Going Commando. Tips? — Scope | Disability forum
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Going Commando. Tips?

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IanE
IanE Community member Posts: 1 Listener
edited June 2014 in Children, parents, and families
My almost 12 year old P has a bit of everything: Severe Developmental delay,(2-3yr old stage), epilepsy, ataxia, fine motor difficulty, borderline autistic. We have no diagnosis so for 10 years we felt so alone pushing authorities for support. It has got better and about 2 years ago we got respite help and went on holiday with P with a carer and also had our first week without her with our 2 younger children.
This year we are going to France for 2 weeks with no carer!!
Anyone have any tips on how to survive? P is an escapologist, no road sense, a bit shouty and needs everything done for her.
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  • Tom2
    Tom2 Community member Posts: 1 Listener
    edited June 2014
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    Ian, I have two daughters with Retts, quite a handfull, we go to France often on hols, my daughters' don't need a wheelchair full time but we have one for when one of them gets tired, we find the wheelchair helpfull as it gives us a bit more control in say crowded places.. so a wheelchair may help. Also rather than eating out (sometimes quite difficult but not imposssible!) We have lots of picnics-France is a wonderful country with weather to boot and I bet your daughter P really enjoys picnics my two certainly do! Picnics always easier to manage and therefore more relaxing remember it's your holiday too! Finally if you or your wife wants to wander about or look into a particular shop why not the remaining parent find a quiet sitting area with your daughter and just watch the word go bye for a few mins especially relaxing with some crisps, a drink or some French bread-that's what my wife and I do it also keeps the girls happy, less stressfull (They are also on the ASD) and they like snacks! Hope these snippets are helpful. Enjoy France. Tom
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  • Alistair
    Alistair Community member Posts: 102 Listener
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    No tips, I'm sorry but that sounds hard. You may be interested to listen to an arictice broadcast yesterday on Radio 4's Womans hour. It's about women with ASD and how long it take to get a diagnosis. Go to the home page and you can listen to it. I've taken my daughter to Centre Parks twice now and they provide 1:1 support for kids with additional needs, if you ask. Don't know if you are going anywhere that might help.
    Good Luck
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  • Barbarat
    Barbarat Community member Posts: 3 Listener
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    Sounds very much like you have one just like mine. We have had a couple of holidays in France with her and apart from the odd looks, but we get them at home anyway, I would say the french are very understanding of children in general and especially disabled children. We never take carers with us, to much compromise needed, but the thing you have to bear in mind it won't be much of a break for you. We always take it in turns to do the caring, my husband doesn't care to sit in the sun but I do so he tends to care in the pm while I enjoy a sunbathe. Lots of drawing materials to take to bars so at least you can enjoy a glass of wine. Print up some postcards with the french words simply describing her condition, as I said the french are a caring nation especially where family is concerned. We had a portable DVD player which my daughter could tune into which is her way. Anyway enjoy yourselves you have the right to as good a time as anyone else
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  • EAAVF2F
    EAAVF2F Community member Posts: 3 Listener
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    Hi I don't know if you have already booked your holiday, but I know of a company in France that provides holidays for families with children on the autistic spectrum. The company is called happykidsholidays www.happykidsholidays.com they provide not only accommodation but also information for their guests & some also provide other services such as childminding & have locks on their windows. Have a look at their site even if you have already booked they may be able to help you in some way.
    Hope you have a great holiday.
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  • EAAVF2F
    EAAVF2F Community member Posts: 3 Listener
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    Hi again, just had another thought, you say your daughter also has epilepsy. I do not know if your french is very good so I thought I would let you you know that Epilepsy Action provide information leaflets in other languages. If you had difficulties regarding her epilepsy while in France one of these might be helpful. (freephone) 0808 800 5050 www.epilepsy.org.uk/
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  • Natasha Brown
    Natasha Brown Community member Posts: 108 Courageous
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    you prob going to have to accept splitting parental care one with the younger ones one with the oldest - it will be hard and if you can, speak to the vila company/gite owners/ whoever to try and organize some local daily help?
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  • Natasha Brown
    Natasha Brown Community member Posts: 108 Courageous
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    this company can provide a carer at angouleme gite - i havent ben yet but was looking into it - it is on the holidays page here

    email info@bespokefrance.co.uk

    http://www.bespokefrance.com/about pagel.htm

    they told me "As promised, here is the rate for the Respite care at the gites near Angouleme; the carer, Teresa, is offering 10 Euros (which is currently around £7.50) per hour.
    I hope you will find this reasonable.
    Please do not hesitate to contact me should you require any further information or any assistance with your next holiday booking "

    it looks really good option
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