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).

hels - thing is DS's SN are relatively mild, in that I have no worries for his physical health (I do worry about future mental health implications) so I fully take on board that others do have it worse than me, and don't object to others feeling that way.

I meant my DS btw!

I am another one who has felt in the past that I'm not sure if I belonged here or not. I flick between thinking of DD as AS and ?AS, and even when it is with no ? it is as I described the other day, if NT is yellow and Austism is red, I see her as a very pale orange.

BUT you have all been so supportive of me, over time I have come to realise that it doesn't matter "what" DD is. You understand how I am feeling and offer fabulous support and advice.

As a society we tend to see SN as wheelchairs and rainman (sorry for the stereotypes but ykwim), so you feel like you might be burdening people with insignificant stuff. When you read a couple of threads though and lose that naivity (I don't think ignorance is the right word, that always sounds like you don't want to know), you realise that the SN boards are for everything.

Idon't know if any of that was relevant

sorry this thread is confusing me.
anyone who has a need to post on sn can so I cna't see the problem. I have never seen anyone get anything other than support(apart form a couple of trolls)
yes there are threads on here sometimes where people might post about how much easier NT is. But it is so......
can you explain what you mean please(to stop me waffling)

I think this thread is confusing you because whilst everyone sounds like they're disagreeing, we all appear to be in agreement, really. Hurrah!

I do agree with Fio-something that I think can be really useful for people new to the world of SN - especially when theire children's needs are severe is finding out that having sometimes 'ugly' thoughts is entirely normal. If people can't post that they sometimes find it difficult to listen to "trivial" concerns (and I do sometimes despite having been in this game for year, and despite having 2 NT kids who fill me with trivial concerns) then it's not going to be a very effective support group.

Over the years I've found one of the most useful things for people coping with a child with a severe or profound disability is that a) those feelings are normal, b) not they're not very nice or gracious but they are normal and c) they will recede a little.

It has nothing to do with anyone else. It's about having your dreams for your child dashed and feeling desperately sad about that. It's essential that people can express that and be reassured that that doesn't make them a nasty person. It just means that they're dealing normally with a very challenging situation. Don't underestimate the devastation of realising that your child is never going to talk/walk/live alone/get married/have children/. Those are big things, devastating things to have to come to terms with and it is normal not to feel sweetness and light about it every day. It's part of the process and allowed, and should be safe for people to offload that on here.

I searched a bit - and the one thread that started with a strong 'bloody hell don't you get fed up of everyone moaning on about utter trivial rubbish' was started by someone who has NT children only (and then someone else joined in along the same theme - and she also does not have SN kids).

"admit to feelings of jealousy "

I remember taking the younger 2 boys on holiday a few years ago whilst Mum and Dad looked after ds1. I remember seeing a family of 3 boys about the same ages of mind in a pub/restaurant sat around a table laughing and having a 'family moment'. I felt so jealous and sad that I went back to our lodge and sobbed God knows I'm sure they had their own problems, everyone does, but they had something that we will never have - a family moment - with presumably the entire family- round a table in a pub and yes every bit of me was jealous at that moment. It wasn't about anger at them it was about sadness that we will never have that.

I know when I offload/have a bitter/jealous moment I'm looking inwards. I don't want someone else's (perhaps trivial, perhaps not) problems or life - I just want ds1 to be able to talk be capable of coming along for a weekly shop.

I've never felt that either of you came across as jealous in any nasty way, Yurt/Riven.

Of course you are allowed to express your despair. Even if we've never known anything as bad ourselves, we can still offer a shoulder to cry on. It's not as if either of you jumped into other people's threads and went 'yah boo, stop posting on here!'.

Of course seeing what you can never share is part of the pain that disability inflicts on a family. We're here to support each other through that.

btw Marfan's, if it's bad, is something that people can and do die very young from. Though fortunately not as often as they used to. It's mainly a danger if undiagnosed (as it often is!), as you can suffer heart failure or massive haemorrhage. A young university student dropped dead on his daily jogging round the other year, probably wouldn't have happened if his condition had been know.

i have to say this borad as been a massive help to me, and all of you have been a great surport when i am feeling down i have come on here to off load!

I think I need to apologise, because I've obviously raised a sore point with several people on this board whom I've come to respect and like over the last few months.

My original post was never meant to dig at people who feel the need to offload - I get all the same feelings of jealousy with respect to my son in comparison to his peers, even though his differences are not severely marked, and frankly find it amazing how some people cope at all with the situations they find themselves in when I'm not sure I'd find the strength to cope day in, day out, with their situations for the rest of my life, particularly if I couldn't vent on a regular basis. I have no problem whatsoever with people offloading those feelings on here and in fact find the offloading messages helpful, because they make me feel more normal for sometimes feeling that way myself and make me see my own situation in better perspective.

The original sentiment behind my post was more in the direction that I find it frustrating that some people seem loath to view their child as having special needs, because they seem to have some kind of allergic reaction to the term itself. I just wanted to point out that special needs doesn't have to mean an appalling disability, and that this should be seen as a welcoming board for all people with concerns that their child is not developing in accordance with accepted norms. And by that I didn't mean that it wasn't already a welcoming board to everyone, but that I wished everyone would understand that it was welcoming to a wide range of people.

The point about earlier messages from a few months ago was really not meant to be the main thrust of what I was saying at all, but just one thought I raised as to why some people might have become a bit nervous about posting on here (as opposed to those who'd scared themselves off by their own interpretation of special needs) - I know I did get nervous about posting here for a short while over that time. But it really was a comment about an isolated period in time and wasn't meant to imply that the people who posted the comments were selfish, mean, jealous or thoughtless - just that if you were new to the board at that time and didn't therefore have the benefit of their kinder words in the posts when they were not offloading, you might have been scared off posting anything yourself. In other words, it really wasn't meant to be a damning indictment of the use people made of the board at all.

reading the last part of your post. i still don't get it.
are you saying that we should not complain about our lot in case we put new posters off?
sorry confused here

I have no idea what the point in any of it was

I don't get it either, TBH.

I think if a parent / carer has concerns about their child, Special Needs may not be the first place they think to come. I know when I realised that there were issues with DS2, I started on the Health and Behaviour/Development boards. I think I only came here when DS2 was assessed by the CDT and we got the special needs pack, and told that this would be my lot for life, and would be out of place amongst NT children and their parents / carers (yes still bitter about it 7 months down the line).

I think that we are in a different situation to most people who post on MN, and I think we should not feel bad about posting our negative thoughts. I know I have been guilty of that in the past - now I think I don't know what else is going on in every one's else's lives, so try not to be so judgmental about what on the face of it could be seen to be "trivial" concerns.

The vast majority of posters on here have been really kind, helpful and supportive, and I would hate to think that anyone is scared off because they don't feel their concerns are bad enough.

No, not saying any such thing. Just saying that everyone seems to have focussed on just one part of what I was trying to say that I didn't when I wrote it view as being of vast import, as it was a reference to a brief period of time on the board and not due to anyone's fault - just the result of a lot of people needing to offload extremely negative feelings at the same time (well, the build up to Christmas does tend to do that to people). At that time, there was a lot more offloading of the nature that other people don't know they're born, they think they have problems when they don't, and less of the offloading about being pissed off with your own lot and frankly jealous generally of other people. It's no-one's fault, you shouldn't be worried about expressing your feelings as they are, it's just that sometimes that results in a lot of extreme emotions which will scare people off if they are reading at that time and have not read the board before. Saying that is NOT the same as saying I think everyone should tone down what they say.

yurt1, ds1 went to a performing arts camp last week. On the last day there was a performance. It was mixed ages and when the girls dd's age got up to perform I nearly cried, there and then I thought I was over 'all that' but its different when you are confronted with it so rawly isnt it?

hels9 you said " 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"

is this something to do with the julia hollander threadf?

hels9
I am still confused TBH.
You keep referring obliquely to the build up to christmas and people being dismissive of others with borerline NT kids but without your being specific it does not make much sense to me.
i am not trying to be arguementative.I am genuinely puzzled and pondering whether I missed a humungus punch up
I have 3 kids and only one who has SN. I have my day filled with problems from all three but all problems of a different type. But coming to the SN board I am not going to be put off posting about DS1's minor sensory issues, or DD's crap imune system just because those issues pale into insignificance compared to DS2s difficulties.

I also can't for the life of me imagine posting about DS1s relatively minor issues and having someone respond with " its alright for you - you don't know you're born.

Equally I am aware that if I click on a thread that is being used by people whose loved ones have massive physical as well as learning disabilities I may read things about how lucky those parents are who don't have to deal with , say, massive mobility issues. I wouldn't regard that as directed at anyone - just an honest exoression of frustration.I would be surprised at anyone else taking that personally either.

So - my bafflement is have either of those scenarios happened ? And how did I miss that?

And I ask because I actually think this thread is as likely to make new posters wary as your comments keeping hinting at a directed agression towards posters whose children have minor issues - and I have simply never seen it.

Am I being hugely dim? ( entirely possible)

Threads like this just make everyone paranoid and upset

I hope no-one reads my threads about dd and thinks themselves lucky because we are the lucky ones to have dd

When I satrted posting there wasn't even a SN section

The only humdinger of a row on this area was the velcro cows one years ago

I searched yesterday and found a thread where someone moaned about people not realising they were born -and she was picked up on it BUT this person's child was newly diagnosed with a very severe condition- and I'm not remotely surprised she felt like that - I felt she needed to be told she wasn't a nasty person for feeling like that- that it was entirely normal and that it can be helpful to identify those feeling in a safe community (hopefully one like the SN board here). Unfortunately at the time the SN board was on free-for-all to read so she started to get a bit of a roasting

I don't remember any competitive threads- maybe I was taking part in them

I have plenty of friends with children with high functioning conditions and see the things they go through, and can identify if not fully understand their areas of needs and their particular problems. But I can't state that every time I moan about something to do with the severity of ds1's needs.

Imagine "I'm so upset that ds1 will never speak (but I totally understand that it must be very hard work to have a child who doesn't ever stop to ask questions). I'm fed up of people staring at ds1 (but I know it must be really hard if your child doesn't stand out so much so people don't realise anything is up)" and so on and so forth. I kind of assume that people will realise the bits in brackets- or realise that their not being addressed because they're not relevant to that particular conversation.

I think SN has to be a support group for it's members. It's up to the individual to decide whether they feel comfortable posting on here or not. There have been RL support groups I've gone to once and never returned because they were clearly not aimed at children like ds1. It doesn't mean there was anything wrong with the support group- just that it wasn't what we were looking for.

"ever stop asking" I mean.

It may be of interest to read the chronic health thread in health. I think one of the problems might be that the term special needs (or any term that ends in needs) is not used as broadly till children start school. Yet what ever term used we do have some common ground. And some parents have experience or knowledge in several camps, so there is sense in not deviding to excess.
One of my earliest posts of MN was before I ventured into SN. Some of the competitive thoughless comments (you know the sort of thing can't do x at 6 - mine could at 6months) almost put me off MN. Fortunately kinder folk rescued me with the facts I needed (thanks), and I was directed here. This board (and the quieter sen) have been really informative and supportive in a world with very little elswhere.
There were a couple of threads a while back when I wondered (momentarily!) if I should post on here (JH thread was one of them) but that was more due to the Trolls and the batch of namechanges (I'm easily confused)!

Oops crossed post!