Wow! Wonderful story - severely disabled girl 'talks' for the first time using laser eye movement tracker

[mabanana]

beautiful little girl

dd uses hand switches for her powered chair. and there are young people who drive powered chairs that have poor eye sight.
at dd's school they have a track system for learner drivers. dd also has a scad fitted so that she doesn't bump into things.

whats a scad?

I am not sure whta it stand for but It goes on the powered chair. and can be set to different setting, it stops them running into things as they are learning to drive

needmorecoffee, you are a very passionate advocate for your daughter. Have you considered writing to the manufacturers (find out who is the best person to talk to and write to them personally) to tell them about your dd in your inimitable passionate, loving way, describe her condition, enclose a photo, ask their opinion on what would be most suitable, ask how she should be assessed and ask if she can trial them. Keep writing! Also write to various people who provid private funding - write to the Beckhams, write to Richard Branson...anyone else got suggestions?

I have mabanna but I am exhausted and dispirited. This week I have spent 12 hours on the phone on dd's behalf. Filled in 4 charity application forms, dealt with her (still wrong) statement, phoned SS about the adaptations that we've been waiting 3 years for. Met with a woman to look at 2 communication aids and spent hours hunting for the CTC forms and dh's old pay slips which are required by the charities.

I can't do it anymore, and care for dd plus my other kids. I haven't had time to get my wheelchair serviced or go to the doctor about the amount of pain I'm in or even eat a decent meal. I know you mean well by 'write and write and write' but its another problem, another 'thing' I have to do.
And I think thats the main problem. These battles are constant. Why the fuck can't services offer what you need and why do they have to make it so hard?

am currently filling in 2 hospice application forms as dd qualifies for hospice care as she probably wont live. Thats not only a blow but a bloody awful thing to have to apply for. Plus checking each has a railway station close by cos its no good if we can't get there.

25 hours?! 25 hour measly little hours?! I am absolutely furious on your and your dd's behalf NMC

well, I had orginally thought it was great. Last year dd got 3 hours of SALT and up to september this year 1 hour.

NMC - I'd need more gin not coffee if I was in your shoes.

I find it difficult enough with the miniscule (by comparison) complexities of my life. Puts it all into perspective.

Was thinking, whilst sitting on loo the other day (and marshalling an argument between the dcs and listing the 'to-do' list in my head), that I could do with a 'wife'.

I know dh would be delighted to have another dw - who actually managed to get things done.

Wouldn't it be great to have someone else to delegate things too? How about a PA for you, NMC?

re:the schooling for the boys - surely they'ld waltz into anywhere with state grammars or schools like MGS with oodles of bursaries?

Otherwise - I hope that the various letters/applications etc you are slaving away at get you somewhere.

NMC just on the wheelchair front....have you been in touch with Dragonmobility?
They are based in Cambridge and custom make wheelchairs to suit each individual child, they are quite expensive but are mostly funded through the cauldwell trust

As you know ds cant do switches etc and theres no way he could every use a conventional joysticked powerchair.

We first met them at a mobility show a while back and after trying out their "normal" control systems without much success, Dan and his wife Lou came up to our home and spent several hours with ds to get a feel for what he can and cant do and came up with a few ideas they are going to try out re controls and moulded seating etc, Dan is an engineer and a bit of an inventor i think. It could still take a while but theres more chance of them coming up with something he can use than wheelchair services i reckon!

Oooo, let me know how it goes glittery. What arm function, if any, does your ds have? dd can use a headswitch reasonably well (although you wouldn't want her in charge of something important!)
We are sending off for the Whizzkids form too. I know their wait list is a couple of years but I figure 6 is a good time for a powerchair. Plus a friend told me about the Whizzybug powerchair for smaller kids so will look them up tomorrow. Her dd has function in one arm though so it might be why she can use it.
Trying to get SS to pay for a hoist and track on our living room ceiling (MIL said 'oh, but its so ugly, I wouldn't want one' Like we like them or something) cos the mobile hoist is huge and where do I put it plus I can't get it through the living room door. DD is reaching the age where she will need to be hoisted out of her wheelchair onto the floor and vice versa. Althouygh I reckon 2 Chippendales satnding by at all times would look better in my living room than a hoist

NMC
ceilinglift.ca/sequoia.php

If SS don't want to fund a permanent ceiling hoist, what about something like this. Our SS suggested this to us when I didn't want a ceiling track installed.

ceilinglift.ca/sequoia.php

we have a ceiling hoist in the lounge.
be careful when you have one done.
remeber your dd will grow,
the first one we had was one where the hoist bit could be removed when not in use, it was so low and big that it hit her in the face when in use,.
HA/SS paid for ours.

NMC ds has pretty much no fine motor skills but can lift his arms (eventually) to let you put the tray on his chair or to "wave" or "high 5"

They are looking at designing a control system that will be easier to use than the conventional joystick as theres no way he could ever use one of them, maybe something bar related as he can grip a bar after a fashion but would probably need those glovey hand grips to help him, like they use on trikes?

Talking about trikes we are going to be getting one of those Tomcat Tiger trikes, Bobs going to adapt it so that i can use ds own headrest with the band round it to support his head, likewise with the powerchair, just much easier using something i know work rather than making do with what they come up with!

www.tomcatspecialneeds.co.uk/products-tomcat-tiger.htm

www.dragonmobility.com/

NMC 2 of the kids on the MSN site have Whizzybugs and the one who lives quite near you was invovled in the first trials of it, although thats probably who you're talking about eh?

NMC Have you seen the Otto Bock Skippi powerchair?
If your dd could manage a joystick its worth a look, it has a tilt in space and comes apart to fit in a small car if need be and starts at £3,600 which seems quite cheap for a powerchair?

dd can't manage a joystick. Any chair will need a head control. So I can see forward and backward but how to steer?

i don't know how to describe it..but they have kind of little screen thing that they navigate on.
I haven't seen one yet, but this is what Ot told me.

I wants pictures when you see it

i will go and email the ot to see if she can send me some info. of course she is not at work right now, but will see it tommorow

email sent

coo. you have her email address.

NMC, I know it must be so hard for you. I cannot imagine how you do it all. I found teh DLA form and statementing stuff so depressing and awful and even getting a pead appointment for allergies and things is a nightmare - my heart goes out to you re the hospice thing. THat puts everything in the shade.