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Original poster

Mumsnet is an amazing place

39 replies

saintlyjimjams · 04/11/2011 14:06

Thank you (you know who you are). DS1 will be stoked. And you've made me cry, but in a very very nice way.

I'll add more as I know/organise more over the next week or so, (and so this will make more sense to others - suffice it to say right now that there are some very, very generous mumsnetters). I'll do my best as well to make sure others benefit by way of sharing how it benefits ds1 (via a blog I think) and also campaigning for more public funding for others. I actually had to submit a complaint this week because we tried to submit the funding application to our local authority and they refused to even give us a name to send the report to. I ended up laughing that I'd had to officially complain before anyone had even read the application.

Sorry I know this will be gobbledigook to nearly everyone, but I really wanted to say thank you, (although am finding it hard to find the words) and I wasn't really sure how else to do it.

xxxx

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silverfrog · 14/11/2011 21:04

ha ha! always is the best motivator... dd1 only learned to talk so as to be able to put her order in at the kitchen - she spent years only being able to talk about food items - whole scripts that I had to adhere to strictly . the whole works, including jokes and everything ('mummy cut yoghurt' 'mummy wash banana', 'mummy peel blueberries' - demand issues meant she couldn't ask for what she wanted, but could tell me what not to do...)

the only other language she had was reciting stories (with absolutely no comprehension of even a single word contained within)

really brilliant your ds is getting on so well, and so quickly, with it. he must be so chuffed.

Original poster

saintlyjimjams · 14/11/2011 17:25

He's just asked for eat cheese (shown once ) I think we might whizz through food

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sis · 14/11/2011 13:22

I also loved that he wanted to share it with his grandparents - so lovely.

Original poster

saintlyjimjams · 14/11/2011 12:50

Surfing is on my list of 'how do I? ' for the training day

That focus is quite unusual. Usually he is the king of flitting!

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silverfrog · 14/11/2011 12:42

I thought he was brilliant - I cannot imagine dd1 being that patient while I showed her something new, even on something she is sufficiently motivated by (she channels stroppy pre-teen very well)

at ice cream! gotta get those number one priorities sorted

have you programmed 'surfing' yet?

Original poster

saintlyjimjams · 14/11/2011 12:39

I know - his enthusiasm during the trial surprised me. He loves the vantage lite - he really does. He only had to be shown ice cream once yesterday before he was ordering it

Oh yes lips as well - he is very affectionate - just likes to sneak in a sniff at the same time!

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silverfrog · 14/11/2011 12:31

there were lips involved too!

will be fab to have some targets - but he is so clearly motivated. I am very impressed by his waiting/watching while you demonstrated bits that were different.

Sidge · 14/11/2011 12:30

Oh I've just had a little smiley sniffle at that video saintly.

How lovely - I do hope he enjoys his new voice

Original poster

saintlyjimjams · 14/11/2011 12:27

I think it was probably a sniff rather than a kiss

He'll have his first SALT session with it tomorrow so we'll set some targets then I guess, or get some sort of strategy going for between now and the training day.

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silverfrog · 14/11/2011 12:22

oh, that has made me well up (and I really don't do crying )

the kiss he gave you (?) when you showed him 'left' - it seemed so heartfelt

I am so, so happy you and ds1 have this - I can only imagine how you must feel (and ds1!)

Original poster

saintlyjimjams · 14/11/2011 12:15

Whoops forgot to tick the box

alifeunlimited.wordpress.com/2011/11/14/its-arrived/ :)

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Original poster

saintlyjimjams · 14/11/2011 12:15

I haven't managed to write the background yet but have done the first post alifeunlimited.wordpress.com/2011/11/14/its-arrived/ :)

Sidge- that's lovely. It does make such a difference to have a voice

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Sidge · 11/11/2011 23:49

That's just wonderful

Whoever donated the funds is a truly lovely person who has done a great thing.

My DD2 had a Dynavox and it changed her life - she had a 'voice' for the first time in years.

Original poster

saintlyjimjams · 11/11/2011 23:42

He's very pleased. :) Actually he's bonkers happy tonight which I think might be related. DH has just commented on how happy he is. I took some video and will post a blog post this weekend even if I don't manage to get the blog pages written properly. He's been exploring it a lot tonight. So exciting. TY TY TY xx

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531800000008 · 10/11/2011 20:59

thrilled, utterly thrilled for you

the kindness of strangers

[wells up]

to the donator: whoever you are, you have touched lives, I salute you

Original poster

saintlyjimjams · 10/11/2011 20:07

Some photos uploaded :) DS1 is at respite tonight so hasn't seen it yet. We're arranging a training day for the end of November, but I know he will be stoked when he gets home from school tomorrow. :) :) I'm stoked now.

Blog is taking a while because I am so busy with work - but I'll try to get it done over the next few days.

Thank you so much xxxxxxx

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Original poster

saintlyjimjams · 09/11/2011 11:44

Yes I will be Mme Lindor :) I just have to get it set up. (getting there, darn work keeps getting in the way!)

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sis · 09/11/2011 11:41

Wow, just did a quick google and am even more impressed with the generosity of the kind mumsnetter!

I am so happy for you Saintly - as others have already pointed out, the lives of so many children with special needs, including my son, have been hugely improved as a direct result of your help and advice that it seems only right that you and your family get something as lovely as this.

MmeLindor. · 09/11/2011 11:27

Am not sure what it is, but I can see that this is somethng that will make a huge difference to your DS and look forward to reading your blog about it.

Will you join us on the blogger network and share you blog with us?

MN rocks. :o

Original poster

saintlyjimjams · 09/11/2011 11:22

Gosh I am so excited. The Vantage Lite has been ordered and should be here within the 'next few' days. :happy dance: The company will arrange a training day for everyone at school (and hopefully respite will attend). DS1 has not stopped 'talking' with us recently - we are stuck with very fixed topics because we have no hope of understanding anything he says if he strays away (and 90% of these conversations are with me as I'm the one who understands him). My Dad commented a couple of days ago that the talker should really help him coverse with more people and about many more topics. Ds1 has a lot to learn but I think he'll love it.

I've started the blog - haven't got much further than sketching out the pages yet, but will bash on with it this week.

Thank you so so much again xxxx

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Original poster

saintlyjimjams · 05/11/2011 18:37

Oh and the waves today were perfect! He couldn't do today though :( I fancied a surf myself...

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Original poster

saintlyjimjams · 05/11/2011 18:36

I think actually one of the most important things is to be able to tell people to shut up/sodd off etc. It's when you can't tell them that you end up hitting them instead!

I am just trying to think of a name for the blog -something tk do with voices maybe as it really is him getting a voice. :)

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slightlycrumpled · 05/11/2011 09:11

Haha at mugging surfers . DS2 is like that with dog walkers, ( the dogs not the walker!) .

Your blog sounds really interesting, and you're right about it being similar to not allowing mobility aids. It sounds almost dramatic to say it's given DS2 a voice, but it really has. What's more it's something that he wii need to use as an adult to allow as much independence as possible.

When DS2 got his the first thing he learnt was 'shut up', I hadn't realised it was there and it was very funny hearing him tell DS1 to shut up. I did tell him not to be so rude, but only when I had stopped laughing! It was just so bloody normal. He is also fond of the birdie song which it arrived with, I cannot persuade him to let me take it off .

Original poster

saintlyjimjams · 05/11/2011 08:43

I think the problem is there's no legal requirement to provide one - so unless you can argue that it's an educational need you're a bit stuffed. Our local authority said they used to fund them (slowly - the one child i know who has one who waited 2 years for funding which is just daft) but now there's no money . I would say it's the equivalent of refusing a physically disabled child the necessary wheelchair but they definitely do that as well which is somewhere beyond unforgivable!! I know one girl who outgrew hers and eight months later didn't have a replacement. There must be no legal requirement there either

I'll get the blog set up over the week. I have a little bit of work to finish this weekend, then will get going.

Ds1 has the hump because he's not surfing this weekend (waves too small - so I've booked him in for next week with bigger waves forecast) but no doubt he'll mug any surf instructors we bump into when walking the dog

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slightlycrumpled · 05/11/2011 01:06

Oh jimjams this is so lovely. What a fabulous thing for someone to do.

It also goes to show how much of a postcode lottery it all is as well. DS2 was provided with one last year and whilst it was a fight it was by no means a war. It's shocking really. I have to say that it's improved things ten fold for him. Even simple things like show & tell are possible now that we can upload photos/words etc over the weekend.

I can see your son will have lots of surfing photos/ words on!

I am so pleased for you and as an earlier poster rightly pointed out the help that you have given in the past this is so deserved.

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