I know I said I wouldn't post in sn anymore and I will get flamed

[Jimmychasesducks]

for not being happy with what I have, but........
DS friend has just come round. she goes to college with him and is in a WC I just feel so it has kind of hight lighted how different dd is,
I always think of dd as bing so able, then I meet someone like that and I realise she isn't in the real world, just her sn world.

[BriocheDoree]

Yeah, I know what you mean...(I assume you are a multiple no. of shoes in deep disguise...?)
I always dread DD going back to school because it suddenly stands out she's different whereas when she's at home you can kind of forget!

[Jimmychasesducks]

yes I am she, my old name was a bit personal so I have changed(and love my new one)
to add insult to injury, this girl has a hunky BF in tow, dd is in awe of her

[TheDMshouldbeRivened]

same here. I even avoid our CP group because all the other children look like olympic atheletes next to dd. mainly because they have hand function and can sit.

[Jimmychasesducks]

that is the thing, at dd's school she is one of the more able, so I forget sometimes that how disabled she is,
this girl is amazing, she is so independant and has an amazing wheelchair.
still dd is amazing as well.

[Jimmychasesducks]

TheDMshouldbeRivened your post reminded me of when dd was at conductive education, she HATED it, and cos she has athetoid CP sittting is impossible(untill she learnt to sit in a w position and the CI said it was bad!!) there were a couple of girls there who had spastic cp and so they sat really well, they were the ones who always goot all the praise

[TheDMshouldbeRivened]

yeah. dd was the crappest at the brief CE we tried and she yelled continuously

[Jimmychasesducks]

oh so did dd, she cried and I cried,

[IUsedToBePeachy]

but that emotion affects us I think Jim, even with ds1 I find I see his peers doing so much now and I just can't. Chasing him everywhere so he is in reach yet watching younger kids go off alone. Bastard SN.

LOL at W sitting- BIBIC started to have a go at us for allowing it with ds1, then turned round as a group and stared at DH- apaprently the first adult W sitter they ever met PMSL!

[TheDMshouldbeRivened]

I am a little at dd always being the most disabled. I know its not a competition but what I'd give for some speech or some hand function.
And then she could play alone and I wouldn't feel like my brain was oozing out my ears from stimulating her all the sodding time.

[Jimmychasesducks]

how do you occupy her?

[Pixel]

By W sitting do you mean on the floor with knees together, sort of the opposite of cross-legged? I always sat like that as a child and I can still do it now (even though I have a bit more trouble getting up again ). I have never in my life been able to sit with my legs crossed as my hips won't rotate out and dd has inherited it from me. At least now I know what it's called .

[TheDMshouldbeRivened]

we read books to her, sing, lie her on her back and try to get her to touch things (its the only position she can move her arms in), play catch where DH and I throw a toy back and forth and hold dd's arms so she is joining in, play with her toys in pretend play 'now horse is going to beat the crap out of cow', sit her in her chair and hold her arm to do drawings and paintings and take her for very long walks.
Its extremely draining as she cant play alone but is bored instantly if nothing is happening. Because her vision is so poor she cant watch TV and she doesn't want to listen to music/tapes without another persons involvment.
But without doing all this constantly and trying to replicate how much a non-disabled toddler would do she will not develop and learn.
It drives me to weeping some days.

[Jimmychasesducks]

wow that must be hard, dd can play alone(although now she is older she tends not to play so much) I remember when she was small and couldn't get arround by her self(she gets arround the floor in a w kind of bunny hop) it was very hard as she couldn't sit alone and then play.
does your dd have a seat to sit in on the floor?

[TheDMshouldbeRivened]

no, she has an R82 Panther which goes up and down. dd cant do anything. No rolling, no holding up of head, no hand or arm function. Nothing.
So she's fustrated, emotional and LOUD. She's trapped in the body of a newborn like a C2 quadraplegic. Veryhard for her.
I really really hopedd she would gain some hand/arm function but now she is 5 I guess there's no more hope.

[Jimmychasesducks]

never say never.
You never know what will be discovered, dd could never sit still, if you put her on the sofa, after a couple of mins(if lusky she would have slid off, now she is on these new meds, she can sit quite still(if she wants too)so don't give up hope,
what about the pc, can she go on there, I seem to remember you saying she uses head switches.

[TheDMshouldbeRivened]

she's learning but I don't have any decent switch games. I did buy some but they were amazinlgy boring and were aimed at PLD which I hadn't realised. The school have clicker games but cant give me the software.
She has no motor cortex left at all, hence the whole not moving thing. Cant see that changing although I really wish we could try stem cell therapy. But at 30K a pop its outisde any dreams.

[daisy5678]

It sounds very hard.
Can you get SS to buy the decent software for you to use at home? It would be something to ask about. Hopefully she'll get into story CDs and stuff as she gets older - there are some great stories out there.
When did she stop being able to roll? I remember seeing a video of her doing it a while back and being very impressed with the determination it took.

[TheDMshouldbeRivened]

SS do not buy you stuff like that.
She lost the roll onto her side thing (it was never a full roll) with the last ACTH course. It always takes something physical away and now there's nothing left.

[daisy5678]

SS bought J a weighted blanket - just thought it was worth asking. Or Family Fund - we don't qualify, but if you do, they might.
Or maybe the school would buy it for her to use at home to develop her learning.

[Phoenix4725]

is there any chance you can find out name of software they use at school ?what sort of switch games does she like

[TheDMshouldbeRivened]

woah. I've been after a weighted blanket for years but cant afford one. Its hard enough getting supportive seating out of them. dd's chair is too small but we've been told 'tough'.
Its called 'clicker' Pheonix.
Using FF to buy a washing machine cos mine is threatening to leave due to dd's constant wetting through nappies/trousers/soft furnishings.

[Jimmychasesducks]

I have a "game" called micro worlds 2000, dd used to love it as you can make it do the wrong thing
you can go into the house and make the charator do different thinngs, she loved making it do as many things as poss, so it was really noisy
(game can be burnt, if you get my drift)

[Jimmychasesducks]

you might find this good
it is a free trial and it is rather similar to clicker.
clicker is worth buying though as you get so many extras on the web.