fed up with parents of nt kids moaning

[sumum]

have seen thread on other board where parents are asking if they should be annoyed because their 5year old got level 2b in end of year report and seems to not listen. I mean really that is the level they should get at end of year 2 so why the worry. if my ds got that at seven I would be happy.

Also there was another thread with irrate mother that was upset her dc wasn't in the same class as her friend. How i wish that was all I had to worry about when it comes to class moves. Three meetings with school later and I am still worried how the transition will go in sept.

I know other parents worries are still worries to them but it just makes me and and a little

Riven - yes you can only carve out time if SS will help you. That was key for us and we simply couldn't do it if they hadn't opened very good respite provision that is ideal for ds1.

Before they opened the provision there was nothing - I'm not sure how it ended up being funded - I suspect because it wasn't entirely new (they changed an existing limited service) and because they were having to pay to send kids to the excellent provision in the neighbouring LA so it was costing them.

I know it's not the sort of thing that would be suitable for your dd but do you have an idea of what would work for you? Once the provision opened I knew what I wanted and that made it easier to go for it iyswim. Before then my requests were ineffective as I didn't really want any of the options on offer.

Thing is - I would never tell anyone that they can't moan about normal stuff - even though in my head I'm screaming please just shut up. As a result I am completely isolated because I really can't cope with it - apart from my tutors I see no-one. I have no-one to talk to, I have nothing to say to anyone (I'm sad/scared/exhausted/angry that's not going to change how many different ways can you say it). I've really tried hard to retain my sense of humour, but I'm just so tired. I can't even leave, god forbid I should die because what will happen to ds then?

In September I have to start applying for bursaries for dd1 to start school (she's been HE since birth) - her life has gone from an educational & social whirl to be nearly as isolated as me & that isn't fair. It seems unlikely that I'll be able to HE dd2 because I have nothing left in me.

DS' diagnosis has fucked my life(I'm just talking about the effect on me here - obviously his needs are far more important) - we've lost so much as a family. I'd challenge anyone to claim that normal worries about their NT children have led to redundancy, career loss, bankruptcy (sp?), marriage breakdown, health crisis ... loss of everything normal.

lol Riven - I worked in the health field, even if I had the opportunity I couldn't go back - major deficit of patience/sympathy.

Ho hum.

phlebas - do you have anyone in the same situation as you that you can talk to? I know you don't from your above post, but I wonder if you can find someone to be on the end of a phone who needs you as much as you need them - ime it's just a case of tracking down - in a non stalkery way of course - someone who is at a similar stage (what is your ds' dx?). I have a friend who has a dd who is similar to ds1 (different, but similar enough for us to have the same issues) and we do ring each other a lot and let rip. I know what you mean about screaming please just shut up in your head - and in that case I would be on the phone to my friend as soon as I arrived home and would tell her and she would get it. She might do the same to me the next day. We don't do anything more really than remind each other we are not isolated and that there is someone else who thinks and feels the same way because they are living a similar life. In the early days I met someone online who was going through dx as well and we used to chat a lot on the phone - in the same sort of way. We eventually met a few times, but our phone chats came first. I think those phone chats have been a lifeline really.

I also just do not worry about ds2 and ds3 in the same way. if I was immortal (now there's a thought ) I wouldn't actually worry about ds1. But I know that as an adult he is highly unlikely to have the skills to walk to the local shop and buy a bar of chocolate independently - he will be totally reliant on other people for the rest of his life. It's not ds1 who worries me - I know he can be happy and fulfilled and have a great life- it's the other people who are needed to ensure his life is happy and not utterly miserable. We actually hope that he retains his good looks (as he approaches puberty it's something that might go), not because we're totally shallow, but because we have noticed the way he looks makes other people warm to him and I suspect they are kinder to him because of it- it helps them see beyond the challenging behaviour.

I just do not have those sorts of worries about ds2 and ds2. Of course we have concerns about them and we have things that need to be sorted and dealt with, but underneath it we know that they will (touch wood- of course anything can happen) grow up to lead entirely independent lives. They will be able to buy a bar of chocolate alone in a corner shop - but more to the point they can create their own future- they will not be reliant on anyone else, and they certainly won't need someone else to create their whole life. If ever any of those factors come under threat then we will worry about them in the same way as we worry about ds1.

oh ha ha when I was looking at things to do work wise I realised I couldn't do anything that involved sympathising/empathising with normal every day worries as well. Not because I can't see that they might be a problem- just no energy to do it, and it would make me feel ill.

I;ve ahd the opposite expereince wrt to working in the sector- I couldn't go back and work in the shite units I used to be absed in but I find I have more empathy with parents and people in teh system.

MrsT I know what you mean WRT to not wanitng what was out there; there's nothing I would be happy for ds3 to receive ATM, we're lucky in that DH can make time in the day as he is self employed / student so instead we cover a CM for ds4 and use that to grab a coffee or whatever, it's doubly unlikely we will ever use residential SSD provisions here since I got to know the social worker running it through Uni (!!!).

At this stage I won't even allow myself to think beyond 16. I know we'll need to one day but we're not ready yet and i;ve never found any good in pushing things on. He's 7 next week. We're getting clearer ideas about ds1 at almost 11 but tbh they seem to centre around what we can't do- we can't risk an adult who is violent in the house with ds3, we can't satill be restraining him when we're 50 becuase it already takes 2 now. We won't lmopw yet how far his independence will progress anyhow but we have very firm boundaries now.

If we didn't have ds3 we'd probably be thinking oh you are ehre for life whatever you do, but it's not that easy. I'm high risk for osteoporosis as well becuase of my histories, and I need to be aorund and mobile for ds3 not damaged by ds1.

It's fun, balancing a severely aggressivve kid with ASD against a passive one with it

I must admit I also do the 'shut the f**k up' thing in my head -MIL is driving me insane telling me how stressed SIL is about organising her wedding.
With my logical hat on, I know that SIL has every right to be stressed, weddings are a nightmare to organise and it's a very real concern to her. However when dd1 is self-harming and DH and I are buckling under all the various pressures associated with dd's SN, it's hard to care sometimes.

That makes me sound awful, but I think we are only capable of dealing with so much, then we have nothing left to give.

I am really emotional today; it all feels too much to handle, yet I have just spent 15 minutes at the school gates reassuring another mum that she will cope with 2 under 5's over the summer.

siblingrivalry oh I know that feeling, my SIL is a drama queen and I was well pissed of when she compared thw worry about her dd's wedding to the worry we have......wtf

oh yes same sil who made a drama out of the fact that I needed to know if the church had wheelchair access

2shoes -how did you keep your cool?!
I think some people are definitely missing the sensitivity chip.
My SIL has a really kind heart but gets totally stressed and dramatic about things that wouldn't even be on my radar (I'm thinking of the tizz she got into about when she had to make a quick decision about suit hire for the men!)

Then MIL will say "Oh, I feel so sorry for SIL, she doesn't cope well with stress"

I have so little energy - reaching out to people feels impossible. I feel guilty that I haven't got much to give back on top of everything else.

It's pretty much exactly a year since the whole diagnosis thing started & I'm definitely feeling worse than usual.

No, I can understand that. In the early days (and a year is very early days) I really needed to be able to offload, luckily I found someone who was going through exactly the same. She lived in a different part of the country but we had the same sort of appointments at the same sort of time. We didn't need to give anything back, we could just tell each other our stories.

I'm in a similar position to phlebas.

something I have seen people on this board say time and again is that the pre-school years are the hardest. obviously the dx is in process or still raw.

and the grief that goes with that - the realisation that the life you thought you would have is gone, never to return, and that the life you have now is one full of uncertainty and battles.

I too just withdrew from everything. there was one toddler group I used to go to (used ot force myself to sometimes) when dd1 was smaller - I had started thee when she was 15 months or so, and everyone had got used to her, really. then we moved (for dd1's education) and that was no longer available. and I couldn't face starting at another group - dd1 was rising 5 by then, and to begin all over again with people getting to know her etc was too much to face.

most of my friends are still child-free. and so I don't moan to them too much -they can't even begin to understand, and anyway, children are a pretty boring topic to those without children at the best of times. so I have mostly lost touch with all my friends too.

life was just a lot easier, in so many ways, when I did not have to face the world and other people's children.

I think I am cautiously getting over that now. dd1 is nearly 6. she is finally well settled at an excellent SN school, so that battle is over (until annual review )

and now I turn around, and dd2 is starting pre-school in September. where did all that time go I feel as though she has been cheated of her babyhood - endless rounds of form filling, tribunal preparing, house moving, etc. and now she is so grown up.

we have had no help from SS at all, ever. we are about to employ a nanny (and I thank god we can afford to) to try to give us all some space at times. to give us the opportunity to go out without dd1, for both her sake and ours, and more importantly for dd2's sake. she deserves soem time that is not all about dd1.

but, like MrsT, I suspect those first few outings will be more full of sadness and regret for me than anyhting else. sadness that my life will not ever be "normal", and that, as dd1 gets older still, there will be fewer and fewer "proper" family days out, because meeting the needs of everyone will not be possible.

TBH I still don't go out of my way to hang around crowds of NT 11 year olds. It's not painful in the way it was, but it would be a bit like picking at a scab iykwim. It's fine now with NT kids of different ages - but the same age as ds1 is too much.