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.

I don't think people think that though TC. I don't for sure. However I get cross when someone with a HF child says to me (as they have) 'why should your child go to special school and have thousands spent on their education when they're never going to live in the real world, My son (with AS) can't get a specialist education and he needs it more than your son'. For me- I'm quite prepared to agree that educaitonal provision for those with AS is often far from ideal, sometimes diabolical, but I don't think their needs are more worthy that my own son's. They're just different.

The poster complaining about ADD/dyslexia was at the receiving end of insensitive comments (rather like the woman telling me my son's education wasn't wrth as much as her sons).

at that attitude. It's just buying into the way things operate at the moment re:rationing SALT etc. I have never thought for a moment - they should close special schools or in anyway deprive lower functioning children of services - it's fundamental - all children should get the support etc they need to make the most of their abilities.

time4me,

Sorry, I misunderstood what you were saying.

Yurt1,

Thanks for explaining my misunderstanding. In re reading what was said in light of what you have said I can see what the poster was getting at.

As I said, though I didn't particularly like the other comment I understood where the poster was coming from and had sympathy with them.

No I didn't take offence to what you said concerning NAS as I knew you were not expressing your own feelings.

I don't get upset about much, but parents dismissing the problems of others as 'trivial' or whatever is one of them. I accept though that I did misunderstand time4me.

TotalChaos,

Feeling out of place is something I'm used to. I was in a special needs school for most of the 60's and half the 70's. Hopefully attitudes have begun to change since then, though from reading some comments maybe not.

At one of the earliest workshops I attended for parents with asperger children I was told by one parent that I had no right to be there. So was put in my place early on.

I guess just as the needs are different what we go through can vary a great deal, but it does annoy me when parents belittle what other parents go through. I admit I misunderstood the post, and regret making the post now.

I have come across people who have expressed the kind of opinions Yurt mentions. My replies to people like this can be very acidic.

Yes I have been impressed over all with the encouragement and advice generally given here.

I think the NAS is cocking up big time at the moment though. My friend attended a course today and has just phoned me for a rant. It was all about how autism is a 'gift', how lots of university professors have autism, how it leads to great academic success. I would say all those stereotypes are often untrue of people who are high functioning, and completely irrelevant for someone with a severely autistic child. I've told her she should complain- the NAS shouldn't have courses run in its name that are that out of touch.

It also doesn't address any difficulties a person with HFA or Aspergers may have. I did quite well academically, but I have very poor self help skills/practical living skills. There are some aspects about my being Aspergers that I like (my ability to read very quickly, my ability to focus on something being two examples) and some I am not fond of (delayed or non existent reactions to things, lot of difficulties initiating talking being two other examples). For me, personally, it is a balance and I can see that balance in Ds1. He has an excellent memory but struggles with communication. He loves hugs and kisses, but has no awareness of danger in that he'll approach anybody.
I do agree that more films need to be done to take into account the lives of people who are classed as low functioning, to raise greater awareness. If people's whole impression of the autistic spectrum is someone like myself, then that creates a wholly wrong impression. Whilst I subscribe to the "it's not all bad" philosophy, I object to people i nthat camp who say that an autistic person is an autistic person is an autistic person. There are invididual differences in abilities and sensory issues and perceptual issues. It doesn't mean that I think I am superior to a person who is classed as severely autistic, but that I cannot claim the difficulties I face are the same as they face.
If I've upset or belittled anyone I'm sorry, I'm just talking about my personal experience.

I agree with what you've written bullet. I'm shocked a course run today by the NAS would say such ridiculous things. I think my friend was the only one there with a severely autistic child, but she said the other parents didn't look as if they were living with a 'gift', they looked worn out and battered. She said there was no recognition of educational battles etc etc.

TBH in my son's case his autism is some ways the least of his problems- but he has lots of co-morbids that prevent him accessing even things he would enjoy. I can't see it as a gift when it prevents him doing even the most basic stuff.

Donna Williams writes so well on this topic. The difference between autism 'culture' and autism 'condition'.

here for example

this is interesting too For you too needmorecoffee- about LD's and IQ tests.

Hi Yurt I liked your reply.I think you were spot on.Everybody is different.I think I am entitled to feel sorry for myself and anyone else with a profoundly disabled child,but no-one likes someone full of self-pity .However its the ones who just have a child with mild sn or even for heavens sake gifted who sometimes feel badly done by,and that really makes me angry.

dgeorgia,by the way I think you are a real star taking on the Headteacher etc about the displays.Sorry if upset you,absolutely not intended

In ds2's very small village primary there are 5 children all with varying degrees of sn (asd,ds,cp,gdd)
The one thing all have in common is the same battles to access the correct support, education & services on whatever level.
For example our HA won't allow a child with DS to attend the CDC to be assessed for ASD, because they don't meet the criteria.
While the health authorities, LEAS & even charities apply such strict criteria when trying to dx & allocate services parents are forced in to a competition to prove that their child ticks enough of the boxes to access services & support.

Sorry if going off topic, but the thing that pisses me off more than anything is how the battle to get the basic things our children really need turns them in to nothing more than a pile of reports & diagnostic labels.

it is the system that creates isolation & division much more than our childrens sn.

Time4me,

You have no need to apollogise, you did not upset me, I did by reading more into what you wrote then what you actually said.

I did post an apology but tried to email you a personal one for the attack on you in my post. I figured I would wait for your reply and was prepared to eat a lot of humble pie.

Your reply to me speaks volumes of a true Lady with dignity, self respect and a very caring heart. For what it is worth you have my full respect.

In friendship

George.

I think sometimes what time4me is describing is a case of 'wrong audience'. Other people's problems are valid- but you're not always the right audience to listen to them. I remind myself when I feel myself getting angry at someone's insensitivity.

I suppose it's like someone having a miserable but straightforward pregnancy - I moaned and groaned my way through all 3 of mine. Which was fine- but had I moaned and groaned and complained to someone having difficulty ttc or undergoing IVF or something that person would have been well within their rights to be very upset by me.

George that was lovely thanks so much.
Yurt,I agree with you,tbh I worked with sn children and families for years before my ds.I was a sn Teacher in a sn school.
Then I felt terrible because I realised that I thought I had empathy but I didnt. I told a mum at parents evening(years before I had my son) that her son was naughty,and she was upset,and wrote me a letter saying that my comment had really hurt her.The point is that he had come through meningitis to be left blind and hyperactive.If I had been that Teacher now I would have said so many wonderful things to her,as she must have been grieving and to be told that,well she needed it like a hole in the head.I so wish I could turn back the clock. But after I had my son,after he had a brain haemorrhage and was left profoundly disabled,hearing mums talk about nt kids with slightproblems,which were resolvable ( such as a clicking hip which made a new mum weep buckets because she said she felt different to everyone else,he had to wear a frog plaster) made me so mad inside. Thats the simple truth,a friend who had a profoudly disabled baby said she had deliberatly stayed away from nct groups because she found them too painful.I wish I had done the same but I was desperate to make friends,but it was a mistake because the bitterness lasted for years.Im sorry,it`s the truth. I know this might hurt any parent who had their child in a frog plaster,and I am sorry,but everything is relative.

Pipinjo,I could have written that myself.
Thank goodness for mumsnet,we are supposed to support each other and your letter was spot on.How dare that stupid woman 1:1 make such a crass remark,it would make my blood boil.Also that idiot who described her ds as having high funtioning etc.What a thoughtless woman,I hate these people.
Infact I feel sorry for them,as they are in a situation where they have no empathy,that must be very hard.I don`t blame you not going to toddler groups etc or not wanting to mix with sn parents because they can be negative and there is a difference between having a good moan ( provided your child is worse or the same) and making you feel bad.
Actually I did meet a mum who said she deliberatly avoided all mums,she had a profoundly disabled boy of 3,and she said she avoided all mums and not just sn ones to protect herself.TBH,it is making sense to me,although at the time I thought she was extreme.This is the first time I have got really mad on mumsnet,because although my son is 20 it is bringing back all the memories of the boasting nct mums,or the whining nct mums,in front of me too,my poor baby boy totally wiped out by a brain haemorrhage and they have the cheek to moan or gloat.Sorry anyone reading this,but I feel so

time4me - I am very sorry that you are finding MN is bringing back bad memories of NCT type mums, I imagine that the typical MNer and NCTer are rather similar (or should that be stereotypical ).

PipinJo - was it the lady's tone rather than the words that got to you? Or did you feel that saying her son had HFA rather than ASD was insulting to you? Just I imagine that DS once he ever does get diagnosed would get an HFA diagnosis, so I wouldn't want to piss people off at any courses etc by saying the one thing.

ROFL TotalChaos - and I do know what you mean time4me

I know what PipinJo means- sometimes people get very very repetitive about the 'oh but he's so intelligent' (as if low communicating children are vegetables). I think it tends to happen around the time of diagnosis - when people are in shock and they probably don't realise that in making themselves feel better they're actually making a whole section of the room feel worse. It is a problem with ASD support groups in particular I think, but (as someone vaguley involved in the running of one) I'm not sure how to organise one to make the dynamics better- I can only think of making it big, so that there are enough people to break into smaller groups within a room so it becomes relevant and helpful (rather than dperessing) for everyone.

Thanks for the clarification Yurt, it's a pity that even support groups can be a minefield, I think you are right that it's best for the groups to be so big that people should hopefully find a few parents they can relate to. I take your point re:comment about intelligence. I promise that I didn't make any comments about DS being bright etc at the support group I was moaning about .

It's the big 'one conversation round a table' that's a problem I think.I don't know, it's hard when problems are so diverse.

also as well at such an early stage with DS - I just don't know what the future holds - and how much progress he will make - just because he may seem high functioning at 3, realistically doesn't guarantee that will always be the case.