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See all MNHQ comments on this thread

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 · 04/11/2011 14:14

oh, how lovely saintly.

I take it there has been some fundraising for your ds1? I wish I had known, as I would have liked ot contribute. You have, over the years, given so much advice to others, and my dd1 would not be where she is today without the help I have received from you many times (neitehr would dd2, actually, come to think of it)

I hope ds1 has a ball (is it to do with a communication device? I do hope so. although whatever it is, you and ds1 thoroughly deserve it)

Original poster
saintlyjimjams · 04/11/2011 14:20

Yes communication device - and just one mumsnetter, a truly lovely (anonymous) one. So I need to say thank you from the bottom of my heart to whoever it is.

Will think of ways to promote AAC - it is so underused in the UK. DS1 has been shoving the advert at me frequently (he was gutted when his trial finished and the talker was taken away) so he will be so delighted.

Yes council have already told us we wouldn't get it funded as 'things have changed these days' - but we needed a no from them before we could approach charities. They have been taking 18 months to say no in other cases Hmm which was why it was essential to get a name to hassle

Someone on here really is just about to change ds1's life.

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silverfrog · 04/11/2011 14:26

how exciting Grin - he will be over the moon! - please can you link to your blog (or whatever) - I really look forward to seeing what your ds has to say about, well, anything, tbh.

MN really can be amazing - I (and dd1) had sponsorship for a funrun to fundraise for her iPad. that has changed her life immeasurably.

god knows where we (dd1 and I) would be without this place.

Original poster
saintlyjimjams · 04/11/2011 14:29

Yes I'll see whether it can be a mumsnet blog as well - I'm not entirely clear how they work. I'll probably talk a bit about surfing on it as well Grin. Actually ds1 will probably end up talking about surfing as well - it's his main topic of conversation - every day starts with 'narheen?' It isn't a core vocab word Grin but I think we'll have to add it. :)

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Blu · 04/11/2011 14:34

That news has made my day - very happy for you and your DS, SaintlyJimJams. I hope the kind person responsible gets as much enjoyment from reading the blog (if that's what you decide to do) as you and your family will get from your DS being able to use this wonderful device.

MNHQ
RebeccaMumsnet · 04/11/2011 17:44

@saintlyjimjams

Yes I'll see whether it can be a mumsnet blog as well - I'm not entirely clear how they work. I'll probably talk a bit about surfing on it as well Grin. Actually ds1 will probably end up talking about surfing as well - it's his main topic of conversation - every day starts with 'narheen?' It isn't a core vocab word Grin but I think we'll have to add it. :)

Please do saintly just send us a mail when it is all up and running and we will forward it over to our Bloggers team.

So happy for you and your DS.

Original poster
saintlyjimjams · 04/11/2011 18:13

Justine has been in touch Rebecca :)

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StewieGriffinsMom · 04/11/2011 18:30

This reply has been deleted

Message withdrawn at poster's request.

BarryKent · 04/11/2011 18:39

This reply has been deleted

Message withdrawn at poster's request.

Original poster
saintlyjimjams · 04/11/2011 19:00

Oh Barry would love to hook up with you and will do what I can to help and also yes publicise and campaign. Have replied.

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BarryKent · 04/11/2011 19:23

This reply has been deleted

Message withdrawn at poster's request.

Original poster
saintlyjimjams · 04/11/2011 19:47

And you BarryKent Smile

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MNHQ
RebeccaMumsnet · 04/11/2011 21:40

Hi saintly,

We sent a link to this thread over to the very lovely MNetter and she asked us to post this on her behalf. I will c&p what she has said:

"Thank you very much for the link - I'm all teary myself!

Could you do me a favour? Would you mind posting on that thread and telling jimjams that I'm watching it - very moved by what she has sent through, and I will watch his progress with love and interest.

I don't want to keep pestering MNHQ, but she should know that I will
continue looking for her posts/blogs etc, even if I don't make contact."

Lovely Smile

Original poster
saintlyjimjams · 04/11/2011 22:02

Well that's me in tears (again). Such a lovely person - and I don't really have the words to say thank you.

I asked ds1 which colour he wants and he's chosen (very firmly) bright green when he saw the pictures he said 'mmba' (talker) and pointed at himself repeatedly. I can't wait to see his face when he realises he has one.

He'll be using an approach called LAMP - I'll write lots more about it on the blog - but he's the thirty something'd person to trial it in the UK. He flew with it during his three week trial, in a way I haven't really seen him take to anything before. We've tried other systems in the past but it's been a case of hovering over him and making him use the systems which have been slow, and frustrating for him. Using this LAMP approach he wanted to use the talker, fetched it, and brought it to us. It's fast and it's very flexible and will give him access to a vocab of something like 6000 words! I'll put a lot more about it on the blog, as it's quite different to other approaches and from what I've seen with ds1 I'm convinced and would love to see it more widely available in the UK!

The funniest thing he did during the trial was the second day he had it. I had a social worker visit to try and cut his care package. Ds1 turned up in the room talker in hand and repeatedly said 'go go go go go go go go go' 'goodbye' 'stop' 'go go go go go' Grin (When that didn't work he handed her her handbag).

My Mum btw is completely overwhelmed by the generosity. She has a very close relationship with ds1 - and she is so happy for him and really touched that someone would be so thoughtful.

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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.

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 Hmm. 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. Shock There must be no legal requirement there either Shock

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 Grin

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slightlycrumpled · 05/11/2011 09:11

Haha at mugging surfers Grin. 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 Grin.

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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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 · 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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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

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.

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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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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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