rhino skin required??

[chonky]

I'm really struggling as to how to relate to parents with NT kids at the moment.

On Thursday, we went for dd's six month review & it turns out that we're now being referred on for another opinion. Whilst that is brilliant in terms of we can be sure that dd is getting the benefit of loads of expertise, my heart sunk at the prospect of more interviews, tests etc. I guess I'm still feeling a bit low because of that.

Then on Friday I was chatting to a friend & describing how dd is very unsettled (I think as a result of all not being well neurologically) and this mum said 'Oh, my 18 month old dd is just like that at the moment, I think it's just a phase that they go through....' I responded by saying that in the case of dd it's a six month 'phase' with no light at the end of the tunnel at present.

Then on Sat I was out with the same mum and some of her friends. As soon as the evening started I thought 'oh no' as the bragging about what their kids had achieved at nursery started and I ended up blubbing. The friend then said 'is it because all of our kids are.........?'. Fortunately she stopped short of saying normal. She also said that the women could sympathise but not empathise. I disagreed with this, I don't want people to pity us, not for a minute, but perhaps would like people to try & empathise as to how we feel sometimes.

Having just moved to a new town I feel it's really important to try & make new friends, but I'm finding it so tough as I just feel hypersensitive all the time. I have a positively gorgeous dd, who I love to bits, and yet as soon as I meet up with mums like the above I find that all of her lack of milestones just get highlighted (unintentionally of course).

Sorry, this is a long mopey thread, but I could really do with some advice on how to toughen my skin. I know the comments are insensitive because I choose to interpret them as such, but I can't help feeling in one sense I'm being told that she's exactly like other babes & I shouldn't highlight her as being any different (or suggest that I'm finding it tough!!), the next moment I'm being told that she's not part of the group, she's different.

No agree, inappropriate advert!!! When dd utters her first real word I will take out a TV advert, not buy a bloody camcorder.
Maddiemo- can't believe balloon anecdote.
Chonky- I do actually avoid most NT situations- my closest friends have kids with SN. If I'm in them with ds (seemingly NT) I tend to have a HUGE CHIP ON MY SHOULDER if anybody says anything about him having 'advanced' language or anything and RANT ON AND ON ABOUT DD and that's why he's picked signs up etc. Really, it's embarrassing...

Dingle - when I said I think your skin gets thicker over time I wasn't suggesting that situations like this don't hit a raw point but, well, for me at least, I no longer feel like crying. I just feel pissed off. Or I just switch off and decide I can't even be bothered to be a part of it. A bit like TC and JakB were describing about being at kids parties.

I asked because I really did have that conversation; I think I asked "What can she sign?", and when I was told the answer I reflected on how that compared to my own DD -- who is 3 weeks younger. I felt like it was ok to compare because the other child (the SN one) has a rare chromosone defect and nobody (not the mother, not anybody) really knew what to expect of her. But I could tell I had said "the wrong thing".

I know where you are all coming from seriously. I have had to develop a think skin as some people can be so bl**dy ignorant and rude about dd.
I was talking to my dad's "friend the other day as he is a financial advisor and deals with our mortgage, pension etc. We were talking in general and he suddenly said "How's your daughter by the way? She's backward isn't she????". FFS She is one of the cleverest in her class. Her IQ is way above average but people still make assumptions about her. She has been called "simple" and "not quite the full ticket"
I am sick of having to justify my dd's special needs and therefore don't. If people want to be ignorant that is up to them. One thing I do know is that the world is a better place for having dd in it and I mean that sincerely (sorry to go all gushy

I've come back to this because I can't stop thinking about it. I guess as a parent of two NT children I do take a lot of stuff for granted: that's yet another good thing about Mumsnet - it makes me think about a lot of things I probably wouldn't have considered before. Though God help me I would never have said some of the things you've all encountered: how do you not punch these idiots on the nose?

Just feeling sad at what some of you have to contend with

Zebra - I can't see anything wrong with you asking 'what can you DD sign' and the 2 of you having a conversation about what your kidsw are up to. But that's it, it's what they are up to and no more, no-one's child is more advanced than the other, doing better than the other one and so on. It's never plesant to compare, and also no point in it, ESP between a NT and a SN young child. I sometimes do it in my own head - think, blimey look at what a NT child is doing at this age, but I keep it to myself, it's just a passing thought that crosses my mind and it doesn't worry or bother me.

The fact is it's always going to be hard for a mother with a child who has SN not to have their heart squeezed now and then when they are around NT children and it will remain a fact of life that an innocent comment will feel like a knife sometimes. It's just nice when other people can appreciate that as your child has SN that some topics are going to be a bit difficult sometimes.

Oh blossom, FFS. That woman was bloody backward in her thinking. Jesus Christ!

Marthamoo, you're so lovely!

My son's diagnosed delays (speech and language and developmental) are very much hidden from most of the general adult populace. A couple of the mum's in my son's year one class know DS has a statement (infact one of the mum's in his class has a nephew with developmental delay so can talk to her more about her nephew).

However, if some adults cannot or will not accept my son for what he is then tough titties to them!!!. Their loss - these people need to get over it and young children need to realise that not everyone is born without any disabilities. This sort of education must start early in my view.

The problems that I have experienced with regards to my son (feelings on diagnoses, getting a statement, unhelpful ed pysch who got subsequently replaced) pale in comparison to what my friend's mother and her autistic son have been through during his time in this m/s school. Now they want him excluded permanently.

I can only recall one crass comment but it is one that I will not forget anytime soon (this was from his reception school teacher of all people, someone who should really know better):-

"I can see traces of Aspergers syndrome in your son".

This woman knows NOTHING about AS and I doubt very much if she has ever come across any child with AS.

Marthamoo,

I would echo Thomcat's comments!.

(((((((((hugs)))))))))))) to you and yours

808state - you should have replied 'well I can see more than a trace of a prat in you'!!!!!!

Not too sure where to start as I'm sure I'll start rambling. Felt better for a walk in the park, a good old yack with the community nurse & some alcohol in my bloodstream.

Firstly, I feel bad in a way as I think the friend in question would probably be mortified if I spelt it out how it made me feel. I'll let the proverbial dust settle & then I'll try to explain, perhaps when my hormones have settled/ I've had a drink/ I'm a bit more rational!

It does help to know I'm not alone in this. I expect once I've established a network locally of mums with SN kids then I'll feel better about tackling groups of mums with NT kids. We are lucky to have some close friends with NT kids who make all the right noises, unfortunately they're not local, some live in S/E Asia, others in Belgium & the rest dotted about the UK. I have one good mate who used to work with kids with learning disabilities, and she is very good at giving me a reality check in the nicest possible way. I blubbed to her recently that dd has vision probs, motor probs & poss. learning difficulties & she quickly came back with the response 'Chonky, you don't know that all of them will be severe problems longterm'. They may well be, but it stopped me being a drama queen, or at least for a few days

I do think I will end up leaning towards mummas with SN kids, but hopefully not to the extent that I cut out all other mums. Some mums might not be in my shoes exactly but still have a lot to offer, some have been really wonderful in supporting us (just wish they were local). In the meantime I'll work on the bollocks approach as suggested by TC, and try to avoid NCT-esque groups.

Hi suzywong - sorry to have been c**p in saying hi, we've just moved house this week so I'm still wading through boxes. Will drop you a line with a photie of dd Hope all is well in your new pad.

Ditto on TC's comment, and yep, marthamoo you're great (wish I was faster at typing)

Awww, thankyou (I was worried I might come across as patronising) but I'm not the great one: you all are (what excellent grammar that was).

(((HUGS))) to you all and your extra-special babies xxx

I reckon your thick skin grows when they're around 6-7 years old, give or take. This stuff doesn't bother me a bit any more (DS is 9) although I can get very upset over things to do with him but more school-related, our day-to-day life issues etc. Most of my regular friends are parents of children with SN, but not all, and these are people I now consider "proper" friends who I would be friends with anyway. Although we do talk about our children's difficulties we are very, very able to talk about other things. We also laugh about our situations a lot and I actually think that we are not particularly good for other parents who are closer to diagnosis. I think we can be an alarming bunch and rather too realistic for the novice!

Another thing to consider is that many parents of children with SN/disability are also parents of NT children. THerefore they can mix and match in both communities but I've had some pretty insensitive comments from parents of Sn kids who also have NT kids kids when I only had DS I think being the parent of ONLY a child with SN/disability is a totally different experience to those who have both.

I don't generally mix much with parents of NT 9 year olds although I do with parents of NT 19 month olds because of DD and I also have friends from work, school etc and relatives...... I haven't ever really had upsetting comments from people other than strangers.

I agree with Davros about having nt as well as sn children. Although there are obviously limits on our daily lives, things do not revolve around ds's needs in the way that they would if he was the only one. We still get to see the 'other side' of parenting, all the mundane stuff that other people take for granted, as well as the fun stuff that we may never have with ds. I suppose it also means we are accepted as a 'normal' family in others' eyes.

I wouldn't exactly say I have a thick skin yet as sometimes things can pull me up short (such as waiting outside a ride at chessington for dh and dd with ds in his major buggy and watching all the little boys his age come out with such excitement on their faces)and it is a physical pain. BUT, I refuse to let the comments of ignorant people upset me because I am proud of my son. Despite his problems his sweet nature shines through which is more than can be said for certain nt children I know!

Sometimes I cheer myself up by thinking that in ten years time those smug parents will be worrying about drink, drugs and joyriding!!

Glad to hear the skin gets thicker . You always make such intelligent comments, Davros. I may become your new mumsnet stalker... . Agree, it has become more 'balanced' since having NT child. Read something once by a mum who has two sons with complex disabilities who said it was unusual to have both feet in the SN camp, parents usually had one foot in and one foot out...

LOL pixel!

got to say i agree with davros, the skin does get thiocker as they get older. cant say I always ignore insensitive comments but I dont let it upset me like i used to do

Chonky, I've been wondering about you since you posted on our April thread. I feel sad that you are struggling to relate to some mummies
I don't like the bragging some Mothers do about their childrens development either. Not for any other reason than, why should I be impressed by their babies? Dd impresses me all the time just because she is dd
Why can't some mpeople appreciate children for the individuals they are?
Maybe I am not making sense here but the fact that you haven't posted on our thread saddens me and I don't really know why.