why do I feel so angry?

[manc1]

My daughter was born last march and has cp, I joined an nct group for support as I have no family and my husband works long hours. The group are organising a joint birthday party and cannot stop emailing about how excited etc they are. None of their children have special needs and are constantly talking about crawling and walking and talking, I don't want to get involved with this party at all but also don't want to lose what support I have, I feel selfish coz I'm the only one not going but don't they understand how hard it is for me having the only child who's not even sitting up, my daughter had a fit on Xmas Eve and was hospitalised until the day after boxing day and when I mentioned it I got a "what a shame" email back from a few of them but secretly I feel they are just glad it's not there child who was there. On a plus my daughter is an absolute joy to be around and has not given me any hassle at all, I want to part company with this group but am frightened to have no friends and I do get on well with all of them. this whole situation just seems to make me angry and whenever we meet I try to make light of my daughters situation as I don't want them to think I'm full of self pity.

PipinJo - I have one of those high functioning children, that is one reason why I don't post much, it has its own problems but v insignificant compared to many people who post here.

TC - I remember breaking down in tears when DS was nearly 3 and barely talking, and saying "what's going to become of our boy". The things I knew he could do, then, like the early reading and the numbers, I wasn't sure whether it was a savant thing and he had no real understanding. It's becoming clearer that he does, and I still don't know what will become of him but I feel much more optimistic now. In a way it was strangely liberating getting rid of all the "normal" child development books.

thanks for the explanation PipinJo, I was worried that just uttering the words HFA would be seen as insulting those whose kids weren't. But that accountant comment was hideously inappropriate in the circumstances , I would just be happy if I felt DS could manage to live and work independently at any job whatsoever that he enjoyed.

Is it ABA that you do with your son then Pipin? DS (3.10) can do numbers, and is just starting to learn letters, so I think that is a fairly average age to be managing that.

Hello yes maybe there is a lot of similarity here between nct and mumsnetters but I still really value mumsnet.
My son does not have autism but the theme is the same,tactless remarks from stupid people who should just step back and take a look at themselves.

manc1 - I felt totally alienated by pre-school stage - it seems really difficult to find friendly groups where the parents aren't playing the "my child is worse/better than yours" game.
There are all the familiar issues on here, and don't they make you cry? I'm so glad to have found one place where people don't seem afraid to offer up their problems for support.
My DS is 'only' Asperger's plus a few extras - but trying to help him be happy has caused so much heartache on the way - loss of my 'friends', lack of understanding from family, school and LA.
If I dare to put a problem on here, it's because it's making my life difficult to handle at that moment - I do appreciate that many people's problems are so much greater than mine!
(And yes, the NAS is in a mess - I've left - can't cope with the political in-fighting.)

FWIW I think I isolated myself when my DS2 wassmaller because I could not bear people with 'ordinary' kids and i couldn't really cope withthe parents of children like mine because , frankly, we were all out of our minds with grief and really not very good company .

Life has become easier as I have got a grip on my own grief and allowed myself to recognise that other people really just don't get it. Its not their fault, they just can't. That knowledge seems to make me less angry than I used to be.
I don't feel the need to exlain my Charlie anymore. I don't try and 'help' people understand and i don't have any need to justify him when we are out. If he is humming or acting oddly and someone has a problem with that then now it genuinely is their problem.
it has taken me about 8 years to get here.

things still make me mad. A woman on another thread told a mother who was worried about her childs very delayed speech that she should 'enjoy the silence'. That really threw me - I just remembered all the years that we tried so hard to help him make himself understood and how upset he would be and how hard it is when they can't even tell you that they want a drink or their head hurts. I questioned what she said only to be told to ' fgs get over it'.

I guess there will always be people who don't care and intend to be offensive but mostly i think people just want to shut their eyes and deal with their own problems.

My friends now are all quite noticably people who i have met and befriended in the last few years , since we all have developed a much greater happiness at home - just as we are.
I think perhaps it does get easier over time. Now there's a sweeping generalisation

Yes- I think the NAS seriously misjudged it's recent campaign regarding autism being some sort of gift "so and so is 21 and chooses not to talk' FFS!

They need to employ Donna Williams to explain the difference between culture and condition (a better division perhaps than high versus low functioning).

Pagwatch- I agree it takes years- I'm aware that almost 7 years after diagnosis in the last few months I've felt very differently about everything, about ds1's life etc. It's taken a long time.

Looking at it in a totally different way

I remember reading a book a long time ago about a woman in a nazi concentration camp and she remarked to her fellow prisoners that it's incredible that there are people in the world who are seriously upset because their coffee does not taste right or because a lover has not sent them a letter. They all discussed the question and came to the conclusion that, that is just life and for better or worse, the trivial and the devastating are inextricably woven together.

There is a great book called 'Send in the Idiots' by a very high functioning ASD author and he describes how he learned to have conversations with normal people. He said that he realised that conversation is meant to be an exchange of superficial remarks and cliches not an attempt to establish anything of lasting truth or value.

Sorry to repeat anything that's already been said, but I haven't read all the replies. If you contact your local SN School they might point you in the right direction. The one I work at has M & T coffee mornings and one is especially for babies. Not all the children join us at school age, but any child with SN is welcome.

yeah moira I agree- it's just a case of people having the sensitivity to pick the 'right audience'. A friend yesterday apologised for going on about something trivial with her ds (actually not that trivial- secondary schools - but he's the exact same age as ds1). I told her not to be daft, that I love her because she's always been totally honest and open with me wrt ds1. I would hope that for her, I could be an audience for anything iyswim, for other I would prefer some sensitivity

Well, I'm astounded by the conversations my original post has started, some really supportive and useful comments. This was my first post by the way and now I know what mumsnet is all about. Have emailed the nct girls and just said wanted to celebrate on our own and it had been a difficult time, had some emails back and two of the girls got in touch independantly to offer support (these are the ones I will probably stay in touch with).
I think whoever said that we are grieving is spot on and it made me cry as it SO hit home, a neurologist at the hospital said once, "you've just got to face facts you're not going to have the child you thought you were and that's the biggest fact to understand, once you accept that you can start to move forward", I don't think all of a sudden you have a realisation but I think you begin to get used to the way your life is, (a bit like when you 1st have a baby whether sn or not).
I don't feel so angry anymore knowing that I'm not on my own with this and would love to meet up with the girls posting earlier but my name is a white lie as I live in Wales not manchester and haven't done for many years but am very proud of being a mancunian.

Lovely to see you posting again, was worried that we'ld scared you off . Glad that you opened up and found some sensitive responses. I'm a former manc too - only down the road in Liverpool now. You North Wales?

Give yourself time manc1. We've been living with ds1's dx for 6 years now (he's 8) and its only in the last few months that I feel like I've almost come to terms with it iyswim.

G;ad a couple of the NCT girls got in touch. If they've done that they sound like good eggs and will probably continue to be supportive.

Sorry totalchaos am living in South Wales, and after shouting my head off at my husband and having a good cry I feel like getting on with things