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What do you do? Out and about with son in wheelchair

32 replies

zebrafinch · 30/11/2013 12:34

DS is too heavy to lift now, cannot weight bear and is doubly incontinent.
His horizons are shrinking.
I have just realised he cannot lay on the sand on the nearby beach in the summer, we will pay for a festival all day ticket but he cannot manage even three hours sitting and cannot get out of the wheelchair and lie on the grass and listen to the music, when out we have to return home if he soils himself. I am a lone parent and I can only take him out if another Carer is present and I can't ask them to help lift him. There are no changing places close by. I want to take him camping or a trip to London it's pie in the sky isn't it??
What do you do?

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Trigglesx · 30/11/2013 16:06

It's fairly limited where I can take DS1 simply due to either his wheelchair, safety concerns, or sensory problems.

What do I do? I honestly don't know. It's frustrating.

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southeastastra · 30/11/2013 16:08

this is a naive question probably but are there not hoists in public disabled toilets?

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zebrafinch · 30/11/2013 17:04

southeast there are a very very limited number of specialist disabled toilets with a hoist in them . I think my county has four or five? we have gone past the point of being able to lift DS out of his chair and change him on the floor of the typical disabled toilets

I am just dreaming that maybe there is a magic wand solution out there or there is something that other parents have found useful.

Its not too much to ask is it? To be able to stretch out and relax on the warm sand on a sunny day listening to the waves and the sounds on the beach?

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zebrafinch · 30/11/2013 17:17

Actually southeast your post made me check. There are ten changing places specialist toilets in my county AND ONE IS NEAR A BEACH!!!
Now I just have to find a way to get DS out of his chair and onto the sand. I know some places have special beach buggies for disabled people, has anyone seen a mobile hoist out and about? What do people use who go camping?

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zebrafinch · 30/11/2013 17:31

Trigglesx I agree it is very frustrating , just getting outside the front door is a tiring logistical exercise in planning and organisation. I want my DS to experience more than these four walls, our garden and his school but his world has very very definitely shrunk.

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raffle · 30/11/2013 20:41

Try the Mencap office near the beach that you want to use. Our local Mencap have a beach hut, and it has a hoist in it and a special wheelchair designed to be used on the beach. It also has a changing bed, and a gas ring so you can make a quick cuppa while you are there!

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zebrafinch · 30/11/2013 20:53

That beach hut sounds a really good idea!

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lisad123everybodydancenow · 30/11/2013 22:02

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JsOtherHalf · 30/11/2013 22:35

Some charities offer adapted accomodation? Eg www.cerebra.org.uk/English/gethelp/holidayhome/Pages/default.aspx

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MariaNoMoreLurking · 01/12/2013 01:27

Would this sort of thing help for changes?

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zebrafinch · 01/12/2013 05:16

Have looked now at the camp bestival site, it looks fun. Also interested to read about tents with high sides such as yurts squrts and cloud houses. the medical support at the festival looks good as is the specialised camping space for SN . I might try a day camping close by home to see first if it is feasible but son would find sleeping outside in a tent at night fun. Now I just need to pitch up close to some MNetters who have burly strong partners to help lift DS in and out of chair but reluctant to ask this. he is not exceptionally heavy, the size of a normal eight year old perhaps but I can't ask someone else to lift him , can I ??

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zebrafinch · 01/12/2013 05:30

The cerebra holiday home looks great, interesting to see they can supply a nurse . DS is over 16 so not eligible . Hope others read your link JS and can go there.
Maria we do have something similar a large pop up beach shelter so when younger DS could have some shade and we could tube feed him in privacy.
I can't believe it's the start of winter and I am already researching how to get DS outside in the summer and experiencing life more!

It's just really hard now that I cannot lift him by myself. He can't stay in the wheelchair for long periods, he needs to be lying down and stretched out.

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zebrafinch · 01/12/2013 06:43

Just googled and hope this link works www.bournemouth.gov.uk/beach hut/

it looks great! Very nice design!!!
Would love to have something like this within driving distance. My county is a tourist destination with beautiful beaches maybe I should get together with others and try to get one here

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zebrafinch · 01/12/2013 06:48

Anyone know if there is such a thing as an all terrain mobile hoist???

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JsOtherHalf · 01/12/2013 15:18

Charity grants for disabled children:
www.special-needs-kids.co.uk/financial.htm

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lisad123everybodydancenow · 01/12/2013 16:21

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zebrafinch · 01/12/2013 16:36

lisad Envy

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zebrafinch · 01/12/2013 16:47

www.achievableconcepts.com.au/

I found on here an all terrain buggy for children AND adults , if there was something like this which allows a sleeping reclining position I would be very happy , it could be used when a child is unseatable.

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zebrafinch · 01/12/2013 16:51

It's the all terrain stroller, could be useful for others who have older children , young adults who want to go on more challenging walks?

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zebrafinch · 01/12/2013 16:54

Has anyone stayed at youth hostels with facilities for wheelchair users???

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lisad123everybodydancenow · 01/12/2013 16:56

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zebrafinch · 01/12/2013 17:37

Thanks lisad will look at that
Also found
www.specialneedspushchairs.co.uk/ which has more variety than the Australian website above

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zebrafinch · 01/12/2013 18:54

Summerleaze beach in Bude Cornwall has a Changing places facility and new disabled access beach huts which must be booked ahead and dogs on leads are allowed in the summer but check dog info in case it changes next summer. .

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zebrafinch · 01/12/2013 19:27

Js thanks for your second link above on grants for children with special needs. There is a lot good information on that website.
I think I have been too long out of the loop. I did a lot of Internet searching years ago but the last few years I have been so wrapped up in just existing and getting by that I have not kept up to date with what is out there to make our lives easier.

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Pixel · 01/12/2013 20:56

Hi, haven't had time to read all the thread yet so apologies if already mentioned but have you seen changing places?
There are a couple in Brighton if you fancy a day at the seaside Smile.

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