only get 8 hours a week as it is, I don't want this expensive, specialist equipment being trashed by kids who don't need to be there and have 1001 other things to choose from ??!!

OP - Do you know if you or any of your co-fundraisers can attend the meeting? I think you might have to just show up. Am v angry they have not invited you and you had to fight to self-fund and now you have to fight not to have it taken away.

I still say go with a list of demands 'in exchange' for their requested access (although kudos for everything you and the parents have already organised) - it makes a mockery of their request with only the use of facts highlighting how MUCH they have got access to and how LITTLE you have and yet they still feel deprived! Sorry but this has got me really ! You shouldn't even be having to fight this battle. Pffffffft.

SN EQUIPMENT IS HUGELY EXPENSIVE AND MY GUESS IS IF ITS DAMAGED BY NON-DIS KIDS YOU'D HAVE A HARD TIME REPLACING YADNBU I KNOW EXACTLY WHERE YOU'RE COMING FROM...STICK TO YOUR GUNS X

Really good point from BelleDJure - could the funders turn up at the meeting and point out that the money was intended to be used for very specific purposes?

pixel and missque I did not mean in any way to devalue what you experience whilst seeking activities for your children.

I do understand that your experiences of accessing activities is not as staritforward as someone with out a disability or special needs and I do know from a lot of experience what values there are in sensroy rooms. I have worked in a centre and designed and led sessions in a sensory room for many years.

I as a parent of some one who does not have special needs also does not visit soft play centres for some of the reasons you chose not to either. it is just not something conjusive to my dd. I understand that your battle to access services is very hard and can be limited.

But from experience I just dont like segrigation one little bit. It is wrong that your swimmig pool does not have a hoist and should not be the case. I also stated that I dont think op is BUR, however If this is managed appropriatly then it should work.

The ones from local epilepsy support group and nas always go, and i'll be there with my bosom well and truly hoisted !!

yanbu - you are totally right on this.

And yes, we have been to space in Preston, We LOVE space centre!! Sadly ours is not as good (or big) as that as I said, the whole thing including seating area is in an old badminton plus ours isn't NHS funded, it's 'us lot' funded !

tomhardyismydh, I don't like segregation either, I hate that children like mine are discriminated against, but the sad fact is, they are, and exclusive sessions at a soft play or sensory room or something like that is a lifeline for families like mine. It's about having a place where they can go and not be judged, they can be understood and accepted, and we as parents don't have to constantly apologise and cope with other parents and children who don't understand and judge without thinking. It's also about providing for children who can't cope with busy places, lots of noise and lots of people. My dd would find it very upsetting to be in a place like that, she would find it very difficult and it would more than likely trigger behavioural difficulties due to her sensory problems. So I have no option but to choose somewhere that's quieter, and inevitably, not open to the general public...

YANBU

TBH I'd probably have ...'and their sibling's in the criteria as I am heartily fed up of different things fir each child I have ATM (from September i'll have 4 schools fgs!) but no, I think it's fair.

Do think the funding needs to be explained

Ah shite typing sorry- toddler asleep on right arm, can;t be placed in his cot of an evening until asd siblings asleep

I dont want to offend on this thread but if there is a managable number alocated in this room then IMHO there is no reason why it cant be shared by disabled and non disabled people, with adaequate suppervision, granted funded and respected equally by all groups.

I do agree how this has come up is very wrong and meetings being called behind the groups back is not on one bit.

Siblings are allowed to come to our sessions to be practical although tbh it's rare that any do, siblings can attend all activities within reason (ie if any are leftover they can participate)

Tomhardy, we have been given ONE small facility with limited access and funded by ourselves, if others want to use it I suggest they kick up a stink and raise some funding like we did to improve the one they have !

How could it possibly be "respected equally by all groups" ... it simply isn't & won't be.

NT children have access to far greater number of activities, their parents have nothing invested in the facility - when it inevitably gets trashed they'll just shrug & go off & try something else. They simply have no idea how important these places are & it's incredibly naive to think that it won't be the disabled children who lose out if it's opened up to all.

thats what im saying ap it needs to be equally funded.

the reason I feel like this is, I am at the moment seeing first hand the damage of segregation, i have worked in a centre for 15 years with adults with disabilities that is being closed, these adults are being turrfed out into the community so to speak to access intergrated services, these intergrated services do not exsist and they should. Facilities are limited and as children with disabilities grow older segragated services will not exsist and so our society need to be equipt for this change in trend.

when my dd accesses a services I want her to experience first hand and mix with and socialise with everybody in our society. Obviously not at the cost of your hard work and fundraising but as a memeber of a wider society, of course you should attend this meeting and take your children and discuss your hard work and funding and get others on board with you. If they choose not to then they need to stop shouing. But that should not stop your children have a place where ever they and you might wish to go.

there are many places disabled children can mix with nts, we have a youth group for sn kids which is also open for nt kids, so they mix, same with guides, scouts etc. All accessible for those who can use them, sadly some children are not able to access these places, my son is one of them, he is a danger to himself and others, for parents like me the sensory/softplay sessions are the only place our children can have freedom to play without constantly having to make sure others are safe.

We don't WANT mixed sessions, or need them.

some people do though and there should be scope for both.

YANBU. The extra users are going to cause wear-and-tear to the facilities. If they want access perhaps they'd like to reimburse some of the costs or contribute towards some other facilities for the disabled.

Not unreasable at all.

Good luck with the meeting x

the ones who use it are the most severely disabled, a small group. My son has severe autism, to look at he's fine, yet he has problems going on in his head even I don't understand, if we had a mixed group I don't think my son biting a childs face because he wants to know what it feels like would go down too well would it ??

His sister also has autism, she dosen't go to softplay, she dosen't need to, she's much more able and can attend a youth club (without me)

The sensory room is for those who aren't catered for, the ones who can't attend youth clubs, who haven't progressed past looking at the twinkly lights, we don't want mixed groups just because some silly arse parents are scared of missing out !

I do belive there should be scope for both.

there is no reason (funding at the moment) why a facility such as the one you have set p, in the long run should not be able to accomodate a variety of needs.

a mixed group, a nt group and a sn group or an idividual person whether they have sn or not.

it is about funding and I think that is what clouds this obviously, If the council are willing to fund this then I think It would be wrong of you to resist. If however they dont then I too would be helbent on saving it.

I do wish you luck with this and hope the best out come is achived.

I can see why you're so upset - I'm fortunate in that, to our knowledge, DD is NT so I can only imagine by reading your storyies how hard life can be with a SN child.

I do wonder whether lack of information is part of the problem - not just of how the facility was funded but WHY it was created in the first place. Do the parents (and the management) understand WHY you were so dedicated to raising the money. WHY its so important to you and your children? WHY you're so defensive of it? Just how much of an impact the loss of the facility through careless use would have?
I ask because, until I read this thread, I had no idea - and if I was a parent and saw this fantastic facility that I was told I couldn't use I might well be a bit pee'd off until I understood just how much of a difference it makes to the children who NEED it (rather than how it might be a nice place to spend an hour on a rainy afternoon).

If you went to the soft play every day this week with a camera, how much evidence would you get of the lack of care with which that facility is treated? I'm thinking that photos would add reality to your stories of the mess you've had to clear up. As you've said, if they can't look after the soft play (which is much more robust), why should you expect them to look after the SR so that its available for those who really need it?

Another thought, though, is that it may be worth considering what mitigation you can put in place if opening the doors to NT kids is forced upon you. How much could you charge for NT kids? Could you insist on a deposit? I know that you don't want them there at all - but is there benefit in coming up with ways to make things less painful or risky if that eventuality happens? Or demonstrating that you can't mitigate in this instance? (For instance, if the equipment got broken, which would be the bigger issue - the cost to get it repaired/replaced or the lead time on a replacement/parts/engineer? How long would it take to get different items repaired? Would the rest of the room be useable whilst an item was broken?).

Sorry - that's turned into a bit of a brain dump, and its probably all things you've been through before . I really hope things work out for you, and the meeting goes OK on Friday :)

the less wear and tear the better, nt children will survive without being able to use this facility and after the initial 5 minute rampage won't gain much from it!

tomhardy - I can see what you're saying and, in an ideal world, I think you're right. But I can also see why Apocalypse is so wary of letting others in. Its easy to say that if the council want to fund in then that would all be fine - but how much confidence do you have in the council to expedite the funds to sort out any problems? If things do get broken, how much of a delay is the bureaucracy of local government going to introduce into the process of getting things repaired? In an ideal world, none...

It's the most severe children who use the facility, the more able ones aren't interested, so maybe 20 on a regular basis and a few residential facilities hire it out on a regular basis.

Nas, epilepsy group etc also have a session there from time to time.

In fact one of the girls on our commitee has severe cerebal palsy, shes fully reliant on carers yet she has an active miind, she's highly intelligent, she has no interest in this kind of facility and would much rather be supported playing on the wii!