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?

Oh no - while I was busy crapping away, there were faster and angry typists out there!!
Feel like I've walked blindly into someting here. Knew I should have read this thread properly!

like i said, i would rather explain to someone that dd1 bad skin is just eczema and not some highly contagious skin condition or wierd bug or anything. its just takes a minute, i've had people ask what causes it, what treatment we have, allergies etc, and almost everyone understands after a few minutes of a quick explanation. if someone had told me a few years ago that their kid had autism, i would've been 'eh whats that then?'.

I've just read this thread after two days offline and haven't got much to say other than I agree with JJ. At least I thought I hadn't until I finished typing!

I also think that 'people with NT kids' don't necessarily have the rosy world being painted here. Kids aren't the only thing a parent's life is built around and I'm sure you don't necessarily realise that they may be suffering because their own parents are extremely ill, they've jsut discovered their DH needs a quadruple bypass or they've had an abnormal smear or a malignant breast lump.

I write from experience as I was in danger of being wrapped up in my own world of a 'NT' child who may not be since although she is 'educationally normal ' (is that a PC term?) or possibly extremely bright, she has problems with swallowing as some of you know which are incurable. I was horrified when I spent some time talking to mothers I had considered fairly close friends and realised both of them had had their worlds turned upside down recently, one whose parent had had a v bad stroke and another who was waiting for docs to decide whether treatment should be ocnt'd for her father, on top of her own abnormal smear even after having had laser treatment last year.

JJ - fI think maybe for some words it's a case of a few words too often IYKWIM. BTW I think it's totally OK to moan about all kids with all sorts of problems, and personally I wouldnt feel hurt if a mum moaned about her DD running everywhere when my 19month old can't stand up unaided let alone crawl or walk.
However can't promise I wouldn't sometimes feel a bit hurt that I'd love to have that problem rather than mine IYSWIM.

misdee, maybe it's sisters? Most of our conversation is normal sisters who have kids talk, too. Mine lives in the US and I'm in Switzerland. But we get to spend a few weeks together each year and talk regularly. I do miss her.

its not just sisters. i chat to loads of people, some with SN kids, some with 'normal' kids. we discuss everything, from normal things to the nightmare of hospitals. its a mum thing i guess. the way i see it, every child will have something that their parents will worry about. i will discuss and listen.

Sometimes I feel completly invisable

sorry thomcat. not ignoring u honest!! i know sometimes it can be one time too many of explaining the situation (i have explained thro gritted teeth many a time) but at the same time i dont just expect people to understand immediantly(sp?).
the worst day for me was when someone asked if my dd1 was a burns victim. i almost punched the bloke and then went to have a cry. i did explain to the insensitive fool what the problem was, and he did say sorry, but the way i see it is, eductaion education education. i'm now looking forward to explaining to my dd1 nursey teachers what creams she'll need when, different inhalors,to watch out for allergic reactions and also to let them know of her hsopital appointments.

Blimey! I seem to have opened up a can of worms here - sorry to those of you who have clearly got quite angry about it all. We have only recently entered the world of 'Special Needs', and also have 3 'Neurologically Typical' children. I do find the explaining difficult, and I do have a sense that we've found out who our real friends are in recent months. But lots of parents of NT children are wonderful, and dare I say it, there are SN parents out there who can be sort of negatively competitive, making you feel your problems are too insignificant to count, somehow.
As ever, it has to be worng to generalise, and there are echoes for me of all those other times in the last 7 years when I've felt different/exposed/inadequate/guilty etc. Like failing to breastfeed properly, going back to work, opting for state school, having a nanny. Everything we do for ourchildren seems SO important, and we love them SO much, it's hard to keep things in perspective at times.
At the moment we've also been agonising over whether to let our dd1 have violin lessons - now when/where/to whom would it be permissible to talk about that? Not with the parent of a child with hearing problems, I suppose, but should it be taboo where any child has developmental problems of any sort? I think probably not.
Sisters - I have two, one with (2 NT) children and one without, and they are the answer to many things.

Hurray at lat a conversation!! Cheers mate!
I know what you mean, all out kids have their own SN in one way or the other. I don't feel that people need an explanation from me most of the time but I imagine, perhaps I'm wrong, that mums like for example Davros & Jimjams feel peoples stares a bit more than most and I think if it was me getting the looks now and then I'd want to say, just on the odd occasion, F.off and leave us alone. No being could or would want to have to feel that had to justify their childs actions and sometimes patience is a little thin after years of people being ignorant. I'm sure JimJams and Davros have found themselves having to explain someting their chid may have done on more than one occasion to a perfect stranger????

Thomcat, I would love to have the problem of my son drinking too much milk as opposed to him not being able to drink it at all. I think that's normal. Right? We want things to be easier for our children... I think it's a truly unselfish desire. It's ok to want better things for our kids -- even if they're something we can't affect. Someone's going to shoot me here, but I think it's ok to feel bitter and annoyed at times. BUT I think this happens with everyone and everyone has a right to it.

Misdee, I want your friends. My friends are good, too, just not like my sister.

Sue, how is she? Is she having the surgery again? I thought it was all maybe...

its when u hear another parent say 'come away from that child, i dont know what they have' that hurts me the most.

thanks jmb1964

misdee- ds1 used to have severe eczema - now gone thank god- and yes it is hard I agree. Thank god we don't have to wet wrap anymore- I found it incredibly hard work- believe me I know for first hand experience that severe eczema places a huge toll on family life.

Anyway this has now gone way out of control. It's not about who has the hardest time, I've said earlier that I find it very hard to be around a lot of NT parents. I'm not saying it is anyone's fault. It's obviously my problem but one that I know my friends share. That is just the way it is. Of course other people have shitty lives. I can think of about 5 people off the top of my head who have a shittier time than me at the moment. TBH I'd far rather deal with autism than say cancer - who wouldn't? Even my friend with 4 totally normal kids has a more stressful time than me because geting out of the house with 4 young children is bloody hard work. When I moan about people I've dumped I'm talking about people who are so emvbarrassed by disability that they can barely even acknowledge my son's existence. Why would I even want to stay friend's with them?

What all this doesn't alter is that there is a gap. It's not a gap that can be filed by "explaining" autism, because in my experience and those of my friends the majority of people don't get it. I couldn't get near the couple on the campsite to give an autism lesson because they wouldn't come near us. I'm afraid that a lot of people simply find disability too uncomfortable to talk about - so what do I do- force a monologue down their throat whilst they're looking uncomfortable or not bother. Personally I preferred to spend the time drinking wine.

One of my best friends is permanently under pressure to go away with her friends for the weekend. She can't- it's not that she won't she can't. Her dh works abroad she has an NT 2 year old and an autistic 6 year old who screams every time she leaves the house. And yet for that she is accused of being over-protective, and not making enough effort. She rings me constantly complaining that her friends "don't get it". it's not any one's fault but it just comes back to the fact that ime the only people who really understand what it is like to have a non-verbal autistic child are those who have a non-verbal autistic child, so I prefer to spend my time with people who understand us.

Look I've never met Davros, but we tend to end up understanding what each other is saying - why? Because our children are very similar, and we face the same sort of problems when we step outside our front door. Now I have no idea what it is like to have a child with CP or for that matter DS butI do recognise what it is like to have to deal with statementing, finding decent SN nurseries, and to deal with ignorant members of the public- so again we have some shared ground and the gap between us isn't as great as it is between us and NT's.

Davros - would you like an invitation to join chatters? I may be able to wangle you one (no promises because I'm not a moderator, but I could beg ). It's very supportive- far more so than aut-uk- a mix of parents ranging from severe non-verbal autism to AS, also a few adult AS as well. We swap poo stories

The fact that this has got so out of hand demonstrates the problem really. Davros understands that I/we are not trying to be offensive about NT parents, we are just describing something that happens (not just to us to friends as well). How may people from the poor sink estate have friends in millionaires avenue? It's no different to that- just a reflection of different lifestyles and different priorities. If you scroll down to near the beginning you will see that I have said I can't be a very good friend to a lot of NT friends because I can't take a lot of their concerns seriously (and of course I can take someone have dodgy smears seriously- I'm talking about concerns like whether their child is popular or what mark they received for sucha and such a test at school- I;m sure they are genuine worries to them, but I just cant get concerned about them- hence I am a bad friend) . It does work both ways. It's difficult for them to be good friends to me and its difficult for me to be good friends to them.

Absolutley JJ . As I said in some form or other all our chidren have SN, be it like MissDee's little one - eczma, or your son not being able to drink milk, mine can't walk or crawl yet (she has Downs by the way), they are all things that as a mother worry us. They are our child particular problem and therefore our biggest worry in life and shouldn't be belittled by anyone. We all want the best for our kids and worry endlessley for them. However it's also normal when someone with piddly concerrns is moaning on and you have a massive issue occuring that you might get a bit impatien with their problem. I remember a friend crying and taking antidepressants because of another short ived romance and my other friend was going through her husband having an affair with her b.mate and leaving her bankrupt with 2 twin 6yr olds, I wanted to slap friend A and tell her that her problems were nothing in comparisson and to pull herslef together and get a grip. But then I'm a horrid old cow!!

Mis Dee - can't believe someone said that, sweet jesus, did you kill them stone dead??

i agree i'd rather spend my time drinking wine.

thomcat. i was just too shocked. she was having a very nasty allergic reaction at the time, fortuanatly it wasnt affecting her breathing, just she had huge red hives all over her body. i guess the fact the cheeky lil monkey was pulling her t-shirt up for all to see must have scared some people.

misdee - when ds1 was bad we were always asked if he'd been scalded as well. I don't know why but somehow Joe public was always better with the eczema explanations than the autism ones though- I do think it comes down to their embarrassment again. Somehow maybe "mental illness" is more embarrasing than physical maybe??? It was easy to engage people in conversation about eczema, but much harder about autism. Somehow eczema conversations flowed easier.

I agree with everything Thomcat has said (she is saying the same as I am trying to - but is managing to do it without upsetting everyone so she must be saying it better). Cheers mate!

and long live pulling up your t-shirt!!!!

Thinking about it some more- the friends I have now binned knew me when ds1 had severe eczema and they were fine with the eczema stuff and didn't say anything annoying at all. Their reaction to autism has been very different. Don't know why you'd have to ask them.

sod em them!!!! u'd think with the amount of publicity autism has these days as oppased to say 10years ago, that people would have a wee bit of understanding.

People do get all embaressed my SN don't they. Sometimes I just tell people straight out that Lottie has DS before they even try & guess what it is about her. I just say it, then move on with my constant chatter so they hardly even know I've said it!!!! Then it's out there and they can let it sink in and deal with it while I talk 'at' them for a minute!!!

maybe its just me, but i rarely notice people with DS much. i can spot a major buggy at a distance tho same as my sister.

exactly misdee. But then I think it comes back to this age old problem where for some people (not all) autistic chidren are seen as being less worthy than NT children. Actually this is recognised in law - if a disabled child is killed you get less compensation than you would do for a normal child (don't want to get into how I know that-suffice it to say its a horrendous story and yes I count my blessings- I have a lot of them). This is the attitude I have come up against a lot and this is why I find it so hard (written about this before)

I'm a major buggy spotter as well! I catch one out of the corner of my eye and think "oh look there's a major buggy" Wet wraps too "oh look tubifast"