Wheelchair (for my child) or not? Wheelchairs for kids

[bobbles]

Thanks again for all of your input....

Ted & Kit, my heart goes out to both of you, and your families, as we are fortunate really, that Millie leads a pretty active and normal life....she has occasional days when she has pain, but for most part she is pain-free unless she "overdoes it"...but we have adapted to make sure that she doesn't really get into many situations where she would be likely to do what would be too much for her.

Our problems really are centred around walking long distances - she loves to walk, but she gets to a point and it's like she's hit a brick wall and can't carry on. In day to day life it's not a huge problem - we don't go to the local park as it's a too much of a long walk to the centre where the swings & slides are, but we do go to a small playground a bit further away, as I can park closeby; we don't go out on shopping trips, or if we do, we will just target one or two shops and then head back again; and we don't really go anywhere on foot from home, because the nearest shops and facilities are about two thirds of a mile away and although it's not far for us, it's too far for Millie....but none of those things are a huge inconvenience for us, so we're fine really.

The problems only really arise when we go on outings or holidays, or if there are trips with school - and that it what the wheelchair would be for.

I think you've made a really good point there Kit about being carful that my hubby doesn't give Millie a stigma about what it's like to be disabled. I know he doesn't mean it that way - I think he just worries that we will be viewed like those people who park in the disabled spaces at supermarkets when there is absolutely nothing wrong with them. I think because he despises that kind of behaviour so much, the thought of being tarred with a similar brush hits him pretty hard.

Rosie & Lyndsey - we talked about the buggy very briefly today, and I showed hubby some pics, and he seemed resonably okay with that concept - now whether that was to humour me at the time, whether the whole thing is starting to sink in a bit more, or whether he genuinely found the idea of the buggy easier to accept than a wheelchair, I don't know!

Thanks again to everyone who's contributed!

Sharon xx

[kit]

Hi Sharon!
Thanks for your caring message. I feel a little bit guilty, wondering if I've laid it on too thick, Katie does actually have a lot of fun- sometimes in the wheelchair, sometimes out of it. (You should have seen her on Sunday propelling herself round the supermarket to collect the ingredients for Father's Day dinner; all I was allowed to do was pay for it!).
Up until last term she was still passing her ballet exams, and though she hasn't been to ballet lessons for a long time we are still paying the fees, so the assumption is that she will turn up for lessons as soon as she can.
The bad news is that a combination of growth spurt, onset of puberty and chickenpox led to a bad setback round about Christmas time. The good news is that she still has her social life intact, keeps up at school and is able to travel. Also that the whole thing has got a lot less sensitive and emotional. She has realised that her friends are more interested in her as a person than in her condition and that people on the street don't actually stare that much at a wheelchair. When the old headteacher retires at the end of the term, I think our transformation will be complete. Which makes you realise how much is actually his problem, not ours.

[bobbles]

Kit

I don't think you laid it on too thick - I think you made a really valid point.

In fact I did say to my hubby last night, "you know if you make such a big deal about Millie not having a wheelchair, and then at some point in the future she actually needs to use one on a more regular basis, how is she going to feel? She's going to be upset cos she'll think she's letting you down by needing one".....

...and I think he felt a bit guilty....he said to me "I know, I know it's for the best really - I'm just struggling to accept it"

I think that he is gradually coming to terms with things though, he's showed a bit of interest in the Maclaren Major buggy, and he feels that is less conspicuous than a wheelchair....so that could be an option for us

I'm really glad that Kate is dealing with her situation pretty well....as I think that plays a big part in how well we deal with things too.

Millie dances - she's does ballet, tap & freestyle, and her dancing school seem really supportive actually. I told one of the senior teachers about her HMS, and I put it in writing for them, and she actually seemed to take it very seriously, and said she it was very important for them to be kept informed about how she's doing - so their level of concern makes me feel okay about her going there.

As I mentioned in another post, Millie has started some quite intensive physio, half an hour in the morning and half an hour in the evening, and it seems to be working well - her physio seemed very pleased with her progress....so we'll see how things go.

It's really great that Kate's friends can see past the wheelchair, and make her see that it's her personality and company that they like, and that the chair doesn't matter - she sounds like a little star!

I hope things improve for her, and that she's able to return to her ballet at some point.

Take Care!
Sharon xx

[TED]

Well I have discoverd that the problems I am having with my back etc are hm. I had my fourth baby last October and during the prenancy i had hip/back/pelvic among other things. Nearly a year on I am still having some of these problems and I was receiving physio to put my pelvis back in position. But on the last visit to the physio she said that she cant keep doing this. That i may just have to accept that this is me now and to go and do core stability work.

Anyway I was pushing Chloe in her chair to the hairdressers, it was uphill. I was ok initially but when I came down the hill again and went into my sister in laws for lunch I felt something pop or crunch on the left side of my upper back around the shoulder blade. I have to say it was agony. And the pain lasted for a few days. Paracetamol and ibuprofen did not even touch it, i even tried a very strong pain killer and it didnt even take the pain fully away but it did help me manage it and then after a few days it eased off again. So what I want to know is has anyone else experienced this, can it be avoided and is there a best way to push the chair? This thing was starting to happen again last night on the other side of my back. This cant happen i am my childrens primary carer I need to be fit and healthy!!!!!!!

Any ideas would be welcome.

Take Care

TED

[Retro]

Hi Ted,

Sounds like you pulled a muscle. Sorry, don't have any useful suggestions as to prevention except maybe try "warming" up your muscles with some gentle stretches before pushing Chloe in her chair.

It's something I do fairly regularly (in the same place) just doing normal everyday things like reaching for a towel

Take care,

Lindsey

[janey]

I have experienced a similar problem after pushing Rosie around town, most of it being uphill. The following day I was in agony with coxyx pain, I soldiered on for a couple of weeks and finally caved in and had two sessions with an osteopath which was absolutely heavenly and she sorted me out good and proper. We have HSA cover which pays for half of the treatment and so the cost wasn't too prohibitive.
Now I have never been diagnosed with HMS but do know that I am a very bendy person and am wondering whether I have it mildly, particularly as the osteopath said that my coxyx was probably twisted/subluxed.
Would highly recommend a good osteopath, ask around for recommendations and don't be frightened to tell him/her if anything they do hurts.
Good luck and get well soon x

[TED]

Thanks for your replies.

Janey; Excuse my ignorance but what exactly is an osteopath and what exactly do they do? Could it fix the problems that i am having with my back etc.

I am feeling quite sore right now after doing chores and picking Eva up a lot today as she keeps crawling upstairs and getting into mischief.It has been a very tiring week.

anyway thanks again.

take care

TED

[Anne]

Do many of your children use wheelchairs ? If so did you get it from wheelchair services or buy your own ?
Electric or self-propelling or only pushable ?

Love Anne xxx
Mum to Grace aged 4.5 advised to get a wheelchair for long walks , tiredness after extended physical activity etc ...

[Rosie]

Hi Anne

Have you read this post, it has a link to some children's wheelchairs. Sorry, doesn't answer your question but it may give you some ideas.



Rosie

[Anne]

Thanks Rosie xxx

[kit]

We bought ours from a disabled shop; it's one of the ones you push, but will have to think again when Katie gets a bit older; she might want something more suited to going out alone.

[TED]

Hi, Yes quite a few of our kids have a wheelchair.

Chloes consultant ordered the chair through the physio dept. You have to go to a wheelchair clinic to get weight and height etc... checked so that the chair is right for your child. We had to wait quite a while so I hired one from the local mobility shop. You can hire these on a needs basis. For instance if you are just going to the shops or in our case waiting for her own chair.

TED

[TED]

Hi I meant to also say Chloes chair is one I push but has big wheels so that she can move it about herself too.

TED

[MandyJ72]

The link posted above has specific childrens chairs - that's where I got Amy's adults one but I wasn't sure whether to get her adults or childrens and I phoned and asked their advice and they were really really helpful.

Mandy
xx

[bobbles]

Millie's wheelchair was supplied by disabled services - physio wrote a referral for us (and it did take about 9 months before we actually got a chair, but now we're in the system, I expect everything will be easier from here on).

Disabled services were great - they let Millie try a buggy, a self-propelled wheelchair, and one with smaller wheels that needed to be pushed....they also explained that if we wanted to buy our own chair/buggy we would be entitled to the cash equivalent (in voucher form) of the chair they would supply us with to put towards something else.

We've opted for the self-propelled one from diabled services, which is the one they recommended too, as it means that although one of us can push it over any kind of distances, Millie can move herself about over smaller areas, like in houses, and shops etc where she might wantto reach or look at things.

The bonus with having one from Disabled Sevices is that they will take care ofthe maintenance side of things, and keep updating the chair as and when Millie grows or her needs change.

HTH
Sharon xx