The realisation that it doesn't matter what I do, how much help, therapy, support and input i have

[bialystockandbloom]

Ds will always be autistic, and the older he gets the more apparent it is, the more other children realise he is different and odd, the more he realises he is different and odd, and doesn't understand it, and the more ostracised he will become

He is starting school in September, perhaps I'm just getting nervous about this, and in the process of appealing his rubbish statement, and also we've had a hitch in our ABA programme as no tutors, plus a disastrous playdate yesterday where ds was horribly bitten (by a severely dysfunctional but nt child, a long story!), so maybe a combination of depressing factors. But his disabillity, and condition have been so much more evident to me in the last couple of weeks, and it is all I can do to stop crying all the time when I think about my lovely, trusting, naive little boy thrown into a harsh south London playground, unable to cope, to interact, to even know if children are being nice or nasty to him.

Doesn't matter how much we 'practice' playing superheroes etc, he will never genuinely 'get it', just go along with the games without understanding them in the way nt children do. I wonder what's the point of us bothering, but then of course we can't 'give up' on him.

Please someone tell me to get a grip.

yes, very little emotional support - my mum said I was doing a great job recently but that's really the only time it has been mentioned.

My MIL thinks that ds is absolutely fine & that the diagnosis/doctors/therapists/ABA is just attention seeking by me. She thinks that ds is disgusting & dirty because he isn't properly toilet trained & that's my fault, it suits me; despite the fact that I've somehow managed to get two other children trained already. She tells my dh these things regularly & he goes along with it for an easy life.

dh thinks that because he pays the ABA bills that's he needs to do - somehow everything will be magically okay. We've been doing it for two years but he still reinforces the wrong stuff, ignores teaching procedure, responds to behaviour we're trying to extinguish etc. I despair & wonder if he secretly agrees with MIL & thinks the whole thing is a vanity exercise for me because he actively undermines the programme.

I've just had ds' most recent test scores ... he's still testing a year behind in most areas of expressive language (receptive is even weaker). He & dd2 fight/shout/scream constantly & as a result ds2 doesn't sleep. Melatonin get ds1 to sleep but I'm still up at least twice in the night, I'm often the only person who can deal with him.

I fantasise about talking the baby & leaving but ds1 would be totally fucked without me - no-one else will step up & do the work - I'd be a pretty crap person if I was willing to do that to him. I have never felt so alone, scared or hopeless in my life.

OMG enid that is almost exactly how my life is atm.

I've never had a word of support really from my family - if I'm ever openly moaning I mean asking for support negative my mum or sister say things like "well you chose to have two children" or my mum's favourite "well I coped with three of you". Yes but none of them were autistic!!!! It is widely recognised how brilliantly ds has done through ABA, but I think they think it's a sort of cure, and now he's 'ok'.

dh thinks that because he pays the ABA bills that's he needs to do - somehow everything will be magically okay. We've been doing it for two years but he still reinforces the wrong stuff, ignores teaching procedure, responds to behaviour we're trying to extinguish etc.

yes yes yes! DP does try and come to ABA team meetings but still doesn't get it - or perhaps it's just too much like hard work. Sigh. Not to mention the months of slog I've put in so far on the statutory assessment, statementing, appeal etc.

The thing is that being a parent to a child with asd is hard to start with. Sorting out all the school/statementing crap is hard. Pulling together and keeping together an ABA programme is hard. Being fully consistent with the approach is hard. And of course it's the best thing for our ds's. But sometimes you just want someone else to do some of this fucking hard work for a bit.

I sometimes think how blissfully easy my life would be if I just went off with dd. But of course how could I. The thought that someone other than me would be responsible for ds is unthinkable. In my darkest thoughts I worry about getting ill and dying (I am actually a bit of a hypochondriac) and the intricate and extensive instructions I'd leave for ds's care

louey thanks for your message. Wow I am impressed your ds is reading!

God please don't worry about your ds2! 7 weeks is easily within normal range for smiling! And even if it wasn't, it won't mean anything. I'm sure I've also read that early babies, notwithstanding corrected ages, are often on the later side of average to reach 'milestones'.

Though ha ha ha at milestones anyway. Ds reached all of his. Smiled at 6 weeks exactly. Rolled, sat up, crawled, walked, spoke, pointed, waved etc all within normal range. But the fact that I was so closely monitoring this shows that (even accounting for PFB syndrome) somewhere I must have known something was amiss - think I knew something not right but was desperately trying to convince myself all was ok by the fact he was 'reaching milestones'.

Anyway the ramble is just to show you that imho not only are milestones not important (you'll know by the time he is 12 months) , 7 weeks corrected age is still ok anyway.