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SN children

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

Notice how packed this forum is?

51 replies

mamadadawahwah · 03/05/2009 22:23

Either more people are becoming aware of the forum, or more kids are developing 'conditions' that bring parents to forums like this.

is this the most visited forum on mumsnet? i bet its close.

OP posts:
Phoenix4725 · 04/05/2009 14:12

for me the fact that the forum is not limited to one paticular dx .I teid a asd forum but because we dont have dx of it just traits as of yet was mad to feel that we was unwelcome

where here been usefull and welcoming

treedelivery · 04/05/2009 14:13

Money aside [isn't it tedious] could she come or is that just not possible? I don't know her needs at all but have realised she has some specific needs.

I do apologise for thread hijack and total ignorance.

sarah293 · 04/05/2009 14:23

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treedelivery · 04/05/2009 14:28

So we need - a super band style tour bus. Would Bono not help? Does anyone have his number? Will stick VW spare wheel on front for effect.
The grass is on sand an apparently it doesn't get muddy, but we'd have to just make a path of those temporary rubber things [my mum has them for the man she cares for].

Medical access a big bugger however. Must be so hard for sn in rural ^rural6 locations.

My dd2 can mask your dd - no one will know who it is.

God if you wanna go me and dh will help in anyway we can.

treedelivery · 04/05/2009 14:29

rural rural location. Up Snowdonia or something.

slightlycrumpled · 04/05/2009 15:00

I found mumsnet through googling DS2's symptoms, before we got his diagnosis and it linked me to a post of Fio's and I liked it here.

I have had invaluable advice about statementing, and without doubt he would not have the water tight full statement that he has had I not had access to all the fab info that posters gave me.

It also gave me a space to vent/worry etc when we were making a very difficult decision about surgery for him. I felt less alone.

sarah293 · 04/05/2009 15:02

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sarah293 · 04/05/2009 15:02

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treedelivery · 04/05/2009 15:04

Yorkshire Riven.

About 3.5 hours to the festival. Hey Ho. On the coast so its an hour to a big Supermarket.

reducedfatkettlechip · 04/05/2009 16:18

Same as slightlycrumpled, started off MNing on SN (found accidentally through googling ASD symptoms) and now get distracted a bit by Style and Beauty, and more recently the weight loss threads!

I always look at SN first though, it's so interesting to see how everyone is progressing, and to share in good news, and try and support when it's not so great news. This site has been invaluable for me.

HelensMelons · 04/05/2009 18:27

Me too, my sister told me about it. Don't venture off sn much. Couldn't do without the help and support tbh.

Widemouthfrog · 04/05/2009 21:59

I joined mumsnet when DS1 was born, and I was getting bored/ missing DS while I was at work and he was in nursery . No longer working and 4 years later it was the SN board that made me realise/admit that DS was autistic.
MN has helped me through diagnosis, statementing, DLA applications, and just life really over the last 18 months. No doubt will continue to help me as DS2 is now being referred.
I only post on SN now - I just don't seem to fit anywhere else, and I'm not sure I want to . I love the mix of real support and advice mixed with a healthy dollop of humour.

nikos · 04/05/2009 22:39

I came on mumsnet about 8 years ago and posted on all sorts of boards under a different name. When ds' needs (ASD) became apparent and he was dx, I felt like a different person and changed my name on here.I now rarely post anywhere except sn. Which is partly that my life has moved on a bit on the childcare front (older 2 are 8 and 6 now) but also that everything else doesn't seem that important or bother me that much. I suppose an advantage of having a child with sn, is that I don't sweat the small stuff with the other kids or life in general.

sphil · 04/05/2009 22:48

I've learnt more from this board than from any other single source of information anywhere - and that includes all the professionals I've had dealings with (with the possible exception of the Growing Minds team). It's taken me from pre-dx when DS2 was 2.5 and I was in a state of confusion, denial and panic until now, when he's 6 and I am the embodiment of calm . Well maybe not - but it has been my lifeline, truly.

Peachy · 05/05/2009 15:59

I still remember the person who responded to my first ever post on this section about ds1. Obviously we've moved on so far since- first ds1, then ds3, now ds2'sSEN and even ds4 is showing a few things that could be ASD or could be NT awkward toddlerness (restricting his diet fort exture, that sort of thing).

In that time i've gonme from being know nothing petrified basket case to clued up, in copntrol (usually) and able to pass on much of what i learn on here, especially to Mums on or off MN new to the system.

It's an amazing board. And people sort of slip in- so you just chat, there's no silly 'can't help you becasue you asked in text speak / called your child by a 'chav name' / had a frootshoot' stuff.
It grows with you as well, so in 2008 I was just trying to work out the DX thing for ds1; these days I'm looking more at puberty questions, SNU issues for ds2, but that's OK here without finding a different board.

sc13 · 05/05/2009 16:36

I think this section has turned my life around (seriously), in terms of awareness, education and feeling I'm not on my own.
I hardly ever go to the other sections, because it still grates a little to see those 'Help, I'm in the pit of desperation because my son can't recite Shakespeare at 3' threads.

Peachy · 05/05/2009 18:10

I think the first wave ot FFS at those threads SC13 doe3s pass into a combination of PMSL / never count yer chickens in time

Interesting career BTW (just read your profile). Where were you when i did my Islam presentation on Science in islamic Cultures? Always the same isn't it, they come on here afterwards! Tsk! LOL

sphil · 05/05/2009 23:48

Peachy - I didn't know your DS2 had been dx with SN?

Peachy · 06/05/2009 08:37

Sphil- we were pulled up a fewmonths back now, some tests they did for dyslexia came back as ADHD, Dyspraxia, Dyslexia...... in fact everything they can test for bar dyscalculia 9including social communication disorder but I strongly believe that is a thing learned from his siblings IYSWIM). So SEN, rather than SN IYSWIM.

He's on SA, being bumped to SA+ this month. performing in bottom 10% of year apparently though I know he can do better.

So- arrrghhhh LOL. I've told them that i won't be seeking a referral/ formal DX unless they approach me and tell me that they think I should, they said wait until he's in Yr 4 (September) and then review.

I have come to the conclusion I have crap genes. DH wanted a vasectomy anyhow, we are considering asking the LEA to fund it privately, we suspect they will jump at the chance

sphil · 06/05/2009 21:45

Strange coincidence - we are going through something very similar with DS1. Informal OT assessment described him as probably dyspraxic and possibly dyslexic. We are also deciding whether to pursue a formal dx or not - school also want us to wait until Yr 4. They've offered a weekly OT programme - it happened once three weeks ago and then not since! I get the distinct impression they thinking I'm being over-anxious - he's performing at average levels for most things, above average in reading and below in writing, where he's probably in the bottom 10% - but they seem to think that it's just 'a boy thing'.

So crap genes here too

Peachy · 06/05/2009 21:57

Ah Sphil you life stalker

We've got to make an apointment this week with thje genetics team. Dammit

bsac15 · 06/05/2009 22:51

Can't remember how I found this site.
Bl**dy happy I did tho!

Sometimes I cry, sometimes I laugh, but I always switch of the computer having learnt something new.

It embarrasses me to think how ignorant of the SN world I was (still am), until I came here (because I needed help from mums like you).

Thank you for being here.

saintlydamemrsturnip · 06/05/2009 23:58

sphil sphil lets meet up again, This time with ds2 in tow. I think my ds2 and your ds1 would get one well together.....

slightlycrumpled · 07/05/2009 08:47

I think we have slightly crap genes too. I was called into school last week about ds1 with similar problems to your ds sphil. He also is fine except handwriting which is terrible. Can I ask how you went about getting an OT referral please?

Sometimes I think I must be doing something wrong, I would really like it if one of my children could just glide easily through education but that doesn't look very likely!

Oh well another day, lets see what delights it brings!

sphil · 07/05/2009 13:13

We have to CAMP, MrsT! I think our van might just be the answer to you and your DH getting a cup of tea, sitting down, together