I really need to let this out, and some help

[HairyMaclary]

Ok, brief background - DS1 is 3.5 and has spastic diplegia CP mostly affecting his legs but it has an impact on his hand/ arm function and he cannot sit on the floor, balance, stand or walk. He is at ms montessori nursery that is situated in a church hall. There are lots of things I have learnt since he started that in spite of me asking a million questions before hand I did not know and are causing major issues.
All the equipment has to be taken out of a small cupboard / room and returned there every day, there is not a lot of space. Ds1 needs specialist seating, special toilet supports, a standing, tilted table to paint at etc. All this has been provided by our lovely OT.

However the church are causing problems for the nursery about this equipment. He has been there since January and only last week did the church give permission for the toilet support which will have to stay in situ in one of their normal toilets as there disabled toilet is not properly adapted. Still with me?? Today the chair and table arrived in big boxes, OT came to set them up but there is no space in the room to store them and there were big cardboard boxes left over. The nursery head asked me to take the empty boxes home and dispose of them, I was a bit but know the situation with the church so agreed. I started to dismantle them when the OT asked what I was doing and got v with the nursery head, saying it was her responsibility and most definatley not mine. I agree with her and she was quite right and it was nice to have someone to support me for a change but now the nursery head is very cross with her and wants to put in an official complaint. In the end the OT took the boxes back to the hospital to dispose of herself.

I now need to go to the priest - again - and beg for the chair and table to be allowed to be left out, I need to try and soothe the ruffled feathers of the nursery teacher who I am rapidly loosing patience with as this is the latest in a long line of problems. I also now need to comfort a boy who overheard bits of this and thinks he is now not allowed his new red chair and finally I need to stop crying as I just feel like nursery find him all too much like hard work and I really object to apologising for his needs THAT ARE NOT HIS FAULT - or mine - and fighting for every little thing. AAAAARGH

[BriocheDoree]

Poor you. Poor DS. Think that's appalling.
Can't help as my DD is completely different but didn't want to leave this unanswered so sending .

[dustystar]

Sorry to hear they are being so difficult hairy {{{hugs}}}. Is there another preschool nearby you could consider instead?

[HairyMaclary]

thanks for replying! Just been on phone to DH, I think we are going to have to go to the church waving the DDA.
We have thought about changing preschools but most of them are full and he finally had a decent LSA start last week, the nursery have been collecting the 1:1 money without providing a 1:1

We really need to look at changing don't we - one more thing to add to the list, I think I'll wait till after he's had his General Anaesthetic for his botox tomorrow.

[dustystar]

How long had they been getting the money and not supplying the 1:1?

[Blu]

This sounds dreadful!

The nursery Head needs to go on a course covering the DDA and disability equality. It is HER job to approach the church and make arangements for accessible equipment - not yours.

TBH I would write a letter to the Head and the Governors / Trustees of the Nursery pointing out their responsibilities under the DDA.

It seems to me you will get nowhere while they identify you and your poor DS as the problem, instead of themselves!

So sorry - this sounds very frustrating and upsetting.

[HairyMaclary]

Had money for 1:1 since February, an unsuitable one started in September and was replaced last week by the good one ( I had to have him at home for a week in between them though)

Oh God, reading through everything I've written and your responses I can't believe I've been so stupid. I'm a teacher myself and thought I had covered all the bases when choosing a nursery, adamant that I wouldn't get caught out by unsuitable provision - and what happens...

[HairyMaclary]

You're right Blu, she keeps spinning me the line about just having bought the nursery and having trouble finding staff etc. I have some sympathy for her and I know that DS1 brings with him all sorts of hard work but stupidly I thought that she would try to help, but everything is being passed back to me.

Anyone know a decent nursery with SEN experience and space in Surrey?

[dustystar]

Sadly I don't hairy but it really does sound like you need to have a look around.{shock] @ them taking the money form feb not not providing ds with the help

[dustystar]

Ahh another mad typo day! @ them taking the money from feb and not providing the 1:1 till now

[TotalChaos]

agree with the others, nursery are behaving terribly. To be sort of fair to them, it doesn't sound like the sort of premises that are disability friendly. With you being in Surrey, I guess you are not anywhere near a surestart/children's centre? alternatively are all the school nurseries full?

[HairyMaclary]

TC we are very near a children's centre, unfortunately they are just out of borough (we are very near the border) and at the moment I don't have the fight for that one!

[TotalChaos]

I understood that Children's Centres were not meant to discriminate on postcode grounds - not sure how the borough issue might affect things though - if you've not already phoned up to check if your DS could go there then it might be worth a go.

[cktwo]

Find another nursery. You should not have to put up with this.

And I would agree with Blu, channel some anger into a letter and keep citing the DDA.

Gosh this has made me

[HairyMaclary]

I haven't checked about the children's centre but assumed that all the hep in the statement would be much harder to get in a neighboring borough. Will ring tomorrow and find out.

Am very tempted to do an angry letter but not really sure if that would help. The nursery head is really stressed and is trying, within her limitations, to do her best, he best is just not good enough though!

I need to go out now but thanks for your support.

[Romy7]

where are you? i know a few local nurseries just over the border in Hants depending where you are in surrey... and we've just left one to start yr r lol, so i know one where they've just got rid of a supportive chair, toilet frame, etc etc etc - lots of room for another set...
i'm not sure i'd bother about trying to sort this out with the existing nursery btw - the equipment is always going to be an issue in a church hall situation - i know that's totally against the fighting spirit etc but i think at the beginning of a very long education process it's important to pick your battles or you'll be exhausted before you start. the track record of this place would be enough to make me trawl the local area for another place.
if you are near me - i visited loads trying to find dd2 a place when we moved (quad cp) but it is really unusual to find a freebie place... we ended up in a day nursery.

[Romy7]

surrey/hants are usually fine about transferring statments btw. i've two kids in a hants school and one in a surrey school, but they've already told me that transferring the statement is just a matter of re-typing with the new logo lol. i do know it's not like that everywhere, but it seems fine here... and i have checked quite thoroughly

[Blu]

Hairy, my understanding was that borough boundaries are not a barrier to provision - but proxiity may be if that is in the admission criteria. And even then, having a statement mean that you should (although 'should' is a word that seems to stretch a diversity of meanings when it comes to SEN!!) be able to cut through that red tape and get you child placed wherever best meets their needs.

But...can't the nursery just go to B&Q and buy a small metal storage box / shedlet to place somewhere discreetly outside the church for your DS's red chair??

After endless hoo hah DS's school gave up with the fantastically expensive, specially-negotiated-loan-from-adjpining-children's-centre-with-arsey-attitude wheelchair accessible desk which he couldn't fit under...and the caretaker went to IKEA and bought a table top with adjustable legs - less than £50 and perfect. Has the Head, in amongst her stressed act - looked at the simplest of solutions?

But even if she has logisticalproblems, her understanding of who fits where in the obligation to provide access seems woefully unprofessional - there is no way she should have made you responsible fo the boxes!

[HairyMaclary]

Thanks Romy7, we are the other side of Surrey, North Surrey near Kingston. I will definitely ring the Children's centre place locally tomorrow and start looking at other places. I have also heard one good things about a local day nursery where we had a friend with CP so will check that out.

Bu - no the head hasn't looked at the simplest things at all, in fact she expects me to do it all. Physio and OT suggested buggy weights on the legs of the easel so it would be more stable for DS1 to lean against but apparently 'it would make the easel too heavy'!!

[Blu]

What a headache. The Head doesn't sound as if she has the comeptence to accommodate children with SN...which brings into question her entire competency to be offering a nursery service, really.

[Howlingbellyofbeelzebub]

This makes me so cross, it is totally unacceptable and even more so that it is a church making all the fuss - I wonder how the parishioners would feel if they knew a disabled child was being denied essential equipement? I think it's great that your OT is being good about it but agree with the others that you need to look at different places. My dd started at Surestart nursery a few weeks back and they have made no fuss at all about dd's diplegia. They've even supplied a 1-to-1 for dd even though they haven't got the funding through yet. You and your ds deserve better. Good luck with it all, and also the Botox, is it the first lot? I hope it helps your ds.