So you fought and got what you wanted

[asdx2]

and still believe that the provision was the not only the right one but also the best of its ilk.
Then you sit through two and half hours detailing how your son is falling apart and question what now and question your own judgement and your ability to be your child's advocate
Feeling gutted tonight.

sorry to hear you're feeling gutted asdx2. i'm constantly questioning my own judgement too and feel overwhelmed with the number of decisions to make on a daily basis regarding his provision (we're doing ABA at home). Having to fight for it in the first place obviously only adds to the stress.

Its not your ability that is questionable - you can only do your best & that is exactly what you have done.

Sadly sometimes whatever effort, therapy or support we put in place it may not change or alter how our children can function or cope.. or maybe they are just not ready to cope just at the moment.
Feeling gutted is allowed, but you are your childs best advocate & when you re gather your thoughts & your strength you will go back to the drawing board & take a fresh look.

Take care & take some time for yourself

I don't really know what to say, I don't feel like anything I could say would cheer you up but I didn't want to read and run...

Try not to be so hard on yourself. The fact that you fight so hard for your DS shows what an amazing parent you are. Whatever is happening now is not your doing, you've only done your best because you love him and that's exactly the way it should be.

Sorry you're feeling so low...

Glass of wine?

ASD what's happened?

Sometimes there aren;t answers: othing that fits within the realms of vaguely possible anyay. So we do our best. In particular, you do your best. You have been everything your son is needed but there's other people in the deal and sadly, unless everyone pulls together (and that ahs to include both LEA and basic luck) things go tits up.

Wine, love, and stop beating yourself up.

You do a good job

God, it's such a nightmare isn't it? There is literally no one to advise or help us through all this and we are left making decisions which we should really be able to trust those paid for their expertise to make. But we can't, because we care and because we care we are dragged into a life of constant battles and indignity, while making decisions about our children that are either bold and accurate or will prove to be embarrassing mistakes.

All we have to guide us is our knowledge of and love for our children. Whatever we do, we do for the best of reasons and we learn. If something goes wrong we put it right. If things fall down, we put them back together.

But NONE of this is your fault. Without you there would be nothing.

I feel for you as I've felt that feeling of despair too often but you will go on and sort this out because we don't really have a choice. We are all they have got.

But give yourself some breathing space tonight at least.

Ds gets fantastic support, 1 to 1 ASD specialist TA in the best ASD resource in the County in a school that bends over backwards to accommodate him.
He can't get better in this county, his 1 to 1 support is exceptional for our LEA as in the resource 1 to 2 is the norm and even some lessons independently for some.
School and I work in partnership at all times and there is mutual respect. But ds is shutting down and neither school nor I know how to help.
Psych support requested but it won't be next week and referral back to paed in the pipeline.
Ds no longer speaks, I thought initially he was refusing but now school and I have come to the conclusion he isn't refusing he has lost his ability and he is losing his ability to understand spoken instructions not only the academics but simple things like maths is in room two today.
I want to cry and rant at the unfairness of it all at the same time as being scared to death and worried sick.I think I'm falling to bits at a time when I need to be stronger than ever.

Of course you are blody scared ASD, who woudln;t be?

Fist I will say ds3, albeit younger, has done this regularly for years: shuts down for a bit, panics the life from us- and it resolves. It's always due to soem stressor we haven't picked up on: once it was flags for the Ryder Cup.

So don;t give up.

But it may be a reaction to adolescence or a coping strategy. technically a regression at this age neeeds to be seen by a PAed, and I would follow that through JIC. Chances of it being anything sinister are tiny though- but if it was and I didn't say i'd feel awful.

You can't really know what's going on his head- he may have a crush that he is dealing with this way, anything- but it will tkae time to resolve. Whichever, in no way is it caused by you and if it is something that needs more work, he has the perfect system there to pick him up which is hugely wonderful.

Sorry you are having such a stressful time, no matter how hard we fight we cannot solve everything. Agree with peachy about getting him checked over. Could he be depressed, as that can cause unresponsiveness.

hi asdx2. So sorry to hear about this. All that work wasn't worthless though, even though it might feel that way. Imagine if he was like this but with poor provision. You'd have to start the whole educational fight now, and still wouldn't know if it was going to succeed. This way, you know that when things do improve, he has what he needs ready at school. And in the unlikely event of it being hard to improve things, you'll have a strong case for escalating provision, even private or weekly boarding if need be.

I hope you get to see the paed quickly. It might be that there's a medication to help. A friend's dc was transformed with risperidone when he became hyper anxious and not able to function. I also heard a similar story about Prozac.

Ds is 16 next week puberty started early (10) and I would pretty much hazard a guess that it's over and done with now.
He is man size and shape and appears to have stopped growing.
He has never shown any interest in boys or girls ever really he prefers to keep everybody well away.
Nowadays he rarely looks in the direction of anybody either in his presence or even speaking directly to him
He hasn't ever been curious about sex although he has had sex education delivered in a way sensitive to his needs and understanding.
On you tube say, he prefers to watch football controversies as opposed to anything slightly risque.
I can't think what has triggered this he had flu before Christmas but the speech was going before that.
I'm going to send myself crazy no doubt because ds can't tell me and even though he could write it down he won't recognise what's wrong anyway.

Risperidone would be my choice if we ever medicated- read too much negative about prozac and adolecescents (though it quite literally saved dh's life when he was ill).
Risperidone also IIRC licewnsed for ASD.

OK I know your ds has a lot more complex ASD than I ever had but I was about 16 when I had my first crush: Mum was convinced I was gay (but then I am that ds1 is so - heck who cares). It could be. But whatever it is I can sure as heck guarantee it's not you and all that you have done has made things better.

What was it you told me eysterday about fighting for our LOs? Well listen to me now- this is the downside. We learn that it is all up to us. but it isn;t is it? So much is not. And then we have to elarn to accept which is exactly what we have taught ourselves not to do.....

You are amazing. tonight ds1 smashed up my kitchen (well fittings intact but that's about it). And not once after what you said ysterday did I let him see I was frightened. I even managed to keep control enough to get ds2 to video it in for the DLA bods (as stills). You were in my head and you helped me a lot.

Now help yourself and accept that your ds isn;t in your control, only his support is. Which is sorted.

Hugs X

You have everything there for him, ready for when he is.. You have done a fantastic job.

I know you want to and for the very very best reasons .. But you can't just 'mum' this at the moment.

I can't add anything more to whathad already been said.. But I wish I could wave that magic wand for you. X

I have no advice;just wanted to say you sound like an excellent mum who has done everything in her power to help her son and will continue to do so

Research shows that this sort of behaviour is prevalent in individuals age 15-30. I know that this might seem frightening to think that it might continue til he's 30 (it does normally settle sooner than that!)... but what I mean is that at just 16 you have no idea what goes on in any young man's head, let alone someone with ASD. I'm not saying it's hormones alone, but they will surely be playing a part. Even though puberty hit early, maybe it's peaking now?!

Sorry that this might seem futile to you, but I just want you to know that whatever is going on with him... it's not YOU. You sound like an amazing mum and he is very lucky to have you. It must be so hard not knowing, so frustrating, and so heartbreaking... but you're doing a great job so far. Try and stay positive, for you own sanity :(

Taysh has a point you know: if he's started puberty at 13 would you have written off adolesnce and it's glorious effects at 19? becuase tbh the 19 year olds I know are quite often hormonal bunches of acne and shyness at that age.

Chuck in ASD and it's a potent mix, no? As is anything with our kids of course. Who knows what we will get next?

Ooooh. Asdx - this sounds so awful and frightening for you - and for DS.

Asd... Have been thinking about you last night.. Obviously this does need looking into.. ( but being the mum you are, you'll already have this covered or well on the way) so I'm not saying it is just a teen thing in the mix with asd.

But I have ds1 ( almost 16) .. He is NT .. Before I sound like I'm running him down he's lovely.. But I can tell you what he is like at the moment ( and so are a lot of his friends.. Us mums all moan about them lol).

Everything is on his terms, he sees little point in a lot of things and so just doesn't do them. He talks on his terms and regularly grunts at best. He is working out who he is and who he is going to be and adults are pretty insignificant....

So all teen stuff really.. But if I mix what I see in ds1 with ds2 ( asd).. I can see ds2 going that extra mile with shutting off from the world.. He at 12 is already starting, we are experiencing far more shutdowns than meltdowns these days.. I'm not sure if it's because we have strategies that work for meltdowns... And I can't seem to do much about the shutdowns.
His teachers are already expressing concern that he is more non compliant, and it's far more noticable that he gets instructions wrong.. Which causes a shutdown. I worry for him already for when he becomes ds1s age.

If everything 'organic' becomes ruled out.. I wonder if it maybe being a sign of a huge shutdown..

The otehr thing to watch is sleep: ASD kids (adults all of them LOL) getb into routines, even with sleep

But teens physically need more sleep, that's a scientific factoid.

DS3 shuts down when he is tired, completely goes, epilepsy stuff negative but that much.

is there any way you could try to help ds get mroe sleep and see if that helps?