Posting on this Board

[hels9]

I'd be interested to know what anyone else thinks, but I do find it frustrating and a real shame when people whose children blatantly do have special needs in the literal interpretation of the phrase feel that posting on this board might be inappropriate. Special needs are, so far as I'm concerned, special needs of any kind - whether related to health, physical needs, behavioural or general-developmental. And that is why I look to this board for advice and support from understanding parents. Plenty of parents have children with special needs in several or all of those categories in any event, and it really would be tiresome to have to post the same message on several different boards to get to speak to everyone you want to.

I will rue the day we ever get separate boards for different categories of special need. (Anyway, the whole argument about dividing special needs up into more specific sub-categories reminds me a bit of the witterings on the Gifted and Talented board by disgruntled mothers who feel that there are too many merely clever children's parents posting on there, so the board really ought to be renamed, or the offending parents chased off with their tails between their legs - albeit that the reasons behind fearing this is the wrong board to post on are far more noble and sensitive to others' feelings than those behind the G&T comments).

? what have I missed?

Has someone asked for the SN board to be divided up???

sorry i am slightly lost?
hels9 has something upset/offended you?

eh?

I have only ever seen sympathetic responses to anyone, whatever advice they are seeking, from this board!

Has there been a discussion about dividing the board up somewhere?

If there has then I agree with you that it wouldn't be a good idea. There's so much that is relevant to most/all of us, regardless of the dx our children have. It would be a shame if that was lost because we were all busy sticking to separate categories.

no idea what you are talking about. I pop in most days and can't remeber that ever being sugested.

The message was really related to a couple of things: one from a few months ago, when there were a few postings commenting generally on posters' irritation at other peoples' concerns that they deemed to be rather trifling - something that really hasn't happened recently, but did make me feel uncomfortable and worried at the time that I might have offended people by talking about my son on here (albeit I understood the need of the posters to let off steam somewhere, given that their children obviously did have multiple difficulties far in excess of any problems my son is ever likely to have); and the other in relation to the marfans posts, where the idea of a special health needs board was raised(albeit I don't think really seriously), because people felt slightly uncomfortable about posting on the special needs board about marfans syndrome. As at one point it was thought a possibility that my son might have marfans syndrome, I would have been particularly disappointed not to find anyone whose child has this condition to talk to on this board because they thought this wasn't the right place to talk about it.

I didn't mean to sound cross about it, though. I've found this board a fantastic source of sympathetic and non-judgmental advice, have never had any unkind or thoughtless remarks directed at me and just really want it to stay that way for everyone.

I kind of see what you mean i think. it is hard sometimes when you come on here and there isn't anyone in the same boat as you(this happens to me a lot) but I don't think changing things would make it better.
we do have a lough on hear and a moan about things people say. maybe that has been taken the wrong way somewhere along the line.
(I am 2shoes by the way)

I read the posts on the marfans thread and I don't think that there was a serious suggestion that the board should be split. The posters themselves were considering whether the best place to post was in SN or in health as the need was more 'medical'.

I felt it was just a general observation that the MN SN board has a lot of parents of children with ASD/Aspergers. And TBH whilst this has been true in the past I think recently there have been more postings regarding other special/health needs.

medical overlaps quite often as well.
please can someone tell me what Marfan is.

From the Marfan's website 2shoes

... Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In the Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, the Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.

More here

thanks I like to understand. well doesn't seen just medical as you would have loads of other stuff to deal with.

There are always going to be different combinations on the board. i tend to read anything that might be to do with learning disabilities or severe disability as I don't have time to read everything and that's the most relevant. I don't even read all the ASD stuff unless I have a lot of time as a lot of it isn't relevant to me. Doesn't mean that this shouldn't be a place for others to post though with any sort of disability/SN.

This sort of concern:

"did make me feel uncomfortable and worried at the time that I might have offended people by talking about my son on here (albeit I understood the need of the posters to let off steam somewhere, given that their children obviously did have multiple difficulties far in excess of any problems my son is ever likely to have)"

comes up every now and then and I never really understand why. I don't think that in talking about their child's severe disability people are trying to make other posters feel bad for not having that level of shit to deal with, they're just offloading about their own situation. I think this idea of 'it's not bad enough' can only be coming from within iyswim.

Just post away. There's enough of a spectrum on here that someone will answer. 95% of the threads that I don't reply to on here I don't reply to because I haven't read them. The 5% I read and don't reply is because I have nothing useful to say- not a judgment on someone's posting.

Hi hels9, we were talking on here a few months ago when people started putting those posts on that you mentioned. I took them the same way that you did. That's one of the reasons why I said I felt uncomfortable about posting here sometimes.

Dd's problems are different to most of the children that are discussed on this board, but I'm equally as uncomfortable about posting on the health board! Someone over there asked a serious question about their child's chest deformity (the same as my dd's), and a couple of childish mn'ers took the mickey about what it was called. So I had a go at them, wondered if they'd find such comments as funny if their child was like that. Fortunately, I can't imagine that happening on this board.

hel9. I was very surprised by your post.
You got me really curious! So I read the marfan thread and I think you have misunderstood.

A mumsnetter called "marganregular" posted the following:

"Wow, more people with Marfan on here! Wahey! Bit surprised to find this in Special Needs but then I suppose getting a separate Special Health Needs section here on MN would be a bit much "

From what I read SHE(a person affected by Marfan) appears to deem that Marfan is not a special need.

I think everyone is welcome to post.

I have learned about Marfan now though!

Quite a few of us regulars "stalk" the other boards - e.g behaviour/development, to give advice on speech and other developmental issues that people haven't felt appropriate to raise on SN. And sometimes people do shy away from posting SN issues on SN, for reasons I think other than us being a nest of vipers!

Well, I feel quite comfortable about posting here about dd who has another connective tissue disorder, and I've never had anyone be unsympathetic to me.

As far as I'm concerned, connective tissue disorders are Special Needs. For many people, it's something that interferes with your daily functioning just as much as a behavioural disorder would do. Dd has mobility problems and chronic pain and certainly needs special help if she is to function. It's only our local LEA that won't recognise it as a disability- but I expect MN to do better than that.

I like posting in here, because I know my posts will be read by other Mums who understand about the daily struggle with a disabled child whose problems won't go away. In the Health section a lot of the posters are naturally people with temporary problems, so they won't have that experience.

I'm happy to read about all kinds of problems - I think someone did once post in saying that his daughter was having problems learning chinese but even then I suppose it was a problem in his mind.

Connective tissue disorders can be very variable. No 2 people with the same diagnosis will be affected in exactly the same way, and that scale goes from being totally unaware that you have such a condition to being wheelchair bound. Most people with marfans can lead a pretty normal life, but not all of them can. A woman I know dislocated all of her joints so badly that her arms and legs were in plaster for months at a time.

My dd gets higher rate mobility and middle rate care for her DLA. For her, there is a bit more to it than just being tall, thin and slightly double-jointed.

As someone else said, the other issue about posting here is admitting to yourself that your child has got a problem that won't just clear up after a few weeks.

TC - LOL at the stalking of other boards. Me too.

All types of SN are welcome. I missed the Chinese thread though.

I stalk too - but I feel nervous about making too many suggestions as I am conscious that I can imagine I have become some kind of pocket book expert just because I have an ASD son and an NT son so I think I can see all sorts of important signs and significant differences - but NT spectrum is wide too just like the ASD one.

I certainly didn't mean to imply this board was a nest of vipers! I wouldn't have been posting on this board if I did think so. I still do think, though, that a few months ago there were some comments that went beyond offloading individual stresses and got a little bit demeaning of other peoples' genuine concerns. I've always seen myself as pretty thick skinned, and obviously it didn't put me off posting, anyway, but I nevertheless did take the comments that way, so naturally assumed that they could be putting other people off posting on here if they were looking on the board at that time - particularly given the hard time so many people have even confessing to themselves, let alone anyone else, that their child's problems might actually classify him or her as having special needs. It was just as much this fear some people have of the term "special needs" that I was commenting on as the possibility that some people who might tentatively have been thinking maybe this was the right place to post could have been put off by one or two rare comments on the board.

I've probably made myself even more opaque, now, so I shall retire gracefully!

I am not being funny hels9 as I dont really know what you are talking about in respect on marfans etc but alot of people who do have children with such debilitating special needs do need somewhere to offload, they may also post without giving much concern as to what others think because they are lacking in sleep/completely stressed out etc etc and just dont think but I am pretty sure it is never meant to be insensitive to people who has children with milder special needs or whatever. They have far too much on their plates to even give it a thought. The special needs board is there for everyone to post their worries on. It has never been a competition

Hi, oiFoiF,

I agree, this should be a place to offload (and I confess to reading the offloading postings sometimes because they do make me feel better about my own lot in comparison to others and therefore see life in better perspective...). However, I still maintain that a few months ago it went beyond this and made me feel as though there WAS some kind of competition going on for who had the most miserable time of it and why their situation was worse than those of others, by making direct comparisons with other peoples' situations. I don't think it is ever right to try to compare your own situation to anyone else's. For one, your own mental and physical health affects the way you deal with your child's problems, so a parent of a child with less needs may genuinely have a harder time of it than one with more complex needs.

hels - the nest of vipers comment was a joke (bit of an MN in joke, can't even remember who originally described it that way).

Oif - I remember posting a year or so ago about not being sure if my concerns over DS (whose SN are relatively mild in the scheme of things) were tipping me into depression - I was very touched that you gave me so compassionate and helpful advice, and did not think I was being a drama queen.

In general - I think many of us, whatever our children's problems, have common ground, in having a child who is out of sync with the norm in whatever way - in feeling that the carpet has been taken from under us with regard to the simple things that we take for granted as naive new mums. Also the pain at times of seeing kids our kid's age or younger doing things with ease that our kid's struggle at, and the isolation that you can feel in RL when your child isn't ideal playdate material. This common ground means as Oif has put it, that it's not a competition.