to think mn has become very anti sn

[2shoes]

I have noticed it in the last few days, people getting a bashing.
nasty vile threads....

Why 'should' you have

When people talk to me, they help me, I need talking as I'm not dealing with it well

But if people don't, I don't think any worse of them - it's not something they want to or able to discuss or add to. That's all

Same as I ignore bottle/breast, & football because nothing I say would add

Or maybe the way I ignore miscarriage because I don't deal well with the issue

silverfrog I have been neglecting my farm (and my zoo) too I am afraid! if only it made me more productive in day to day life instead of making my lurk more on MN...

I did think I hadn't seen you on FB at all for ages, glad it is just internet stuff and not life hassle keeping you away.

Anyway I will take the comments on board and if I find myself on a SN thread with a commiseration or a congratulation in my head I will try to remember to post it

b ecause I wish I had, the same way I Wish I had posted on the thread I mentioned earlier.

one of the best(or worst) things that ever happened to me on mn was the day my dad died.
kerrymumbles started a thread, people just posted, I came back to this wonderful thread full of kindness(fb was the same) and it helped, even though no one could actually do anything.

sorry wanted to say something positive about mn, as it has been there for me iynwim

desertgirl do you have farm town........omg I am addicted

desertgirl

'And you lot are quite fierce!'

LOL. If only you know how close we are on a daily basis to crumbling into a pile of self-pity and hopelessness. Not so much about the disability, although we have our moments there too, but just the shite that comes with it.

We LOVE people like you, honestly we do. We're not fierce, but perhaps a bit guarded and defensive as life has taught us to be.

Claw

' dont want to teach anyone, but the likes of Soupdragon are not asking us to educate them, they are educating themselves by reading. Its the people who feel they are entitled to be educated at our expense, as if we owe them an explanation or justification that get on my nerves. '

Agree totally.

WRT to the lurkers posting. I'd love them too yes, but they have to regulate their own actions and feelings like the rest of us. I'd like them to know that I'd LOVE their contributions but not to feel obliged or guilty for reading without doing. It isn't going to hurt us as how would we ever know they were reading without posting. I certainly don't post on every thread I read (although it seems like it lol).

desert girl.now I know who you are

I don't think of SNs as some freak show - I see thread titles and often don't see what topic they're in. Then I read the thread and feel I can't post. I think its because I remember the huge debate that went on when the SN topic was hidden and feel unqualified. I've typed something twice on this thread and have deleted it because I don't want to say something that's bound to come out wrong.

SD, please don't feel unqualified. I remember the huge rows too, but they were a product of everyone piling on, AIBU style, without actually considering some of the implications of SN.

The fact you have chosen to opt in to SN means you are already open minded enough to pause before you post.

As for saying things wrong, add a

the more people who join in on the sn topic the more people become part of the sn community, the better chance we have of winning against the bigots and haters imo.

I would like to just say for the record that I have never posted anything anti SN and I am not in any way anti SN. I would ask that Star withdraws her earlier comment and actually looks at my posts. WRT to the thread that I believe she is referring to not one of my posts is anti SN it is anti people having children willy nilly. In fact I explicitly state that one of my reasons for feeling we shouldn't support people to have unlimited children is that there is a limited pot of money and I would rather it went to those with greatest need i.e carers and those with SN.

Um... OK, but please take this in the positive way in which it is meant!

I'm hesitant to say this, and I've deleted it several times, but think that one of the biggest things I've learnt (this may come out wrong) is that your children are just that : children. They may have difficulties doing X, Y or Z but they are just children. Having grown up in a time where children with SNs were hidden away and there was pretty much no inclusion, this is a big change in perspective. I mean it's blindingly obvious really but it's not something I'd ever really thought of before. The SmallDragons will grow up with this being a non-issue as, for a mainstream school, there are a good number of children with various SNs at their school and amongst their friends.

That is exactly what I want dd to be seen as, SD. She is just a little girl (albeit with some big issues at times)

And tbh, at times it can be hard to separate put whether the issues we have are ASD or 5 year old. That is when someone else saying "hmmm, sound awfully like brattish 5 yr old girls" would he really helpful - keeps it in perspective

nail on the head(ignoring the poster having a pop at someone, that is not what I mean)
dd is 15 so a lot of the stuff she does is cos she is 15.
so sometimes I need to be reminded of that. and imo it is nice to be reminded iynwim

I can really identify with that, DD is 3.8 and is really playing me up at the moment and is quite sullen and sulky and a bit of a madam, which I do hear of from parents of NT 3 year olds...!

Ummm...Londoneone...while I may, in your opinion, be 'having children willy nilly'...it is PRECISELY because of my disability that I am having another child, as the medicine for my disability caused my implant to fail, and the condom we were using as a back up didn't work. I have a disability. As do two of my 3 current children. So as a carer AND a person with a disability, theoretically, in your opinion, I need help to support me.

However, because I had 3 children BEFORE I got into the situation where any of these disabilities were diagnosed, I am then suddenly not worthy of getting any support once those things did get diagnosed (my epilepsy, all my DD's disabilities AND then finally, last but not least, my DS2's disabilities).

YES I have fallen pregnant despite being in this situation, but my partner works just as hard in his job that he earns £16,000 a year in as someone who earns £40,000 or £100,000 a year does. In fact he probably works harder because he is in a very manual job, and I highly doubt that anyone earning £40,000 pa or more is in a manual job. And neither of us see abortion as morally acceptable. We should not be forced to make that choice simply because his tightwad bosses, who probably ARE earning £100,000pa will not pay him a decent wage.

I did not chose to be classed as 'virtually unemployable', that little gem came from a disability advisor at the jobcentre who told me that he would find it easier to place me in employment if I was suffering from downs syndrome than uncontrolled epilepsy, as I am no longer covered by an employers liability insurance.

I did not ask for my DD to be born with mild to moderate hearing loss in one ear and moderate to severe hearing loss in the other. I did not ask for her to have a heart problem that will require open heart surgery when she is 16. I did not ask for her to be on the autistic spectrum. I did not ask for her to develop epilepsy. I did not ask for her to have global development delay or learning difficulties. I did not ask for a 12 year old child that still suffers from enuresis, when there is no clinic in my PCT to help her. I did not ask for her to have hypermobility syndrome. Yet despite all this, I do not claim DLA for her as I receive the grand sum of £285 for myself.

I did not ask for my DS2 to have chronic asthma to the point where I've nearly lost him 3 times. I did not ask for him to have severe hypermobility syndrome to the point where he was unable to walk or talk before the age of 3 years old and even now where his joints can dislocate when he does something as simple as opening a door handle. I did not ask for him to have global development delay.

I have however been blessed also with my DS1 who is very academically ahead for his age, and does not have any real health issues.

So, Londoneone, do you have the right to tell me that I should kill my baby because you do not wish to support me? Before my diagnosis of epilepsy, I was a higher rate taxpayer. So sue me for wondering why my partner really does work for such a pittance. I have number crunched a lot in the days since that thread, and I have worked out that right now our family is £9,000 a year WORSE off because my DP is working, than we would be if he left his job. Yet he still works. And pays tax. At 20% like lots of other people.

And to everyone else...sorry for my absolutely massive enormous post that reads like war and peace lol.

imo bit bad form to follow someone on here to have a pop

Loudlass (sorry late to this) that sounds an absolute nightmare. So many things to happen to one person; sometimes things seem so incredibly unfair.

Do your epilepsy meds increase the baby's risk of various issues as well? The first time I got pregnant (contraceptive failure.... but sadly had a MC at about 10 weeks) I was on valproates for the epilepsy (ghastly things) and the risk of spina bifida etc therefore greatly increased. It really started feeling as though the drugs were more of a liability than the epilepsy itself (though that is clearly a nonsense!)

In response to OP, yes I agree and I hate the 'piss off over to SN' attitude you can come across too.

What I don't get is the general attitude that if you have a child with SN 'well then everything's different then, - usual civility is excepted'.

Ie. Am I being unreasonable for not being able to get a seat in the cinema that I paid tickets for. Answer no. Oh you have a child with a disability, oh well, that's different then, you SHOULD be allowed a seat but it is understandable that you didn't get one'

Not a very good example, - but I'm fed up with responses being one thing until they find out that your child has SN, then all of a sudden 'oh well that's different'!

It's the same attitude prevelant in Education. We should strive to ensure that all children thrive and reach their full potential, unless you have SN, they we should strive to provide just an 'adequate' education. Coz they're different innit, so usual rules of society don't apply.

Getting back to 2shoes' questions about people lurking and not posting...

I lurked on SN boards for a couple of years without posting because I had a feeling that something was not-quite-right with DS. But I was too shy to post, and I wasn't sure whether I was imagining it.

But if I hadn't lurked and read, then I would have been completely shocked when DSs teachers came to DH and I and suggested he may have Aspergers.

Now that he has a DX I have felt more comfortable about posting (and have had some fantastic help)... but I am still shy, and tend not to post unless I think I can add something useful to the discussion.

potoroo Do you think we're fierce?

A lot of us use this board as an outlet for our frustration but we also spend a lot of time crying at home. I just wonder if the board looks more scary than it is!?

No not fierce Very supportive I think. But I felt that it would be intruding to ask questions when DS seemed otherwise NT ...

But perhaps that is just my personality - I am quite shy with people I don't know.

I also think people who don't have kids with SN just don't understand the day-to-day practicalities, and how parents have to argue all the time to get their children's needs met. I naively assumed that once we had a DX then all the services would fall into place and life would carry on much as normal. Much the same way as I had no idea what life would be like before I had children ;)

Sort of reminds of a thread I was on some years ago about terrible T-shirt slogans. I commented that I had seen a teenager with a T-shirt saying "I am not badly behaved, I have autism." I thought that was terrible because I assumed it was someone making fun of autism. Another poster (pagwatch I think, and others) told me (very nicely) that it was likely to be genuine, as it was easier than having to explain their behaviour to other people. (Luckily I took this on board and didn't jump in with "but he looked so normal"). It had just never occurred to me that other people would notice/judge/care.

Of course now that I have a child with DS, I understand only too well...

Child with ASD I mean...