I can't believe I have had to spend £26 on a bloody spoon today.

[Sidge]

We had a home visit from DD2s OT today (there's a first) and it was a good visit, but after showing us a weighted spoon for DD2 to try, and her getting on really well with it, she said that they don't have the funding to give us one so if we want one could we buy it ourselves?

No probs, sez me, if it means DD2 can feed herself without losing all her food off the spoon then sure we'll buy it.

Then I went online and discovered it cost £26!!

Chuffin nora, they've got us over a barrel here haven't they?

(And then it got worse as I discovered the toilet chair I think she would be able to use is £330...)

Do you think I could sell a kidney?

Sidge what does the spoon look like - is there anyway you can rig up a similar one. Perhaps someone has one they no longer need.

Eidsvold it's a bit complicated, I don't think it could be rigged up at home. I have ordered it anyway; as we all know, we'll do anything to make our kids' lives easier!! This is the spoon she needs - I don't mind buying her equipment really, it just pees me off that as soon as something has that 'special needs' label on it the price jumps through the roof

Welovetelegraphpoles we don't have Portage anymore, as DD2 is now at pre-school. They were fab though. Like you we spent a fortune trying out cups/bottles etc if the SALT didn't have anything suitable. And thanks for letting me know about Fledglings, have heard of them but not had a look.

tell me about the toilet seat

2shoes she is starting to use a potty (hurray!) but at 4 yrs 4 months is just too big to sit on the potty properly - she wees straight over the top! She will use the toilet but I have to lift her on and often by the time she signs that she wants a wee, we get there, trousers down, nappy off etc she has already been. I have the potty in the lounge so she can go quickly.

I thought this one would be great for her but who's got £330 going spare? Not me!

sorry I can't remember your dd's dx. but dd got a toilet seat from the ss ot. it wasn't the same as the on in the pic.
will the ot not supply?

oh this is crap. Will bloody SS not supply anything these days (similar post on here a couple of days ago).

And if someone says 'that's what dla is for' you have the right to deck them. As if dla even begins to cover the cost of having a disabled child.

try a junior caring spoon (£5) with wrist weights... you can use the wrist weights in other situations requiring similar therapy eg pencil use if dd2 is at that point.
we're just trying weights for a few things as they do tend to stop some of the extra- curricular stuff!!!

(you can get posh paediatric ones a la Lois Addy, but a few people I know use the normal Boots 'get off the sofa and get fit' ones...

at least you can buy a few more spoons and only need one set of wrist bands, rather than one spoon and you lose it next week.

OT should def be providing toileting eqt though - we've not had any drama with that...

is it the weighted bit or the fact that it is glued to her hand she needs? you can get the ones with straps and no weight for less i think... groovy spoon though!!

The OT is going to try and get us a toilet chair but says they usually supply proper commode style chairs, which she doesn't really need. For one thing she can't get up on it on her own, hence the need for a low "potty chair" type thing. But to her credit the OT said she'll do her best to find her one. She is sorting us out with a bath board, grab rail and step.

Romy7 - would wrist weights work if she has hypotonia? Her wrists are so weak, and also she can't move her wrists properly in the horizontal plane (if that makes sense) she sort of tips the spoon upside down to put it in her mouth. Hence that groovy spoon which keeps the spoon level whatever her wrists do!

Getback - I also want to deck anyone who says that about DLA! Her DLA helps us pay the mortgage and bills, it's hardly a slush fund to ease the therapists budget.

DD2 has low tone and hypermobile joints - (well, in some bits anyway!! all v unstable... and we've had a lot of problems with wrists not doing quite what they are supposed to in whatever plane - but without trying it I have no idea!!! sometimes it's worth a go... we're about to trial some weighted stuff with dd as an experiment... might not be quite so useful in straightforward hypotonia - we've got a bit of athetoid stuff creeping in and some reciprocal movements etc...

weird postcode stuff as usual with the OT - round here the first thing you get is always a potty chair, even you physically have no place to put it and WANT a toilet seat affair...

I spend my DLA three times every month 'oh, the DLA will have to pay for that....' hmmm

We get OT stuff through Disability Social Services Social worker. Worth trying.

a useful and brilliant organisation is FLEDGLINGS who are a charity that will find what you need at the best price they can.