Could you please not be autistic right now?

[KOKOagainandagain]

I am having trouble with DS1's totally understandable lack of empathy.

Since January my mum has had a stroke and a fall both requiring hospital stays. She was discharged to my brothers but has now been readmitted having lost vision in one eye and sudden onset severe dementia.

The context makes no difference to DS1 referring to me as a 'fucking r**d'.

Can't he just be NT for a while?

and

It sounds as though you are having a tough time, KeepOn. I totally understand where you are coming from. Just a 5 minute NT break would make the world of difference

Thanks. I know he can't be NT for my convenience but it is bloody hard at times. I know I can't retaliate or let rip so I am avoiding where possible or combining physical presence with detached emotional presence.

You're a better person than me if you don't ever let rip

Any chance you can snatch five minutes with and for real?

30 minutes peace and quiet having a soak in the bath?

It is the unending-ness of it all that gets to me. The ability to snatch a break and even nip to the corner shop for the papers or similar without a child in tow sometimes lets me clear my head enough to get thorugh the rest of the day.

I seriously let rip a couple of weeks ago - tears, snot, swearing . Hence the avoidance. Don't want to cause damage - he still gets upset at me allegedly calling him fluffy bum when he was 5. He is now 13.

Ah. Yes. I know that situation too well. It almost makes it harder as you know you really need to rein it in and that makes it near impossible to do so.

I am a bit on eggshells with dd1 at the moment after seriously letting rip (to be fair she did nearly cause me to have a serious car accident because I had the temerity to be concentrating on driving instead of instantly reading the radio display ). She is being very wary which makes me feel guilty and so it all begins again...

Can't he just be NT for a while?

Yep, I've had that thought too at times. (Came close to screaming those very words at my DS last time we went clothes shopping, but just about managed to hold it in!)

I am sorry your mother is so ill and you are having such a difficult time. and

And you just know the more that you need them to be NT the more likely it is that their ASness is going to be in full flight. I hope your mother improves soon.

You know, DS1 can be truly awful about DS2, sometimes and I don't completely hold back. I point out that he's perfectly entitled to not like someone or something but I do not want to hear unkind words. Ever. Where empathy fails, sometimes rules about expected conduct can be a bit helpful.

It is bloody hard, Keep

It is hard. I was looking at him yesterday, pissed off that I was too distracted by a text from my brother to put on the password for MY computer so that he could watch some stupid minecraft YouTube video. I said 'you are coming off a little selfish at the moment, acting as if only you matter'. He said something unrepeatable. But I know that he feels hurt and that I will have to deal with bereavement soon for the first time in his life. He still cries about my dad even though DS1 was only 10 months when he died.

DS1 is at school during the week so I can go up (I am 250 miles away) tomorrow.

Ironically, my experience advocating and supporting my DS's makes me feel secure that I can help my mum.

I just spoke to the hospital about my mum. I fear that elderly care services might be as bad as disabled DC. When somebody eventually answered the phone they tried to fob me off. Wouldn't put me through to the staff nurse because I had spoken to her this morning (whilst I could her my mother calling for rescue from my brother and I in the background). We went through a charade where I asked a question and she said 'just a moment' and asked the nurse standing next to her - I could hear this over the phone. I just kept asking questions until she put the nurse on the phone. What a joke

I have an LA deadline for parental advice for DS2's SA at the end of the month. I was going to submit one paragraph with what we want (given the situation) as this is the only bit that would be quoted in the statement anyway. We have already submitted lots. Is this OK do you think or should I submit more info but miss the deadline? I think that all other parties have submitted on time.

Sorry to hear about your mum. We have something similar with DH's mum - dementia is awful and getting help for the elderly is just as bad as fighting for SEN provision. We really are the sandwich generation and it sucks.

My parental views runs into 10 pages. I know what everyone says about it being ignored anyway - but I was determined to say everything in it and have my voice heard. So I let rip and wrote (referencing back all reports) about our concerns.

It won't be quoted in the Statement but it WILL be included in the appendices so should accompany the Statement wherever the Statement goes - including any potential future Tribunal (if you end up with a NIL or having to appeal the Statement). So ultimately might be read by a judge.

There's no harm in expressing your frustration at his autistic behaviour now and then. You're his mum and other people won't be so kind as to continue to love him afterwards. Why not let him practice his reaction to your reaction occasionally?

Submit what you have and then add to it. They'd be stupid to ignore anything submitted after the deadline as you WILL be able to appeal based on the information that they didn't receive in time iyswim.

Yy . What Starlight said.

Ds1 needs to see his behaviour as the world sees it sometimes - not always through my 'I understand and totally get it' filter.

Tbh atm I am not taking my own advice. Given other stuff (ds1, my mum, writing up my phd thesis (selfish cow that I am) I am actually planning to move to a village with an allegedly good for SN school and provided that part 3 is OK to not appeal for placement until AR. Am I mad? The move would mean that we were close enough for Indi in terms of transport. I don't know what I am doing any more

The swearing is good - better than actual violence

I can live with 'fuck' but I have an issue with 'retard'.

When did this become normal?

I do try and have a mind to what would be tolerated by others - I don't want DS1 to be alone as an adult because we have tolerated what others won't. This doesn't help him.

But sometimes I want to come first - not all the time - just life and death stuff.

Adult services are just as bad as children's services with one caveat that I think you should be forewarned about.

They use "patient confidentiality" as a catch all to avoid telling you when professional care of your loved one is being down right neglectful
e.g
"Has my gran's water jug been refilled this morning?"
"Can't tell you that due to patient confidentiality"

Meanwhile Gran's lips are cracked and the dust on the water jug tells you she hasn't had the water jug filled EVER!

Red flags should go up when this phrase is used straight away, as it's so not about the respect or genuine human dignity and privacy you'd expect to be afforded a vulnerable adult, but instead all about covering arses esp in relation to social care. It's Orwellian doublespeak of the most despicable kind.

In relation to my sibling nowadays, as soon as one of us hears this phrase we gather the troops and perform a swift group intervention on the unsuspecting guilty carrot quick smart before they can get any ideas that not doing their jobs is even an option lol!

DS is just staring to "get" that on very rare occasions I need space too. If he can demand to be left alone and refuse all demands then so can I occasionally .

I am actually planning to move to a village with an allegedly good for SN school and provided that part 3 is OK to not appeal for placement until AR. Am I mad? The move would mean that we were close enough for Indi in terms of transport. I don't know what I am doing any more

I think I understand what you mean - appeal being when DS2 has secondary transition? It sounds very sensible - as you know I fear secondary transition as this will be my lovely LA's chance to strike in revenge. But as I'm now at that stage and the LGO has just upheld my complaint against them, I'm hoping that they'll leave us alone.

So yes, I think you're very sensible to wait for the "big appeal" at transition. Not sure about a house move tho - what with everything else on your plate!

TOWIE - I can't leave him where he is - Essex are evil (as you know). The final straw has been the collaboration in denial between the school and the specialist ASD teacher. In preparation for refusal to assess tribunal nearly all support has been withdrawn. Except now there is a huge reduction in support despite SA - even the home LA EP was getting red in the face about it.

Boc - they refused to give me info until I had set up a password. Except when they wanted info from me when apparently issues of confidentiality didn't matter so much.

Oh yes, I can cite example after example of Essex's double standards just in my DS's case - let alone anyone else!

Essex are totally and utterly immoral, devious, conniving evil bastards. In all my (very many!) years of professional working life, I have never met the like of such nasty people as its SEN department.

Just try not to overload yourself with everything (easier said then done!). PM me if you want to sound off.

Having moved from Herts for similar reasons, I am now in a position to say despite the enormous upheaval, sacrifice, enforced change of lifestyle and uprooting from friends and family, it was absolutely the right thing for us to do.

There was no future there.

Where I live is no picnic, and they aren't even remotely reasonable, but the key point is they aren't EVIL.

If imagine that similarly if I had lived in Essex, I wouldn't be there now.