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?

I can't answer your question because I don't feel it's relevant to me as I don't have any real friends whose chidren have SN. All my mates. bar 2, have kids and we socialise all the time with them. I did meet up with 3 girls who also had young children with DS and like me were all late 20's early 30's. I keep in touch with them and they are lovely girls but I founf it weird 'making friends' with these girls as the only thing we really had in common was that our kids were 'sn' . I do however feel the need to talk to other sn mums and mumsnet has been an absolute godsend for that. All my mates are brillint and incredibly supportive but only someone really living what you're living in terms of hospitals and therapists and achievements etc will do sometimes.
I expect it to hurt me a little when my friends younger children overtake Lottie in their achievments, but it will only be a short and not very sharp sting. I love my friends kids very much, some more than others naturally and they all think I'm not half bad either!, we're all very close so I'll always be proud of them.

Sorry Tigermoth - i couldn't answer your well thought out question so I just rambled on about stuff anyway. i apologise for that, I was just chatting and drinking wine - not good late on a friday when it's a serious subject and someone is having a serious conversation. I was chatting in a light hearted fashion and in hindsight i should have just shut up!!

thomcat, no, don't feel like that. One of the things you're saying (hope I'm right) is that different friends fulful different functions for you, irrespective of their children being NT or SN. That's part of friendship IMO. I have to (would you believe it) put my sons to bed now so I can't say more but will be back later or tomorrow.

Thanks Tigermoth, I just didn't want you to think 'what the hell is she waffling on about now?'!!!
Yes different friends fulfill different functions, absolutley.
One of the things I was trying to say is that I sort of agree with what the woman on the ferry said. I don't feel terribly comfortable forcing myself to socialise with the 3 girls I was introduced to via the special care unit at the hospital where Lottie was born. They are lovely girls but apart from our chidren all having DS I have nothing else in common so find it difficult to maintain a friendship with them. I would have probably gone on thinking that I didn't want to make friends with people just because Lottie has Downs until I accidentaly discovered Mumsnet through work (I set up a giveaway with Mumsnet on the home page).
I have found it invaluable and being able to drop in and out of conversations when it suits about topics I want to discuss, some SN some not has been fantastic and a huge source of support for me.
So that's my terrible way of covering your first point and your last.

With regard to the 2nd point you made about not really being sure if your child is NT and whether that brings empathy - well yes , for me it does. Through experience with 2 sisters appearing until their teens to be NT, but actauly being far from it I totally empathise - there are no guarantees in life.

Hope that makes some sort of sense!
Going to pass out now and think I should ban myself from drink typing!

I'm glad this thread has continued because I wanted to try explaining it from a different angle anyway.

First the woman on the ferry. Were her sons's either high functioning autistic or Aspergers? (If she was looking after 2 of them at once on a ferry I would imagine they were reasonably high functioning) I think in that case there is a strong reason for mixing with NTers- after all these children will have to live in the real world and they can learn more from NT children. And probably there life is more like an NT child's than a moderately or severely autistic childs. For parents with moderatley or severley autistic children its diferent. And mixing itself is harder (and I have no idea at this stage whether ds1 will live independently or not).

Let me give you an imaginary example.

Say I meet you at the park- we seem to like each other and arrange to meet up. I invite you to my house. You arrive with the children. DS1 would come and have a sniff then disappear - he doesn't play with other children and he wouldn't want to be in the same room with strange children unless he had to be. We go off and have a cup of tea- we're just settling down when ds1 appears - he's taken his nappy off (if I had new visitors round I would put him in a nappy rather than pants as I wouldn't want to be wiping up whilst they were there), he says "da da mmdan" (I want toilet)- I look closer and realise he is covered in poo, it is on his legs, under his fingernails and smeared across his face. I go upstairs and find it everywhere across the bathroom- on the bath, the floor the sink, the taps. How would you feel? And that's not asked in an accusatory tone? That is something that happened when an NT was visiting the house (she didn't have any kids with her thank god). We discovered him when she was leaving and she could.n't get out of the door fast enough- it would have been more helpful if she's held the crawling baby for me! Now imagine that had happened in your house!!! Would you really want me back?

Now my son is not a poo smearer- it has only happened on a very few occasions, but it has happened at times. Becuase I mainly mix with friends with moderately autistic children they've had it happen to them a few times as well. If they haven't they've had something equally as antisocail. So for them it is just part of life- My 2 closest friends children are 6 and 7 and still in nappies at night- one becuase physically she's not dry and the other becuase she's stuck in a routine of wearing a napy and pooing in it at night.

If the woman on the ferry had high functioning children then poo smearing in a 4 year old may be as far from her world as it is from yours, but if I didn't have people to talk to and see for whom that has been normality I would go mad.

Of my 2 closest friends one doesn't see NTers becuase her daughter (who's 7 and verbal) attacks other children and cannot share or have people in her house. Shen frequently attacks ds2. The difference between her attacking ds2 and another 18 month old for the mum- is that I'm not disapproving (I keep a very good eye on ds2 thoguh). My other friend with a 6 year old autistic dd, cant go anywhere becuase her daughter a) escapes and b) trashes places. You can't keep her in the same room as you as she won't stay in a room with other children (and having toddlers we need to be with them). Last time she came here she found some permanent pens in the cupboard and managed to cover herself in them. At home she has "made footprints" over the house with permanent ink. She has drawn dogs on the dining room wall whilst we were in the sitting room.

Do you really want us in your house? In fact I am lucky as ds1 is extremely easy for a non-verbal autistic child. I think ADHD would be much harder to deal with becuase of the destruction that tends to go with it. But maybe this is why autism is a bit different. We can't even mix with a lot of the SN groups. A centre down here which runs playschemes for the disabled has just banned autistic kids as they can't cope with them!

I suspect back to the ferry point it depends on how high functioning your child is. My friend with an Aspergers boy hires magicians for his birthday party!!!!!!! For me that is so many worlds away- that when I am with my 2 closest friends we say ''she hires magicians for his birthday party!!!! can you imagine" with a confused look on our faces.

Will it change as I get older- it depends on ds1 I guess. When he was younger I had no problems mixing with NTers, as he's got older its beome harder and harder. if he develops langauge and stops twitching in from of stairs or washing machines every time we go out maybe it will become easier to re-enter the NT world.

Back to the dyslexia point. I had a specific example in mind- It's not that I mind people taling about dyslexia - and in fact I can give anyone interested the number of people who supply lenses or do brain gym/DDAT etc. I made that comment as it related to an incident an auti friend had with an NT friend when she was very insensitive. I don't want to expand as its not my story but the NT friend was incredibly insensitive.

As Davros has said I can't talk to most NT people about my life because it is so far apart and often too depressing. I can talk to my auti friends becuase it is their life too.

Now do you still want to meet up? My house maybe Bring the bleach!

I suppse that thread contradicts my original that it was me that had problems mixing rather than my son (usually he doesn't poo smear he just looks at stairs or washing machines so he's no bother). Does it demonstrate though how far apart our worlds are? I guess that's the underlying problem. I think autism may be a bit different from other disabilities. Our children look normal but they're not. I don't want to say "oh high functioning children have no problems" either becuase that's obviously untrue, they're just a different set of problems (although I think they can be just as hard at times to bring into the NT world as their disability is even more hidden and so much more is expected of them).

Oh and one more thing about others trivial concerns. I can't deal with them really becuase I can only just deal with my own life at the moment. I think becuase I look like I cope and am at ease with autism people think I will be concerned about their childs - I don't know- lisp say (I've had that one). Now if someone says "ds has a lisp who should I see etc" then its fine. But if they say "oh he has a lisp his whole life will be ruined and oh I'm lying awake at night thinking about how awful it is and how dreadful" then I think - to echo davros -"oh purleease"

The whole milestone thing as well isn't a case of me sitting watching friends kids reach mileastones all green eyed with envy. I find it very diffiicult when ds2 reaches milestones as well. Becuase he does it so easily. Having spoken to my friend about this they feel the same. We are pleased/relieved that our children have done it but we are sad becuase our others haven't. I think as an NT parent that must be something that is hard to understand and is something I probably wouldn't want to admit to an NT parent anyway (except on here annonomously). But if I find ds2's milestones hard to handle can you see why listening to someone braging about little johnny for an hour is hard to take!

I think this post just shows that despite the exterior of coping I do still find a lot about autism incredibly hard to handle (escpecially thinking about the future). At one we had a normal boy, at 2 we had a mild language delayed boy, a 3 we had a boy who probably going to be high functioning, now at 4 we have a boy who I'm not convinced will ever speak or be able to live independently and I suppose I haven't really accepted that and I prefer to be around people in the same situation. I'm just not readty to talk about school uniforms yet.

Now I sound like I'm feeling srry for myself- when I'm not. I have a lot to be grateful for.

maybe some people couldnt cope. but others could. and i wouldnt mind having u and your son round at mine, amongst the constant sickness and diahorrea that follows my dd2 everywhere (dietry problems, trying to find the cause), and the fact on more than one occasion i stupidly leave dd1 eczema creams in reach and they get smeared on carpets. sofas, clothes etc, the fights between my dd1 and mieows dd1, which can get nasty, the way i move everything up high out of dd1 and mieows dd1 reach as i know what they are like, (dd1 is a climber, mieows dd1 is an 'artist' i'm sure that i wouldnt even notice your ds staring at the hoover or washing machine or whtever else, (i'm not taking the p*ss btw). i know things for u must be hard, wondering if your ds will ever achieve what 'NT' kids do, but if u came round here i'd bet u'd run a mile before i would!

Oh I know misdee- there are NT people I see- and who are fine- it's just that lots of people can't cope (and to be fair sometimes their kids find ds1 hard to deal with- not becuase he does anything to upset them -he doesn't - he's very passve just because he is odd).

odd is my dd1 rolling on the floor for 1/2 an hour yelling 'i'm a sausage!!'

lol!

But misdee she is a very good artist!!! ;o

Do you know, i don't think any of that stuff would phase me much, Jimjams. My son (nappyless due to heat) wandered in from the garden and pooed on the floor the other day and sat there playing with and wiping it around the floor and on himself it until I realised how quiet he was! I wipe my friend's kid's bums from time to time (I am close to some and they like to chat on the loo!). I've cleared up large quantities of other people's kids' vomit and changed wet and soiled sheets too (I used to help look after kids in school and university holidays and helped out in a children's home). I don't think poo phases me and I'd certainly not run out of the house. I might expect you to help me clear up if it happened in my house, but I wouldn't be appalled. And I'm used to fighting and biting and hair pulling and destruction because ds is two and his friends are two too. This may sound to you like any NT mum who doesn't understand, but I can honestly say that I wouldn't get upset. I'd just think, well, he/she's autistic, just as I think, well, he/she's two. It doesn't bother me if ds draws on the wall (have lots of spare paint for repairs!) so it wouldn't upset me if an autistic child did it. It's just one of those things. If I wanted a showhome or perfect peace I wouldn't have a child or invite other children over. I'd probably not have any permanent markers in the house though! I don't think I'm unique...I'm certainly not a saintly or particularly earth-mothery type. Sometimes I'm not nice at all. But I wouldn't be upset by an autistic child acting autistic, I hope.

she is a very good artist mieow. cheers for taking my dd1 of my hands for a few hours btw.

Aloha- I'm not saying eveyone is appalled, and I'm not saying that no-one who is NT can understand, it's just an example of the type of antisocial behaviour that goes with autism. And in fact with a 2 year old I'm sure poo is easier for you to deal with than some of my friend's who haven't had to do much with it for the last 2 years! I suppose my ds's most frequent antisocial behaviour is screaming (he screams every day over all sorts of things), and I couldn't say "oh don't scream because you'll wake the baby" as he wouldn't know what I meant- so he could end up waking a baby who's just gone down for a nap.

I've been talking about this to a friend who's just gone out with an NT friend (who is a great support to her). Her NT friend just said to her half way through "how do you cope with this every day and how do you feel with everyone looking at you?" (She hadn't even noticed anyone staring). It's just that normality to us is so far removed from your normality, whether that be needing to have all windows locked, wiping up poo, having to go into buildings thorugh certain doors, not being sure whether your child will ever be independent, dealing with social services, and the constant thinking ahead that goes with autism. Whenever we go out I have to constantly think ahead for problems. We can't change our minds at the last minute as ds1 would go mad. Even simple things. For example we were out on the moors kicking roudn some balls when one rolled under the car, I was looking for a stick to retrieve it and my mIL said "wait until you geti n the car and get it out when you've moved it" err no! If I did that ds1 would go ballistic- and I mean absolutely ape. If I moved the car a foot, stopped it and got out all hell would break loose. Now obviously that's no problem, and that's something I can explain easily- it's just that these little adjustments are made continually every day, and my auti friends understand them as they make those adjustments too.

Now I;'m wondering where to go this afternoon. We were going to go to a local National Trust property to walk round the grounds but a friedn has told me there's a craft fair there and you have to go in a different door than usual (he dd went absolutelty mad). The different door thing led to ds1 whacking his teacher round the face, so wandering whether to risk it. Think I will- I'll report back!

Oh, Jimjams, I know I don't understand. I will never know what your and your ds's life is like unless I have an autistic child myself. Still, I promise your child would not appall me. Surprise me, possibly, but not appall me. Good luck with the visit. I hope you have a good day.
BTW I'd never point out that people were staring. As I don't care what strangers think and am pretty unembarrassable about kids it wouldn't bother me. maybe I'm odd, but some of these NT mums you describe seem unbelievable anal to me .
You could come and wake my baby anytime!

my baby never sleeps, so not a problem.

well that was a disaster. I really should learn! I thought that as ds1 had only been to that place once before (months ago) the fact we had to use a different entrance wouldn't be a problem. It was! He had a huge meltdown which ended in a nosebleed. He does seem to be getting more rigid as he gets older. It would help if his memeory wasn't so ridculous as well.

The interesting thing relating to this thread though is the fact that although our children are very different the same small trigger gave the same huge response. So all the little changes that we make automatically to our daily lives come pretty naturally to us, but they're things that NT's don't even think about.

Do I still sound intolerant? Probably I am, (to come back to your anal point- yes a lot of people I come across are incredibly anal- but whereas in the past I could have got past that I guess I cna't anymore) I do think I'm less tolerant than I used to be. Should I be explaining more to NT's? Possibly but to talk about my real life to people who have normal lives is frankly depressing and I don't have to do that with my auti friends as they know what my life is like. So to get back to the original question- I haven't yet found a way of bridging the gap that makes it easy generally to mix socially with NT's. It can be done on an individual basis (and it sounds like you could cope with us aloha!). I suppose the best bit of advice I can give really is keep trying, but don't expect too much beforehand (and then you won't sob all the way home). That's the approach we took with the beach and after about 9 months of screaming every time we got near one- he eventually decided beaches were OK. Maybe that's the approach to take with these social occasions.

Gosh Jimjams, thank you for the kind comment! I blushed to my roots! I've just got back from holidays , and I am scaning Mumsnet to avoid looking at the pile of washing that waits

I've only had a quick scan of this topic (the pile of washing is very big) but one thought has crossed my mind. I fully realise that the comments made by NT parents about minor problems must be a pain to deal with when you have so much to deal with with you ds's problems. However, might they be saying these sorts of things to try to make some sort of limited link to your problems in a poorly done sort of a way? Might they be trying to say, 'My ds/dd isn't perfect either, we have problems too'. Not to try to belittle your difficulties but to try to connect with you? I ask because 10 years ago dh had cancer. Many, many people would tell me about relatives of theirs who had cancer. At the time I wanted to scream at them 'Well dh has it now', but at the same time they were trying to empathise with me, and dh's condition. Most decent people try to connect with friends and this might be their way of trying to do it. It just comes across as grossly insensitve.

I'd also like to list myself as one of those who has learned a massive amount about the needs of SN children and their parents through Mumsnet.

But I still disagree with you about homeopathy tho . In the nicest and most supportive sort of away!

Occasionally you do get those sort of comments hmb and they don't annoy me- not in the way outlined below anyway. The people I'm talking about (who have been binned) would just talk over and over again about themselves/their problems - whilst forgetting even to ask about ds1. These people didn't even manage to use the autism word. I was just surprised at how many of my friends behaved like that (and I assume embarrassment was at the root). Maybe I just had shallow friends! TBH to say that other people's trivial concerns annoy me isn't true. I don't rank concerns and I'm happy to chat about them- it's hard to explain but it's just the tone I guess. I don't think I'll ever be able to explain this point, but I know that my friends feel it as well.

Thinking about it I think there's lots we disagree on! (War in Iraq being another one) Maybe we just disagree whilst seeing why the other one thinks the way they do! Hope you had a great holiday. You've missed the good drying weather!

I think that you are quite correct. It is the difference between debating an issue with someone (which is fun and stimulating and I enjoy very much) and arguing with someone (which is none of the above!) I accept that I will never change your mind, but I enjoy the discussion, and fully respect your view point even when mine is quite different.

It is a good day fro drying in Lincoln. 4 loads down, 2 to go.

And I KNOW that if you'd seen the effect the first time I gave ds1 a remedy (not remotely thinking it would work) you'd have a cupboard full remedies as well I understand your position well as it used to be mine......

I'm sure we must disagree on vaccination as well I have a vaccination question that I have been waiting for you to get back from holiday to ask. I'll give you time to finish washing and ask you next week or something. So yes I guess although we disagree I defintiely respect your opinion.

Ds1 has worn a pirate outfit all day - including a headband (totally irrelevent to this conversation). I am so stunned. Suddenly last week he's decided he will dress up and he will wear hats. Maybe it is relevant to this thread. Keep trying and it might just happen eventually. I'm going to go and see if he will wear a sheep outfit now......

Bloody hell he will!!!! I last tried it on him at xmas woith a long sleeved cotton tee-shirt on underneath- he clawed at it to get it off. Now he's sat next to me wearing it next to bare skin with the hood up!!!!!!!! BIBIC must be working.

So yeah try try and try again.

That is such good news about your ds Jimjams. You have posted quite a few good news notes, I remember the one about the advances in potty training before I went on holidays. You are doing great things with your ds. Well done to both of you!

Feel free to post your question, but as I've said before I'm not an expert in vaccination. Oh, to blow my own trumpet a bit my best marks in level 2 were for the work I had done with my SN class! I was so chuffed! And thanks go to Mumsnet in no small measure for the insights it has given me into SN children.

The poo on the carpet wouldn't faze me that much! Ds has had so many accidents and I used to throw it around when I was a kid. I stopped by the time i went to school, but it must have been tough on my mum. Ignorence was bliss for her I think!

Oh and have you read the new book by Anita Diament? Good harbour? I read it on holiday and it is good, not as good as the Red Tent, but a good summer read. And 'The Dream of Scipio' by Iain Pears (intance of the Fingerpost) was the best read of the holiday.