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

[RowanMumsnet]

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 , but the specific area of wheelchair use and other equipment needs seemed to be a useful addition - we hope you'll agree.)

Timbo, no I haven't spoken to anyone about a wheelchair. He is expected to walk "at some point" but we just don't know when that point is so I keep hoping that he won't end up needing a wheelchair. I'm feeling a bit abandoned by the physio, she has only seen us once this year as my DS doesn't really like her and just screams through the whole appointment each time so she just says to practice walking at home and leaves us to it!

Thanks for your advice though, I'll definitely look at the Whizz-Kidz website and app.

Thanks Timbo, interesting as obv yr son wanted to go further from home which is exactly what my daughter wants to - choosing uni for her subject rather than convenience (ie what able bodied students do) and I am encouraging her in this. we are desperate to avoid an enforced year off so she is applying a year early so that hopefully, she can fix on the uni and then we can start the process of getting her to her chosen one (while she concentrates on her A levels!) Would be great to hear about your ups and downs during this process. Did you come across the Trailblazers whilst applying?

just read your other posts - am impressed at the early age you got your two into powered chairs! DD staggered about till she was four-ish and then went straight into a powered chair and I thought that was pretty young, but she was safe and confident with it. I agree, though, you have to fight for it somewhat .... and the problem is that every new stage feels like a new uphill battle.

It was quite a battle for my first son - but I argued that a child should be assessed for mobility equipment at about the same time that none disabled children would be starting walk and that not to was discrimination. They did tell us that we would have to wait until he was five - but we didn't give up and in the end they agreed to an assessment, but told us it wouldn't go well. I will never forget the look on the OT's face when my 15month old started to spin in circles shouting hidey boo and then drove up to her and said this is great fun - 2 months later we took delivery of his comet cruiser - he called it his Lorry :-). It changed his (and our world) instantly - when our second son came along the battle was won before it started - well that one anyway. I agree about each stage being a battle though and it can be hard not to get battle weary though - after 18 years we have just dropped our oldest back down to uni after his first weekend home - the change in his confidence and maturity, vision and ambition is worth every single battle though! I am sure there are more to come - but sharing information like this and experience can only increase our knowledge, strength and resolve - ooooh I got all ranty then - must be time for a cup of coffee and a biscuit - my guilty pleasure - I am a dunker

Not sure if this is the place to ask or if I should start a new thread. My DD is 4 and uses an Action 3 and Kaye walker. I like the action 3 as it is very slim, and it's fine for general day to day use as she isn't in it for long periods. It isn't any good for bumpy/off road trips though - I wondered does anyone have any suggestions for a good 'off road' wheelchair?

My DS uses a wheelchair which is so uncomfortable for him, to use but wheelchair services won't offer anything else

Giddypants - Is it a problem with the seating? Have you considered Whizz-Kidz - it is really easy to apply - online or with the smartphone app - It might be worth you taking a look!

I'll look into that thanks x

Hi my dd has been using a manual wheelchair for about 18 months now. It isn't expected to be permanent so she wouldn't qualify for Whizzkidz. However, she is getting a lot of back pain from sitting in it all day and I think she needs better cushions. I don't know whether to get them myself and how to get good advice if I do or if the NHS who supplied the chair will also help with more comfortable seating.

Any help gratefully received. Thanks.

is a junior wheelchair up to 14in wide can some 1 advise

what sort cushion is it

Sorry Silvercross I'm not sure if you are asking me or for yourself.

Dd is 14 she has an adult chair with a standard flat cushion and a couple of ordinary small cushions to support her bottom and lower back.

My son, 3, is a part time wheelchair user (Invacare Action Junior 3). He has severe HMS/possible EDS and is globally delayed (is a danger to himself when out).

We struggled for months without a pushchair as he is so tall for his age and simply doesn't fit in them anymore. Having a wheelchair has made our lives so much easier and it has given our son independence. He can now interact with the world safely.

For anyone in the South Wales region wondering how to go about getting a mobility aid - my son's physiotherapist put in an application to wheelchair services in Cardiff.

Forgot to add the only issue we have is trying to get him comfy in it as he still naps throughout the day. We've tried a memory foam neck pillow and a Thomas Tank pillow (his choice!) but he just doesn't look comfy. Such a shame the wheelchair doesn't recline.

Also on buses the wheelchair slides. I have to keep my feet on the front wheels. I wish there was a way to lock the front wheels as that is the problem.

Does any 1 use a NHS childs wheelchair that is a few years old ?

cushions can be problem getting for a 14inch size seat he has the normal square vinyl / foam cushion

My ds1 is 8yo and a part time wheelchair user. I've never actually heard of Whizz-Kidz, and I'll be watching this with interest.

Still can't seem to find any info on it? Does anyone have a link?

That’s a very generous organisation you have there. My son is already 18 so I believe he wouldn’t be qualified? I actually already bought him a wheelchair through this site www.parkwellmedical.co.uk/wheel-chairs.html . I haven’t received it from the mail yet. Hoping for the best.

DS 8 uses wheelchair part time. Has been in it pretty much full time for last few months but had gastroc recession surgery last week so hopeful for when the cast is off. Nhs provided wheelie

My daughter has a special needs buggy - larger than normal. She is 6 and didn't walk idependently until around 4. She is severely visually impaired, can walk but needs constant supervision and lacks stamina for more than short distances.

My dd is 14 is a (very) part time user. She has growth issues that affect her feet and cannot stand for more than 30 mins without being in pain. We hired a small wheelchair for a while for days out, shopping etc but have one through wheelchair services now.

We searched high and low for a self propelling wheelchair which had lots of supported seating options as we needed a dynamic back and a tilt in space function as well as something that doesn't look as though it's from the old soviet eastern bloc.

The only one at the time was the veldink kiddo tilt and it is stunning. We absolutely love it and it's totally lived up to our expectations.