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Feeling isolated due to ds's Aspergers. What, if anything, can I do?

(60 Posts)
Aloha Mon 26-Feb-07 11:32:06

Am finding the whole school thing a bit hard atm. His teacher and the learning support staff have been great recently - really taken stuff on board and are helping him and recognising his many talents as well as his difficulties etc and he is doing well.
However, I feel really out of the loop because of his Aspergers and I feel really raw and hurt because of it.
For example, he went to a party on Sunday. That was great, he enjoyed it a lot because there was an magician, which he loves, so it was very structured. I was delighted he was invited, though I suspect a lot of it is because he has a September birthday and I had a party at my house right at the beginning of reception to which I invited all the children in his class at the time, so ensuring reciprocal invitations. However, there is a very active going back for tea/to play circuit in his class from which ds is emphatically not included. As all the other parents arrived to pick up from the party there was a big flurry of 'Oh, we must get Sam and Joe together this week!' 'Yes, great, Friday?' etc and I just stood there blinking away tears! Ds never gets invited and when I pluck up courage to ask someone (three times so far) and said, 'I know ds would love it if X could come and play one day, maybe next weeek?' I have got, 'Oh, yes, lovely. It would be nice to arrange something sometime', but nothing else is ever said or arranged. I don't want to force some poor unwilling kid or even an unwilling parent to pitch up at our house, so I don't know what to do. I feel under HUGE pressure because the paed who diagnosed ds said to me something like, 'It will be your job to create a social life for your ds'.
SO please, parents of other children who are dyspraxic, aspergers etc in mainstream, how do you cope? Does it get better as they get older, or - heaven help me - worse? Or do I just need a rhino hide?

Jimjams2 Mon 26-Feb-07 11:42:15

I think the paed was a bit daft really. Of course its not all on you- some of it has to come from your ds as well- specifically what he wants. Does your ds want to socialise with people from school? I'd start from that really, and if not try and find people he does want to socialise with (which will probably be other kids with AS tbh). Are you a member of the NAS? They seem to be setting up quite a bit for AS locally- after school clubs, social groups etc.

If your ds does want to socialise with people from school then I'd just ring up his choice of friend and provide a choice of dates. eg "would x like to come to tea, Tuesday or Friday would be good for us".

I was talking to a friend last night who has a dd with AS. She said she's spent years inviting kids back to tea. Her dd spends 5 or 10 minutes with them, then goes off by herself leaving my friend to play wiith these kids. She said she has children wanting to come to tea to play with her, not her dd, and she feels like she's getting too old for it, so she's stopping it!

Aloha Mon 26-Feb-07 11:44:54

He does seem to want children to play with at home, but I am terrified of being seen to be pushing unwilling kids to come here, which would be counterproductive. And tbh, I feel left out too! I think probably parents in special schools are more inclusively friendly. I am beginning to feel that unless your kid fits with their kid, people don't really want to know you. I shouldn't care, but it seems I do.

PeachyClair Mon 26-Feb-07 11:48:28

hiya

this all sounds so familiar

Do you know that the NAS is graduallys etting up a befriender service across the UK? DS1 is on the waiting list already! Just someone who is his for a few hours a week- wonderful!!!

Saker Mon 26-Feb-07 11:48:47

Oh Aloha I'm sorry you are finding it hard. Does your Ds mind as much as you? and is he keen to have other children round to tea? One of the things I sometimes have to remind myself is that Ds2 doesn't actually mind some of the things that upset me for him, or sometimes isn't even aware of them.

In terms of the playdates, I have found with my NT Ds1 that I need to be quite specific when inviting children back - if I was the parent of a child you were inviting I would not feel I could say to you "Can X come round on Tuesday?" I would wait for you to follow up with a specific invitation. So you might like to say directly "How would Tuesday be?" rather than just "sometime".

But it is just hard I am sure. I am somewhat protected by Ds2 being in a special unit so I am not there at pick up time as he goes in a taxi and there are no playdates anyway. But I still feel sad when I see the other kids that DS2 is contemporary with going into school with Ds1 and realise quite how far behind them all he is.

Jimjams2 Mon 26-Feb-07 11:50:47

The problem with special schools is that there's no school gates (most people go by transport) and there are no tea dates (no-one could cope!).

I think trying a couple of dates couldn't go amiss. One of ds2's classmates has just moved back from overseas- I was really pleased when his mum rang up and asked whether ds2 wanted to go. DS2 was happy to- he loved it- I think tbh most 5 year olds are (unless they're shy or something)- the social hierarchies kick in with vengeance later.

ScummyMummy Mon 26-Feb-07 11:51:07

Ok- I think you need a tiny bit more rhinohidedness but mostly you just need to be more specific. Don't say "X would love it if", say "can X come for tea on Thursday at 3"? or whenever. If you get a "no that's not a good time" ask when would be a good time and arrange it there and then on the spot. I think you may be being a little too tentative because you are worried.

Bink Mon 26-Feb-07 12:00:01

I think the rhino hide is vital anyway (actually I read posts from people who have no developmental concerns about their children and still demonstrably need the rhino hide too, for other stuff ... so perhaps it should be handed out with the Bounty Pregnancy Diary)

I do understand the burden on you when other parents don't follow up your invitations .. but it may be no more than them not quite knowing whether you mean it? Presumably your ds isn't following up himself - most NT children (from my experience) are the real lead-takers here - even from reception my dd (entirely NT) was practically doing the organising, while it totally passed ds by (= grand total of reception playdates for him: single figures, I'd say.) So it's almost as if NT-parents don't expect to need to follow up, because the children will do it. Which unfortunately means that yes, you will need to. If I had realised this, ds would have had a far better social life back then - and what was always noticeable is that the other parents were always lovely with him - the worst I could ever say was that they were almost too supportive and encouraging (eg no-one would ever make a point of saying "oh isn't he doing well" about someone else's NT child). But I still thought it was so kind to say that.

It may sort of get better as he gets older, because playdates tend to tail off for everyone once school is more tiring & there's homework and music and so on - so you won't feel so much out of the (very particular) swim as you do now.

ScummyMummy Mon 26-Feb-07 12:00:37

x posts with others. i do think it sounds like you are getting in a state about this a bit (understandably) and maybe projecting unwillingness on the other parents/kids. I hope so, anyway as your son sounds lovely. I am v disorganised about playdates and always appreciate direct offers with dates, times etc.

Aloha Mon 26-Feb-07 12:00:44

I have to admit I do earwig other people's conversations and it really is the case that Mum1 says 'fancy getting Stan and Reg together next week?' and Mum2 says, 'Ooh, yes, Thursday? Friday?'
Anyone I talk to (carefully selected nice mummies and kids ds says he is friends with) always seems to say, 'Ah, yes, that would be nice. We must do it sometime,' and I feel awkward about pinning them to the wall and saying, 'when? when? Come ON!' in manner of Jeremy Paxman. Feel that I must give them a get-out clause so they don't have to say, 'actually little Reg says he'd rather poke out his eyes with a light sabre'

Aloha Mon 26-Feb-07 12:02:03

And yes, I do realise it is hard because ds doesn't take the lead because he just doesn't understand that sort of interaction.

PeachyClair Mon 26-Feb-07 12:02:11

Yeah but i always say we must get a date arranged vaguely- I'm just as despearte as you are, just worried about seeming too pushy

Bugsy2 Mon 26-Feb-07 12:05:02

Aw Aloha, I know how you feel. I had no idea how many playdates kids had until DD started school.
Poor old DS (7 & only v recently diagnosed with Aspergers) has had about 5 playdates in the last 3 years. TBH, he often doesn't want to do any as he just needs to collapse when he gets home following the stress at school. However, I've been a bit more proactive recently & we have done 2 since Christmas!!!!

Wish I could say something more helpful, but don't feel too pressured.

puddle Mon 26-Feb-07 12:05:13

Perhaps you could ask the teacher who your ds clicks with at school? or maybe ask them who he MIGHT click with if they had some time one to one (from my experience sometimes the more cerebral - for want of a better word - children don't latch on to each other in the general mayhem of the classroom but get on better when they are on their own).

puddle Mon 26-Feb-07 12:06:22

Sorry part of my post got lost - what it said was that half the problem appears to be your worry about press-ganging the child into playing with your ds!

foxinsocks Mon 26-Feb-07 12:06:43

I'm sorry you feel this way aloha - my friend has a son with Aspergers and she often posts on here. I'll point her in your direction - her lovely son is in yr2 now so she has been through all of this!

Aloha Mon 26-Feb-07 12:06:55

I think it also rubs it in how different ds is to see all the other kids going off in twos every afternoon, and the other mothers practically pouncing on each other with glee to arrange more meet ups. Feel really sad about it. It is huge downside of working at home and doing the school pickup!

ScummyMummy Mon 26-Feb-07 12:09:13

No- don't let give them get out clauses. They don't need them as you and your son are perfectly lovely nice people. Next time say "Brilliant! How about Thursday?" The more i hear the more i feel this is definitely a rhino hide/you feeling unduly sensitive thing. i mean that in the nicest possible way, btw. You must grow your nose horn forthwith and there will be some delighted SE London kids and parents, I am sure.

Aloha Mon 26-Feb-07 12:09:21

Oh, I've asked the teacher and his lSA about ten times and always get the same answer, 'oh, he plays with everyone really but nobody in particular'. Ds says certain boys are his friends, but god knows what he means by that.
And suppose they really don't want to come? It's not impossible, and the last thing I want is for a child to come unwillingly. I'm tryign to make things better for ds, not worse!

Aloha Mon 26-Feb-07 12:09:55

Do appreciate all comments though. I don't mean to sound negative. It's so bloody difficult!

ScummyMummy Mon 26-Feb-07 12:10:14

See- the bugster has done it. So can you.

ScummyMummy Mon 26-Feb-07 12:11:10

They will want to come. Don't sell yourself or your boy short, babe.

foxinsocks Mon 26-Feb-07 12:11:23

maybe they just don't know you well enough yet

I tend to say that 'oh we must put that in the diary' rather than 'let's do wednesday' with parents I'm not as familiar with iyswim

Bugsy2 Mon 26-Feb-07 12:14:54

Most of my DS's playdates have been with girls. He finds the pervasive football culture which dominates the boys friendships in his class impossible to cope with. However, he is closeish friends with a few girls, who tolerate him in a motherly kind of way.
Does your DS ever talk about any of the girls Aloha? Could that be an option?

Aloha Mon 26-Feb-07 12:16:10

No, they probably don't know me as well...but that's maybe because we aren't part of the playdate scene (oh, how ghastly that sounds)...so it's a bit catch 22. And yes, the 'oh yes, lovely to do that sometime/we must put that in the diary' is very much the response I've got. Have now enlisted dh to try as I'm getting over sensitive about it
And I have to admit am sitting here in tears over it all!

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