nightmare social occasions

[jmb1964]

We've just returned from lunch with friends who live in the country. The whole outing was arranged so that ds 1 (nearly 6, Aspergers) could see an old friend of his from nursery (and I get on well with the Mum too). Unfortunately ds1 and Sam fell out as soon as we got there, and there was a lot of hitting, kicking, etc. I wanted to turn round and come home, but dd1 and our two younger ones were having a nice time with Sam's younger brother, and they hadn't done anything wrong. So we stayed - Sam's parents were fine about it, but his grandparents were clearly thinking I should be handling things differently. Ds1 got so worked up, his asthma and eczema flared up (or perhaps it was hayfever), and he scratched madly all the way home.
Should I just GIVE UP trying to do things like this at all? Maybe ds1 just can't do socialising with 'normal' children, but what does that mean for the rest of the family?

all kids are worthy.
all kids are special.

except when they're dishing out compensation.

I'm slighlty unsure about posting this but...

Jimjmas and others I can sympathise with a lot of what you say, but when you say you can't stand NT parents bragging about their problems because they' re actually having it easy compared to you, I think you're being a bit unfair.

You can't compare people's problems, everyone reacts in a different way to the same situation...take a simple things like flying for the first time: some people are excited and curious about it, others are simply terrified, yet it's the same thing. Dh used to endure training sessions of 2 hours a day and be absolutely pathetic about a headache, I'm breathless after a couple of yards, yet I get dozens of colds every year without saying a word, just as our painthresholds are different (and I think they increase with exposure) so are our problemthresholds!

Whenever I complain about my unruly toddler a friend of mine always goes that I should have her son for a day, and the my dd is an angel compared to him, this always winds me up, because I don't have her ds, I don't know what it is like with him, but I genuinely find it difficult with dd and having someone playing down my difficulties doesn't make me feel better! And while I can imagine a SN child will pose you greater problems and challenges(objectively), it's the way you approach the problems that makes them more or less difficult to each of us.

All i want to say is, don't be so hard on us please, we only know how to (just about) cope with our set of problems, we don't know any worse....we're lucky, but that doesn't mean we can't complain about our own small bits of misfortune.

And I don't see eczema! !!
I see kids with DS all the bloody time now though, the little blighters seem to be everywhere since I had Lottie!! That and everyone I meet who knows about Lottie tells me a story of their next door neighbours brother's cousin's wife who knew someone who had DS!!

its funny how u can spot the differnces in other people that relate more to your family than anyone else. i also spot the telltale dry skin and scabs of eczema in a baby, and then the 'old lady hands' in older kids.

Well my old nan always used to say 'There's always someone wose off than you' and ther is. That's how I stop myself from feeling sorry for myself, I think of my nan and that little turism and I stop wallowing.
She also said:
It's not always easy when troubles appear
To wear a big smile that you know's not sincere
Your heart it may ache but you still still a song
It may even break but you still carry on
So if you've a problem
Don't worry, or fret
Just look on the bright side
It helps to forget
!!!!!!!!!!!!
Ok, I'm overtired and should go to bed!!!

My typing is SOOOOOOOOOOOOO bad!!!!!!!!!!!!!

it took me hours to write my post and now I have come late, most of my queries had been addressed already...slow mum's barins and late hour

I should be in bed

yes webmum - but choose the right audience. Look I'm not saying that NT parents can't say they've had a bad day - that would be ridiculous. What I;m saying is that I can't cope with friends who ever time they talk to me moan that their child is doing their head in because he's talking too much, or whatever else. I'm not saying it's right or wrong. I'm just saying that I can't handle it- I can't cope with it- I go home and cry on dh's shoulder who then gets cross with me because every time I see this friend I come home wound up and crying and he can't understand why I continue to see them. And eventually I couldn't either so I dindn't. We were friends before autism, we weren't afterwards. They hadn't changed- I had.

so should i, dd1 is having a good run of sleeping well atm, just seems i'm not. typical isnt it!

that should have been brains, not barins!!!!

webmum, you make a good point. We are all capable of criticising others, and parenthood gives us ample opportunities. We all deal with what we've got as best we can, and friendships come and go along the way.
Jimjams - I hope you don't think I think you've been upsetting people - absolutely not! I think you are admirably honest, just saying what many people think anyway.
Mental illness? Global developmental disability? I see a difference between the two, but a depressing one because, as a doctor, I see mental illness as treatable, if not curable, whereas the pervasive developmental.. blah blah really got to me at the beginning.
Anyway, it really must be time to go to bed. Sleep well - zzzzz (hic)

Thomcat wise old lady your nan.

Actually I do think that having had ds1 I really appreciate the good things (far more so than before I knew he had problems) and am acutely aware that some people have really really shitty lives. But then that gives me even less patience with small concerns. Vicious circle really

You're right jmb - I was thinking more abut mental conditions in general. More stigma than physical.

And I just love the word disordered (hate it as much as "delightful child" and "complex needs"

Jimjams

I see what you mean now, but in your earlier posts it sounded like a general remark about most NT parents rather than about the situation itself.

Well if these friends reallya re moaning all the time about their children, I think I wouldn't want to be with them either, they sound pretty boring!!!

webmum- I think its something I'm going to have to give up explaining to be honest! I have dropped some friends becuase they can't handle the autism tbh. I do find it incredibly difficult to be round NT parents for too long, but so does every single one of my auti friends. It's a frequent discussion on the chatters list I mentioned to Davros earlier. It's just the way it is. On a day to day basis we ghettoise ourselves. There's a huge gap between us in hopes, expectations, things we can do, values. Everything fundamental between us is different. I have been lucky in that a few friendships have been able to survive that. I've also met some lovely people since who I'm just comfortable with. I just have far less patience than I used to have and things grate far more than they used to. It's not that I think these people are bad people, just that for me at the moment it is very diffcult to be with them. Maybe it means I haven't totally accepted DS1's problems yet, maybe it's just I'm very aware that these people don't understand my life at all. I don't know- all I know is it is very hard to mix with lots of NT parents. So I don't. Which was how this whole conversation started.

Look last time I tried to join a class with ds1 (this was over 2 years ago - I haven't been daft enough to try it again) I came out and sat in the car sobbing on the phone to dh- who I then left to deal with the bitch in charge of the class to try and get our money back- I had tried to find out before hand whether the class would be suitable. We had to leave a swimming class for various reasons as well. So when people start carrying on about classes their kids go to I guess it's just not something I want to be reminded of (my problem not their's obviously). When we talk about holidays friends will talk about kids clubs- we can't use them - another little grate (again my problem not theres) When we talk about starting school I know that my ds will be starting 2 weeks later and going initially for one morning a week while we wait for the statement and try to find out whether the school will be able to cope. When peope talk about what their kids said that was so funny I can't join in. And so it goes on and on. There's just no common ground. I can't talk about toilet training because all their kids were trained 2 years ago. When they talk about what their kids will do when they grow up I don;t even want to think about it! I have no wish to imagine my son grown up it terrifies the hell out of me. I don't sit there feeling sorry for myself the conversation is just irrelevant, or a little reminder. I'm more interested in talking about direct payments (deadly dull for non SN) moaning abut lack of SALT (again deadly dull for most NT's), talking about gluten free diets or techniques like ABA or son-rise- I can't talk about that to NT's becuase they don't know what they are! It's no-one's fault it's just 2 seperate worlds. I do recognise that it is me that has removed myself for the worls of NT parents and that has been my choice- it just makes my life a little bit easier at the moment.

Right bed!

I've just read through these messsages since I last posted. I can see feelings run deep.

I totally understand why you'd drop old NT friends after they have hurt you time and time again. I suppose you've tried to explain ( since they are old friends) but they just haven't taken it on board, continute to ignore your child or make their tactless comments, so yes, you get angry and then you move on.

I also see why you'd get to a stage of not bothering to explain things to every NT parent you first encounter. You form a first impression, feel the learning curve is too steep for them, and your time is too valuable to waste on them. I mean we all do that a bit. We pick and choose who we're going to engage with, especially other parents.

But what about NT parents who seem more OK? I can't believe that you really think all the new NT parents you meet have the same level of ignorance and intolerance or whatever. And some of those NT parents have direct experience of SEN adults and children. Take Rhubarb, for example. She has an NT child yet she told us she has a downs syndrome brother. Take me - I had a father with mental illness. Take someone else who works as a special needs support assistant at the local school.

I just find it sad if you don't ever put out feelers. What happens if your SEN child starts playing with some NT children at a local playground, not for a minute but say for half an hour? Or when you son starts school, jimjams, what happens if he gets friendly with an NT child? That friendship between the children, the fact they are in the same playground, live in the same area, go to the same school etc, doesn't that give you some common ground with the NT parent?

Would you not think about approaching the parents in a friendly way, striking up a conversation, seeing if there's a friendship in the making? talking to them about your child's condition? giving them some allowance for saying the wrong things to you, as long as they also said some right things too?

To me until you walk in someone else's shoes you never really get it.....

It takes a lot of effort to empathise with people and I can see where you are coming from Jimjams - m and t group was a nightmare cause people were wanting to know why dd ( 8 mths at the time) was not able to sit up .... because she can't - why isn't she crawling ( at almost 12 moths) cause she can't - .......WHY should I have to spend my life explaining it to people....

one particular mother use to get right up my nose cause she was always moaning about her daughter - she's bottom shuffling - why won't she walk, she has no hair, yadda yadda yadda.... it got so I wanted to just tell her to shut up and count her blessings..... These are the people that infuriate me.... sure people want to moan about their kids

Like the conversation other mothers had at m and t yesterday - 'Ohhhh breastfeeding for 6 months that is ridiculous - unless you want to get skinny again - comments like I just find it so inconvenient' .... from a mother who had to feed her daughter via an ng tube - that kind of conversation is all a bit silly - what can I say to them ' ohh your soo lucky you were able to have the choice'.... then I have to explain why and then it breaks into their cosy little world and I am further pushed out.

Having people stare in horror at an ng tube in your daughter when you are out and about... have a grown woman at Tescos say 'errrr what is that' and look at you disgusted.... I could not be arsed explaining to this woman why my daughter had to have an ng tube - HOWEVER i did come across a couple of women whose children had to have ng tubes who knew what it was and were able to understand what you were experiencing - although their children had to have them for different reasons...

I really think it helps to be with people who understand better ( because they have been there) or who want to understand better - rather than someone who is supposed to be a friend but sees your dd as a burden or avoids the issues or just ignores your child.....

Tigermoth- I don't put up barriers and refuse to talk to someone until I've explored their disability credentials- that would be crazy! I go to playgroup each week with a bunch of NT mothers- it's fine- they're all on their 3rd r 4th child so non of them are particualrly precious which is probably why its fine. Of course I'll chat to people in the playground (although I have to say that ds1 doesn't give me a chnace very often). I don't say "oh no I can't talk to you your children are too NT"

Also can I say this is not just me. I am explaining (badly) something that every other mother of an autistic chld that I have met in real life has spoken about. It's also a frequent topic of conversations on my auti lists. There have been other threads about mothers being bullied by other parents at the shcool gates. Do you realise how often that happens to mothers of AS kids? (This is where I'm lucky- ds1's problems are more obvious). Everyone who watched the Jackson prgramme has been amazed at her and singing her praises- I know she also has this problem. it's just something that is there.

Look a year ago I found it difficult to see a kid up on the moors kicking a ball around with his dad. I don't find that so bad now- I must be getting more accepting of ds1. But I do still find a lot of conversation about NT kids painful, abd toi be honest trite. It is just different priorities. It doesn't mean I refuse to meet with them, just that given a choice I'll avoid it. I am also stunned at how tactless people are (and this isn't just in the SN world- my friend having trouble ttc has said the same). Nw would you expect someone who desperatey wanted babies but couldn't have them to sit in a new mothers group? No- and I guess its partly the same.

I will come back and say that I don't think I can be a very good friend to these people either. for example say someone came to me with a pretty big concern- I don't know dyslexia. I just couldn't take it seriously. NOw that's not to say that they shouldn't be concerned and not to say that I can't see it must be difficult for them- just that I can't take it seriously. i would make the right nises but all the time I would feel I was failing them as a friend becuase I couldn't realy get worked up about it.

Another example ds2 is now 19 months and isn't talking (well he is but like ds1 he seems to have a very limited speech sound system). I know he's not autistic- he passes the chat test for starters- I've done it on him- and I know he understands loads, so I can't get worked up about it. I do think he may have a speech problem, (and entirely possible as ds1 has a major speech problem as well as language difficulties) but I can't get myself worried about it. If he does have something the SALTS Will do bugger all until he's 3, I know the type of stuff he would need to do to help anyway, and so what a speech problem is a speech problem is a speech problem. It's not major. I would worry if it was a language problem- that's far more of a pain, but not a speech problem. So if I feel like this about my own child- can you not see that a lot of NT concerns just don't worry me as much as they should if I am to offer a good friendship. I just end up feeling two faced.

So its not that avoid NT's, it's not that I won't talk to them, it's just that it can end up being very difficult. Another example I recently met up with a friend and spend the day with her and a couple of NT mothers. I just came home with my head spinning one of the mothers took it upon herself to question everything I said. For example I said "oh I need to keep and eye on ds1 as he doesn't uderstand not to go on the road as he has no sense of danger" - I really wanted to get back to talking about house prices or my friends pregnancy - I just wanted to explain why I kept leaving the lunch table to check on ds1. But this theme was taken up all afternnon- "you say he has no sense of danger but he must do becuase he just did blah de blah de blah". I didn't want to discuss it - what I mean is that I cant say"don't go on the road" because he doesn't understand a word of that sentence (excdept maybe road) so he has no idea that roads are dangerous places. I was exhausted by the end of the day and felt like every thing I did was questioned. This sort of thing just hapens again and again- it's just the way it is. So yes of course I'll meet people, I'm just not surprised when it doesn't work out.

right, i'm gonna say something here that may upset some of u, and if it does i apoliguise in advance.
to say that u cant get worked up over concerns that seem to trivial to u, but obviously dont to your friends, seems a bit (dunno quite how to put this) well, like your thinking no one else matters. i have friends who approach me with what may seem silly problems, but to them its major, so i sit and listen, dont think 'oh my god woman sort it out its only blah blah blah' and maybe offer advice if needed.
dyslexia may not seem something important to jimjams, but for my brother it made his 1st introduction to school a nightmare, he was called thick, lazy etc. i was told to make sure he learns his alphabet because at the age of around 6 he just couldnt get it right. my mum is also dyslexia, struggled thro school, left and couldnt read or write till a few years ago when my brother was told he had dyslexia. to see them both able to read and write pretty well these days makes me proud of how they worked to overcome their differculties. they cant read or write as well as some people but they can do it.
at the end of the day, i dont dismiss my friends because they dont share the same problems as me, i chose my friends because they are people i like, if sometimes they are insensitive then so what, they are only human, i;m sure my concerns to them must seem trivial at times, but they put up with me yapping on about my kids problems, and i listen to them yapping about how they couldnt find a dress to wear for a wedding etc. i dont introduce myself to parents and make a point of telling them about my dd's problems, i always try and strike up a conversation about something other than the kids. a couple of weeks ago i met loads of mums at toddler world, sat and chatted to them, didnt say a word about my dd1 problems till she actually came over and asked for her inhalor as she was breathless. they were just amazed about the way at the age of 3 she knows when to ask for her inhalors. they asked a few questions about how we knew she had asthma (asthma attack at around a year old, then another major one last year which required hospitalisation), is it scary etc, how they werent sure if they'd cope if their kid had an asthma attack. i just said quickly that because i've got used to it, its easier to deal with. obviously if is scary if she has an attack, but i cant get paniced over it, i have to keep calm otherwise she'll start to panic and get worse. i then changed the subject.
its easy to dismiss people if their problems dont seem anything major to u, but sooner or later one of your own friends may dismiss your concerns as nothing major, its hurtful, but at the end of the day everyone always has a concern about soemthing.

JJ, thanks for asking. She had an endoscopy two weeks ago which showed that her oesohpagus is clear and there is no need for further surgery at this stage. She has been put on a gut motility drug for three months.

It doesn't stop her bringing back her food on a fairly regular basis though. We always have a large pile of napkins available when we eat out and I concentrate on my daughter rather than the looks on other diners' faces when she starts regurgitating her food.

Nor has it stopped the heart-attack like spasms that she gets - in fact these have increased quite dramatically over the last month.

Stil life goes on and I give myself a dose of Children's Hospital or something to remind me how lucky we are!

misdee I'm not saying that other people's concern's aren't genuine. I'm just saying that I cannot listen to them sincerely. Of course my concerns pale into insignificance when compared to others. For example I wouldn't discuss my worries about whether or not ds1 will ever be abe to live independenty with someone who's child was terminally ill. I woudn't think her any worse a friend for not being able to help me- I just woiuldn't expect her to listen to it.

i think another analogy is that you coudn't expect someone living on 100 pounds a week to take the money worries of someone earning 50 grand a year seriously ("oh we've spent so much on a new kitchen we can't afford a holiday this year". Maybe people from wildly different income brackets aren't expected to mix as much as SN/normal families so its less of an issue (and probably another hot topic). I'm not saying I'm a nice person for feeling the way I do, in fact I don;t like feeling like that- I'm just being honest.

And eidsvold summed it up really- until you walk in someone elses shoes you never really get it. ANd this is the commen refrain from my auti friends "they just dont get it". Again I'm not blaming I'm just saying the way it is.

Look back at how the thread started - jmb asked whether it getseasier to mix with NT families- I said we've found lots of thing have got easier, but we don't mix with NT families really- and then the explosion happpened. I'm not on here trying to convert everyone, or make people super-sensitive (in fact my best friends are all people who speak their mind) - I'm just commenting on that fact that for whatever reason I find mixing wth NT families difficult and I know my friend's do as well. That's just the way it is. People have asked why and so the thread has exploded. I'm not trying to justify my feelings I'm just trying to explain them.

My goodness, you were all up very late last night! And what a night!

Jimjams I am totally with you. I think the problem is that people with nt kids just can't appreciate the hurt you go through every day for your child when you know what a struggle life is for them. I think with autism being a 'non-visual' disorder also does not help. The first thing people notice is 'bad' behaviour and they make their judgements on that. Then you have to explain to people that there is not just a spoilt child problem here. (If you do this you then drag yourself into one of those 'educational' conversations!)

Having read last night's thread very briefly I felt that it just proved how difficult it is to bridge the gap.

All parents want the best for their children and naturally worry about whatever is relevant to them. I do appreciate this but still do get upset when my best friend wants to compare school reports, when she must know at this stage that her A+ ds is going to come out on top - she still doesn't 'get autism' after 7 years!

I have read this thread with interest - sorry JMB that it has drifted a bit from your original question. But think Jimjams has hit it on the head by comparing it to the case where people with different incomes mix (does this take us back to the class thread?) People form bonds because they can empathise with one another, and they need some common ground to do that.

It isn't a coincidence that the mums I see the most of have (1) kids the same age (2) happen to live in the same suburb and (3) happen to be non-British. And sad to say, moaning (about how much your kids sleep/eat/what time DP comes home) is (only) one of the ways we converse! What I think has annoyed some people is the implied message "Your concerns are less important." What's nice about Mumsnet is that whatever you post (and I have posted on lots of trivial things since DS was born, sorry), generally somebody else can relate to it and post back - M&T groups are less diverse.

Back to original question, I think you should do things which make you happy - if mixing with NT mothers makes you angry and stressed then just leave it - I don't think your NT kids will suffer much (if at all).