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Here are some suggested organisations that offer expert advice on special needs.

Am feeling jealous

6 replies

needmorecoffee · 01/12/2007 17:53

Had a friend visit today with a 3yo dd as impaired as my dd. If anything, my dd vocalises more and indicates 'yes' better.
Yet her SALT has sorted out an 8 pad communication device with different pictures you can slot in, a picture board for eye pointing or hands (they have equally crap hand function) and she is getting an eye ppointy thingy camera that costs 20K. We have a stupid message mate that does one word at a key press. If you want a different word you have to re-reocrd it. Its pants. We tried the super stuff with dd and although she struggled physically, she grasped the idea very quickly and thought pressing a picture of 'pink' and hearing the word was the best thing ever. And we could say 'try blue' and she would try to move her hand - not always succesfully - to the button with blue on.
I'm so jealous I feel sick as I'm told that dd can't have the super stuff as its 'not availble' or 'she's not able'. Only way to see if she can use it is to bloody try it and she showed today she got the concepts.
{angry]
So I'm venting again at our cities crappy services that hold kids back.

OP posts:
MinnSpyHandCream · 01/12/2007 18:15

You poor things!! I am so angry for you and know how you feel. My DS is, for want of a better word, mentally handicapped.
I see other people getting so much for their DC's with special needs and we get walked over.
Do you have any charities near you who could help with funding? Local newspapers could run an appeal possibly. Badger SS, make yourself a real PITA!

Whats 20k when it means a childs happiness?

jinglebells2shoessmells · 01/12/2007 18:18

this is why I advoid dd's friend who has one her case. (oh and cos the mum said her dd needed more inteligent peers!) she can buy anything her dd needs.
But at the end of the day you can't buy love.

jinglebells2shoessmells · 01/12/2007 18:19

sorry won not one

needmorecoffee · 01/12/2007 18:44

All kids should be able to reach their potential but the equipment that lets them do that or the assessments that help discover what they need are a postcode loterry.

OP posts:
jinglebells2shoessmells · 01/12/2007 18:56

tell me about it. it is that way with everything including nappies

midorimum · 01/12/2007 19:26

On a similar theme, this week ds tried out a MyTobii P10 eye pointing computer system, the communication people werent sure how he would do as the youngest they had previously tried with it was a boy of 8.

Ds was an absolute star! He got the calibration bit done on the first go and then proceeded to turn pages and select pictures and phrases etc on the various software programs it came with.

one of the programs was a picture that was covered with different coloured squares which you had to look at in the correct order to reveal the picture, what colour to choose was written at the top of the screen so the woman was explaining how it worked to us and said to ds can you look at "red" and he looked at the word red rather than the colour! PMSL

another program spoke what symbols and phrases were selected and ds kept "saying" i like chocolate, i like pizza, can i have the television on etc

it was an absolutely fabulous device and had a keyboard screen where you could type a particular letter and either select the letter or a symbol starting with that letter, to make up sentences, then you selected a mouth symbol and the computer spoke the sentence, he particularly like this screen as the "girl" had a nice voice and he kept getting her to repeat it.

it also has various software for stuff like playing music, turning on and off lights, browsing the web etc, so would suit adults as well as children.

he was on it for over an hour and afterwards i asked the woman how she thought he had done compared to others she had tried with it.

she said that ds was only the 2nd success that she had with it!!

the other was a man who had an acquired brain injury so knew how to speak etc before his accident so found it easy to use.

i was gobsmacked, i knew he was good at eye pointing and loves computers so this was the obvious thing to try with him but i was suprised that he did so well.

Only thing is the one she costed for the man included a wheelchair mount etc which ds would not need just now so i did a search on the web and found what he would need costs £11,300, so i thought maybe something for the future....hopefully the prices will come down and the technology will no doubt improve over time , but it made me really optimistic for his future that he could accesss stuff like this as he cant really do a thing for himself and his hands are next to useless to him but with something like this

the woman said that the education department would only fund this if it was proven to be the ONLY method of communication he could use and would look at all the low tech methods first, he already uses a colour coded symbol board with 16 choices on it and can on occasion hit a switch but it takes a LOT out of him and after the first few attempts his dystonia kicks in and he cant do it and gets frustrated....the only time he got frustrated with this was when we switched it off!

spoke to a few people about charities and fundraising and today a good friend said she would ask someone she knows who runs a charity if they could help and also said her sons work might be able to do something to, so fingers crossed!!

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