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Does your child use a wheelchair or other mobility aids? Introducing a new Talk topic with Whizz-Kidz

48 replies

RowanMumsnet · 30/09/2014 11:13

Hello hello

This is a brand new Talk Topic co-branded with the charity Whizz-Kidz, which is today launching a Parents Network especially for the families of young wheelchair users.

Whizz-Kidz works across lots of areas to 'transform the lives of disabled children by providing the equipment, support and life skills they need, when they need them.' It has particular expertise in wheelchair provision and providing opportunities for young disabled people to reach their potential.

Whizz-Kidz will be referring its users to this topic to chat to each other (and hopefully to get stuck in to the rest of MN as well), and we hope those of you who are established MNers will find this topic useful as well.

So please make any new members feel welcome (we know you would anyway) and, as ever, let us know if you have any thoughts or questions.

Thanks
MNHQ

(PS We know we're supposed to be rationalising the topic areas in Special Needs. That it still on our list, honest Blush, but the specific area of wheelchair use and other equipment needs seemed to be a useful addition - we hope you'll agree.)

OP posts:
starfishmummy · 30/09/2014 16:29

Pulls up chair and waits for someone else to come along...

princesspuds · 30/09/2014 16:45

Another one here with a dd who uses a wheelchair full time

whereonthestair · 30/09/2014 16:56

I have a part time wheelchair using ds, but who uses lots of other aids. I hope this topic works as wheelchairs and mobility is my issue of the moment.

Niklepic · 30/09/2014 17:59

DS uses a wheelchair for distance but has a degenerative condition and is transitioning to full time use at the moment. He's waiting for an electric chair to give him a bit more freedom but they are waiting until we have a ramp which is taking forever.

princesspuds · 30/09/2014 18:36

Another one here with a dd who uses a wheelchair full time

Dawndonnaagain · 30/09/2014 18:40

My dd is 18 now, I suspect that is too old.

hazeyjane · 30/09/2014 19:13

Ds is 4, he can walk but struggles with mobility, he uses a supportive sn buggy at present (a Tom Cross Stroller) but will probably move to a wheelchair when he gets older.

Danandmaxmum · 30/09/2014 20:10

My son aged 10 uses crutches or a K frame or a wheelchair for longer distances or events where there are a lot of waiting around. He has grown up thinking about the terrain - ie gravel and grass is hard for him to walk with his frame.

elliejjtiny · 30/09/2014 20:46

I have DS2 aged 6 who is a part time wheelchair user and DS4 aged 15 months who has had is assessment with wheelchair services and is currently waiting for an SN buggy. He also has supportive seating at home.

gluenotsoup · 30/09/2014 21:56

Me too, dd uses an ormessa bug crash tested buggy, and has had piedro boots, now splints. Walks using a frame, currently a number k walker.

Babiecakes11 · 30/09/2014 23:04

This reply has been deleted

Message withdrawn at poster's request.

Costaaddict1 · 01/10/2014 06:30

My dd uses a an buggy full time, she cannot walk unaided, she has an epileptic condition, next time it will be a wheel chair. :(

PheasantPlucker · 01/10/2014 08:49

My 13 year old daughter uses a wheelchair - a bog standard NHS Blade that is not self propelled.

Timbo1964 · 01/10/2014 10:15

Hi All - I am new to MN and am actually a Dad :-) I have 2 sons who are both powered wheelchair users - one 13 and one 18 - my eldest has just left home to go to university - wow what a journey that has been - but he is there and starting a whole new aspect of his life journey. Something we never thought would/could happen. Anyway Hi to you all - it is great to have somewhere to chat and share experiences. If I can offer any ideas or support let me know and I hope that vice versa is ok too :-)

2old2beamum · 01/10/2014 10:20

DS 16 has a SOS wheelchair funded by us (NHS useless)
DD 9 has a Eazy Rider buggy funded by NHS not very comfortable but she can "bum shuffle!" so she is not stuck in it all day.

HairyMaclary · 01/10/2014 15:07

Part time wheelchair user here (DS - not me!). Currently less part time but will fluctuate as he grows. Aiming to not be reliant on it as an adult but suspect he will always need one. He has cerebral palsy.

Standard NHS action3 - self propelling apparently - but they're not really.

kent2808 · 01/10/2014 15:19

Son has Action 2 which finds hard to self propel. Got emotion wheels that makes life easier. Funded by fundraising by his school. New to this as was mobile a year ago so steep learning curve,

Kaffiene · 01/10/2014 17:51

Dd is a part time wheelchair user. Mainly uses a Kaye Walker or sticks. She has just grown out of her Whizz Kidz funded Quickie Simba. NHS have offered a Bravo Racer this time, looks OK! I thought we would be offered the Action 3 again.

oneearedrabbit · 01/10/2014 20:15

DD is a full time electric wheelchair user; now 16; Timbo, which uni is yr son going to? I'd love to know! DD looking to apply now, a year early, as I think it is going to be a massive effort to sort out accomm, care, etc etc .... DD been a wheelchair user for 12 years so am happy to offer any advice from our experience ...

RevJoKing · 02/10/2014 08:02

My daughter (11) is full time maul chair user and has been very involved with Whizz Kidz, who do a lot more than just wheel chairs.

Timbo1964 · 02/10/2014 10:41

Hi oneearedrabbit - My son is at Southampton Uni - he has been a full time powered Wheelchair user since he was 2! It is quite a process and an early start is a good idea. maybe it would be useful for us to start a thread about getting it ? We have had an amazing journey to get to this - with lots of battles and also some fantastic support. Getting the transition from children to adult services is really important.
I will start a thread with some info in if you like - just telling our story - not necessarily the only way, the best way - just our way!

oneearedrabbit · 02/10/2014 19:12

Interesting Timbo, Southampton is on Dd's list I think ... Yes, start a thread - could it go in higher education? not a very quick moving board so other people could catch it; or in special needs? Could you ask mumsnet hq advice? I would really welcome an opp to hear how you did it all. Especially, was Southampton in your own area or did he go out of yr area?

Timbo1964 · 03/10/2014 11:48

I will start a thread soon - Just wanted to let you know that Southampton have undertaken major adaptation works to accommodate my son - including 3 full equipped toilets with hoists and changing platforms, proximity sensor operated doors on all major access points. They raised the height of the table in his hall canteen and even made sure that the halls rep help introduction activities downstairs. No Soton isn't in our area it is about a 2 hr drive from here - care funding is the responsibility of your home authority! I will put something together and start a new thread soon

TIL3 · 03/10/2014 13:55

My son is 3 this month and can't walk independently. He uses a k-walker (reluctantly) or crawls. He's still in a pushchair at the moment but I'm not sure what will happen when he outgrows that.

Timbo1964 · 03/10/2014 14:36

TIL3 - have you spoken to your local wheelchair services about an assessment for a wheelchair? Some services are reticent about littluns but they should make a decision based on an assessment not opinion. Not all kids are the same and some children can use wheelchairs from a very early age. My youngest had his nhs powered wheelchair when he was 13month - but they were used to us having got my elder son his first power chair at 17 months. If they are not happy to consider - you could also put in an application to Whizz-Kidz - it is really easy - they even have a smartphone app that you can download and use to apply. It also tells you all about the other great things that are available through Whizz-Kidz as your child grows :-)