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?

yeah and people moan at m because their dd/ds is "driving them mad" because "they won't stop talking" and it's "doing their head in".

Wow that must be really hard! I do think that sort of comment is slightly insensitive. What am I meant to say? I always think it would be a bit like me moaning about the kids to an infertile couple. Can't imagine doing it.

But jimjams, sometimes people won't be thinking about your ds or your situation, they will be wrapped up in their own world and thats when its easy to say something that could be taken to be offensive.

It's very hard to keep everyones problems/history in your mind the whole time - I am not particularly tactful (although I like to think I would be if I ever met you!) but I would hate to think of myself as being deliberately hurtful.

I appreciate why you feel the way you do but I think you are judging parents of NT children very harshly. I think there is a difference between genuinely being tactless (a friend moaning to me about morning sickness after I had had a miscarriage - I knew her well enough to know that she would never have meant to upset me in a million years, she's just a motormouth!) and deliberate nastiness.

This is really confusing me. Sorry to be so thick about this. And I haven't masses of time to post today, so if I sound abrupt ever, that's the reason. Jimjams, davros and eidsvold, thanks so much for being so honest and Jimjams I'd really like to meet you one day, too

I can see how frustrating it must seem to you all for parents of NT children to moan to you about their problems, like talking too much. Very tactless, I can see that. Do you think you get to suffer these conversations because the NT parents you meet want to show you that not all is sweetness and light for them? I mean as an NT parent I can see myself getting embarassed to wax lyrical about my son's achievements, such as they are. I get embarassed about this with NT parents, so why not with SEN parents? I hate getting into that competitive mindset with anyone, so often it's easier to mention the problems I have, not the non-problems.

But would you rather your NT parents told you about their children's good days and achievements? Taking talking as an example, would you feel less irritated hearing of so and so's child's memorising of a song rather than their endless backchat? If both make you feel bad, fair enough. But where does that leave things? Perhaps best to not say too much about developmental issues, not pass on news about children, not anaylse things too openly, and just live for the moment? is that the best way forward?

I can't pretend to be where you all are. My sons are 'normal' though definitely not as 'normal' as some children. As you may know, jimjams, there's a question mark hanging over my youngest son (prompted by his nursery) and my oldest son's behavior at school has always been an issue. I have had hurtful comments and assumptions made about my sons. But I know this is different. They are still to the best of my knowledge broadly within the norm.

As you all say, as your children get older and your non SEN children make friends from with NT only familes, mixing with these families will become an increasingly unavoidable for you, I'd imagine. Will you cross that bridge when you come to it?

jmb1964, I agree that situation has to be the worst -- looking forward to the double whammy of entertaining two kids at once while getting to chat to real live adults that you like, then one child spoiling it all! (OK, I'm not actually rereading your post, I'm thinking of last week for me.) You definitely had it worse with the grandparents looking on disapprovingly. Sheesh!

I don't know about the special needs aspect -- but just wanted to say that I so completely sympathize. My 5 1/2 year old can't have playdates on his own yet, so we're stuck together with my youngest (almost 2 years old) for everything. It's so difficult and chances like the one you had are, for me, few and far between. I desperately miss my friend who got it all and had kids the same ages and was cool about anything.

Anyway..

Jimjams, I agree with Enid. My position is that everyone has their own worst thing. You are allowed to complain about yours and they are allowed to complain about theirs. If you don't want pity, don't judge people for what they think is difficult in parenting their child. It is hard having a child who talks all the time. If my son was diagnosed with something, would that then be ok? My sister is happy for me to bitch about how my youngest is a little monkey (her youngest can't use her left hand at all) and I'm happy to hear about how hard it is to cut down on the amount of milk her eldest is drinking (my son starts to die after a sip). It's the spirit in which it's offered and it's taking it as it's meant.

This is the thing tigermoth. I just think I am poles apart from many NT families now. I just do not have the same concerns. But at the end of the day that can be accomodated in some friendships but not others. I suppose the main difference is that the NT friends I still have aren't embarrassed to talk about my son, the ones I no longer have are- just can't be bothered with them. I don't police every comment- of course everyone can be tactless at times, but some friends have yet to mention the A word to me while bleating on about how terrible it is becuase private school uniforms are so expensive and somehow the gap seems too large to cross. I suppose the friends I still have let me talk about the things I want to (and will discuss my concerns) the ones I've binned would just change the subject. Does that make sense? It's not all SEN - I mean we do have mainly normal conversations and yes we talk about private shcools, but somehow we're having a conversation rather than two seperate monologues iyswim.

In fact I have more NT friends than many of my SEN friends- so I've perhaps been quite lucky. It does seem to be a universal problem. Apparently the chocolate fireguard of a stress councellor ended up in tears from this very conversation. The group were talking about how isolated they felt form the normal world I guess and how it had got to the stage where they really couldn't socialise with NT families anymore.

Of course I'll mix with NT families for ds2 (and ds1). I just might have to grit my teeth and bite my tongue occasionally - then go home a rant to my real friends (NT and SN )

It doesn't really come down to a SN/NT divide. For example an NT friend rang me the other day to moan about an NT friend of hers who had expected her to be able to do something just as easily with her 4 children as her friend could do with her one. She rang me because she knew I would have the same sort of problems with outings.

Also I do recogise that I am the one who has changed. Hugely. I am a totally different person having had ds1, and a very different mother to ds2 as well. I have a suspicion I could have been a bit on the vile side without my little wake up call Long and I'd better dash becuase my dinner is burning.

I do think NT/autism is a particularly hard mix becuase so much autistic behaviiour looks like bad parenting and pure NT families can get a little judgmental whilst totally missing the point.

No I'm sorry I still think it is insensitive to moan to someone about your child talking all the time if their child can't talk at all.

I have a friend who is having real trouble conceiving her first child - I would never moan to her about pregnancy. That's not pitying her- that's just being sensitve!

I'm not talking about odd throwaway comments I'm talking about certain people complaining about this all the time.

That's what I get for going back and forth from the computer. I agree with Tigermoth too. I didn't mean to imply that I disagreed with Tigermoth because she wasn't explicitly included in the "I agree with" statement which was posted after hers. And she says things so much better than I do.

I'm sure I won't be able to put this as well as Tigermoth, Enid and JJ have but I do feel a bit hurt about the comments you have made about parents with NT children, particularly as it was me that started the thread about whether you would have had kids.

My friend came to visit me with her 2 children today. One is quite disabled and the other is fine. We have always talked about the progress and difficulties with her disabled son and we always swap notes on how obnoxious her daughter and my kids could be. I've never felt that I couldn't tell her what I was thinking.

I'm sorry if it offends you when I moan about my kids, and i don't doubt for one minute that you've got it a lot tougher, but I do find them bloody hard work.

Perhaps this is why SN mums feel cut off from NT mums, because everyone is too scared to say what they think, in case in causes offence.

Oh tigermoth- no I don't think these particular NT parents are trying to show me its hard (believe me having an NT child is not hard compared to having an auti one)- I think they're so wrapped up in their own little world that they don't actually notice what happens when your child isn't "perfect". I don't think it even occurs to them. Again I'm not talking about the odd tactless comment I'm talking about two people being poles apart.

Another example has occured to me. We went camping in France this summer and had a variety of neighbours. We had 4 different neighbours who were English speaking over a 2 week period. of those 2 were lovely (and one had children the same ages as ds1 and ds2- usually the hardest type of NT's to accomodate- really nice people and yep we chatted about schools and kids etc), one were kind of quiet and one lot were awful! I say they were awful because they were very friendly until they found out that ds1 had autism (I had to tell them as they were trying to speak to him). After that they totally ignored him and couldn't even make eye contact with him (see autism is catching) even though they would say hello to ds2. Obviously they didn't know how to handle the situation, but what I mean about being less tolerant is that I now cannot be bothered to even try with people like that. They also invited everyone to have a drink with them except us- we had only exchanged pleasentaries- we hadn't said anything that could have been misconstrued- so we sat there like outcasts. Similar story to Eidsvolds on the SN thread today. These type of situations happen all the time- so they get tedious. And mainly I think they reflect people's embarrassment. Why should we have to accomodate that? We have enough crap in our lives tbh.

This idea has come up a lot over the last few months and it seems to be a farily universal problem.

I don't think we really expect people to edit the things they want to say and to always have our feelings at the front of their minds, especially people we don't know too well. But that doesn't stop us thinking "oh purleese" sometimes. Most people who don't have SEN or disabled children genuinely have NO IDEA about the parrallel universe most of us inhabit and that is because we spare them the details which would often shock them and just make us feel bad. That's no-one's fault, that's the way it is. I'm very happy for my friends who don't have these problems and wouldn't wish it on anyone. However, I'm not jealous of them but I'm not very honest with them either which is a kind of escape for me anyway. I've had some awful comments from "friends" who have autistic children themselves but also have NT children as, until very recently, I only had my autistic son. Many times people said to me "aren't you lucky to only have one child" (yeah, who is non-verbal, will never be independent etc). These are people who really should know better but still had no clue what it's like to have ONLY a child with a disability. So there's many levels of being tactless or insenstitive. The reality is that people are often simply tactless, I'm a tactless loudmouth myself (see many other posts) but when you recognise that in someone on a regular basis and you can start to smell it in strangers, then you learn to stop wasting your precious time which, believe me, has to be used for many, many issues that NTers know little about. Its interesting the course this thread has taken, I think because it came up on Behaviour/Development rather than the SEN section.....??

Thank you Davros you've said exactly what I've been trying to say.

sounds to me, jimjams, like you have some NT friends who are thoughtful and who you get on with, and some NT friends who you just don't really like and drop. bit like all of us - life is too short to keep up with everyone - I only keep up with people who it is easy and worthwhile to keep up with IYSWIM. and I have different friends for different needs - some are very child-based relationships, some aren't. I suppose that is similar to you distinguishing between NT (and presumeably also childless) friends and SEN friends in the way that you do?

Yes similar PPH, although I think the gap between non-verabl autistic and NT is much larger than the gap between child and childless. But yes different universes really. As Davros says it's just the way it is.

Thanks JimJams, glad you agree I'm a tactless loudmouth!!! Princesspeahead's analysis is a good one about different friends for different needs and we SENers just have an extra (big) section to add to the usual.

of course the gap is much larger, apart from anything else even childless people were children once so have some experience of children! whereas relatively few people have experience of SEN children and everything that comes with that...

Hi, i haven't read all the posts so i hope i'm writing a valid comment for this page! My bad memory (which is a shame) was my dd Christening! We had both families come back to our house, had a caterer do the food.......we were given the pressies and someone said "oh open them", She is my first child and i didn't really know what to do so i did! About ten mins later my sis came and said "oh my boyfriend said will you put some music on as it's more like a wake than a Christening!!!!" I don't think he thought of what that meant but as long as i live, that will be what i remember from my darling daughters special day!!

i have 2 NT dd, but it is hard, especially with dd1. it may be something that isnt a mojor problem to someine with SN kids, but my dd1 has servere eczema and asthma. big whoop u may thing. but its hard, because how can u explain to child so young they shouldnt scratch, that they cant have bubbles in the bath, that they cant have their faces painted at fetes/parties etc. that u dont know what is going to set off the next outbreak of eczema. the constant applying creams/baths/inhalors, that some parents pull their kids away from her when she is playing with them becuase her skin looks so bad, the sleepsless night, the way someone asked me once if she was a burns victim, the fact she has to have a break when playing sometimes as she starts wheezing and coughing. i may moan about it, but to me its something that might not go away even tho everyone says she'll grow out of it. it controls a lot of my life, the doctors appointments, the hospital appointments (one specialist for asthma, one for eczema and also been referred for an allergy clinic).
she may be NT, but she has problems in her own way.

jimjams, instead of condemming the 'awful' family from your holiday how about next time explain what autism is? not everyone knows what it is. i hear myself constantly saying 'its just eczema, u're kids wont catch it'.

rambling and lost the plot now so am gonna finish.

ok, SN-NT?????(i AM new to this!

Sorry, don't see why JimJams should spend her HOLIDAY explaining anything to anyone, especially ignorant and prejudiced people. Don't you think we spend LOTS of our time doing this and sometimes we just don't feel like it or find it too upsetting? Sorry to sound harsh, don't mean to, really. Misdee, it sounds to me like your child does have a degree of special needs with such severe eczema and asthma, especially with extra hosptial visits etc.

i would rather explain quickly what the problem is and have everyone feel comfortable than disreagrd someone as 'awful'. if jimjams had explained what autism is, and the family then acted badly, then fine fair enuff call them awful. some people just dont know what autism is is what i'm saying.

Jimjams, I still disagree with you. I think my sister and I are right; we talk about the things that bother us. My youngest son is the monkey who climbs over everything and her youngest daughter is the one with cp.

Her other daughter drinks too much milk and my other son has had the tendency to start to quickly die from it -- both ways: the throat swelling closed and the shutdown of blood pressure, basically passing out until he's dead. The former has been the most popular for him. But, honestly, I do appreciate it's really hard for kids to stop drinking loads of milk and eat "real food" instead. I've got friends with the same problem who I discuss this with (of course, I've got no helpful hints... )

And what is with the "having a NT child is not hard compared with having an auti one"? I guess it's fine if you believe this. Why are you annoyed by pity (sympathy and sorrow aroused by the misfortune or suffering of another, according to dictionary.com)? Especially since any NT parents aren't allowed to do the normal bragging (and yes, there is the normal bragging without competition that goes on -- those of you that don't believe it need to get new friends) that goes with life. But you are allowed to brag to them? So it's ok for you to mark milestones but god forbid your friends do?

Yes, davros, I wouldn't have said this had it been under a different topic heading. And Jimjams, as a seriously provaccine person, the argument you made recently made me change my views. But it seems that god forbid you give us parents of normal kids (and yes, you do see you and your kids as something different and special, so the rest of us are just normal) a chance to have ups and downs and bitch and complain and brag. We all have children. We all love them. And we all have valid worries.

JJ, my sister has 2 kids with CP, we bitch and moan about our kids various needs, about my dd1 eczema and asthma appointments, about her kids MRI's, botox etc etc. and we also discuss normal worries about our kids, about what they have achieved, what they've done wrong, pretty much everything.

Hello - just popping in to say that as a mother of a SN child, but new to the game really, that I wouldn't want to have to explain myself / Lottie to every Tom, Dick or Harry that gave us a sign o say 'we know your DD is different but don't know what it is'. Sometimes I feel I have to educate people and sometimes I just want people to be understanding and accomodating so we can get on and enjoy our day/holiday etc etc. Just agreeing with Davros really!
Haven't read the whole thread as very uncomfrtable at home in spare room.
Just had a flick through now and also want to just add that all my friends with NT kids have been great and very supportive and to date haven't had any upsetting comments from them. They all make a fuss of DD but only, I think, becaue she is the sort of child you are drawn to not beause they are singling her out. My friends kids even make an extra special fuss over her and they of course don't know that she is SN, so like Edisvold, I feel very lucky in that way and luckily, to date, haven't felt a divide. Just come across a few people that don't know me and have proved themselves to be ignorant with their comments. I think the worst thing that was ever said to me was on here actualy when someone said that kids with SN were a burden to society!!!!
Anyone sorry if I've gone off on a tagent or anything just picked up on a couple of comments and wanted to add my bit as I'm not up for watching TV tonight!

SN i know but NT.....c'mon help me out , i need to get used to the lingo!

Must not be so slow......

Anyway, what's so hard with a few words? People are supposed to recognize and understand at once? At all? How hard is it to have a word?

Wait! I can answer that. It sucks. It doesn't mean you shouldn't do it. For me, it's my son's life. For you, it's just what, your pride? Your son doesn't get to play with the kids he'd like to. I understand that. It does suck for the kids also. The adults never believe me and my son suffers. Maybe it's the same for you?