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Ideas please

(7 Posts)
ShowerGel9 Fri 01-Dec-17 13:35:59

My son who is 3 this month can not walk or talks and we don't know why. Diagnosed Global delay. All the relevant proffessionals involved including a Neurologist for further investigations.

Why he hasaid a global delay isn't my OP.
My OP is to ask for ideas.

You see he bumshuffles. My dilema is that when he is at Nursery (4 afternoons a week) and he plays outside he's freezing on the floor outside bumshuffling around the outdoor provision. The concrete and even the soft parts of the the floor are freezing. I will list the problems:

He can only bumshuffle and can't stand for long periods of time at equipment.

If he's put on a Mat on the floor he will just bumshuffle of it

He does wear and all in one suit with thermal pants underneath but he's just getting too cold still as the ground is freezing

I feel like it's a big ask to ask that one of the three members of staff there constantly walk with him in an upright position (he can step and walk very fast if someone is holding him up)

I feel like it's a Pain in the arse for staff to constantly be taking his suite and thermal pants off and his special Pedro boots with all the laces on them. I feel like theyou have enough to with the other children without wrapping my DS up like he's going to the artic every time the play outside for half an hour.

I did suggest that maybe in he winter when someone isn't free to be walking with him that he just sits in a chair at an activity however I just got very negative vibes from this suggestion and I don't think they have done this yet.

I send my DS to nursery in a very thin jacket as he has an all in one suit that he keeps there to put over it at playtime. The jacket that I send in is very thin as the suit is thick and he wouldn't be able to move in a thick coat and the suit. However the other day I picked him up and he was outside in the biting cold with only the thin jacket on and no hat or gloves!!! The wind was freezing biting cold and his nose was streaming! He was however being held upright by an adult and he had thermal pants on.

He's now off nursery AGAIN with a temp and runny nose.

Here's the key thing.

5 weeks ago he was on an ICU unit in hospital after having 2 seizures due to temperature. he stopped breathing after the seizures and had to be sedated and ventilated.

This is why it's so important he doesn't get cold and get a temperature! ! He was in hospital again last week with a temperature which the DR'S said was a bug. I explained to nursery how important it is that he's wrapped up and not put on the feeling floor to bumshuffle outside.

I feel really worried every day sending him into nursery knowing I'm sending him to play outside in the biting cold and the nursery might not wrap him up to my standard of warmth.

I know there is no easy answer but he can't keep getting cold and then having temperatures and then me sending him back to nursery to get cold again outside! !!!

I feel like I can't bring this up to them again as I'm always saying something when I drop him off. There is always a bloody issue with us.

I am off work atm with stress so it's easy for me to keep him at home but when I'm back in work after Christmas he will have to go in ( I having started to keep him.off even when he's well because I can't bear the thought of sending him in to get cold)

ShowerGel9 Fri 01-Dec-17 13:44:01

I just feel like there is always something with us.

confusedlittleone Fri 01-Dec-17 19:14:49

Could you try a cm? The issue with nurseries is that even if they did keep him warm and do everything you asked I can guarantee he'd still be sick a lot- that's just the way it is with nurseries, and sn children tend to pick up bugs easier and worse then most

PanannyPanoo Fri 01-Dec-17 19:30:20

I would look into alternate provision too. It really doesn't sound like they are being respectful or proactive about his needs. Would he qualify for hours at a Sen school? They take children from 2. Have trained staff and specialist provision that may be far more suited to his needs. He would get a much higher staffing ratio
The case shouldn't be what is easier for staff. It should be what is most beneficial for your son. is it better for him physically to be assisted with his walking or is it better for his independence to make his own way?
There are companies that adapt clothing to help with specific needs. so they could adapt his all in one to replace seams with Velcro or a zip so he wouldn't have to have his boots taken off every time. One is based in Swindon and they have a mailing service.
I would also be sceptical about the necessity for him to go outside when it is so cold and he is so vulnerable and still recovering from his last germ. Is this all written into his care plan? Maybe you need to go through it all again with staff and make it very clear if you want him to stay there. Otherwise look for a child minder or contact your local Sen school or opportunity group.

ShowerGel9 Fri 01-Dec-17 21:17:25

Thankyou for your replies.

Do you know what the company in Swinton is called? It is definitely something i will look into

PanannyPanoo Fri 01-Dec-17 22:03:15

www.dressability.org.uk/about-us.html

They were incredibly helpful and good value for us.

Bubblysqueak Fri 01-Dec-17 22:09:55

The nursery need to apply for extra funding to enable then to give the 1.1 care needed. Unfortunately he will be in a 1.8 ratio so the staff will not be able.ro.walk around with him constantly as they will have other children they will.need to care for.

In my LA the funding would be MAP funding which would enable them to employ a 1.1 who would ensure all needs were met.

Alternatively a child minder or nanny might be better as smaller numbers of children.

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