took my second child to school in a wheelchair this morning

[cory]

thankfully big sister was off sick so the wheelchair was at home

otherwise I suppose I would have been where I was with her 4 years ago, staggering up the road with a tall heavy child on my back

this is about the age it started for her

and he knows that

how do you push two wheelchairs at the same time?

(I can't drive)

at least I now know I made the right decision when I asked the GP to refer him last week

but I don't feel up to going through all that again

Will someone uncork that bottle???

I know it's not massive, it's just the thought of the logistics. And they'll want him to give up playing football. And I had set my heart on having one healthy child.

Another slug and I'll be fine. Really. Have to meet him in half an hour, complete with wheelchair and cheerful grin.

bump

Could you not get another parent (that walks to school) to give you a hand or a kind neighbour?

I know what you mean about 'going through the same again' both dd's have AS/ASD so we are going through getting dd2 a dx.

Bless you, that must be so hard!

Could you perhaps get a double Maclaren Major? They are suitable up to 50kg each child as far as I know.

Sory if not much help

Cory, heck. Not much useful advice but wanted to just add a message of support anyway.

sorry to hear this cory ,do you think it is a definite or just a possibility atm?

thanks for your sympathy, folks, much appreciated

they are 8 and 12 so don't think a MacLaren will do much good (dd is the same height as me and will soon be taller)

even the 8yo is tall (though thin) so too much to ask from a neighbour

dd has school transport, though, so I suppose I shouldn't worry too much about that part, it's more the rest of our lives- and where do I store two wheelchairs in a small semi?

dh can drive though and does sometimes hire a car, so not everything is grim

it's not going to be every day, I know (hope), even dd is better than she was, and maybe ds will never get that bad (the thought of telling him he has to give up football- contact sports not recommended with his condition )

(anyone bringing that virtual bottle?)

I'm sure we'll be fine, just feeling a bit overwhelmed atm

but they can't suspect us of sexual abuse again, can they? things have got to be easier the second time round

the bit I'm dreading is having to tell my family and then listen to their wondering exclamations of why it is always my family and how it hasn't happened to any of my siblings (probably something to do with the unhealthy air of the UK grrr)

MP, the condition is a definite; but how he is going to be affected is a complete unknown. Even dd who has suffered from the condition for 5 years is never the same from one day to another. He may be all right. But he wasn't able to walk to school this morning because of the pain.

And he can't write much. Last year I found out why his table manners are so awful. It turned out he'd never thought to mention the reason: he thought everybody hurt when they had to use a knife and fork and that it was just something you were expected not to talk about

His foot and ankles have been getting worse for a long time. but today was the first he couldn't actually get there. He was very embarrassed about the chair and made me stop so he could get out just before the school.

so sorry
this time you can tell the school etc the problem,and expect their support.
I think the reason they suspected you was becos there was no cause found/diagnosis made initially for your dd,whereas now you and they know what is wrong [and make sure they do know].

Cory {{{{{hugs}}}}}}.
Brio
x

cory, ive been letting the red 'breathe, and the white is still chilling in the cooler - which one shall i open {first}

Also, got a spare bar of choccy, so virtually opening and passing that too.

Im sorry i dont have words of support, but i am thinking of you, and hoping that IT WILL be easier the second time around. XX

Ah thank you

that's better

Best wishes to you x

Regarding the football - and I know it's not great, but some clubs do wheelchair football. There's no contact at all and the kids love it. Look at www.thewfa.org.uk

thanks everybody

I think perhaps I was over-reacting a little

I don't really think I'll need respite

dd is very independent these days so I am sure he will be, too

in fact, he has been making his own way home from school; today was the first time I didn't dare to let him do that

perhaps if his foot gets better and he is able to walk, a mobile would be the answer, so I can come and pick him up if he collapses on the way

but first I need that appointment to come through; then we can take it from there

Cory, sorry, don't know much about the condition you refer to, but if DD is having a better day, could she not self propel a wheelchair? Or would that aggrivate things more? Sorry not much help but sending virtual choccies.

thank you, Lollipop, and very nice they were too

the condition is joint hypermobility syndrome: basically causes joint dislocation and general joint pain, but is extremely variable- you can be fine one minute and unable to move the next

it probably isn't mainly about having to manoeuvre two wheelchairs- it's more the psychological thing iyswim

both children are actually old enough and mature enough to cope alone at home if I have to go somewhere in the afternoon before dh is home (even if they can't walk far, they could get out of a burning house)

dd couldn't self-propel because of wrist pains, but she has her own school transport, so that is sorted

I do however need to bite the bullet and decide whether to buy a second wheelchair- dd's chair goes to school with her at 8.30, so is not available to take ds to school at 8.45

we could afford it, but storage is going to be a big problem

and ds is upset

he doesn't want his friends to know, which I think is going to be a bit of a lost cause really

apply to family fund for driving lessons. it won't solve the immediate issues but at least you will be moving towards something...

have orthotics come up with anything likely to improve joint stability without reducing mobility? so tricky would wrist orthotics help in school? keyboards? sorry - probably already in place...

would anyone fund a powerchair for dd? not sure how old she is, or how often she needs the chair - if it's more or less full time then it's worth a charity punt? wcs are notoriously difficult for pt users - at 12 would you consider dd old enough for a mobility scooter? we're planning that longer term as dd2 can't self propel either but won't be funded for a powerchair...

poor ds

most folk who need to push two do end up with at least one powerchair along the way ime lol...

this is hard for you and your ds
is there a support group for you [did you say this is the same as marfans syndrome?]
you need lots of information from the specialist about activities he can do and likely outcomes and monitoring of his well being and condition.

madwoman, I could afford the lessons, but unfortunately my eyesight is not good enough and I am a very poor judge of distance, so my GP agrees that this is not a good idea

(this is why dd has her transport provided by the council despite being in a mainstream school not very far from here)

ds has insoles, but I have just asked his GP for referral to a rheumatologist: I hope they will then get us an OT, to come into the school and work with the SENCO. the OT who did that for dd was brilliant and she is now doing well at school. so that's what we're hoping for.

dd mainly needs the chair to be there for back-up: she goes to school in the taxi and usually the chair sits in the office, while she gets herself around on foot

probably we could manage with owning two manual wheelchairs. it just seems a big step psychologically iyswim

National Marfan Foundation

This is such a tough situation for you and your DS, Cory. No advice here (no relevant experience really), but lots of good wishes.

sorry,www.marfan.org/

I presumed this was diagnosed by a rheumatologist,do you not see one regularly with your dd?

it's not as bad as marfan's, morningsun; there's no cardiovascular problems involved (at least dd has been tested and cleared for that, so I assume ds won't have them either)

it's just the joints and possibly some skin problems- with dd it has affected her bladder and bowels, but I've never noticed that with ds

there is a support forum and I am a member

I have read up lots on the condition over the last few years and it's not dangerous, it's more that it's very unpredictable and that he has seen his big sister suffer emotionally (long story involving misdiagnosis and mistreatment), so he is naturally nervous

but I am sure he will be fine

we just need to make a few decisions within the next few weeks:

do we buy a wheelchair or how do we handle it if he can't walk to school in the morning?

(I get very stressed about not being on time)

or should I just take a mobile for the time being and ring the school to let them know he is hobbling along/will be along later?

what do we say about his football? (strictly speaking he's not supposed to, but he does enjoy it so, and nothing really bad has happened yet); he seems better in the afternoon atm, so he could well be in a situation where he cannot walk at 9 am but can kick a ball at 3.30- it's part of the variability of the condition (and makes it very hard for other people to accept)