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Not quite ASD not quite NT very isolated me!

(16 Posts)
roundwindow Sat 11-Jul-09 19:32:09

Hi there,

DS1 (5) has been being assessed for special needs for the past year. So far the Paed cites a global developmental delay and he's got on the SN register at school. Lots of the difficulties he experiences seem to be similar to those with ASDs, eg, finds it very difficult to interact with peers, receptive language difficulties, becomes anxious at changes in routine, has sensory issues, etc. We've got his (disco?) assessment coming up in August. Gotta love that acromym grin. I lurked on here loads and have always found the experiences you all share to be really helpful.

Thing is, I don't really think he's 'extreme enough' to get a diagnosis judging from sort of things the Paed has been saying. And his Dad and me are fine with that... we feel that as long as he's getting the support and understanding he needs (his school have been brilliant so far) then all's as well as it can be.

But the ongoing issue I'm experiencing as his mum is the isolation. Whenever we're anywhere with other mums and their children it's becoming more and more apparent the older he gets that he's just a bit weird eccentric. He talks in a weird baby voice half the time (especially if I'm trying to talk to anyone), licks strange things, spins things for long stretches of time, needs reminding to not put his hands down his trousers in public, talks suddenly to unsuspecting grown-ups about garden power tools, etc. All pretty harmless to me, I'm more than happy to accept his quirks but I'm a bit of a sensitive soul myself and find others' reactions to him quite hurtful.

Nobody's said anything too horrible but it's the looks and the more blatant reactions of other children and fact that I always have to break away from any conversations anyway... just leaves me feeling sad We were at a party this afternoon and it was the same old story. Being in reception, he has been invited to lots of parties (I always feel quite happy at this inclusion), which I used to avoid for his sake (he found them quite stressful) but more recently have started to go to as he's come round to the idea, understands about celebrating people's birthdays and always says he wants to go (I suspect mainly because he's cottoned on the likelihood that there'll be sweets involved!). But generally I've gone along with DSs indifference to playdates/parties etc. and gone along with the more solitary types of things he prefers to do at weekends and after school. He just seems so much more relaxed and happier this way.

As a result I've spent much of the past school year feeling a bit sad and lonely that I haven't got to know many of the other mums yet because we're relatively new to this area so I would like to make some more friends. But it seems that any activity which would enable this to happen is deeply incompatible with how present and accepting DS needs me to be as a mother. There feels to be a horrible conflict of needs between me wanting to 'fit in' get to know people, make friends, become part of a community but my lovely DS not being the 'fitting in' kind.

Just don't know how to help myself become less isolated... do any of you wise, lovely people have any similar experiences which might resonate?

PeachyTheRiverParrettHarlot Sat 11-Jul-09 19:36:35

All I can say is <<hugs>>, am in a smiliar palce myself- boys have DX's but we're newish to this area (4 yeras) and its impossible to maintain friendships so very lonely

The SN boards here make up for a lot though (though would love a RL friend less that 60 miles away to sahre a bottle of wine with sometimes)

roundwindow Sat 11-Jul-09 19:40:31

Hi Peachy, thanks for the hugs, lovely to just hear that someone understands smile are your boys ASD?

PeachyTheRiverParrettHarlot Sat 11-Jul-09 19:45:32

I have 4; ds1 is Aspergers / HFA, ds3 is ASD and attends a special schools. DS3 has dyspraxia we think but is OK, ds4 is a baby still (well 15 months LOL- MY baby!)

I don't find peoples reaction to ds3 too bad though invitations / aprty acceptances vanished as we went into Yr1 of MS (he then left) but its a competitive type church school so I sort of understand even if I think hmm

DS1 though seems NT until you get to know him and thats where we struggle I think.

roundwindow Sat 11-Jul-09 19:51:26

I suppose I very naively assumed that if you have a DX there's this wonderful world out there of parent support groups/organised activities/social events etc so you never have to struggle on alone again. But I imagine the reality doesn't match up to that at all sad

Phoenix4725 Sat 11-Jul-09 20:13:12

sadly i have found that at some sn groups been to there is almost a heirachy spelling and as ds does not fit it can be just as isolating as a meet up with nt

juliaw Sat 11-Jul-09 20:38:15

I am lucky as DS3 (ASD) is my youngest and we have made friends through our older children who now have children similar age to DS3, so I tend to go to things where Mums I know will be. However that is not to say I don't feel isolated when I get there as I have to stick to him like glue, he does not interact with other kids so no opportunity to strike up a conversation with new parents etc. My best suggestions would be either to identify one child your DS gets on ok with (the school might be able to identify a suitable child with obliging parent) and invite for a 1:1 "playdate" - which you might have to structure eg a planned activity and keep it short - that might lead to you being able to meet one parent - perhaps the parent could come along too and you could try and choose an activity where you might be able to chat to that one parent. The other suggestion would be to arrange a coffee morning either at school or at a local cafe during school hours eg 9.30 where you can meet mums without your DS being there. Even with my NT children, I found it took a year or more to get to know other parents - it was only when my children made established friendships that I began to feel their parents were my friends and that could be a way off for your son. Lots of Mums probably feel the same as you and if you stuck a notice on the wall for a coffee morning you might be surprised how many other Mums sign up to come. They are always very popular at our school, we also arrange nights out each term. It just takes someone to put the notice up on the wall and book the restaurant.

cjones2979 Sat 11-Jul-09 21:17:01

I know how you feel roundwindow.

My DS1 (ASD) is 5 and currently in reception and I don't really know any of the other mums and feel quite lonely too.

I blame the school for this though as for the first 6 months of this school year DS1 did not attend full time (they said they wanted to gradually integrate him into school hmm and he started off attending an hour a day - even though he had been attending nursery since his 2nd birthday for 2hrs 40 mins a day - but personally I know its because they are greedy bastards he wasn't statemented at the time so they didn't have the funding), but it was only when his statement was received giving them 25 hours of funding that he was allowed to go full time (march this year), so until then I had been dropping him off 15 mins later than all the other kids, and picking him up at different times throughout the day, so never got to see the other mums.

Anyway, just when I had started to say 'hello' to a few of them, school decided that due to DS1's behaviour (caused by them changing things around without preparing him properly!), it would be best for him to be picked up early again for a while !! angry

Whereabouts in the country are you, just of interest?? You never know, we might be close enough to meet up for that bottle of wine! grin

roundwindow Sat 11-Jul-09 22:15:39

juliaw: some great ideas, thanks for posting.

cjones: again, good to know it's not just me. I have a similar experience in that DS has been going back to his preschool for 2 afternoons a week (at school's suggestion, they have very good links with the preschool) so he can have some opportunity to mix with peers in a less pressured environment. It's been really good, but I've missed out on so many newsletters/notices/schoolgate chats just on those 2 afternoons that I can only imagine how out of things you must feel with your setup.

I'm in South Lincs/Cambridgeshire btw. Lived in London before that and still really miss it hence my feelings of isolation. Wine would be great. virtual if it has to be grin

cjones2979 Sat 11-Jul-09 22:31:22

Thats a shame, I'm in Surrey so we're too far away !!

Virtual wine it's gonna have to be grin

White, Red or Rose ??!!!

roundwindow Sat 11-Jul-09 22:36:13

Well seeing as we're in the realm of our imaginations let it be champagne!

cjones2979 Sat 11-Jul-09 23:08:25

Why not !!!

Bring on the bubbles.....grin

NotPlayingAnyMore Sun 12-Jul-09 00:53:15

I wish we lived closer, roundwindow, because your DS and mine (7) sound like soul mates grin

I too am a loner at the school gate. I'm about to contact a local support group myself though, who hold regular evenings at local soft play centres, as it would be nice to be somewhere less judgemental!

PeachyTheRiverParrettHarlot Sun 12-Jul-09 13:23:12

There are support groups here, but they don't accept siblings to attend and my youngest is still too small, polsu there's nobody to leave him with anyway.

I do find ways of doing bits- DH works from home until September which helps 9though if he takes an order it ahs to be done immediately so plans can fail) but i've been volunteering at the school one afternoon a week, was on the PTA when ds3 was in MS (the Juniors dont have one and the SNU one is quite a devent drive away- about 40 minutes).

I have booked a CM two morning a week next year, ds3'sold one. I want to get out and do a bit of volunteer work, maybe have lunch with dh occasionally- the only time i've not ahd ds3 by my side apart from that one afternoon at school a week is when I sat my uni finals just over a year ago- he's a separation anxiety nuightmare ds4 LOL

Minniethemoocher Sun 12-Jul-09 17:49:00

Feel the same here too. DD has an "informal" that is not confirmed in writing diagnosis of ASD. She is 6 and has no friends at school and so neither do I as we don't have "play dates".

I feel sad and isolated at the school gates. Not helped by the fact that I am naturally quite and shy anyway...

Find MN somewhere to have a little chat!

manyhands Mon 13-Jul-09 07:20:31

I feel the same way as there are only 30 kids in ds school. He tends to make friends then fall one with them and their Mum avoids us. The worse one was when I got quite school to his then best frinds Mum, until her daughter said ds had bit her. This I know was a lie to make it worse as they were all playing in the paddling pool along with my 3 year old so were supervised all the time. Well, I start work in September so I suppose I needn't worry but it would have been nice to have made friends as am new to the area.

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