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?

Yes I agree florenceuk- and I'm trying to get across that actually I don't think their concerns are less important as such they're just things that if they were in my children I wouldn't worry about. In the same way someone living on 100 quid a week wouldn't worry if someone far richer suddeny couldn't afford a cleaner- it just couldn't be a worry to them.

I've been thinking about the last time I had an afternoon with a bunch of NT mothers. It was a couple of weeks ago. We went to a friend's house for lunch, we went to the park, another friend came over with her 2 children. We talked about difficulties my friend has with balancing the needs of 4 children, we talked about her eldest son's SATS results, her middle son's various difficulties, we talked about the other friend's problems with her eldest son (he bites), we talked about moving house or not and our husbands. The children played whilst ds1 looked at the stairs (!) It was a lovely relaxing afternoon. it's not really the topics of conversation that cause problems it can be the tone in which they are delivered. Both friend's I saw that day are pretty laid back about their children. My friend was pleased her son had done well in his SATS, but she didn't brag about it and she wasn't bothered about it beforehand (she was more concerned that her dh didn't out her son under any pressure). I find it very easy to be around her- and in fact becuase of her slightly unusual family circumstances (she has 4 kids under 7 including twins) we have quite a few "they just don't get it" conversations as well. I've probably just muddied the waters again but I'm trying to explain that its not that I can't share concerns, or see that these things can be difficult I just can't bear people getting precious about their children.

So what can we do to make things better? From what you post it seems to me parents of NT/non-disabled kids should acknowledge your children, accept your word for it completely on what they can/can't do, not moan or boast about their kids & if possible talk about other subjects you have in common - paint colours, what was on TV, books etc etc. is that right-ish? Mind you Jimjams, I think everyone on here has learned so much about autism and about the world from your perspective on this site. And I think we are all grateful for that.
I think your comparison with people who are ttc unsuccessfully is a good one. I found out recently that a friend can't mix socially when she is having her period, because that's her lowest time. She can only face going out when there is some hope, otherwise the sight of us with our babies is just too much for her. It's not a reflection on us, but her own personal feelings so I can't take it personally.

Exactly aloha- I don't really think there is anything that can be done about it. It's just one of those things. Autism (and a lot of other disablities) just don't mix well with NT families. It's not anyone's fault it's just the way it is.

Sorry the exactly was to the last bit. I think friendships that come with a list of conditions (don't talk about this, don't do that) aren't actually friendships. It just sounds strssfull for all concerned! I really don't think it is very easy for me (and my auti friends) to be friends with NT mothers. It's not anyone's fault it's just the way it is.

Just a simple example - how do I have a conversation with someone who was a very good friend of mine when she is:

a) feeling sorry for me having dd and all we have been through over the past year - (sure it has been tough but we have the most gorgeous dd and have been blessed beyond our wildest dreams)

b) horrified that dh and I would consider having another child..( expecting another child to have to share our attention with dd who would obviously take up more time)

On that last one - funnily a number of parents with children with down's syndrome think having another child is fine - in fact a number are like us - their child with down's syndrome is their first and they have or are contemplating more children.....it is nt parents who seem surprised that we would consider having another child...

Of my friends who have no children/nt children - the best responses I have appreciated are those that ask about dd - how is she, what is she up to - listen to my concerns BUT also are interested in things we are involved in and ask to read things that we may have read so that they understand more of what we are experiencing....I can cope when they share stories of their little ones - what they are up to what their worries are etc - because we also have normal conversations and I don't feel like I have to justify or ignore dd's condition iyswim .....

My sil - bless her - was brilliant - when dd's down's syndrome was confirmed - she went to the DSA website and others to do some reading for herself - she genuinely wanted to know more without us having to do all the explaining.... now she looks up different things that we might have mentioned with dd on the way... eg her heart condition and her surgery. She might also ask questions - because she is genuinely concerned and wants to know more.

Believe me you soon suss out which friends and people belong in which camp...

Jmb - to your original question - i don't have an answer - except to say - you have to figure out what works for you ... I don't think you should give up on it - it seems your friends were fine it was the grandparents that had the problem.... surely they would not be there for every meet up. Maybe you can try again and see what happens....BUT if he is really finding it hard, you are stressed and it is not working perhaps it is worth missing for ds1's sake ....

For us - all of our friends have nt children or no kids and as dd is just 1 it is a little different to situation involving older sn children.

not sure that is any help to you...

This is all very interesting & thought provoking.

Regarding Eidsvold's last posting: I have a real 'problem' communicating with my brother & his wife who have two children - one of whom has DS. When he was born I, like Eidsvold's SIL, joined the DSA, did (& continue to) lots of research & reading, fund-raising etc but I am completely blanked by my brother & wife - if I ask how my nephew is, I just get 'fine' - I know he has a number of health issues, but they just do not want to discuss it with me; I never dare mention my son (exactly the same age as nephew - I feel 'guilty' that he is NT) and they never ask after him. We do not live locally so it is impossible to 'call round' unexpectedly - so end result is zero communication between the two families and the two cousins will never get to know each other. Now it could just be that they don't like me & DH - fair enough - but I just wonder what else I could/should be doing to improve relationships?

As others have said, in life you get on with some people, & some you don't. I too am amazed at the lack of empathy between people - when my DS was waiting for major surgery on his head a friend was sobbing that her child had to have grommits!! But to her that was a real issue & I did my best to sympathise. I think I too would find it hard to be friends with someone who moans about the cost of private school uniform - but I guess that is a 'real' concern for some!!

Lindy - you know you have done your best - perhaps they are still struggling to come to terms with it all. That is probably no help as you have gone out of your way to try and help and understand. I guess that is their loss... it is a shame as both children would benefit from the relationship....

TBH Lindy there may not be very much you can do. It may be that seeing a child the same age as thiers is simply too painfull for them at the moment. It might not always be like that. I'm a bit guilty of using the "fine" line at times just becuase I don't want to get into what a crap time we've been having.

My SIL doesn't have kids but I think I would find it very hard if she did have one the same age as ds1. It wouldn't be her fault obviously - I would just find it hard.

SOunds like you're doing everythingyou can anyway. It might get better later on.

Gah! Too many posts to formulate my thoughts on all of them, lots of aspects relevant to me.... Suffice to say, I agree and identify with JimJams, her posts should be read carefully as IMHO she has described the issues very well. We don't know each other, yet we have very similar experiences and feelings about them and both know many other auti parents who have had the same - coincidence?. Even though everyone has their "list" of problems such as bereavement, health issues, family difficulties etc we all have those too and from my experience none of them compares to having a child with SEN/disability. For me, autism has crossed class, income, education etc barriers and has become one of the communities to which I belong. I would also like to think that I've genuinely helped a lot of other people over the last few years and this has helped me work out what I think and feel about things and is very rewarding. There are lots of positives but I'd give it all up tomorrow if I had the choice. It takes some years to come to terms with any dx which I agree is the problem Lindy is probably coming up against (how about adopting one of us instead). The question of what people can do, I just think reading this kind of stuff must help, the internet is wonderful and it woudln't have been possible before.
JimJams, I'd love to join Chatters if it was possible, I'd never heard of it before. BTW, I spent this morning discussing direct payments with our local service, I am the FIRST parent in this borough to get started with it.........

Thanks for the feedback, I guess you are right, there is not much more I can do at the moment & I can understand how tough it must be that the two cousins are so very close in age - only 3 weeks apart.

By the way Jimjams - hope this won't sound patronising but I have learned so much about autism from you (& others) on mumsnet - have just met a family whose child has autism and hope I can come across in a more positive way than some of the people described on this thread.

Again Davros has hit the nail on the head.

I think really it comes down to shared experiences. Another example we took a ferry back from France together with another couple and their children- they have one 6 year old auti daughter and one 2 year old NT boy. We met up slightly flustered on the ferry. "how's the journey been?" they said. "bloody disaster" I replied- the man showing us to our cabin had misread the sheet and had taken us to our outbound cabin (ie the one we'd had on the way over to France). Now NT friends wouldn't understand why that was a problem but hese auti friends looked horrified immediately. They understood why that was such a disaster and why we had then tried to buy the original cabin as well (for an extra 100 odd quid- we couldn't it was full). That mistake led to an hour and a halfs of screaming. Try explaining to an non-verbal child why he can't go in that cabin when he was allowed in there 2 weeks ago.

We make so many adjustments to our lives every day and to be honest NT parents just haven;t got a clue, so meeting is often hard work. I know lots of autistic rules. if auti friends are visiting I close and lock all windows, I don't use the hoover or anything else noisy whilst they are there and I wouldn't burn incense. I don't pretend to understand their child but I do know the sorts of things to avoid.

Cograts on the direct payments Davros- are you allowed to use if for anything or just respite? I'll get working on chatters- I'm set to digest at the moment so it'll take me a while to get a reply.....

3 weeks apart is tough Lindy. to echo Davros it does take a while. Ds1 was diagnosed a year ago although I had known for a lot longer. A year ago I couldn't watch 2 and 3 years playing football with their dad's on the moors- a year later I can. It'll probably improve as time goes by.

Hi all Misdee told me about this tread and I have just read it all. I am Misdees sister and I have two children with CP and one NT child. Ds is at a mainstream school and DD1 is about to start a SN nursery.
My children mix with all sorts of children from CP kids, austic children, to NT children. One of our friends has a daughter with Retts.
I don't push anyone out and they are all free to see and talk to us.
My childrens problems are not more important than anyone else, my children are children FULL STOP.

My three children are all NT and I often feel very grateful that I do not have to endure the kind of difficulties I have read about here. Particularly the hurtfulness of rude and unkind people and the business of watching your child suffering. Any of us could have been mothers of SN children and I feel very lucky that it did not happen to me. I find parenting difficult anyway, I am not one of those 'natural' mums who love every minute of it. We all need a good moan from time to time, it keeps us sane.

I don't think mums of NT kids can't empathise with mums of SN kids. Of course they can't feel your feelings for you, but everyone knows how it feels to be sad, everyone has seen their child hurting, we all know how it feels to struggle, etc. All that is needed for a person to be empathic is a little imagination to put yourself in the other person's shoes. You have to face so much more of this kind of thing than I do, but I can try to understand.

I know there are lots of insensitive, ignorant and unkind people out there who are so rude and abusive to you and your children. Their attitude stinks. But don't despair of all of us mums of NT kids. There are many like myself who believe that everyone who lives in our world is entitled to the same respect as everyone else - until such time as they knowingly forfeit it (by treating others badly, for instance). Thank goodness I can read about how you feel here. That is a big step in understanding the extra challenge you and your children face.

Personally I think it is great that your children have been born into families with parents like you, who are here on mumsnet showing very clearly how special and important your children are and fighting for their right to live happily. Pat on the back. You have my full support and lots of respect. If you want to moan to me anytime, be my guest Lots of love to you and your chickens.

Thanks Janstar- lovely message- and I love the word chickens- I'm going to start using that. Awww.

As a mother of NT children, I find some of the comments on here really sadden me. People on the SN thread recently were complaining about stereotyping all the children with their particular SNs. Well, there's a lot of stereotyping going on here and a fair amount of intolerance towards NT families.

Take the phrase "I don't socialise with normal children" for example. Imagine if I had said "I don't socialise with SN children" and gone on to complain about how they don't understand ordinary children. Also, apparently all NT parents only feel pity for SN families or think the parents are saints. Personally, I think that you're simply parents and you have my sympathy as would any parent having problems with their child, however minor they may seem to me. But hey, what do I know.

This and a couple of other threads recently have made me feel that us parents of NTs can't win. When I go back to M&T group, I must remember not to appear proud of DS2s recent language progress in front of the mother of DS1s profoundly deaf friend.

Sigh

I don't think the SN kids mums are saints, I think mumsnet mums are good though because none of us would be using this website if we did not want to share our knowledge to help our children.

I'd like to add that I've learnt stacks about SN from Mumsnet and feel I can be a more understanding person because of it. It's polished up my knowledge of autism which was only just-above-vague due to a AS cousin and I know that DS children aren't always happy... I haven't learnt what the right things to say or do are yet but that seems to be because what's right for one is wrong for someone else!

And so one long discussion later an we're still poles apart. I'm not saying that NT mothers are intolerant. I said I don't socialise with NT parents because I don't, not becuase of any undercurrents. JMB asked about whether socialising with NT parents was possible- I answered truthfully that ime it has been hard. If I go out on an NT date I find it hard. We've just had 10 minutes of screaming here because ds1 wanted to go on the trampoline and we couldn't work out what he wanted. My auti friends don't get phased by that sort of behaviour becuase they're used to it, my NT friends do. It's not that I think that NT parents are incapable of empathy, it is just that they are not used to autistic behaviour and so what is normal for me is very abnormal for them. It doesn't mean that a friendship is impossible it just means it is harder to find common ground.

For NT friends I'm a total killjoy (and have been called one by some). I can't go on days out with them because I can't manage both boys by myself (and I get fed up paying to enter a zoo for ds1 to spend the whole time looking at a hoover). So becuase I can't go they stop asking me- fair enough. But surely friendships are nased on shared experiences and if I can't share those with them, and they certainly haven't shared mine then there becomes less in common. I don;t really see it as being any different to losing friends I was at school with. Your life changes, time moves on and you socialise with people who are easy to be with. For me that means people who have some understanding of my life. Whay is that so offensive?

Soupy - it seems though that in my experience sometimes mums like you and janster are in the minority rather than the majority.

It is interesting people's perceptions... I think most of the sn mums here were just sharing their experiences and what works to just lessen the stress in their lives...

unfortunately my experience with mums/families that I have come across it seems to be one of two statements - you poor thing did you know before she was born? or the you must be a saint type..... rarely are comments just 'normal' given in the spirit of we are all mums who love our kids to bits....

Carrying on with the shared experience idea. there are 2 NT mothers on mumsnet that I find I tend to agree with often- and I find very easy to talk to. One is hmb - (and then I found out we went to the same university), and one is tamum- (we know loads of the same people.) Now if I met them in real life I assume we would have plenty to talk about and "bonding" would be very easy.

At the end of the day its shared experiences that make friendships and that difference is what makes auti/NT relationships in the absence of any other shared things to bond over so difficult for me.

Thanks jimjams, I appreciate it. Don't know if it's relevant, but I frequently find myself wishing I could just give your ds a hug, like when he brought you the ?glasses, was it? that he'd brought home from a child's party and said "party" to you.

Ho hum, well I'm ready to give up this conversation, I expect like many others, as we don't seem to have got very far..... It has reminded me of an issue that I pondered when I first joined Mumsnet which is the ability to post anonomously. I've never been involved in an internet list where you don't take full responsibility for everything you say but, on the other hand, I think a lot gets said that just doesn't elsewhere and we're more honest. I suppose this should be another conversation (if it hasn't been already).

Fancy remembering that tamum! We drove past the party place the other day and he said "party" - seems to have made an impression.

you might not want to give him a kiss at the moment though- he keeps trying to use tongues! Bit embarrassing when he does it to the roofer (who took it very well I have to say).

I've been thinking about this discussion some more and want to throw in a few questions if anyone wants to answer them.

Before this, can I just say that I do see what you mean, jimjams and davros, about friendships based on shared experiences and, as a parent of an autistic child, you just don't have the same experiences of parenting as NT parents.
And I do realise, and perhaps my last post didn't make it clear, that in reality you wouldn't automatically blank all NT parents (because you are a reasonable person) but you'd proceed with a low expectation of friendship.

From my point of view, I think autismn is an extremely tricky condition for an outsider like me to understand. Even reading messages that have been posted on threads by you and others, I still feel mystified. If someone asked me, I couldn't give a full discription of autistic behaviour. Whatever I said I feel would be based on wrong assumptions. When I read your posts and others they are very illuminating but ahhh... I don't have enough computer time to read more than a fraction of them.

I have some second hand knowledge of the pressures of caring. My mother looked after my father, with assessments, respite care, many frustrations and instances of wrong diagnosis. I grew up watching the stress she was under at times, and seeing her get on with it too, knowing that that her daily life revolved around my father's needs, things like him having to have a poached egg on toast at 4.00pm every single day. It didn't make always sense to outsiders (why couldn't she just say 'no' for once) and to be honest it didn't always make sense to me, a teenager, though that was my failing, not hers. Anyway I'm rambling.

First question, addressed to no one SN parent in particular: do you think you will have the same resigned attitude about mixing with NT parents in 5 or 10 years time? Do you know many parents with older SN children, do they belong to your groups, how do they find this divide? Do you think it gets any easier to find some common ground as time goes by?

Also, coming back to ages 3/4/5, I'd hazard a guess that quite a few parents of apparently normal children do not take that normality for granted, do not really know if their child is 'normal', worry that their child will not fit in academically or behaviourwise at school. I know I am in that position with my youngest son. OK I can present a fully potty trained, talking child to the reception teacher, so I can't pretend to have your experience jimjams, but I still am not sure (and others have real doubts) that he will be in the 'normal' range. I know this probably sounds like that parent of a dyslexic moaning to you about problems you can't feel deep sympathy with, but my point is that many parents out there don't feel their child is totally NT and surely having that doubt in itself brings some empathy.

Last thing, I do wish I'd spoken for longer with the woman with autistic sons that I met on the ferry. When I asked her if she belonged to any local autistic groups, she said, very firmly that didn't believe in that. She didn't want to get into the whole internet, group meetup thing. She'd didn't want to mix with people just because their children were autistic. But I didn't ask her why exactly......... if only she was here to elaborate.