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

Original poster

You can all call me an old cow but I'm fed up with SN board being used as resource for general advice

296 replies

Davros · 18/04/2005 17:48

We seem to have had a spate of threads started by parents who have worries about their child's behaviour and development. Most of these don't seem to have looked through the SN archive (although I have told Tech it only goes up to D it certainly covers Autism, Aspgergers, ASD). I don't want to be totally horrid but I wonder if people could have a little sensitvity into our situations and check the archive or simply post in B&D where I think most of these threads would be more appropriate.
I wasn't going to say anything as I thought it was just a phase and would stop but then two more appeared.
OK, call me an old cow.

OP posts:
JakB · 19/04/2005 17:12

Ah, dinosaur, I like the fact that this board has mums of children will all types of special needs. That's what makes the board great- you get lots of different perspectives. That's really sad that you don't post on here anymore because you feel your ds isn't as needy as a child at the more severe end of the spectrum. Blimey, all parts of the spectrum hold their own challenges. Please post on here again, Dinosaur!

dinosaur · 19/04/2005 17:20

Sorry, Jak - should have explained properly - I've actually started a separate thread explaining why I'm leaving the SN board - it's mainly an acknowledgement of the fact that heh doesn'#t really have special needs - as witness the fact he is managing in mainstream without any extra help.

TheRealMrsF · 19/04/2005 17:21

noddy...I am 37 and believe i am an adult with AS..... if i can help CAT me..... though i prefer posting on here...so will answer honestly in public ...as i believe that if i post my perspective (which can be a bit skewed!!!!) then people like you can 'store it' and then next time the adult you know who may/may not be AS etc....co i MAY/MAYNOT really be AS...I just am sure cos of the stuff i've learnt about AS since my son got DX.....well...then like you said you can sometimes see why they may behave/think differently????

If we all stuck to private emailing none of this would see the light of day!!!!

However.....once a rapport/friendship is struck on here...then private emailing is fun and helpful too....

noddyholder · 19/04/2005 17:24

thanks the real mrsf I am hoping to talk to my brother about this soon but want to be sure of facts etc He lives in Ireland and I am in brighton so I don't see him often.He has just been put on medication as he had some sort of freak out over xmas and it has really helped him but I want him to ask his doctors about aspergers

heartinthecountry · 19/04/2005 19:15

Fio2 - what thread are you referring to honey? I am .

Blossomhill · 19/04/2005 19:28

Oh Cynical Sara, what did you say???

TheRealMrsF · 19/04/2005 19:42

Hmmmmmm BH...her other message on the 'Autism/cousin' thread has been withdrawn too.....i smell a rat....something fishy going on here!!!!

Blossomhill · 19/04/2005 19:59

What was that MrsF???

macwoozy · 19/04/2005 20:27

Cynical Sara mentioned her email address. Could that be why it was withdrawn?

lou33 · 19/04/2005 20:46

I rarely post on sn now because my ds has physical disablilities, and I don't feel I have any advice to give as there are not many topics i can help on

TheRealMrsF · 19/04/2005 21:38

ah yes....she was the one offering for any of us feeling unwelcome here to email her direct.....

Blossomhill · 19/04/2005 21:45

Oh, really!!!!

Original poster
Davros · 19/04/2005 22:03

If anyone's still interested, all I can say is read the WHOLE thread and read it carefully.
I think some people have misunderstood what I've been trying to say, which I admit has changed a bit over the course of the thread, but lots have understood. Anyone characterising SN as unhelplful, unwelcoming and unkind would be doing a great disservice to the whole of MN but esp SN and I think our records, mine included, speak for themselves. I still say that 6 or so threads of a similar nature within days is annoying and I know I can ignore them, I did until I opened this can o' worms! But posting on SN is NOT the same as asking where to get baby pasta or asking who prefers Henry over a Dyson.
I wouldn't like SN to be split up as we share lots of experiences like Statementing, DLA, laminating etc (and we have a laugh quite often). Unfortunatley the increase in ASD-related threads probably reflects what is going on in RL. But we do get quite a few other disabilities/disorders/health issues etc and I know I can't help with most of those whereas Lou and Eidsvold, TC etc can and do.
I'm still interested in the idea of SN FAQ. How would it work? Can't get out of this post to check if MN already has any FAQ sections. I might start a separate thread to brainstorm, once I get time following DS's dreaded Annual Review tomorrow....
Now, must get back to my new copy of Heat.

OP posts:
eidsvold · 19/04/2005 22:10

i just felt I had to say that I post here quite regularly and my dd's diagnosis is down sydnrome. WHilst I cannot relate to some things you guys talk about I do relate to a lot of other stuff and feel I can say a simple - sorry you had a tough time or yeh your lo achieved something.... don't feel that I don't have a place as dd does not have autism or related issues....

I totally understand where you are coming from Davros. It can get weary dealing with day to day things and then feeling like you have to be a resident specialist for others....when all you may want to do is lurk and chat rather than counsel.

Part of me also thinks there is soo much out there on the net about so many things that googling what you may want to know would also be a good start. You then have sooo much at your disposal... including other threads of mumsnet. In fact that is how found mumsnet.... I was searching for advice on cradle cap and a google threw up the thread for it. From there I found you lot

Jimjams · 19/04/2005 22:31

Good luck tomorrow Davros.

Agree that it might be worth re-reading some of the thread- no-one is saying you can only post here if your child has SN, or that you have to have a severe dx.

Think tamum's and twigletts and scummy's post summed up the issues well.

Blossomhill · 19/04/2005 22:40

Good luck for tomorrow Davros.

MotherEve · 20/04/2005 00:15

Hi there
This is my first posting on this board. I read all of this thread and then went off and searched the archives for any discussions on SALT. That was at 9:50pm - I've just finished reading the posts and I am a speed reader - it's now 11:58pm.

I can understand the frustration at repeat questions. I'm doing an on-line degree and there are so many repeat questions within the communities on there - you just think "Oh no!" - thankfully that has a facility for dragging a previous message into your reply and creating a link.

An FAQ would be the ideal way to share advice in an accessible manner. Does mumsnet have such a facility? [Don't throw things - I might have found that out if I had a spare month to read all the messages!]

If not then why not use a blog or similar as a repository of good advice?

JoolsToo · 20/04/2005 00:21

you sound too technical for us

MotherEve · 20/04/2005 00:30

Hi JoolsToo

Sorry to be technical - a blog is a sort of online 'diary' although you can use it for pretty much anything you want really. You post an entry - bit like here - and the threads are listed in date order. Some of them enable you to add a 'tag' to the posts such as 'SALT', AS/HFA, DS etc so you can organise the information and make it easy to find.

mommysandrine · 20/04/2005 03:55

Hi. I posted under B&D some months back.

A FAQ is a great idea, but there's no substitute for being able to ask specific questions about one's own child. I wonder if there's anyone out there who does an "Ask the Expert" kind of column for folks with questions about their children's development. (And I mean a true expert...not some silly doctor looking to drum up business through a column on their web site.) I think worried mums would be happily take their worries elsewhere if they could be redirected to such a place...but is there? I imagine most of the worried mums, while conscious of their intrusion into what should be a support board for Special Needs parents, are just desperate and don't know who else to ask and just post despite the intrusion.

No one here is an old cow. I'm quite sure of that.

suzywong · 20/04/2005 05:56

Oh I've been desparate to call this thread's creator and old cow and now I know it's Davros I know I can do so with impunity (dry SOH)

You Old Cow

Original poster
Davros · 20/04/2005 07:33

Thanks Suzy! Moo moo moo for you.
Mommysandrine, I don't think anyone is trying to avoid giving info/advice/support. The great thing about MN is that you are getting that from other parents who are usually SO much more helpful and clued up than many professionals on the day-to-day stuff and don't have an agenda. So that's not the issue at all and SN isn't a private club (not yet anyway Fio!) but its still the same old point of people asking very similar things lots and lots of times very close together without looking at the Board first. String em up I say
Dunno what a blog is, DH was going on about them the other day and saying he had been enjoying some prof's blog. So maybe that would be a good idea and we should look into the FAQ thing too.

OP posts:
Jimjams · 20/04/2005 07:43

Something that people ask for a lot- and I know I don't have the energy to keep typing is everyone's early signs. What their child was like as a baby/toddler. I can understand why I would have wanted to know the same thing. Maybe some sort of link to the early stories would be useful (anonymous would be fine).

Although I can understand why people want that I'm not sure its that useful as our children are just children and are all completely different from each other. I took false comfort from the fact that ds1 was soooooo passive and not at all stroppy. But anyway would be happy to leave my story somewhere it can be linked to along with others if that would help.

have to do it soon though- the details are geting very hazy- seenms a lietime ago. TBH I don't really like thinking about life pre the realisation that something was wrong, it was a really happy time (happiest of my life- new baby glow and all that) but now feels false.

Whoops off topic.

Fio2 · 20/04/2005 07:49

kwym jimjams, i was exactly the same, even went on to get pregnant again in complete denial, oh well!

tatt · 20/04/2005 08:25

why don't you ask mumsnet if there could be a FAQ for the special needs board and a note asking people to look there first before posting? That's if some of you are prepared to draw up, say, a list of things that would suggest when someone should ask you for help and when they should just go the B&D board?

I've sometimes wondered if that would be helpful for the other problems like allergies and eczema. I remember only too well what it was like when I first learnt about my kids problems so I'm happy to offer others help. I guess if my days (and nights) were as bad as some of yours I wouldn't feel like bothering either.